Mom, where are you?

Year in review

2015-12-17T10:06:00.000-05:00

This was a great year for Mom and I. Health wise Mom has not had any major illnesses or hospitalizations. Her medication has been the same and she remains stable.

This year she was able to meet her Niece-in-law, her great granddaughter, as well her step great grandson

Update June

2015-06-11T13:48:00.000-04:00

I have not updatedmy blog in way too long. I guess when things are stable I do not feel compelled to write. Lately I have been contacted by several friends for advice, a listening ear, to question what I did or would do in specific scenarios. I have also received "KUDOS" from several people for my sharing.

I write to journal what transpires as well as share our story in hopes others may receive one take away....keep going. It is not easy. You will laugh. You will cry. You will argue. But through it all....you will love.

Remember that you parent took care of you and now it is complete role reversal.

Remember that your parent is the same person, just fighting with their mind to remain sane.

Remember that your parent did not ask for this. They are as confused as you are.

Remain calm. Remain positive. Do NOT treat them like a child, as much as you would like to. Try a little test each time you visit. Reemphasize the fact that if you do not see and hear what they do, chances are it is not real....it may have been a dream.

Enlist you PCP in helping you find a good Geriatric Psychiatry clinic or doctor. Make sure they do not over medicate your loved one. Ask about visiting nurse and at home care.

I will update later today a household checklist...things you can change to help possibly.

I am not a trained expert, just a daughter who has been living this journey for the last 4 years.

2015 Week 2

2015-01-12T02:06:00.001-05:00

This past week was a rough one for Mom. She had some intestinal issues, bouts of nausea and dizziness. She did not eat well and I believe that played a roll in it as well. The new residents still continue come in her room which aggravates her.

Wednesday evening the nurse called to tell me Moms blood pressure was 90/55. They said that she could not walk to dinner so they pushed her. She did eat, but after dinner when she went to get up she was very very dizzy and weak. They kept her in the dining room with the aides just to be on the safe side. I advised if they felt she needed to go to the ER just do so and call me. I didnt hear from them....no news is good news.

Thursday morning I called and they said she walked to breakfast in her own and seemed fine. What a difference a day makes.

Today she was in a great mood. She said she was ready to go eat...but it was only 3:45 so I told her she would have to wait. As I was sitting with her the room door opened and it was the new resident. She walked right in. Checked things out. Asked why Mom did not come out of her room. Asked why she always just sat in her recliner. I told her mom had vision oroblems. Then she asked me who I was. I told her I was the daughter. She spotted moms candy jar, asked what it was. I told her candy. Then she said "Does she share?" I replied yes with people she knows. She looked around some more and left.

Mom and I visited a little longer. She told me she was afraid of that lady. Then she said she came in one day and threw something and broke something. I then noticed the Christian mug the eucharistic minister gave her was broken. The handle had been broken off the mug. When I said something mom said I told you it was that lady. I showed it to the aides when they came in to get her for dinner and I asked them to be sure moms door remained locked.

I walked with mom to the dining area and left as she got settled.

You never know what to believe and what you will find when you visit.
I also never know what mom wilk remember. I do know today she was feisty and adamant that she did not like "that lady". I reminded her that part of the reason she wanted to move from her last place was that she wanted a friend. Her reply was ... I don't want her for a friend. Maybe I just don't want a friend after all.

I love my mom. I will be her friend.

Jan 7, 2015

2015-01-07T22:34:00.001-05:00

So I updated the blog with photos and some of the stories that correlate to them. It is so hard to try and capture then record and present the visits as they actually are.

Mom has days where she is so lucid and I think about bringing her home, then there are days like today where she refuses to eat, or dress, or get out of her recliner.

Today when I arrived, I was told that while she came down for breakfast, she did not eat her food. She had cereal and banana's which is her favorite breakfast. The aide told me they had to "push" her down for breakfast. Then she sat at the table and did not eat. When they questioned her, she said I already ate it, what is your problem. So they just let her sit until she asked to go back.

She would NOT come to lunch. She told them she did not want to go "OUT".

I arrived around 2PM to visit. I try to alter times I visit so that I can observe her at different times of the day. They filled me in and told me she was in a bad mood. Her room was locked so the aide had to let me in. As soon as I said hello, she said, "Oh it's Kathy". She immediately asked me if she to go? I asked her where we were going and she said I don't know but don't you see all the kids outside with their hats and coats on? I don't want to go. Do I have to go? I replied no Mom. We can just visit. Then she looked back at the window and said it's really getting dark isn't it? It was sunny and bright.

I believe that her vision is really beginning to get worse. She has so much trouble seeing things. I think she is afraid to say anything about it, but we NEED to know so we can make the necessary provisions.

She was sleeping on and off and I asked her if she wanted on of her "special" chocolates she got for Christmas. That always seems to make her happy. So I got the box out, and cut one for her. It was placed on a white Styrofoam plate and it was dark chocolate. She took the plate, placed it on her lap and in a few moments handed it back to me, telling me she was done. She had not even taken a piece. I said Mom, you didn't eat it, to which she replied. . . Oh, I thought it was all gone. This little scenario make me really believe her vision is worse.

She finally ate it all and I put the plate away. I sat and watched her drift in and out of sleep. I stayed my usual hour and then I had to go to an appointment. She woke up and said goodbye. Told me to stay warm and thanked me, like she always does for visiting.

It is hard to leave her there some days. I hate that I had to put her here, in a facility where they tell you what to do, when to do it, and feed you what they want, not always what you want. She does not ever turn on her TV. She never leaves her recliner except for meals or bed.

My mother was always active. She was a leader in so many ways. She was President of the Rosary Society. She was involved in quilting, feeding the homeless, involved in prayer groups. She and my dad started a group in Pennsylvania and ran meetings and enlisted the various speakers to visit the group for educatory purposes.

To see this woman, who raised 6 children and was involved in our lives just wasting away in a recliner is hard to accept.

I try to engage her in conversation when I visit, but her speech is fading. She can no longer find the words to express what she is trying to say. Common, normal speech is a struggle for her and a source of frustration.

I sat on Christmas and watched her on the phone with my siblings. I could see the struggle and watched as she pounded the arm of her chair as if keeping time, or banging the words from her head.
It is hard and sad and trying, I can't even imagine how she feels.

2014 Another year gone by

2015-01-04T22:23:00.000-05:00

Today after visiting my mom, I made the decision that I will post updates more frequently. I have thought about it all day, and tried to remember why I had not. 2014 was a very hard year on my family. For me personally, it was trying and stressful.

My Uncle was diagnosed with terminal cancer in October 2013. I would become a primary caregiver for him and spend his last few months here on earth with him almost daily. A choice I will never regret or forget.

His illness would have him spend countless weeks in the VA Medical Center, Mountain Home, Tennessee. His chemo treatment would last from Monday thru Friday and he had to remain in the hospital each time. His passing on April 30 would only be magnified by his wife, my aunt being diagnosed with Brain cancer. . . and passing away in September.

During this time, I would lose two additional Aunts. My dad was the eldest of 11 and he would lose 3 of his siblings in 2014. . . . sad, rough year for the Baileys.

So when I think about why I did not write or update my blog, I really understand . . and I hope you will as well.

~~= = = = =~~

Mom also had a very difficult year. She would have several falls and spend time in a rehab for therapy. She was hospitalized for an infection in her blood and would visit the ER several times.
Physically she is beginning to go down hill. Her strength and her stamina are beginning to become less and less. Mostly this is because she does not do anything most of the day, except for sit in her "comfy" recliner and "rest".

I am promising that I will post more, if for no other reason than that I will have a "journal" for myself in the years to come that I can reread, reflect and take comfort in.

= = = =

Feb 5, 2014

Whew....LONG day. Mom is moved and spending her first night in her new place.

She should be happier and hopefully life will be a lil better for her.

Not going back til tomorrow evening.

Want to give her time to settle in.

Excited to have a KEY and a door she can lock

This photo is the first day and first time Mom was going into her new "apartment" as she calls it.

She was place in Elmcroft of Kingsport in Heartland Village, their memory care unit.

= = = = =

The first was easy for her. I had already packed up her belongings and moved them from one facility to another. On moving day, all we had to do was sign paperwork at the old facility, put her in my jeep and drive the 3.5 miles to the new facility.

Our plan was to arrive in time for lunch, in the formal dining room and then go to her room. It went very smoothly. Mom, at that time was walking with only her white cane . . and could actually still open her own door, with her own key. Today, a year later that is no longer the case. We leave her door unlocked and she now has a "rolodex", her term for her rolling walker.

When Mom first moved in, her recliner had not yet arrived. I spoke to several of the staff and to her doctor as well and was told to get a recliner. Not a rocker recliner and not a straight chair. She would need to have the stability of a straight chair, but the recliner would allow her to elevate her legs. Looking for a chair that was small enough for her new room, comfortable and that would meet all of the requirements would not prove to be an easy task.

I finally found a recliner that would be delivered directly to her room. . .but not in time for move in day. The facility gave us the chair she is sitting in and you will see the recliner in future photos.

= = = = =

So the move was a success. Mom seemed happier. Things would progress along great.

Before the actual move, I asked Mom when she wanted to go. We had given notice and signed all of the documents at the new facility. We had her tested, had doctor approval, etc. I thought maybe she would want to spend Valentine's day at the old place, and move after the party. Her reply when I asked her was . . . "Why would I want to stay here, who do I care about?"

So . . . . .

She would spend Valentines day in her new digs!

and have beautiful flowers!

and her new chair would arrive!

and become her favorite place

well, except for when Elvis is in the building!

He would croon her with "Teddy Bear" and give her a token to remember him by

I guess it was worth missing her nail appointment after all.

After we got back to mom's room when the show was over, I asked her what she thought of Elvis. Her reply was spot on . . . He wasn't very good. I have heard better Elvis's.

This guy didn't know the words to the songs. He couldn't carry a tune if you gave him a bucket and his moves were just not at all right. Mom has loved Elvis her whole life. I remember when he died and she cried at the kitchen table. I was shocked that she would make a remark such as she did, but I was thinking exactly what she had said. The guy was horrible. Needless to say, she has not attended another Elvis show since she has been there.

= = = = =

March 18, 2014

Diagnosis...UT I.

Are we going fishing? Can I go to my original room?

She is there. Meds ordered. Phew. Always something.

Mom had a really bad day on this day.

She was off the wall. She was having trouble walking. They put her in a wheel chair and I had to take her to the doctor. They ordered meds and we would

just have to wait for them to take effect.

You never know with dementia if there is a medical problem or if the disease and the progression of it is what is happening. Mom has dementia with delusions and paranoia. It took me over a year to really come to grips with it. I would listen to what she said, but I would struggle with the reality of it. Then I had to wonder if she were in a demented state or if I should believe her. In many instances such as voices, or people outside or lights being shined into her bedroom at night, I would know it was dementia. But this was her reality and I had to learn to live with it. I learned a lot from the visiting nurses the year I had her home. How to rationalize with a person without sparking angst or coming across as I didn't believe her. It is not easy at all. The easy part is walking away, ignoring or just going on with life and letting her fend for herself. This would NOT be an option for me. I could never leave my mom, or neglect her. I get so worn out and so frustrated some days. I feel all alone because in actuality I am, but then I think about my mom. If I am feeling all of this, what is she feeling? Well this was the start of a six week struggle that would set us back and really get her decline started.

March 19, 2014

Going for CT then more tests

Mom would fall . . . and get admitted

March 20, 2014

March 21, 2014

Mom is moved from hospital to rehab for walker & mobility training

March 25, 2014

They would take her twice a day for therapy.....

and then reward her with?

Dessert was delicious.

We are not at all certain what it was....but it is gone now...

I had never heard of Pea-Pickin cake . . . but she seemed to like it!

April 5, 2014

Mom worked really hard. She exercised. Did all of the tasks they asked and ate really well.

I notice some confusion and some change in her diet. I thought it was because of the activities they were involving her in. I really didn't think too much of it. She a roommate that was horrific. The lady talked on the phone ALL day . . from early in the morning until late into the night. The staff hid from her. She was nosey and obnoxious. I would walk in and she would tell me what my mom did, what she ate and how she was feeling as if my mom could not talk. I would say thanks and go on.

It was really trying for mom and I during those weeks in rehab, but the was coming soon! She would go back to assisted living and her quiet little room. Back to what had become her normal!

April 5, 2014

Today is a big day. I had a meeting with the "team" about mom and when she would be released. When I arrived she was excited about the meeting and did not understand why she was not a part of it, since it was about her. I told her I was not sure, but that they had called me and everything would be fine. The good news was she would have a Good Friday release and be back in time for Easter!

April 18, 2014

Exit stage right!

So when they release someone, all of the staff lines the hall and they clap, sing and make tons of noise. Mom thought they would not do it for her . . remember she has paranoia and delusions.

Well we walked down the hall and a therapist wanted her photo taken with mom, then we walked into the therapy room which is next to the main door and they sang and clapped and threw balloons. Mom as thrilled. I have a video I need to locate so you can see her. It was if she was at an awards banquet and she started to make a speech.

Happy to be free at last . . .as she told them, There is NO place like HOME.

May 14, 2014

I misplaced something very valuable almost a year ago. I have searched high and low. I have cried, prayed and accused others of throwing it away by accident. Just now, while looking over items I may want to get rid of, I found it. I stopped and thanked God. My mother's and my grandmother's engagement rings and wedding bands are safe. Mom had them wrapped in these old tissues and I honestly believed that they were tossed into the trash. My guilt and angst over losing them will now subside. I have relocated them to a very safe place. No more storage in a zippy bag and tissues. No one knows how thankful I truly am. I will keep better track of them now. I will sleep better now. I can rid myself of the guilt I had over losing them. Wow. I feel as if a weight has been lifted.

May 17, 2014

Mom's med were messed up from March 19 till last Friday. She is now very Jerky and keeps looking off in the distance mumbling. She told me her letter was almost finished. You know the one asking for assistance. Now she smiled and said look at that beautiful dark headed baby. She almost fell asleep during her manicure. She can barely hold her head up. Still not eating right. Think it's time for a psych eval again. At the very least a call to Dr H. Slumping over now. Has barely spoken to me directly.

May 19, 2014

May 28, 2014

Physical therapy session in her room

June 9, 2014

Roger visited on while on a business trip . . .ironically it was his birthday!

June 10, 2014

Follow up with specialist . . .

June 16, 2014

June 22, 2014

Sneaking out on sleeping beauty. 90 outside. 75 in here.

She has a blanket on. Will visit again tomorrow.

#lovemymomma

August 16, 2014

August 17, 2014

Lunch
I go in to get Mom for lunch. Did I sleep thru the night. Yes. And you already had breakfast. I did? Yes. It is lunch time. OK. Am I dressed? She asks as she lifts her blanket. Hmm well I guess I am ready. Very confused. Happy to see her eat. Pot roast. Taters. Peas n corn n carrots.
Dinner

Ate one spoonful of fish and rice. No good. Let's have dessert. Angel food cake with whipped cream and lime drizzle. That she likes.

August 18, 2014

Turkey, stuffing, green beans and ice cream for dessert. What do you think she ate?

the answer . . .

August 22, 2014

Ziti ALL gone. Working on the spice cake now

August 8, 2014

Waiting to see the doctor.

What do you mean we are waiting for the Dr.

I thought we were at the bank.

How long do we need to wait?

Having a confused day.

September 30, 2014

New blanket to keep Mom warm. 6 year breast cancer survivor.

October 2, 2014

BBQ time at Elmcroft. The event was suppose to be a fund raiser for Alzheimers but I was one of the only attendees and they never asked for my $5. Before I left, I handed it over to the manager on call. Mom at a burger and salads. We had a good time but it was strange.

October 17, 2014

Would not go to dinner. Was visiting with her mother. Cheeks getting red like last time. Hmmmm

I always wonder what is going on when I go to visit mom and she says things like this. It is scary and heart wrenching. She is so tormented. So certain that things are as she "hears". I wish I could waive a magic wand and make her better, bring her back but I know that is not possible.

October 19, 2014

York Peppermint Patties . . . nothing better . . .

October 22, 2014

So you always come to visit when I have to eat....no it's 3:30. Not on my watch.

Her watch said 12. Problem fixed. Now she's hungry and has to wait to eat. Ha ha

She just ate less than 30 minutes ago....oh how our minds play tricks on us!

Halloween flowers for my Mom . . she loves flowers. Today when I get them I know she says they are pretty, but I also know she can no longer see them. I try to get colors that she can see. Her vision continues to get worse. Two years ago she had 5% in her left eye. Today, I would say it is less. In the past she could see bright orange and fluorescent green . . . today she can see the green on a clear, sunny day. It is sad to think that this woman who made all our dresses when we were young, and who made each of us a quilt when we turned 30 or got married . . .could no longer even see a quilt if you had one. It is sad to think of the losses she has endured, but she continues to go one. She continues to make the best of each day.

October 26, 2014

Marguerite called me. We were just talking about old times. She is a real talker that Marguerite.

I was thinking about Charlotte. She was also thinking about me. We were good friends.

This day was a confusing day as well. I believe it may have been a touch of "sundowners".

Mom does not have a phone so I know it was not real. She was good friends with Charlotte and she does think about her and we do talk about her from time to time. Days like this make me miss my mom.

October 28, 2014

Manicure day . .

November 6, 2014

Mom made the resident spotlight!

November 10, 2014

Had her hair done . . . look at my curls

My mom has poker straight hair. I have natural body and she is always saying something about it. She wishes she had a curl and I got the all. She is too funny!

November 14, 2014

Mmmm she says a nice cherry one....cherry candy kisses....

November 19, 2014

Thanksgiving celebration with Mom at Elmcroft.

The facility typically holds holiday celebrations a weekor so before the actual day so families can visit their loved one as well as celebrate in their own homes with family.

I will update stories and additional December photos tomorrow.

I have spent almost 5 hours this evening updating the blog and have vowed to be more

timely and share more of the stories in 2015

I hope you have enjoyed this update . . .

May you never have to venture out on this journey with a loved one. . .

But if you do, remember that you will be blessed is many many ways!

2015-01-04T19:40:00.000-05:00

2014-01-28T00:34:00.002-05:00

Where does the time go? It is already January 28th and we are preparing to begin the 2nd month of the new year.

Life here with mom continues to be constant. After 2 years in her present assisted living facility, she and I have decided that it is time to move. I have spent many days looking at and speaking with new facility administrators and we have decided on her new "home".

I cannot help but have a heavy heart every time I leave her, because she is miserable where she is at. All she wants and talks about is having a friend. Someone to talk to, someone who would make her life a little brighter.

While I love all of the residents where she presently lives, most are so advanced with their dementia and Alzheimer's that they no longer know who they are, let alone who anyone else is, or even where they are.

So her new place is lovely. She will have a room on the end of the hall and have 2 walls of windows which will be wonderful for her vision. She will be placed in the "memory care" unit, but after her psych evaluation it was determined that she is a level 1; or highly functioning.

We have already given the mandatory 30 day notice to her present facility, and I am thinking that maybe we will move her this week . . or maybe in time for Valentine's day.

I have been running with her to doctors, getting paperwork in order, bringing her belonging to the new facility and setting things up, and going what seems like nonstop, but it is all for my Momma and for her, I would do anything.

Once she is in and settled, I will update and hopefully post some photos of her in her new "home".
These are photos from the facilities website.

Holiday Season

2013-11-26T02:16:00.000-05:00

The holidays season is officially upon us. Thanksgiving will be celebrated in households all around the US on Thursday and December will be right on its heals.

As you sit at the table this year, remember to be thankful for your parents.

I was sitting the other day reflecting on how as a baby, we rely completely on our parents to eat, sleep, get dressed, stay clean and dry. Our first method of communication is crying . . . we have a cry that means we are hungry, and a cry that means we are wet. We have a cry that means we want attention, a cry for pain. Each cry has its own meaning.

As we begin to grow and become a toddler, we start to communicate verbally. Often it is a point and grunt. Then a word or two until we are fully vocal. As we continue to grow and learn, we rely less and less on our parents for each action and start to gain some independence.

One day, we are old enough to go to school. It may be preschool, or kindergarten, but we are away from our parent for several hours. We begin to rely on teachers and classmates.

As we progress in age, into teen then young adult, that constant tie to our parent for all of our wants and needs lessens. We start to exercise our rights and our freedoms.

One day we leave the nest completely, either going off to college or simply moving out to test our wings . . . solo.

We start to neglect and take for granted all that was provided for us by our parents. We want to do things our own way, in our own homes and in our own time.

Many of us get married, have children and begin the cycle again, living our lives as the provider; to our own families. Our parents try to interject and to give us guidance. Sometimes we take it, and other times we do it our own way.

Our children go thru the same cycle we did . . . from complete dependence on us to independence and so on.

Our parents also aging begin to rely on us as well. We need to make decisions as to what is best for them. How do we balance our life, that of our children and our parents? It is a role reversal that many fear, and many have no idea how to react.

Our parents on the other hand become that little child, that we started as and need us. . . to care for them, to feed them, to clean them, to wash their clothes, to do their shopping, to lend them our guidance and help them survive.

Role reversal is probably one of the hardest changes in life that one can encounter. It means now taking the lead away from our parents and making them understand it is for the best.

Role reversal means that our parents, who we have looked up to and admired our entire life no longer can provide that nurturing to us.

Role reversal means that we are now a parent to our parent.

As the holidays approach this year, make an effort to touch base with your parent. Make every effort to call them, visit them, share with them.

As you sit around the dinner table this Thanksgiving, be thankful for your parents . . for all they have given you . . for all they have taught you . . .

BE thankful that you have them still and that you can say I love you . . .

One day. . . they will be gone and it will be too late.

Photos from the last several years

2013-09-27T02:31:00.002-04:00

New Jersey Cottage in the Spring

Mom just after arriving at the assisted living
facility in 2012

Winter 2012

Winter 2013

Winner of the big prize
Easter 2013

Winnings!

PJ Party and Ice Cream Social
Early summer 2013

Mothers Day 2013

Surprise from Ruby & Ikey
Spring 2013

Memorial Day
2013

Beautiful Mama

Memorial Day Celebration

Summer surprise 2012

2012 with the Grandsons

Grandchildren

Surprise! Hugs from Ruby Bailey

Halloween 2012

Summer 2012

Mom & I
2012

Corn Hole Tournament!
2012

Birthday
Dec 2012

Christmas Party 2012
Ikey, Mom & Ruby

Christmas Party 2012
Me, Ikey, Mom & Ruby

Assisted Living Christmas Party 2012
Santa gave Mom that stuffed animal which she
REFUSED to put down

Christmas Day 2012
Present from Guy & Cathy
the Florida Bailey's

Christmas 2012
Fra la la ra ra . . .
Chinese Buffet

Our Valentines from Mom
2013

Mom on Valentines Day
2013

Mom in July 2013
Returning from granddaughter's wedding

Big Trip

2013-09-26T18:00:00.002-04:00

In April Mom went on a BIG trip. Kristen her granddaughter was getting married and her shower was in April. She did not want to miss the bridal shower so off to Ohio we go. On the way, we travelled thru Tennessee, Virginia, West Virginia and then Ohio. The trip should have been a straight shot, but when you are travelling with a senior citizen, often they are not able to endure the long ride so we had to stop overnight.

We selected Ripley (believe it or not) West Virginia as our stopping point. Once checked into the hotel room, and ready for bed it was like a teenagers sleep over party. Mom got the giggles and was just talking up a storm. She was giggly and giddy like a teenage girl.

The ride to our stop was fairly uneventful except for the Tunnels that mom read about and knew we would be going thru, she said there would be three in all . . . hello? You read this where? She said that the papers we had, with the directions told all about the tunnels that were coming up.

I knew nothing of them nor had I ever travelled this route before so I was totally shocked and a little scared when the first sign appeared stating we would be required to pay a toll, to go thru the tunnel.

Mom said I told you. Why didn't you believe me? I don't know how I knew, but I know there will be more. . . there were . .

Today, if you ask mom about the trip, she no longer remembers even going . . . or going back in July on an airplane for the wedding. How sad it is that she travelled that distance not once, but twice and does not even remember.

I was going away a few weeks back and when I told her about my upcoming trip she said . . . you have been doing an awful lot of travelling . . . me? What about you I replied. Her reply to me was where have I gone? I have been here in this "apartment" all alone and have not even gone to my condo. Where have I gone. . . . so I told her. She said Oh yeah . . that. . ..well I forgot about that.

What people don't understand or recognize is that while when you speak with her, she may seem okay . . she really is declining. She continues to struggle to find the right word, or uses a phrase that is not correct. She often does not remember names or places, but can describe them and usually I can fill in the blanks.

Mom and I
on her love seat in
her "apartment"

Fashion Show

2013-09-26T17:30:00.001-04:00

Halloween 2012

I never thought I would be sharing this story, but it is comical so I felt the levity it lends to the saga that is Dementia would be welcome.
Mom needed some new underwear so off to WalMart we go. My friend Sheila had been staying with me from NJ so we both went and looked around at the different types, sizes, etc. Not exactly sure which size to get because of Mom's recent weight gain we decided to get a package, but then also get a single pair, same style and size as the package. If the single pair worked then we knew the package would work. If not, we could return the package and exchange for another size.

Mission complete off to visit Mom in her "apartment" as she calls it now.

Knock, Knock, Knock . . . who is it? It is Kathy and Sheila . . .

We go into her room and begin chatting. We tell her that we purchased the underwear that she wanted. First statement . . . did you get the right size?
Well funny you should ask. We got a package and one single pair of panties the same size. If you try on the single pair we will know that the package will fit.   Oh she says, that was very smart thinking.

As we continue chatting, she gets up and goes into the bathroom. Not thinking anything of if, Sheila and I just look at each other. Slowly the bathroom door opens and there is Mom . . . New Undies . . . and her shirt. She says, "I think they fit, what do you think?"

Sheila nearly fell off the bed.

"Mom", I say "You did not have to try them on now".

"Well you are hear so why not. What do you think? Do they look okay?"

Now, if Mom was still in control of ALL of her faculties, this would not have ever happened. She would not have ever come out of the bathroom in her panties, but Dementia is funny. It is as if the "filters" that once controlled our life, and our judgment are now gone.

I can reflect on these incidents now and smile. I can recall the incidents that I find comfort in and let those bad memories slip away.   The pain and the dismay I felt initially have slowly materialized into care, compassion, love and pleasure. Yes I did say pleasure. I love to see the smile on Mom's face when I do something good for her. I love to feel her feeble little hand in mine when we are walking. I love to sit next to her on the love seat and chat.

I feel compelled to continue spending more and more time with her, out of fear that one day I will no longer be able to.

I hope you enjoyed this little Fashion Show story.......it brings a smile to my face

Lima Beans

2013-09-26T17:14:00.001-04:00

I don't think I like Lima Beans anymore . . .

So when we are young, and its time for dinner we often cringe when we are told what is being served. I was sitting with my mother the other day and as I do almost every time I visit, I ask her what she had to eat. It was an evening visit so I asked what she had for dinner. She said, "they fed us meatloaf, mashed potato's and lima beans. I did not eat the lima beans" to which I replied, "You did not eat the lima beans? All those years when I was young and you forced me to eat them, and you did not. What's the deal with that?" Her sheepish reply was, " I use to like them, but I don't think I like them anymore so I did not eat them. What's wrong with that?" I really had no comeback.

Life evolves in ways we are not accustomed to. When we are in our youth, we rely on the advice and instructions from our parents. We listen to what they say, and do what we want. We take our lead from them.

Each trip to visit my mom is very different. I never know what I am going to encounter. I don't know what I will hear, what I will see or what she will be doing. Most days however she is just sitting in her room, on the love seat, hands folded in her lap, feet up on the ottoman staring into space.

She has a TV which is rarely on. She has her bible and some reading material, but with her vision impairment she rarely reads anymore. I bring her the church bulletin and she struggles to get thru it but always asks each week if it has arrived. She complains constantly that she is having more and more trouble reading things, but does the best she can.

There are activities scheduled where she is living, but she does not always participate. She picks and chooses each activity she will attend carefully. Music and entertainment typically are the draw for her, but even that is hit or miss. She enjoys going but does not always enjoy getting there.

It has become harder and harder for her to walk as her balance and gait have changed. She gets winded now, where before she could do laps in the hallway .. . not fast, but at least she would try.

Lima beans have been removed from her diet . . at her own choosing. It just struck me funny that suddenly she no longer likes them. I can remember vividly sitting for hours at the dinner table because we were forced to eat them. She would say you can sit her all night long, I don't care but you WILL eat them. As I got older, I would knock them off my plate into a napkin and since my job was to clear the table, I would throw them away. This kept me from having to stay at the table all night. I don't know if she knew that. But I do know she will no longer be eating Lima beans. . .

This photo is of Mom and her grandchildren

(l-r) Thomas, Elizabeth, Mom, Jeremy and RJ (in the rear)

Breakfast . . . food for thought

2013-09-26T13:41:00.000-04:00

As we sat eating breakfast at IHOP, I could not stop myself from staring at my mom. She was excited to be out. She was thrilled with her "French pancakes" (crepes). She was loving the lingonberry sauce. Each bite she took, I silently watched as a portion slipped off her fork, onto her lap. She was not even aware it was happening. She ate ALL of her breakfast. She drank her coffee and was just excited to be out. It saddens me to see her changing literally before my eyes, but I cherish each day we have and would never make her feel inept, or out of place by embarrassing her about how she uses her fingers to push the food into her mouth, how her clothes are covered with food particles much like a child.

I would never ignore her or begrudge her the little things in life that make her so happy. I am at peace with my decision to alter my life, leave everyone and everything I know behind and care for her.

I am proud to call her mom and take care of her; as she did me when I was a child. Role reversal can be quite challenging. It can make even the strongest person collapse and feel weak, but it is by far the most rewarding and satisfying thing I have ever done.

I have see her more and more as a child these last few weeks. She asks me silly little things that I know she should know, but I answer and act as if she has never asked before. I have morphed myself since Jan 2011 when I found her unconscious on the floor; heat off and body temp down to 84. I have grown in ways I did not know I could and I have become to appreciate my mother more now than ever. I know that Dementia is not a curable disease.

I know that one day, she will no longer know who I am. I know that when I mention my siblings, or an in-law, when she asks who I am talking about it is the disease causing her not to remember, but I just take the time to explain again and now know, do not get upset because she is not in control anymore. I have laughed, cried, yelled, screamed, and even walked out on her. I have cursed, sworn and thrown my hands up . . . before I knew the depths of this disease. Today I am calm, almost too calm some days. I just listen and go on. It is when I get home, when I am alone that I begin to feel sad.

I miss my Mom and I see her almost daily. The actual human being is the same, it is the mind that has slipped away. I miss my mom, that lady who made all my clothes growing up. The bowler, the Rosary President, the Cub Scout Leader, the ice skater, the best Swedish meatball maker, the sewer. The one who got me hooked on CSB Soaps . . . the mother who drove us everywhere we wanted to go, the first person that refurnished and updated a room using money she earned refunding. I miss her laughter, her silly little idiosyncrasies.

My mother and I have not always been close. We have gone full circle. We have definitely had our ups and downs but this is by far the best UP I know.

I love you mom!

Role Reversal

2013-03-04T23:19:00.000-05:00

Role Reversal - we have all heard the term. What exactly does it mean? When does it occur? How do we cope with it?

Dictionary.com says:

Main Entry:	role reversal
Part of Speech:	n
Definition:	a circumstance wherein two people adopt the opposite role of their normal one or switch normal roles

Wikipedia says:
In psychodrama, role reversal is a technique where the protagonist is asked, by the psychodrama director, to exchange roles with another person (an auxiliary ego) on the psychodrama stage. The former assumes as many of the roles of the other as possible and vice versa. In that way, one is able not only to experience a different perspective of the situation (to walk into someone's else's shoes), but also to witness one's own behaviour from the other side. Thereby, the role reversal can bring significant abreactive and mental catharsis, insight, and transformation.

Beth's D4Dementia blog:
From the ultimate role reversal, however, comes the ultimate lesson. Cherish every moment you have with your parents, however irritating, irrational or restrictive their parenting may seem. If you ever have to become their parent, you will understand where they were coming from. After all, the apple doesn't fall so very far from the tree.

Oxford Dictionary says:

Definition of role reversal

noun

a situation in which someone adopts a role the reverse of that which they normally assume in relation to someone else, who typically assumes their role in exchange: one marriage counsellor makes use of role reversal, inviting husband and wife to pretend to be each other

My definition of it is that Mom can no longer make sound, concise, accurate or viable decisions on her own, and I must become the parent to be certain that she is safe, cared for and happy.

At first, it was making sure that we were on top of all the medication that had been prescribed. Being here for her when the OT, PT and VRN arrived. Being sure that when we did have a doctor appointment, she was telling them exactly what was going on and not leaving out any of the important information, which could ultimately mean a prescription change.

I did the cooking, cleaning, laundry, shopping, bill paying, and everything else that comes along with being a parent. I made sure that she was safe, and happy, and that her needs were met.

I worked with the visiting nurses that would come into her home to be sure that not only did she follow through on her exercises, and her medications, but that she felt comfortable with their decisions.

I met each at the end of the walkway, pretending to smoke before they arrived and filled them in on what I wanted to be sure they covered with her. Unbeknown st to her. I did whatever I could to make sure that she could remain at home, where she wanted to be.

Role reversal . . . definitely not an easy task for any child. No matter the age. Our parents are proud people. Most from one of the last generations that really cared about family and pride. Our parents spent their lives making sure that WE the children had what we needed, had clean clothes, had food, had a roof over our heads. Doing whatever it took to provide for us. In my family that was not an easy task. There were six children . . . all needing their own things.

We were not wealthy by any means, but we never went without. Our parents provided for us the best they could and they never let us feel like we could not have something.

Mom was a stay at home mom! She cooked, cleaned, and raised each of us . . . without baby sitters, or a cleaning lady, or any assistance other than her own mother on occasion. Mom worked harder at home raising the six of us than many mothers who worked outside the home.

Role reversal . . . I had to tell her she could not, I had to tell her do not, I had to tell her please don't. We fought a great deal. She was not happy that I was trying to take over, but what she could not understand was that she was not capable of doing it all alone any longer.

One day I got a call from the home owners association telling me that they had received mom's condo fees . . . not once but twice. Because of the way they are set up, the could NOT give her a refund so she would be paid in full for TWO years. During our conversation, I asked if they could at least come and speak with her, so that she would be aware of what she did. The lady was wonderful. She made copies of everything, came to our home and explained it all to mom.

Mom, you can no longer pay bills by yourself. I need to know what you are doing and when so I can prevent this from happening again. She did not like it at all, but reluctantly gave in.

On another day, I could hear mom on her phone in her "office" speaking with the cell phone company. She was saying " My phone has been stolen. I know that the bill is very high, in the thousands. I want to report it and I want to know how I will go about paying it." "Yes I told you, it was stolen" "Yes the Jitterbug"

As I sat on the couch in the living room, I could not help but laugh . . .she was on her Jitterbug . . . she was calling from the stolen phone.

When she came out of the office, I asked what she had been doing and she said none of your business . . . I was handling something that needed to be taken care of. Okay, I replied . . .do you need any help? No she said, I can still manage my own affairs . . .

Role Reversal . . . the hardest action a child will ever undergo. The trials and tribulations of taking "ownership" of your parent.

My mother still today, after 2 years fights me on issues especially finances. She believes that she is fine and that I don't need to do everything for her. Usually she says, "I could probably still do it, but you won't let me."

My mother was a strong woman and in many ways still is. She was always independent and today, wishes she could be. She does not understand that if left on her own, to manage she would be a failure, and that I am doing what I need to do, to prevent that from happening.

Role reversal . . . becoming the parent to your parent to protect them from them self!

2013-03-02T05:03:00.003-05:00

I can hardly believe it has been over a year since my last post. Where has the time gone? I am providing a brief update with photos for now, and will retrieve the stories from last year to post at a later date . . .very soon.

For each of you who have written and commented to me privately, I appreciate and enjoy your support. It has been a road I never imagined I would be on, and I am learning so much about who I am, and who my Mother is. I even think I now know what I want to do when I grow up! I want to be exactly like my Mom and I want to be an advocate for those who in their Golden Years are unable to fight for themselves!

My work with Cancer patients will continue, but I will now also branch out and work on getting Gram's House in order! Volunteers always welcome!

The longer I am around the patients in the "memory care" facility of the Villages Assisted Living, I realize that God is truly kind. I mean that in a wonderful way. These poor patients don't know their names, where they are, what day it is and how to get from their room to where they eat. They wander around all day, looking for a way out . . . a way to go home . . . God has removed their pain as well as their worst memories. Basically they are "existing" because family and caregivers are making sure they are safe. My family is fortunate because our Mother is not like them . . . well at least not all the time, yet.

I can tell you that it has been a hard road for not only my Mom, but for me as well.  The pain I have endured watching her slip away over these last two years is something I never imagined nor can most understand.
A few years ago when I lost my friend suddenly I discussed with her husband my struggle with a loss, as sudden as hers; or watching someone who has a terminal illness, where nothing can be done.   Today, having watched my Mom struggle as she has, I would definitely have opted for that "sudden".

Mom's health is wonderful . . . it is her brain that is failing her.   She continues to ask to go home, to go see her condo, to at least be able to visit.

Feb 5, 2012 is the day I had her placed in assisted living. She still has no idea how long she has even been there.

Today March 1, 2031 I took her laundry back to her and listened as she told me the story about a co-resident who keeps coming into her room; stealing things; and bothering her.   I have empathy for her struggles, but I cannot control them. I don't have the answers for her, and I cannot make the facility react they way Mom would believe they should. I listen often silently and just say well, okay, how about, what if? She thinks I don't care, but I think I sometimes I care too much (if that is possible).

The photo here is from Mom's first fall back in the end of April last year. She was so afraid to tell anyone because as best she can recall that is the reason she is there. She remembers that I came in from NJ, found her on the floor and that is all. She does not remember the stories she told me, or the dementia with psychotic episodes.  She does not remember that I had to have someone break in. She does not remember that she had the heat turned off, or that the door leading to the garage was wide open. She does not remember that it was in the low 30's, and the her body temperature had fallen to about 86 if I remember correctly. She does not remember the ride in the ambulance; not once but twice. She does not remember the video conference the following day, which made the ER physicians have her transported to a Psychiatric Geriatric Hospital. She does not remember the ride in the County Sheriff car from the local hospital to the Geriatric hospital. I guess that is a blessing for her. She could not see the bruising on her face due to her severe vision loss and did not realize that we could all see it.   When I asked her what happened her reply was simply, "I fell". Are you going to hold that against me? Use it to keep me here? Then proceeded to tell me she has several friends who have fallen and they are still able to live at home, ALONE!

Psychosis is a loss of contact with reality that usually includes: False beliefs about what is taking place or who one is (delusions); Seeing or hearing things that aren't there (hallucinations).

This fall happened just about a year ago now. Thankfully she was not injured worse than the marks on her face. She was "packing to go home" because she knew I was on my way, and in her haste with her belongings piled up in the center of the room, tripped and literally fell into her closet. She did not tell the staff or anyone - they saw the bruising. So you see; Mom has some rationalization still. She knows what will and will not get her into trouble and knows when to use it. Additionally I will add to this segment by saying . . . I was NOT on my way to take her home. She had only been there a little over two months at that time.

I am happy to report that she only had one other incident where she fell. I had taken her to her appointment with Dr H. her favorite doctor, who she believes will one day tell her she can go home. I placed her in the chair in the lobby and since I do not smoke in my car while she is with me went outside while we had some time prior to the appointment. I think I just lit the thing when the nurse came out and asked me if I was with the woman with the "white cane". . . .look at her, look at me . . . do you think? Well anyway I ran inside to find her on the floor. She was not comfortable in the chair I told her to sit in so she decided to move to the other side of the waiting room . . . did not know where the furniture was situated, did not ask for help, or wait for me to get back inside. She thought she was going to sit on the chair, and missed. She was so upset with herself and agitated . . . because again, that "first fall" is what has made all of the changes in her life these last two years.

April 2012

Easter Season was a good time because we had visitors. Ginny and her children came in. That always makes Mom happy, when her children and grand children come to visit. Here is a photo from Easter . . . .

L - R Virginia (Ginny), Elizabeth, Kathy and Mom front & center . .

May 2012

Whenever the facility has an event for a holiday, I make every effort to attend. Typically my friend Sheila and I volunteer our time and culinary skills. Mom is always thrilled to have "guests" and as you can see, she loves to be photographed. All you have to is say "SMILE" and there it is, broad across her face from cheek to cheek. She is still the same beautiful young woman my dad fell in love with over 60 years ago! and I know what I will look like in years to come . . ha ha ha

Memorial Day, waiting for the festivities to begin!

June July 2012

Summer was fun with Mom. On good days, when the weather permitted, we would go sit outside on the patio. The facility has a wonderful activity coordinator. She takes the residents out for walks, drives in the van, and continually strives to keep them entertained and engaged.

Our family reunion is held every other year, and in 2012 it was held just about 100 miles from her. My siblings were able to come in and visit. I got the facility to let us use a sun room in one of the other buildings on the property. My eldest nephew came in and surprised Mom. He escorted her from her building to where the rest of us were gathered to have a dinner with Mom. It was a wonderful surprise and evening. The following is a photo of Mom with her Grandchildren who were present.

Enter Mom with Jeremy

The Cousins

L - R Thomas Frank, Elizabeth Frank, Mom, RJ Bailey Jr, and Jeremy Bailey

December 2012

Mom's Birthday outing at Olive Garden

Celebrating Christmas with Family & Friends

This is a photo from our family Christmas Party.

(L - R Kathy (me), Rodney Dow (Ikey), Barbara (Mom), Ruby (Mama)

The following are from the Villages Christmas Party

My friend Sheila, whom I would be lost without . . she has been a godsend! not only for me, but for Mom as well. Dad always called her the "red-headed step-child" . . . . Mom now calls her #4 - then says, "Daughter #4#

And what Christmas party would be complete without the Ho Ho Dude! Santa gave each resident a present. He came in and gave each female a stuffed animal, and each male a ball cap. Then the residents' families provided a wrapped gift for their loved one. Santa gave Mom diabetic socks - she is not a diabetic, but she has edema, so they were a welcome gift and she was wondering how he knew! Gotta love it! Look close and you can see her Rudolph in her lap. She would NOT put it down!

Valentines Day 2013

So as I end my update of 2012 I place the first 2013 photos up. Valentine's Day photos. How appropriate to complete the year in review with a day of love. My heart was touched when as we were getting in the car after her outing for Valentines day and she said "This is the best Valentines Day I ever had. Dinner, candy, balloons. Your dad never did this!" Well, I guess I have come to realize that I will not have her forever so these little events we have shared in last 12 months, have been as special for me as they have for her.

And no, that is not a bruise on mom's head . . it is residual ashes from Ash Wendesday

Valentines Day . . . Supposed to show your love

2012-02-14T22:13:00.000-05:00

Today was a very hard day . . . I had a card, candy, a new clock . .BIG NUMBERS - Black & White . . . . all prepared and ready to take to the "Villages" for Mom.

Early in the day my cell phone rang. I picked it up and it was a nurse from the Villages calling for Mom. The nurse put Mom on and all she did was SCREAM and YELL at me. She told me she had a doctor appointment in the evening at 5 PM. She told me that my brother was outside her window and that he was not allowed in. She asked me if I was in New Jersey? She was angry, upset and very confused. Then she said, "I am gonna throw this damn thing on the floor and shatter it into a million pieces."   I asked what she was talking about . . she said my cell phone and then the line went dead.

I hopped in my car and did the five mile drive to the facility . . . . as I got to her hallway, the nursing staff was carrying chairs down the hall. They were going to sit outside her room. She was threatening to break out . . she was saying that there was a truck on the way to pick her up, and her things. All of her belongings were piled in the middle of her room about three feet high.

The bag of goodies for Valentines Day was placed on her bed. I never even told her I had it. I just left it, hoping that when she finally calmed down she would see it, and appreciate it.

She told me she had spoken to a judge, she had been discharged. She and her friend (imaginary) Joseph were talking and she knew about my car accident. She asked what type of surgery I had had in Elizabeth General Hospital? I asked if she knew where she was. I said Elizabeth General is in NJ and we are in Tn. She said I know where the hospital is, but you have been in NJ

She was livid because I have not allowed anyone to visit her . . . I cannot make family, friends or anyone visit if they elect not to. . . How do I tell her that? We are in this alone - me and her for now . . .

She asked what I was arguing about in the hallway with her brother Richie? He is in Arizona and they have not spoken in years . . .

So my question today, after hours of thought and many tears is how do I continue to deal with this?

For a year I have done everything I know to do to keep her safe, to keep her home and to keep her from being put away.

I have made sure she has had everything she needs, just as she did with me as a child.

Today she said to me, I am the parent and you are the child . . . so I replied, then act that way.
Today she told me that she no longer trusted me, I am a liar, a thief, and have taken everything she owns.
She told me that it was HER condo, not mine and she wanted to go home

As quickly as she said all that, she told me about the voices, and the people she has heard and seen outside her window.

I am not a rock, I can feel the cracks starting and I know it is only a matter of time before I myself have a breakdown.

I need a break, I need to get away, I need someone to tell me I am not those things she says.

If you have never lived with dementia, or a mental illness, you don't know how hard it is to look at the person and take what they say, because they look exactly the same, but you know in your heart they are gone.

I struggle to keep calm, to keep from responding and saying something I will regret, but that woman who is sitting there, yelling at me is NOT my mother. I know that and I believe that, but she looks exactly the same.

For years I wondered if it was easier to lose someone instantly, as in an accident or to know they are sick and at least be able to say good bye.

Today, I know that I would rather lose my mom quickly. To see the internal struggle she is going through.  Her mind is tricking her, changing her, making her vanish before my eyes, but physically she is healthy.

I miss my "Mommy" . . . I want my "Mommy" and I pray for her each day.

The picture above is from my web cam, just after the beginning of the year, prior to her recent hospitalization. She continually struggled with the voices, and sat for hours, trying to escape them. Today they are still present. She cannot tell what is reality or what is created by her, in her own mind.

I wish I could do something, anything to help her. I am tired, I am saddened, I am lost and lonely. I feel helpless against this disease. My helplessness against this makes me feel like a failure. How do I continue to pretend to cope?

2012-01-18T16:22:00.003-05:00

So the day has progressed quietly which is a blessing. The visiting nurse came by - she will come 2x a week for a month and then reevaluate the plan. I was shocked when Mom confirmed that she is still hearing the voices. She often denies it unless she is talking to me.

Today was garbage day - as some of you have already read in my previous posts, there has been some issues with the garbage men and mom's garbage can . . . the ROCKS that broke the compactor. Today was a good day - they picked it up, no issues. There was garbage on top of her can, or so she heard thru the wall, but I reassured her that this was NOT the case.

While I was outside bringing in the garbage can, I ran into our next door neighbor - Mom's main source of issues. She has believed that the lady has been in foreclosure for some time, believes the woman is stealing her money, her mail, her phone service, hacking her TV, etc. The woman is a SWEET little old lady, who I happen to get along with quite well.

The other day, Mom advised me that she went to the neighbors house and told her off . . . I had no way to confirm it shy of asking the lady next door. I was reluctant to do so because if I did, and Mom had NOT been there, how would I explain it. Well today, she told me that my Mom HAD indeed come to visit her. She said she invited her in, but she said she had to go back home. I let her know we are having some issues and asked her to point her towards home if she ever saw her out wandering . . .this in my newest concern now. I have to go for PT twice a week, and also have shopping, banking, etc. . . . . now I will be wondering if Mom is leaving the house when I am gone . . a new stress that I am not looking forward to.

It is so hard to decipher what is real and what is not in this ordeal. My webcam helps but only focuses on a small area of the house.

New day!

2012-01-18T08:49:00.005-05:00

Today is a new day. My feet had not hit the ground and I heard all kinds of noise. What was mom doing this early? Well up I go, down the hall and she is in the guest bathroom searching frantically for her chap stick! They stole her chap stick? Okay Mom, we'll get a new one.

I walk into the kitchen and put the coffee on . . . They stole all of our soup spoons . . .No Mom, they did not here . . . let's count them . . . . . an even dozen . . all here....Then it must have been the other spoons . . . no, they are also in here.

NO! Not again, look there is an empty space where the cereal was . . They stole the Cheerio's! No Mom, you finished them yesterday and that is why there is a space there . . I did not, that was the Special K's . . . Now what is going to happen? she cries.

We get the cereal, pour her coffee and sit down . . . the voices are back . .or should I say they are here. An increase in meds last night does not seem to have taken effect.

The article that was in the NJ newspaper is going to be in the Kingsport paper today, she states. I ask what article and she replies the story about B J B being an alcoholic. No Mom, they don't out that in the newspaper, nobody cares.

The story is going to be on the news at 8:45AM, we can catch it there. Then it was at 10PM, now it may air at noon!

Are you confused yet? I am . . .we have now officially been up for about 40 minutes .. .. just a sample of my day and I have until 10PM . . .until she will finally sleep . . . more later!'

See ya in the Funnies . . .

2012-01-18T01:10:00.003-05:00

January started off not so good for Mom. We have already had a trip to the ER which resulted in an unexpected doctor visit, and daily calls from me to him as a follow up.

Our ER trip happened because when I arrived back home after physical therapy and having my car repaired I noticed that the blinds were drawn and the house appeared dark. For those of you who know my Mom, or me you know that she is legally blind. Her routine does not vary too much from day to day . . . she is very much a creature of habit. . . . seeing the blinds was a tip off that there just might be something wrong . . . and it was. I always ring mom's bell; even though I have a key because I don't ever want to startle her . . . when she did not answer after ringing twice. . . I knew there was really something wrong. I used my garage door opener and went in . . the house was dark...she was NOT in the living room where she typically sits . . . I hollered out to her and she said I am in here . . . .

She began to ask why she could not go downstairs and see Karen & Kristen (her daughter and granddaughter) I told her they were not here. She then asked if I would take her downstairs . . she said she did not understand why they were making her stay in the room.

We live on one floor, there are NO stairs . . . .

I called her primary care doctor, the shrink and off to the ER we were headed. Not a place for someone who is confused. They did all the typical tests to rule out stroke, heart attack or heart failure, tested her for UTI and told us we could leave . . . she is perfectly healthly . .. PHYSICALLY . . . mentaly however is quite another story.

So now that you have an idea of what is happening . . . here are some of the funny stories . . . I am not being cruel in any way . . .I have found that humor is about the only solace I have to deal with her illness . . . and sharing will give you all a chuckle . . these are all from the "voices" she is hearing

Good Samaritan
In early December Mom turned 80. My sister and brother came in from NJ to help celebrate the monumental event.   We were all sitting around in the evening and Mom got up to go to bed. She stopped half way down the hallway and said, "I have to open my blinds up for the Good Samaritan"   My siblings were stunned. They could not believe that she would OPEN her blinds when going to bed. Most people shut the blinds, curtains, etc when they get ready for bed . . . She proceeded to tell them that there was a Good Samaritan who comes by every evening and checks to be sure she is in bed. He shines a light into her window and then goes on.
She believes this to be true. She opens them EVERY night before she goes to bed and has since some time in late Nov.   I am not sure why or how it started, but I just let her do her thing. I believe that the lights are from cars passing by, or possibly stopping at the stop sign across the street. Either way, no matter what . . .it brings her comfort and that is the most critical thing at this point.

Pilots
We are sitting in the living room and she says, "The police and two pilots went next door yesterday". I reply, "they did?" She starts telling me . . . .The pilots called the police and went to the neighbors house yesterday because she is stealing my heat and the smoke is so thick above the house that they cannot fly over anymore. I reply "Remember I use to work at the airport a long time ago." "Yes" she replies. "Well airplanes cannot fly over a residential area below 25,000 feet" to which she replies, "I hear them all the time" and I say "No those are the medivac units going to the hospital down the street" and she says . . ."I never said they were airplane pilots, they could have been helicopter pilots" . . . . what could I say?

Going on a Trip
It is about 7:50AM . . . I am barely awake, and trying to decide if I should get up or roll over ...Suddenly my bedroom light comes on and Mom walks into the room. I say "What the hell are you doing!" I am not really even aware that I yell because I am not fully awake. She replies "Oh I did not even know you were here. Your car is not outside. I am getting my suitcases because I have to pack. Frances is picking me up today and we are going on a trip".   I pull the covers back over my head and think . . .my feet have NOT even hit the floor yet and it has already begun. She apologizes for waking me, leaves the room and I feel bad for yelling . . I get up
When I get into the kitchen there is no coffee - She said she only made enough for herself because she did not know I was here. We both went to bed at the same time the night before, I said goodnight to her, and told her I would shut off all the lights and lock up . . . .she does not remember
I asked her about her trip . . .Frances is gonna be 81 in Feb . . I seriously doubt that she is going to drive 600 miles from NJ to TN and pick her up . . .Thelma and Louise they are NOT
I ask her when they talked and when the trip was planned . . .she could not remember - only that she would be there by 9AM to pick her up.
I walk down the hall and look in her room . . . all her clothes are laid out on the bed - her undies, pants, tops, pj's, snow boots . . . All she has to do is put the stuff into her suitcase - which is in the closet in my bedroom.
I was floored . . when I took her to NJ in the summer it took her about a week to get ready . . . now I have to wonder how she did this so quickly . . and what time she actually got up.
She sits on the couch to take a break and I ask where they are headed . . . she has no idea but thinks it will be a good idea to get away, and maybe leave the voices behind. She is aware that the voices are there, but not that they will follow her . . . they are her . . . and in her head.
I could not believe it and went out for a little while to call my sister. I wished her a safe trip, and told her to give me a call to check in so that I would know where she was. I was wondering how she would get out of going . .becasue I knew it was not real. I was gone about an hour and when I got back she was back on the couch waiting. Frances was running late, called her and they would now be leaving about 2PM. She asked if we could have lunch in case Frances did not want to stop until later for dinner. I fed her and had to leave to take a family member to the doctor. I knew she would be okay, sitting and waiting for Frances to come. When I got back that evening I knew she would still be there, but had no idea how she would be - what frame of mind would she be in...would the trip still be a reality for her? What would she say about why she was still home?
I went in, and there she was . . .on the couch watching TV this time. I asked why she was still home and she said that Frances called her, she was sick and that she would not be coming . . . .
My heart sank for her . . . she really believed she was going away. She packed, she wrote out bills, she gave me her checkbook so I could pay any new bills that came while she was gone. . . .I hate to see her like this . . .but I have to laugh because where do these ideas and beliefs come from?

Tuning it OUT
This evening 9 to 5 was on. We sat together in the living room and watched it. I was playing games on my laptop and she was watching the movie. They said something that I repeated and she said. . . why did you say that?  I replied that I was repeating a line from the movie. She said, Oh I tune that out. ????? Why are we watching a movie if you are going to be tuning that out I thought. Then she said that she once told someone that she was good at tuning things out . . . she had six children and if she did not tune them out, she would have gone crazy . . . .I replied . .try tuning out the voices . . . we both laughed and she said . . I wish I could, but for some reason I can't.
I guess if the voices are not real, and we are the one creating them tuning them out does not work.

I sit all day and listen to her tell me things . . .I laugh, cry and go outside to get away from it all. I should be writing it all down as it happens so that I can remember it, but I tune her out to protect myself. I hope you enjoy my reports and that should this ever happen to a loved one in your family . . . it will be of help . . .

Kathy

How?

2012-01-17T22:54:00.000-05:00

When we are children we look up to our parents. They teach us, feed us, help us, play with us, care for us, protect us and most important of all, they love us. . .UNCONDITIONALLY. . .

As we continue to grow, and learn more about life, we have periods of time where we feel we are smarter than they are. We feel that we no longer need them, we forget all the little things they did, all the things they did without, so that we could prosper, grow and make them proud one day.

Today, as I sit and watch my mother continue to slip away into a world that only she is familiar with I wonder where that loving, caring person went. Now it is my turn to reassure her that everything is okay. It is my turn to play the role of the parent. My turn to sort it all out, and come up with the best solution for her, because she is not able to do so.

The past week and a half, have been more than anything I could ever have imagined. Nothing in life, no matter how intelligent a person is can prepare them for this.

I try not to react to the stories that ramble across her lips. Her brain is so active, and the stories are so unbelievable; yet I have to act is if I am not surprised. Act as if nothing shocks me . . the voices keep her so busy; and now she feels compelled to tell me what they are saying.

We have begun a new drug regimen. We are still in the trial phase so while there are some areas that seem to be getting better, there are still areas the drugs have not touched. We increase the doses to eliminate the voices, and pray that physically her body will not react. We add some, take some away, reintroduce some, and hold off on some. Each day has new surprises for me. There are mornings where my feet have not yet hit the floor and she is already in full swing . . the voices have taken over most of her day. She cannot determine which voice is real and which is a project of her own brain.

The noises she hears, I don't.
The men, women and children singing, I don't hear.
The clanking of dishes
The surging of air when heat kicks on
The TV from next door; or the ringing phone . . .I don't hear

It infuriates her that I cannot hear what she does. She knows at times that it is in her head, but continues to tell me how real it all sounds. There are times she even says, "I wish you could hear it".

Is she crazy? I don't believe so.
Is she going insane? I don't believe so.
Is she slipping away forever? I believe so.

Each bout of dementia seems to hit her harder and harder. Many of the stories she has shared with me over the last year, are the same with each new bout, but the names, places and voices change; if only a little.
The fact that we have good weeks, bad weeks, terrible weeks and royal battles makes me afraid. I can see that with each new episode she is slowly disappearing as the mom I loved my entire life.
Don't get me wrong . . I still love her; but I prefer my mom to the woman who I claim invades her brain periodically.

How does a child say farewell to a parent; who really is not there?

I pray each and every day, that the voices leave . . . for her sake.
I pray each and every day that when the time comes; she will go quickly . . . for her sake.
I pray that before the end, the mother I grew up with, the woman I have loved for over 52 years will visit one last time; so I can tell her so . . . for her sake

Oh . . you are alive......

2011-06-19T18:25:00.000-04:00

Often we joke about having a bullet ready for when the time comes. Today the first words mom said to me were "Oh, you are alive! I have been up since 6AM; they told me you were dead and I would never see you again!"

Not exactly a great way to start anyone's day - especially your own. Since January I have been told by mom that I have been raped, attacked, passed out in my car due to heat and taken via ambulance to the hospital where I died and today this.

I am nearing the brink of being able to cope with the dementia. It was so good for so long. I know that nothing she says is true and yet; it is so hard to keep a stiff upper lip and smile thru the insanity.

She sits and stares almost constantly. As she nods off her head falls backwards from the huge hump on her back caused by scoliosis. Often when she awakes you hear a chuckle and she repeats what she claims she is hearing the neighbors say.

I am not sure that I would want to have this disease, let alone be a burden to anyone taking care of me. I have to give her credit because she is facing it well, although she really has no idea why these things are happening or what the future holds for her.

My biggest fear today is how do I get her to the psych tomorrow? without an appointment on her calendar. I may have to do some fancy and creative thinking - I will call first thing in the AM, get the time for the appointment and then jot it on her calendar. Then I can say it was there, not sure how you missed it.

I called Friday because the voices and stories she was relaying from the voices were becoming more frequent during the week. She constantly sleeps so that also has me concerned. I hope it is just a medication adjustment, but my fear is that it could be something worse.

In my heart of hearts I would like to have her hospitalized for a bit so I can get a break and so that they can perform a full evaluation on her. The office told me Friday I could take her to the ER; but on a weekend all they would do is check her stats and send us home.

Life continues to throw us curves. I just am not sure can go thru another detailed story of how I died. I asked her later how I was killed this time and she said I was shot. Hope it was fast...ha ha

More later, I believe the keyboard tapping is bothering her.

Interesting Day

2011-06-17T00:21:00.000-04:00

The day started out very mundane . . coffee, breakfast and exercise. I had to run some errands and a friend stopped by. Mom was rather calm, not too confused and seemed okay . ..

When I returned from my errands, she was in rare form. She kept asking about how a door locks...is it in the handle or the dead bolt. Why does this door have both, and why did other places she lived not have them? If we were to leave, and lock the "forever" door, then the regular door would we be able to get in or would we have to use the garage. Could we lock the door from the outside, or did we need to do it from inside?

It took me some time to find the root of these questions, then she came out with it. Saturday evening she wants to go to church for the first time since all this started in January. She wants to be sure that no one will be able to get into the house while we are out. There has been someone here 24/7 since I arrived.

That is not entirely true. We have gone to doctor appointments, and have had one or two outings. The house has been fine, but when the paranoia sets in, she conjures up these bizarre thoughts. There is not way to make her feel better, or to convince her that everything is fine.

During our conversation she mentioned that the lady next door once had a key to her unit. When the prior owners lived here over 3 years ago, she had their key for emergencies. I guess she is afraid after all this time, she may actually use it.

We didn't really argue but she said I was being curt with her. I said if you want a new door knob, and new dead bolt, I will run over to Home Depot or Lowes and get them.

She said she would take care of it, call a locksmith and go from there. I said she could do anything she wanted to which she replied...This is MY house RIGHT! and I simply said Yes Ma'am...it is your house.

Earlier in the day she called the cell phone company, from her cell phone to be sure that noone had cut off her phone. If you are confused by this, join the club. They told her noone had altered her plan, used her phone and that everything was in order. When she came out of her office to tell me she was grinning from ear to ear because everything was fine. The $1900 bill that she heard the neighbors talking about was not true. I had already told her that, and told her if they had shut off her phone it would not work....she doubts me constantly....but I just go thru the day, letting her babble and occassionally say yes, no, ok, what do you think, why are they picking on you, etc. It makes my life a little less combative.

She took a nap this evening again, but still went to bed at her normal time between 10 and 10:30PM - I hope she has a restful, peaceful slumber.

Dinner at 8 - an hour late

2011-06-16T08:15:00.000-04:00

Well, Mom managed to sleep all day, and most of the night. I tried my best to hold off eating supper until she awoke, however my brain other ideas. I quietly reheated leftovers and sat on the couch, eating my supper. It was just before 9PM when she came down the hall. She was shakey and confused. Her first words were....is it morning or night? Is it Friday? Oh no it's Thursday. My reply of course was Mom it is almost 9PM and Wednesday. I asked if she wanted to eat and she replied "We did already". I reminded her that we had pizza at lunch, and she had been sleeping most of the day.

She stated that she had the best sleep she had had in a LONG time.
I heated up her dinner, and she did her 10PM meds. She was back in bed by 10:30PM and slept until about 7AM.

Today she seems more lucid, alert, has the Today Show on for the first time in over a week and has been cheerful, seems well rested and back to normal.
Lets see how the day progresses!

More to come . . .

Back to the future

2011-06-15T17:54:00.000-04:00

So I have not posted in a LONG time because it appeared that the drama, voices, paranoia and craziness had subsided; however this is no longer the case.

I have thought about this situation long and hard - I have been with Mom since Jan 23, 2011. It was not a planned event, not a planned period of my life, but I could not put her in a home. I did not think she was that bad, and I was not ready myself to come to terms with losing her.

I have been here now almost five months. I came with a weeks work of clothing and my laptop. Now, all this time later, I have managed to have my sister bring some more clothing during one of her visits, and I purchased some things during my stay.

Mom was doing excellent. She has definitely been thru an ordeal that if I were not here to see and confirm with my own eyes, I probably would not have believed it myself.

Her stay at Sycamore Shoals Hospital was 2 weeks. When she was released, I was told by the head physician and social workers that she would have to have someone live with her full time or put her in a home. I opted for staying with her. My own personal life has been forever changed by this and with the Grace of God, my employment status changed just prior to me coming for my visit, so I am able to do this.

Once at home, we were assigned a case worker; a physical therapist, an occupational therapist, a psych nurse and an RN. To our good fortune, in the worst of situations, the psych nurse and RN were one in the same and we LOVE her!

Our weeks became full very quickly with therapy twice a week and the RN visiting twice a week. Then we were released from Occupational therapy - once it was determined what in the home needed to be altered for Mom's safety. The physical therapist was here to build up strength in Mom for her continued daily grooming, and regular routine. We continued to see the RN twice a week, and eventually after three months everyone was released....the RN migrated to once a week, then every other week, then she just stopped coming two weeks ago.

It seems like an era passed since this all started, but really we have been very lucky. There have been no major setbacks until this most recent one this week.

The voices Mom was hearing are back. People are against her because she is visually impaired. She believes that neighbors are controlling her heat pump (southern for heat & air system). She believes that her money has been stollen and that her outgoing mail has been taken; so that her bills are all behind. She believes that her cell phone and house phone are bugged, and that both are going to be cut off. She believes that she will need to take out a loan for the $35,000 bill owed to the visiting nurse service.

How can you help but feel her pain, and what can you say? Really it is a horrible situation that I am dealing with 24/7. I try my best to stay calm, but she babbles and talks in circles. She believes what she is saying to be the truth and becomes agitated when I "doubt" what she is telling me. Yesterday she said to me "I am just going to clam up, you don't believe me anyway".

I continue to remind her that both the Dr and the RN have told her she needs to talk to me - keep me informed of what she is hearing, feeling and going thru so that I can help her.

I continue to tell her that I am here to help her; however she is reluctant to allow me to do so. She reminds me that she raised six children, and has helped each and every one of us. That she is capable of taking care of herself and that we both need to have our own space.

Recently I was made to call the cable company because she has a check written out for the bill - but it was stollen from her box. I know that the bill is not due until the end of the month so I hesitated and stalled on calling so that it could arrive. She awoke the next morning, and started in immediately demanding that I make the call. I did as I was asked, and to my surprise (NOT) the bill was mailed to us June 9, and due June 28.

She feels better that it is all okay, and cleared up however as we sit and watch CNN, her favorite channel or ABC News, she will say - they cut off the cable. I am behind on the bills and I have never missed a payment in my life! I remind her, cautiously that we are watching TV so it cannot be cut off. She reminds me that we pay a month ahead, and it will be cut off at the end of the month.

How does a daughter face the day when she is not sure who will come out of the bedroom? Her mother or that woman who invades her body?
How does a daughter pony up and become the parent when her mother is slipping away in front of her?
How does a daughter convince those that are not present as she is, that this stuff really is happening?
How does a daughter continue to go on each and every day, in the face of this dreaded disease and not become partially insane herself?

The answer to this is quite simple: She is your mother - she birthed me, she washed me, she fed me, she clothed me, she cared for me, she nurtured me, she educated me. She instilled the very values in me that allow me to now become her caregiver.

Watching her sleep in a chair from 1PM until 11PM can become very boring. If I were to leave, and she were to awake....what would happen?
If I were to leave and she were to fall again? would I be able to forgive myself? If I were to leave and she were to become even more confused or agitated...what would I come back to?

It is obvious to me that here is where I need to be. I need to know that the very best of care and every effort possible are being made to insure her safety, comfort and quality of life.

One day, when I feel she can do it on her own maybe - just maybe - I will move on, but I believe that she needs me more that she will ever admit.

I need to know that she is okay, that she is safe, that mentally she is capable of caring for herself . . . and that nothing will harm her.

Right now she is sleeping. She was sleeping in her recliner and said - I think I will go to bed. That was about 2PM - I do not wake her when she sleeps. I do not disturb her when she sleeps - I do not tell her that sleeping during the day will make her stay awake at night - I allow her to do whatever she wants - she needs to be comfortable in her own skin and putting extra stress or confrontation into the mix only makes matters worse.

I have become a turtle - I pull my head in when it gets to bad! I go out for a few hours when I can and let her sleep or watch TV - I never miss a medication time - I make sure that I watch her take the meds which are keeping her on an even keel. I continually check her dispenser box to be sure that she has not missed a dose, or mixed up the pills which sometimes spill out when she tries to take them. I ask her about her patch, which she now places on her own body. I can see the marks from her rotation schedule. I also see the evidence from the packages . . which are often dropped on the floor - I simply pick up the pieces without saying a word.

I have become quite adept at skirting issues that I know cause conflict. I have become a master chef and know what she will and will not like prior to even asking. I have her grocery list embedded in my brain - those staples she cannot live without - skim milk, banana's, york peppermint patties, decaffinated tea (regular mixes with her meds), coffee in the AM; precisely 2 cups (never more). The coffee pot shuts off at exactly 9AM - don't leave it on - it makes a noise. Cereal for breakfast - there are days I can get her to eat an egg, or muffins, or a biscuit. Lunch at NOON . . . followed by exercises and Judge Judy at 4PM - when I start cooking supper which we eat at 5PM.

After supper we watch the news, Dr Phil (7PM) and then CNN until 10PM meds . . . off to bed and start again the next day.

Life has become a routine for me. I know what to expect in that regard, it is just the level of confusion or sanity that I am not familiar with. I still am not sure how to know when we will have a trying day or an uneventful day.

I take each day, hour by hour - and sometimes even in smaller doses.

A full time job lost in January has been replaced by this new life. I eat, sleep and breath Mom. I take care of her appointments, I haul the trash out, I bring in the mail, write the checks, do the grocery shopping, remind her of birthdays, anniversaries, special events; answer the phone, dial the phone, cook breakfast, lunch and dinner, I do whatever is needed to help her navigate her day......

The mother I love and knew my entire life is slowly slipping away. I watch that blank stare, mouth hung open and keep an eye on her chest to be sure she is still breathing. She can sit for HOURS staring...it is during that time that I miss her the most - what is she thinking? What is going thru her mind? I don't dare ask? because I am not sure I want to know.

How did such a strong, independent, wonderful, beautiful, loving, caring, compassionate woman digress to this? I guess in the scheme of things this way may be the best for her because she is not aware of what is happening to her. I on the other hand am sorry that those of us who love her will have to watch this, and those that are not around will MISS her. . .time continues to allow me to see her vanish before my eyes. I am saddened by this and know that I will have no regrets because she and I have come full circle.

We have laughed, cried, screamed, yelled, joked, argued and loved...we continue to love each other. We have done everything in our power to make our situation the best possible.

I love you Mom! Hang in there and I will be here for you no matter what...

So . . .where do I go from here? How do I in light of the recent drastic change in her demeanor call the doctor and get her additional help? I know she will NOT want to go to his office and we are released from the visiting nurse care - I need someone to see this most recent setback. I need them to make sure it is just natural progression of the disease and not something more critical. Tomorrow is another day and if God grants it to us, I will make my call then. Part of me hopes she will snap back as quickly as she left, but there is a part of me that knows....that will not be the case.

Thank you to all of my friends, family and supporters who allow me to do what I need to do and vent when I need!

First Outing

2011-03-29T15:45:00.000-04:00

Today was our first outing, that was NOT a doctor appointment. We went to the bank. Apparently, I am not able to go to the bank alone; nor will the bank give me my mother's cash.....I have to laugh sometimes. What I am still trying to figure out; and it will be a life's journey is where does the mind go? and what makes us lose it?

I cannot believe I am beginning my third month here, in Northeast Tennessee. The weather has changed to spring; the daffodils are in full bloom; the flowering trees are simply beautiful...you can hear the "spring peeps" singing almost all day long and the weather could not be more beautiful.

Inside the four walls however; it is another season entirely. Mother has begun to vanish, and diminish before my eyes.

Life has been good to us, and we are getting along wonderfully. Tonight, I will attempt an overnight - leaving her with her meds, food and the confines of these four walls. She will have to prepare her own dinner, and breakfast in the morning. As we continue to move on, and we strive for her goal of living alone, these will be tasks she will need to accomplish on her own.

I chuckle to myself each time she tells me that she has lived alone for years. Yes she has; but that was in another season - one where confusion and dementia were not present.

I know she wants her life back, as we all do.
I know she wants her HOME back, as we all do.
I know she is an intelligent woman, that has lived alone since 1997 and who has raised six children, but today - in this new SEASON, she is becoming the child, and I the parent.

Wish us luck......I know she can do it

Funny - I am feeling like I did the first time I put her on the train in NJ when she went to visit a friend.
I never had my own children, but I imagine it is would be like putting them on the school bus for the first time.
I actually had tears in my eyes that morning, and I know tonight, even though I will not have to be on call, in the event of an emergency - in the next room - I will sleep as if there is a baby in the house . . and jump at any sound.

I never imagined, in any of my wildest dreams that I would be living this story . . let alone seeing my mother, struggle so much.