The Bear Hug Waltz

Learning From The Past

2011-12-27T06:35:00.000-08:00

Do we learn from past situations and mistakes and do it right the second time around should the same situations present themselves? Or...do we make the same mistakes all over again? When caring for mom, I learned some lessons the hard way, hard for both her and I. Trying to insist someone do something they simply can not do any longer, because you cannot accept the real reality of it, is painful for all involved. Being able to recognize this and accepting the changes and making the necessary adjustments in your care of your parent or other loved one, will make things easier for all. I wrote about this very thing November 6, 2009, below is the blog post.

Acceptance of Change

Accepting what I cannot change, changing the things I can, and accepting the changes quicker, things would go a bit easier if I would do that, both for mom and for me!
As the dementia progressed and caused physical changes as well as the mental, I kept holding on to the way it was rather than accepting the how it is now. So, frustration would take over all to often, until I finally got to that point of ‘it is what it is’.
Once I accept that she can't do what she used to, and make the necessary adjustments in her care, things go smoother, for everyone.
As I said to my husband, acceptance of change means reaching into another pocket of my ‘caregiver coat’ pulling out it's contents and seeing what is next.

The wonderful lady I have been taking care of this year, has been going through many changes as the dementia has progressed. There were two major emotional events two weeks ago, which caused both physical and mental changes to occur, the death of her sister, who was her only living sibling, and her daughter going back home after a visit. We can pinpoint to that day as to when these changes began to develop. She has also taken a fall twice in the past week, adding to the progression.

Yesterday, I had to rethink my plan of care and schedule for her, realizing I am dejavuing what I went through with mom. Different individual, different needs etc, but changes happening =changes and adjustments that needed to be made. We can not force her to do which she does not have the mental or physical ability to perform or understand. I am grateful for a few quiet moments yesterday to reflect on my times with mom, and lessons learned the hard way, which will now make my care giving for my lady in many ways more easier for all concerned. I will do what is needed to be done to make life as comfortable for her as possible, make the necessary changes in her care and routine, for her safety and comfort.

The Year(s) of the In-Home Caregiver and Companion Have Begun

2011-09-03T14:58:00.000-07:00

Last month, August 16th, was the year anniversary, if that is what you would call it, that mom went home. I decided that on that day I would once again host another blogtalkradio show, http://www.blogtalkradio.com/thebearhugwaltz I felt it was time to take a more active role in the caregiving and aftercaregiving communities once again. Although I don't have the hours to spend on writing/blogging/talk show hosting, as I did when caring for mom.

Back in November, I hosted my last show for a time. I found that once all the memorials for mom were completed, I needed to step back and heal, and also try and figure out what was next for me. I needed to see who I was, now that I was no longer a caregiver. I knew that I didn't want to go back to the world of retail and management, that is what I did for almost 20 years, so what now if not that?

Earlier this year I began to get my resume updated and started putting my info online at various retail web sites. Not what I wanted to do, but I needed to do something to bring in a supportive income now that I no longer was tied to the house. I decided one day to check into in-home caregiving. Well, surprising to me, I found employment immediately as a in-home caregiver and companion! It was a shoe that fit and fit well. I still needed to be a caregiver, it was a piece that was missing since mom passed away. I need to care for the elderly. It shocked many when I told them I was once again a caregiver, but yet those that really knew me, were not shocked at all.

I want to continue working on my blog sites from time to time, updating, sharing. I am also working on my next blogtalkradio show for this month. I hope to be able to do at least one a month now. I am going to start with a discussion of the early stages of dementia, and also do some comparisons of how one person reacts in the different stages, compared to another. Home care is where I want to stay, at least for now. It is very needed, very necessary, to help someone stay in their home as long as possible, or as in mom's case, until she passed away to her heavenly home.

I stated during my show that the "caregiver coat" I put on along time ago, was still a good fit, and I expect it will be for awhile!

This is one of my "love Mom..." designs I did for my store merchandise. Here is the link to the store...http://www.cafepress.com/thebearhugwaltz

HAPPY BIRTHDAY MOM....missing you today....

2011-05-07T08:58:00.000-07:00

Is there a big birthday celebration for you in heaven today?? Are the angels rejoicing on your special day? I am sure Jesus will pay you a special visit too! Love and miss you mom.

And Mom Was Always There

2010-10-20T13:08:00.000-07:00

In my crib, alone at night… wind blowing the curtains, the closet door a fright…

Thinking I was all alone, calling out in childish terror…

And mom was always there.

So many days and nights of illness, bedbound in my early years…

Always needing special care…

And mom was always there.

Traveling across the country, paper bags carried with her…

For those unpleasant moments of motion sickness…

Wish we had gone by air!

And Mom was always there.

Several deaths in the family, dad and big sis were two…

I asked, how do you go through this?

“My faith”, she said, “and you need it too”…

And Mom was always there.

Many years passed by, more then we ever imagined would…

I became her caregiver, her parent, her mom…

For over 4 years…

I was always there…

Go home now mom, it’s ok, dad is waiting for you…

Jesus too!

Holding her hand watching her breath as her time drew near…

But mom was always here….

Mom, I Will Remember You....

2010-09-24T17:54:00.000-07:00

The Question Answered

2010-09-06T07:41:00.000-07:00

I have asked myself this question countless times through my life, why I was I born so many years after my brothers and sisters? Mom would call me "her extra special little something later in life", or something close to that anyhow! But I did not feel special.

Recently during a lunch conversation with a new friend, I was talking about mom and my brothers and sisters, and the many years that separated us in age. As I was sharing, the pieces all came together in one powerful revelation moment, that gave meaning to my life up to this point.

Mom was 38 when she had me, which was 9 years after the youngest of the first 4. Such age differences meant I spent most of my younger years alone.

I had worked in nursing homes years before, so I did have some background in caring for the elderly. I was young enough and strong enough to care for mom, plus had the "clinical" skills as well.

Now, the rest of the story is that I was the one to help mom through her last days, and moments. To sit and hold her hand, encourage her on, and watch her take her last breath....as she enters heaven....where she would see daddy after 40 years, on his birthday! More wonderful even then that was that I helped her to finally see the One that we all yearn for, Jesus.

There was no one else in my family that would have or could have done all that needed to be done, through these last years, except me. So, this is why God chose me and why He chose the day for me to be born. He chose me to be that person to help mom go home!

Now, for the next part of my journey....

A Journey Ends --- Another Begins

2010-08-16T12:58:00.000-07:00


Dad and Mom, little rascals?

Beauty in black!

Dapper Dad!

Lol, don't know the story behind this!

1968, best shot ever of dad...next year he would die.

1972, vising us in Hawaii, missing dad.

Through the years.

The faces of dementia.

MONDAY, AUGUST 16, 2010

Together again!

He smiles as he tends their garden

The Son is shining bright

She could be here any minute,

Yes she just might

Looking eagerly down the path by the sea,

For that face he longs so much to see.

For her the years have slowly passed

Until that moment when at last,

He sees her hurrying down that path,

Lovingly to greet him.

Her scattering tube.

Hannibal, Ohio, and the Ohio River on the right where mom loved to swim! This will be the final stop on her journey for her remains.

For the Lord himself shall descend from heaven with a shout, with the voice of the archangel, and with the trump of God: and the dead in Christ shall rise first:
Then we which are alive and remain shall be caught up together with them in the clouds to meet the Lord in the air: and so shall we ever be with the Lord.
Wherefore comfort one another with these words.
1 Thess. 4:16,17,18

See you soon mom!

Moving Closer To The End

2010-08-07T12:11:00.000-07:00

Is the time here now, is this the beginning of her final journey..

She ate no more then a small dish of her pudding yesterday, and nothing so far today and it is early afternoon.

Much more sleeping or dozing now, all though she did watch most of a new movie I just got for her.

The mourning process has accelerated for me now, tears flow easy.

I know dad is getting anxious for his love to come home.

Not sure how to fill that empty spot that is already growing inside my heart, that mommy spot.

With all those I talk with online, I can find no one to talk with or write back and forth with. I am alone. No family or friends here to sit with me, have coffee, allow me the luxury of really letting it all out. No, just me, the cats and mom.

Maybe she will eat a little tonight as it was last night that she finally opened up her mouth to receive some nourishment.

Nourishment, I sure have written quite a bit about that these last several years.

I have found a beautiful container for mom's remains, we will bring them to the Ohio River, where she loved to swim.

COHERENT

2010-07-31T13:47:00.000-07:00

"To have clarity or intelligibility...understandable" Coherent.

This morning when I went in to get mom ready for the morning, she was motioning at me and so I moved closer, turning. She fussed with the hem of my shirt which must have been "not perfect" according to her way of seeing things. I looked at her and chuckled and said thank you and continued on about the business at hand. I looked at her again, and the realization struck me, that at moments like these, mom is coherent, and that thought is almost horrific to me, considering the state of being she is in.

As dementia has progressed these last several years, it is easy to settle into the assumption that mom "is not there" most of the time. When I stop and think about all the possible times that a good part of her actually is present and coherent, I can't even fathom what it is like to her even in the minutest way, to be aware of some of the things that she must experience as I tend to her on a daily basis. I can see in her eyes when "she is there", or at least a good portion of her understanding is present.

Today, she did not like the fact that I was checking her to see if she needed to be changed, trying to clamp her legs tight, that is someone who has understanding and is trying to have a say in what is being done to her. I am in a whirlpool of emotions over this as I consider it all. But, I still have to do the things I do to care for her nonetheless.

As I sat down to write this, I also did some research looking for someone who may have addressed the topic. What I found were basically clinical and professional writings, nothing from a "just me at home" individual. So, this is just me, no special degrees or education in the area of caregiving for someone with dementia, learning as I go.

FACES OF DEMENTIA

2010-07-25T09:05:00.000-07:00

Thought This Was It......

2010-07-24T10:24:00.000-07:00

I just realized I had not written about mom being sick and near death these last couple weeks. Two Sundays ago, she started having a real deep congested cough. I called for the weekend nurse to come and check her out, everything was good except for that coughing. The next day, her regular nurse came to see her. Mom was virtually unresponsive, no movement, it took some doing to get her to wake up but she was pretty out of it. She was running a low fever also. The coughing wasn't constant but it sounded awful when she did. There was no eating that day for her, and she was put on antibiotics. Well, between prayer and the medicine, she began to immediately turn around for the better. I could tell the next day, Tuesday, that she was improving and she continued to do so each day after. The whole ordeal was very emotional and stressful, it got me into the "death" mode and I began to do some more planning and prep for that time. Which is good to do these things before the actual event takes place. I ordered photo cards that are the size of business cards, with a pic of her from her last birthday on them and on the back is the poem I wrote for her and dad called Reunited. They will be inclosed in a memorial card that I am making. And I made and ordered 4 photo books to pass out to those who have been the most involved with us during this caregiving time. I have received all these already, still have to finish the card though, and I will order some more of the photobooks next month. Anyhow as of today, 7-24, mom is doing well, still some congested coughing, but it is not real bad, and she has not been running a temp for about a week or so. It was a rough time for awhile there, but mom is a fighter, and she always has come out of whatever situation she might be going through.....except dementia.

Holding Hands

2010-07-15T12:45:00.000-07:00

While talking to her nurse, mom looked at me intently.

Gently waiving her hand at me.

I asked her what did she want.

She pointed at me...she took my hand in hers.

Her hand so thin and translucent.

We stood there holding hands.

I said to the nurse, she has never done this before.

Makes me glad, makes me sad, makes me concerned.

She has been very sick, but has been improving everyday.

Maybe this was her way of acknowledging the care given.

I don't know, but it was a special moment.

One that needed to be written down.

End of Life Caregiving - Caregivers Library

2010-07-13T10:12:00.000-07:00

Trust Yourself
If you have provided primary care to a loved one for a longer period of time, you are probably the person most equipped to determine what needs to be done now, and to fulfill his or her wishes. Trust in your ability to handle these additional responsibilities, but also realize that some things are out of your control.
If you have been placed into an end-of-life caregiving role by a crisis or event, try not to second-guess what you are feeling. Understand that conflicting emotions—fear, anger, grief, and helplessness—are natural, and have confidence in your own judgment

Understand the End Stage
Having some knowledge about what lies ahead—physically, emotionally, and spiritually—can make a real difference as you and your family prepare for the death of your loved one. Talk to your loved one’s doctor, nurse, and other members of the health care team about what to expect. Discuss these issues with family members, friends, children, and visitors when appropriate.

Connect with Support Structures
This includes family, friends, clergy and ministers, professionals, volunteers—anyone and everyone who has something to offer. Take advantage of help wherever you can find it, and avoid the all-too-common tendency of caregivers to become isolated.
Keep in mind, too, that most people want to help, but may be uncomfortable making the offer or with the circumstances. Make it easy for them. Let others know what they can do, in a concrete, practical way.
Review Legal and Financial Arrangements
This may include wills, powers of attorney (both financial and healthcare), “no code” or do-not-resuscitate orders, as well as the location and disposition of important documents and proofs of ownership. Having all of these measures in place and up-to-date will spare you and your family time and difficulty.

Maintain Your Health and Well-BeingIt’s easy to lose sight of your own needs and requirements during this time. Do what you can to maintain balance in your own life—physically, spiritually, and socially. If you feel selfish or guilty for spending time on yourself, keep in mind that no one can draw water from an empty well.

Evaluate Hospice
Hospice services have a high success rate in battling pain and helping terminal patients remain comfortable. Some families may have a difficult time with the idea of stopping efforts to combat a disease, but it’s important to consider all care options. Because hospice patients are cared for by a team (physicians, nurses, social workers, counselors, clergy, therapists, and volunteers), you may want to look at and interview services in advance, to choose a group that the family is comfortable with.
“Palliative care” programs likewise focus on maintaining comfort, but there is no expectation that life-prolonging therapies will not be used. And while hospice services commonly take place in the home, palliative care teams usually work in facilities or institutions.

Pre-Plan if You Can
There are many steps that can and should be taken well in advance of a loved one’s final days. These include a letter of last instructions (in which your loved one sets down his or her wishes for the funeral or ceremony), as well as pre-planning with a funeral home. Many choices and details can be finalized beforehand, when everyone is thinking clearly. This offers the additional reassurance that matters are being carried out in accordance with your loved one’s wishes.

http://www.caregiverslibrary.org/Default.aspx?tabid=94

Embarking on Another Adventure!

2010-07-09T09:24:00.000-07:00

I am embarking on another adventure in the land of caregiving. It seems that one of the things, almost the primary thing, that helps me through each day and into the next, is when I have a purpose and project to work on. These past months it has been such a struggle to stay "up". I get lonely and bored, feeling without purpose and not being able to utilize the skills I have, which is life-giving to me. Helping Denise Brown of caregiving.com with her online store has been a big help, but once it is done..it is done lol. Then what? I can't write a blog everyday because things just don't happen everyday that are newsworthy! This is my first and primary blogsite, but I also have another that I add informational articles on caregiving to, Caregivers Not Alone. I want to be able to personally visit local caregivers, who have been isolated like I was for so long. This site is addressed to their needs. The thing is, I have not found anyone yet that I can visit! So, it has been a bit of a downer for me. Then the other day I had another "idea"! I have set up a blogtalkradio show, which I will host! Hhmmmm, what have I gotten myself into now?! Well, it is called, of course, The Bear Hug Waltz! I am going to start with my very first blog post, and read them over the air, and add some comments as I go along. My first show, sounds funny, lol, is on Thursday, August 5th at 10:00 a.m.! So, I have to fine tune my plan, which I don't have to much left to do, then promote it wherever I can, and I will be ready to go! I thought well, when this is done with, then what? Duh! I will schedule a show each week of course! I have a lot of blog posts to cover, and most people have not read the earlier ones, which are quite significant. They are the beginnings for me, of what was to come and I want to share them. So this is something that I can work on every week and I think it will help me. I am also looking into being a ChaCha guide, lol which is a human search engine basically. It is something I can do right here, and bring in some money. So, will be making a decision on that soon. Update on mom: her health is still good, she is basically bedbound now, it has become to difficult to get her up even once a day at this point, more so for her then me. But I am so concerned with her being injured, especially putting her back into the bed. If I do get her up, she will usually not even stay sitting upright or stay awake for even an hour. It is alot to go through for such a short amount of time, and risk possible injury to her. Soo, many conflicting thoughts and emotions flying around inside me, most of which I cut off quick and stuff down deep, have to, for now.

4th of July and Mom's Tuna Macaroni Salad - Repost

2010-07-02T08:54:00.000-07:00

Fourth of July memories, the assembling together of the Jackson and Picknell clan at Uncle Jack and Aunt Peg’s farm, which later became the campgrounds. Tables and set up outside, filled with every kind of picnic food you can name. Grills going for the burgers and dogs…don’t think we did brats in those days. Geez that sounds like it was eons ago…but in a way it is.

Games would be played, bat mitten, croquet and so on. The usual bunch of cousins would go explore the wonders of the woods, crossing the creek by shimmying over a fallen log, or trekking through the hollow and jumping onto the tiny island nestled in the creek bed there.

The nieces and nephews all babies and toddlers then, now adults with children of their own. The cousins, many of us close in age, now with adult children AND grandkids! An unfortunate thing that the tradition of these 4th of July family gatherings, could not have passed on to each generation to come. But as time has it, age takes over, property is sold, families spread out and go different directions in life, seldom seeing each other again.

One of the things I always looked forward to every 4th of July, besides going to the parade, the activities at the picnic, and fireworks in the evening, was my mom’s tuna macaroni salad! A favorite of mine to this day. I have made it for years, sometimes varying the ingredients according to the tastes of those who would be eating it. But the one and true original, mom’s recipe, has been and always will be the favorite, the one I measure all tuna macaroni salads against…and none compare to her’s! (7-05-09)

7-2-10 I saw this pic when I was looking for some 4th photos to use, and I remembered the Doll Buggy Parades, held on or around the 4th. I was in some of them riding my pimped out trike lol. Never won the prize, but it was a fun thing, distant memories. I don't think they hold them here in town anymore, would be a shame if they didn't. Kids feel important, special, in their own little parade.

THE 2 Ps (Warning! Unpleasant Reading!)

2010-06-24T11:44:00.000-07:00

The 2 Ps

The following is a post from caregiving.com by Denise Brown, on Incontinence. It is a good intro to what I want to share on the topic.

How Do You Deal With Incontinence?

About 18 years ago (wow!), I helped friends care for an 81-year-old woman named Evie.
I can remember managing her incontinence like it was yesterday. Incontinence has a way of staying with you. She wore Depends during the day, which she hated. The dressing-for-the-day ritual included her throwing the Depends against the wall and stating, “I hate that thing.”
Getting her to wear the Depends was nothing compared to changing the Depends. I remember one unfortunate episode when she began disrobing because of an incontinence episode that, unfortunately, was still occurring. As she walked across the bathroom and left, well, a trail of incontinence, I followed behind with paper towels and wash cloth.
Evie was a very proud woman. But, the Depends and incontinence humbled her. It humbled me, as well.
Managing the incontinence is not for the faint of heart or for those with the sensitive stomach. It’s kinda smelly, pretty gross and awfully embarrassing.
It’s also not something that you can really speak about. So, you go about your day, doing what needs to be done.

"It's not something you can really speak about." Why not? This is a very real very normal, very "crappy" part of caregiving. Of course not everyone has to deal with the 2 Ps, but I say statistically speaking, the greater percentage of caregivers do.

"Managing the incontinence is not for the faint of heart or for those with the sensitive stomach. It’s kinda smelly, pretty gross and awfully embarrassing." Yeah, my son said to me one day after I was going over some of the P issues I had been dealing with, "Mom, you have got to have a strong stomach." Well, I probably do, but that is not what enables me to be elbow deep in poop at times past. It was the decision, the realization, the knowing I was the only one to get it done, which began back in 2006 basically. In my early blogs I write about "If I Don't Do It, Who Will?" Making the transition from daughter to caregiver, changing into my caregiver coat, and each day checking a pocket to see what new or continuing task must be done that day.

BM, or bowel movement, stool, elimination, incontinence, I don't have time for such "clinically correct" terms. They are cover ups of a immensely unpleasant reality, my mom has no control over when she pees and poops!
Am I being disrespectful towards her in discussing such personal things like this....no. Cleaning up after our parent when they pee or poop is one of the hardest and worst thing that we have to go through. Can I get an Amen here?!

When I became mom's caregiver, she was still using her potty chair in her room, and she could still use the regular bathroom. But things were changing, and I was not accepting or acknowledging them.

I have not listened to my intuition at times which would result in more then a "Cleanup in aisle 2!" (thanks DR, lol) But a cleanup from the carpeted living room into the kitchen and into her room where plastic was then layed down. I am very cautious now, and listen to that maybe yes or maybe no little voice!

There is a method I came up with called Excavation, when mom would get too constipated and her stool softener was not helping. I won't detail it out here, but it works and if you have the stomach for it, I can fill you in, just email me. But here is what I use, a potty chair, plastic bowl, large sheet of plastic, dry and wet wipes, Vaseline, latex gloves, small lamp and 1 or 2 towels. Like I said this works, and it is work, but gets the job done. Room spray......

In November of 08, mom came down with the flu and had severe diarrhea. It was so much work changing her and everything else in the bed, and the smell after a few days was enough to make me pack and go far away! I wrote about it briefly, http://bearhugwaltz.blogspot.com/2009/11/you-put-lime-in-coconut.html

I know it is hard to accept what is going on, and make the changes needed, but we have to and the sooner we do, the easier it will be for us, for our caree and cleanup will be easier too. Protect all the areas that your caree will be sitting or laying, use sheets of plastic, towels, sheets, whatever it takes. Designate one seating area for him or her, limiting their places to sit will cut down on how many pieces of furniture, or places on the floor that you might have to clean up. Don't forget to protect the bed in the same manner! I started doing all this I think in 2008, and increased the protection early part of 2009. Now since using hospice, along with mom's decrease in eating and eliminating (I know, there is one of those clinically correct words), I don't have plastic or towels or extra draw sheets on her bed. She uses a electric bed with electric air mattress, which has a cover that is removable, then I just use a regular mattress pad and sheets, on those I use the blue/green pads from hospice. In her wheel chair is a gel cushion with a blanket or towel and a blue pad on that for protection.

Yesterday was the day, that company shouldn't come over, as I began this post, she began her business lol. She hadn't pooped since last Monday. It is almost a celebration when she does because of how being so backed up affects her moods and physical functions.

What else can I say here, I don't think I mentioned the diapers did I, well I began using those on mom last year when so many things were changing and she was declining in so many areas. It was not a welcome expense, but they were a necessity for sure as nothing was staying dry or clean. The diapers do not guarantee no mess that is for sure, still protect where ever your caree will be sitting or laying because these pants leak as much or more then kids diapers! A blessing was, once we got hospice help, all the diapers and all other supplies were provided. Only her nutritional drinks are not covered, and it is medicare that covers these costs. Oh yes, with the diapers, I would for awhile, cut one down and use it as an insert inside the one mom was wearing to give some extra protection at night. Sometimes it worked, aannnddd sometimes it didn't! I don't do that anymore because she doesn't drink anymore, have to mix any liquids in her nutritional pudding, so she doesn't pee as much as she used to.

Ok, an unpleasant topic as I forewarned. I had considered making it much more yucky by detailing some of the things I have had to do with mom, like the Excavation...but I decided to be merciful, lol. But I do not have a problem discussing any of this with anyone who needs help.

Some final words, I hate doing this...I hate cleaning up my mother's pee and poop...It was one of the worse adjustments I have ever had to make in any area of my life, ever...I have some background as a aide and worked in nursing homes about 40 years ago, only helps a little! It is not the action that has been traumatic, it is that it is my mom I have to clean up. But, I stepped into that role of caregiver, put on that coat with it's myriads of pockets, and one day I pulled out of a big big pocket that said...it's time to clean up your mom when she pees or poops on herself and anywhere else....I don't think I have too many pockets left to look into, I hope not...

HEY! CLEAN-UP IN AISLE 2!

National Association For Continence Up-coming Webinar on Incontinence
http://www.nafc.org/news/134/318/FREE-Webinar/

PICNICS, PARADES, PARTIES

2010-06-23T09:07:00.000-07:00

I have written about how even though this is my favorite time of year, it is also my worst time. This is the season of picnics and parades and outdoor parties. We do get invites, but often the work involved to for both of us to attend is just to much. Setting up one or more sitters for mom so that we can go to a gathering, and not watch the time to rush back home. It is no fun at all when we have to go by our self, and one stay home, so most of the time, we just don't go anywhere.

As I thought about this, I went back to my being invisible post, where I had talked about how I had wanted someone to bring me free pancakes at a local spot was offering. What if family/friends considered bringing a dish or even more then one from a picnic, cookout or party, to a home where they knew a caregiver was, who couldn't get out and enjoy these functions? Does anyone think about something like that? I am not just referring to myself and my husband, but any caregiver who cannot go and enjoy these good times in the summer. Of course this can apply to any holiday or function where food is involved, and these individuals would be there if it was not for their caregiving responsibilities.

The 4th of July is coming up, it will be a quiet and lonely day, watching all the cars driving by going to the parade and then back home to get ready for their picnics and cookouts. Then at night driving downtown to watch the fireworks. Some of these things, we pretty much stopped doing long ago when the kids didn't want to anymore. But to have a choice to do them, that we really don't have anymore.

It is not just missing out on all the wonderful summer foods, some of which we could fix, but it is certainly not the same, it is that someone thought about us, and they took the time to bless us with some picnic goodies. It is not being invisible, it is someone caring about us here within these 4 walls.

Does anyone ever think about what good deed they could do for someone? Well, here you go...go bless a caregiver with some wonderful summer treats! Little things mean alot believe me!

DONNA'S SOAP BOX 2

2010-06-11T14:37:00.000-07:00

IRREVERENT HUMOR

The masks we wear...
Theatrical...
Comedy and tragedy...
Concealing that which is truth...

Is caregiving like a Greek play...
Do we play multiple roles...
Do we change our masks, as we change our moods...

Humor, not always humorous to those who hear it, sometimes is actually shocking or appalling. Such humor is needed to vent, to unleash a multitude of negative emotions from inside you, that if allowed to fester and multiply could cause a messy and noisy explosion!

Caregivers need to express and embrace humor. Some instances of humor may only be funny to the one who is speaking it because it is their way of venting. Other instances of humor may be able to be shared and understood by many.

Non-caregivers or the general public, are often shocked or appalled at certain humorous statements that might be made by a caregiver. They may encounter such a statement with, "How can you say that about your mother?!" At which we might respond with, "I am not serious, obviously!" Possibly a few more statements thrown in like, "Ease up!" or "Chill out!"

A few examples from my own personal "joke" files...

"Going to put mother up for sale!"

"Going to put her on the curb!"

"I'll help you pack!" (After she has informed us she is moving out.)

Now really, am I going to put mom up for sale? No.

Am I going to put mom on the curb? No.

Are we going to help her pack? Welll...I'll have to think about that one. No, of course not!

These are statements that help to alleviate moments of frustration, blow off some steam.

As my husband said the other day, these kinds of comments, "Soften the blow."

Caregivers who deal with the blow everyday, will understand this.

In her blog, Mothering Mother and More, author/speaker, Carol O'Dell states, "Laugh whenever you can at whatever you can. Be irreverent, be snarky, other than downright cruelty, laughter is so good for you that you need to see the humor and craziness of your situation. http://carolodell.wordpress.com/2008/05/06

Irreverent, snarky, (I like that word!) That is what caregiver humor is at times, it is not meant to be cruel or disrespectful.

Carol has a funny video on youtube called Humor Caregiving

http://www.youtube.com/watch?v=AiEcwBuGa5m

Elaine Sanchez, another author/speaker, talks about the need for humor in her article, How to Stay Positive - Three Tips for Caregivers

"We talked about how we had changed because of the illnesses. He said he and his wife have developed a greater sense of humor. They see things funny that I guess most people wouldn't. I told him I had developed a detached attitude. He calls it creative indifference and he has developed it too. I like that better, as detached seems cold. Whatever you call it, it means not allowing yourself to become emotionally ravaged by the progression of events."http://www.enhanced-life.com/articles/2007-10-21-01.shtml

This paragraph says many things that pertain to any of us who are caregivers. We have changed due to the illness of the one we care for. Some of us have developed that sense of humor, some of us are working on it, some have not found it yet. We do find things amusing that the average person would not that is for sure. The term creative indifference if very interesting, it can be used to describe ways in which we turn off the emotions that cause us pain in the carrying out of our caregiving duties.

So...as Henny Youngman said for many years, "Take my wife, please!" we say, "Take our caree, please!" He became rich and famous for his irreverent humor, we not so much, but what kind of wealth do we really walk away with when our caregiving journey has reached it's destination? Guess it might be up to us, but let's hope we can all get there will a smile and a giggle!

OH MY BLOG AWARD!

2010-05-31T08:15:00.000-07:00

Another Award! Fun!

Thanks accidental carer!

http://thisaccidentalcarer.blogspot.com/

Now, as recipient of this award I must .......and you must!

1. Get really excited that you got the coolest award ever!

2. Choose one of the following options of accepting the Oh My Blog! award:

(a) Get really drunk and blog for 15 minutes straight,

or for as long as you can focus.

(b) Write about your most embarrassing moment.

(c) Write a “soundtrack of your childhood” post.

(d) Make your next blog a ‘vlog’/video blog where

you’re basically talking to the camera about whatever.

(e) Take a picture of yourself first thing in the morning,

before you do anything else (hair, make up, etc) and post it.

3. Pass the award onto at least three, but preferably more,

awesome bloggers and let them know.

So, here goes #1! I'm so excited and I just can't hide it, I know, I know, I know, I know I won this really cool award!!! Whoo hoo!!!

For #2...

a, is not an option,

b, can't think of something embarrassing,

c and d, uh I don't think that will work,

e, hahaha, well, I am going for that one and be warned, I hardly ever let my picture be taken and I never ever would let it be taken in the a.m. such as what I have done! But here we go!

Ok! So I washed my hair and wrapped it in a towel!

But I don't have any makeup on! And.. you only get half a face!

WELL, look at this, here is my embarassing moment! Lol!

Now for #3,

a list of amazing individuals, caregivers, bloggers...people who have encouraged me, made me laugh, inspired me through these past months.

Some of you I have given another award to you, I will probably give one to you whenever I receive one because you are that special and important to me!

Donna - http://www.takeamomentforinspiration.blogspot.com/

Denise - http://www.caregiving.com/

Sharon - > >>> Bette - >>>>these ladies are bloggers on caregiving.com, I am trying to find if they have a separate blog address, otherwise you can read many of their posts there.

Skye - http://thelanfords.com/

Judy - http://chrissysmoments.blogspot.com/

Karen - http://alzheimersandmomblog.blogspot.com/

Dolores - http://www.movingforwardwithalzheimers.blogspot.com/

Vicky - http://www.blogcatalog.com/blog/josephina-josemeana-even-with-dementia-shes-still-my-mom

Kaye - http://www.sandwichink.com/

And of course Beka! - http://miraclesdontbreakthelawsofnature.blogspot.com/

Next I must contact you all to let you know of your award!

Ok winners, your turn to share the love!

Blog Award! Happy 101!

2010-05-29T17:42:00.000-07:00

This was sent to me by an amazing young woman from my church, who I refer to as Laura Wilder! Rebekah has one of the most lovely and coffee/tea obsessed blogs I have yet to come across! She is amazing, you will be missing out on a special experience if you do not check out her blog!

http://miraclesdontbreakthelawsofnature.blogspot.com/

Ok! Now for the big picture?!

I must share 10 favorite things of mine...not sure if that is easy or hard! But, here goes, and in no particular order!

Well first has to be the favorite sons, of which there are 4, as those of you who read my Meet The Family blog know!

(grouping the family pics a bit, not listing as individuals)

#1a

left to right - Dion, David, Daniel

and....

#1b

Aaron!

And of course the favoritest of favorites are known as the grandkids!

The oldest to the youngest......

#2a

Christina, Alyssa, Deryck and Darin

#2b

Tai, Aeryn, Trent and Bradford

#2b

The Youngest, 12 weeks old!

My college diploma! I received this in 2009 after 2 years of college!

My very bestest favorite caregiving friend.....Donna, otherwise lovingly referred to as New Yawker!

Photography, places I've been, nature in particular!

The California coast!

#6 Music!

Contemporary Christian - Praise and Worship

Country - Bluegrass

Opera - Jazz

Instrumental

Classical

and I love to sing!

#7 Having BIG Dreams!

#8 PURSES!!! The bigger the better! This beauty was given to me by my oldest granddaughter!

#9 The biggest bestest pancakes made by a super special lady from church just for me!

and last but certainly not all....number 10...

BLOGGING!!!!

Oo Oo! I must add one more favorite!

My little Sam! We kept Sam from the litter we had because he was a special needs kitty. He had a curved spine, was smaller and slower developing then the others. Samson, strong and mighty, roars like a lion! Now he is extraordinary and wonderful!

Sam is on the right side, his sister Lilu (who we are kitty sitting for) is on the left!

Now my recommendations for this highly sought after award are:

1. takeamomentforinspiration

by caregiver Donna

Donna, caregiver to her mom, is truly an inspiration to us caregivers, funny and poignant, always there for you with the right word! She's my bestest New Yawker caregiver friend!

2. alzheimersandmomblog

by caregiver Karen

Karen and I share very much the same experiences with our moms right now, and we will be looking out our windows on Memorial Day.....

3. josephina-josemeana-even-with-dementia-shes-still-my-mom

by caregiverr Vicky

Josephina is a joy to read about, she loves to dance and sing praises to God!

4. forwardwithalzheimers

by caregiver Dolores

A beautiful love story between a wife and her husband, beautiful photos of past and present, garden delights!

5. chrissysmoments

by caregiver Judy

Chrissy has beautiful white hair and loves to make popcorn the old fashioned way on the stove! Judy needs a lift right now as her mom is showing decline.

There are so many caregivers that are deserving of an award, to choose just a handful it very difficult. My love and respect go out to all of you!

Ok now for your assignment! Copy the picture of Happy 101 and post it in your award post, add a link to my blog, tell everyone of 10 of your favorite things, and then list at least 5 bloggers deserving of the Happy Blog Awards and links to each of them!

Have fun and congrats to all!

Summertime is Calling

2010-05-28T07:12:00.000-07:00

Summertime is calling....but not to me.

Barbecues are being enjoyed all around me to see.

Soaking up sunshine at beaches

Warm breezes caressing as they picnic at parks

Parades of the present, reminding of parades past

Brief glimpses of fireworks from the back door

No point in wanting to see more...

Festivals, I don't like crowds, and I don't like noise..

but I remember a tasty turkey drumstick..

would like just one more?

Inside is where my responsibility lies..

In staleness and silence

Hard to not envy, hard to not cry

So much has been missed, so much missed still

How long will it go on, how long till?

As I was feeding mom a few minutes ago and we were watching the Lord of the Dance video, I had the thought that there will be some who will look at this poem and think, boy she is self-centered...boo-hoo, why doesn't she just go and do some of these things? Or, what a horrible daughter, asking how long before her mom passes! As I feed her a spoon of nutritional pudding, looking at her slender, fragile frame now confined to bed because of the pinched nerve in my neck, yeah, I can ask how long till...and not be a monster, but someone who has given up basically everything to try and give her mom the best care she can as long as she can, but how long is that....so I can maybe go to a picnic again? I know who of you get this and understand.

96 Years....A Birthday Blog

2010-05-07T12:01:00.000-07:00

As a birthday tribute to mom, I would like to repost an entry I wrote some time ago, called Mom and Me, Remembering Special Times.

As a child, going downtown with mom was a treat. We would catch the bus down the block for our house and in minutes, (though in my young person excitement it seemed much longer), arrive downtown. We would go to J. C. Penney's, maybe Zahn's and t hen almost always stop at Woolworth's and take a seat at their soda fountain for a strawberry sundae! It came in one of those tall shake glasses. I remember lots of times I couldn't finish that big sundae, but I sure gave it a try! Those berries were so good! To drink, I would have an orange soda, maybe it was a Crush. That was the only kind of soda I could handle, and even that was hard for me to drink, the carbonation would always burn my throat. Woolworth's, a memory intact and a store now long gone.

As a young adult, mom and I would run around town doing various things, that's after she finally got her license at 50 something! One of our favorite stops for lunch was the Big Boy restaurant. I don't recall my favorite food there, but i do know what my favorite desert was! Cheesecake! Love it! Had to have it every time we were there. It was the best I have ever had! Big Boy's, a memory intact, a restaurant long one from this city.

Some of the things we enjoyed doing was gong to rummage and craft fairs. Mom was a very crafty lady in her later years. She took up tole painting and painted many lovely items. She would shop the rummage sales for wood items that she could paint. She also took up quilting and mad some beautiful quilts, tackling some difficult and challenging designs not just patchwork types. And her sewing! She did mostly hand sewing, making the tiniest stitches that just boggled my mine, and they were even in size and spacing! Good eyesight and control of her hands! Skills that have long since been layed aside as the years clouded into her mind.

Collections were a big part of her life too, frog stuff, owl stuff, painting stuff, quilting stuff, recipes, rocks, shells and just plain ole stuff! In the latter years she liked angels and large porcelain angel dolls. Now, 'things' are insignificant to her. Even the basic needs for life have no value to her.

One of our favorite once a year stops was Long Grove, IL. This is and old fashioned little town whose homes and buildings were turned into all kinds of shops and restaurants. There is a wonderful confectionery, a bakery and our favorite place to stop, The Apple House. Here you could, at the right time of day, see them make apple cider. We always had to buy some fresh cider, especially from the sippy apples! Fresh baked apple treats were always available as well, and samples of their featured bakery item. Oh, and the herb shop! What an explosion to the senses! Even if we didn't buy a thing, we had to go in there and breathe deeply! And I can't forget the Irish store, where the best homemade Irish soda bread ever is sold! We always bought several to take home. There are antique shops, toy shops, craft shops and so on. It was always a fun place for us to go. We have even taken the kids and the husband, but the best times were when it was just mom and me!

We took a trip almost every summer, it was mom's way of escaping my grandma! We would go to Ohio, or Oregon to visit relatives. Two of my favorite memories are riding in the upper deck of the double deck train through the mountains, seeing the majestic Mount Hood rise out of the lake as we rounded the bend, going to the redwood forest in CA, and standing inside the huge redwood trees. We also rode the bus on many of our trips. On one of these trips, as we were about to get off, mom said to the man in front of us, "Could you please let my daughter off, she is about to get sick?" He didn't ....and I did....got sick.....all over the back of his nice suit. She warned him right?

These are fond memories of times shared with mom,

as for her they are but wisps,

tucked away in a distant place in her mind.

Happy Birthday Mom!

DONNA'S SOAP BOX 1

2010-04-21T07:46:00.000-07:00

SOAP BOX – 1

PARENTING YOUR PARENT

Ok! Drum roll please, getting up on my soap box finally! I want to present my opinion on a subject that causes me irritation by those of differing opinions! However at the end of this post I will invite those of both views to express their opinions.

The subject is that there are individuals, specifically caregivers, who feel that to use the term “Parenting Your Parent” is offensive and demeaning to our position as caregiver to our parent. I on the other hand, have quite the opposite view on this. So, blow horn up to mouth and here I go!

I have done some research on this to help bolster my already very strong stand on this matter. So, I make this statement loud and clear, that using the term “Parenting My Parent”, is not demeaning or disrespectful in any way! It is a very genuine and even heartfelt statement of the position of being a caregiver to my mom. Period!

The most recent information I have read about this, is what has caused me to decide to get up on my Soap Box and take a definitive stand on the matter. This article was a link I saw on twitter; titled “Why the Phrase Parenting Your Parent Is Demeaning”. I will not mention the author of the article, but will include the link to it.

http://www.eldercarelink.com/Go/Other-Resources/Why-the-Phrase-Parenting-Your-Parents-is-Demeaning.htm

Once I read the article, I was slightly aggravated again over this statement and the thinking behind it, so I posted several ‘tweets’ in response to it.

1. I have addressed this topic more than once. I do not find it demeaning to use the term Parenting My Parent,

2. Nor do I have any shame or guilt at doing so. If I did not love and respect my mother, I would not be caring for her.

3. This carries enough burdens without having to defend a particular term that we might use to refer to caregiving of a parent.

4. I know the author has cared for several family members, I only one, and I have forged my way through the last 4 years,

5. With little to no help. So if I choose to say I am now the parent of the one who parented me so many years ago,

6. I do so with pride and with the utmost love and respect for my 96 year old mother.

Those who find this term offensive and disrespectful are certainly entitled to their opinions. I believe there are many more of us out there caring for our parent or parents who do not agree with their view.

I like to define specific terms, to gain a fuller understanding of their meaning, so I looked up the definition of parent.

Two definitions are:

1. A person who cares for another, and,

2. To be or act as the parent of…

Ok, does this not describe what a person who cares for their parent is and does? Certainly is a description of what I do. The following “Parent’s Job Description” I found online, and I chose the ones that in part describe my caregiving duties. Words in italics are my comments.

First of all, it is (often) long term, challenging, and (seems) permanent. The parent must have good communication abilities; (well we actually learn new and varied ways to communicate).

A parent needs to be organized; (to me the biggest organization needed here is to organize and manage one’s time throughout the day and night). A parent must be available 24/7, (and those 24 hours will often turn into 36).

There must be a willingness to be hated. (The one you love and who loves you….will at times show hatred and anger towards your care giving efforts). You must have strong stamina.

It is immensely helpful to be a good planner along with the organizer and manager of time, for those rare trips you may get to take.

You are indispensable, or at least you deceive yourself into thinking so. You take the full responsibility and accountability for the quality of life you provide for the one you care for.

Advancement or promotion, no, but you are always moving forward advancing through the many changes your parent makes as the stages of aging progresses.

Experience required, certainly helps but is not likely to be the case, this is more often then not a total learn as you go position, and many times you will fall on your face.

Wages,benefits, Compensation? Recompense? Well, the experience I have gained, the mistakes I have learned from, the materials I have read, and discussions I have had, have well equipped me for my plans of paying this forward, making it count for more. The knowing inside that even through the mistakes I have made while caring, parenting my mom, I have done my best for her. Compensation and recompense are coming!

http://www.kidsgrowth.com/resources/articledetail.cfm?id=2108

As caregiver to my mom, I have taken on all tasks of her care. She is in the last stages of dementia; she is mainly confined to bed, although I do try to get her up for 2 to 3 hours a day. There is nothing that she does for her own care. The role reversal that is objected to by the writer of the first article, has in fact taken place between mom and I. She is dependent on me for everything, just as a young child would be. This is the plain facts. I care for her as she cared for me, role reversal. There is nothing demeaning or disrespectful in that statement. In my blog, “If I Don’t Do It Who Will?, Transitioning From Daughter To Caregiver”, I write about putting on my caregiver’s coat and how difficult it was to drop the position of daughter and do that.

As caregiver for our parent, we deal with a tumultuous barrage of emotional and mental stresses, as well as physical duress. To have individuals make statements concerning a simple term or phrase about how we describe our position as caregiver is not encouraging or supportive at all.

Yes, someone may have much experience in the area of caregiving, and yes, they may have gained insight into how they think they should feel about what they do, and how they should describe it, but that doesn’t mean it should have to be embraced by the rest of us.

Because many of us already have to fend off feelings of guilt and condemnation on a daily basis, even though it is not intended by the writer of that article to pass such feelings on to caregivers, it is easy to fall prey once again to them.

Here is a quote from another article, “Parenting is a process borne out of love and commitment. It entails nurturing, guiding and guarding (the child).”

http://ezinearticles.com/?A-Parents-Job-Description&id=3347748

Sounds like a perfect description of a parent caregiver as well!

Caregiving, in most instances, is a process borne out of love and commitment, just as parenting is.

I am my mother’s mother, her mom, her caregiver, her parent, I take care of her! I made a commitment to her years ago and I have done the best I can to keep that commitment these past years. I make no apologies for referring to myself at any time as being a parent to my parent! There is no disrespect in those words, and I have not forgotten who she is and who she was.

Mom turns 96 this Friday…

If you disagree....have at it....aim good!

OK! Your turn to climb up on the Soap Box and have your say! I’ll even let you use my blow horn thing!

Meet The Family...

2010-04-14T13:36:00.000-07:00

Come on in and sit a spell and let me inroduce you to the rest of the family!

Daniel - David - Dion

Aaron

David, 41, retired from the army, holding newborn son, Darin

(lives in NC)

Darin, age 6

Jackie, Darin and David

Dion, 34, served in the army aproximately 10 years

(lives in IN)

Christina, almost 17

Alyssa, age 12

Deryck, age 11

Dion and Tina

Daniel, age 30, presently serving in the army, and Char, married Dec. 5, 2009

(lives in TN)

Bradford, age 6

Daniel, Char and Bradford (sshhh, one on the way!)

Aaron, age 25, Corrections Officer, (lives in WI)

Tai Michael, age 6 (he picked the green background lol)

Aeryn Jeffery, age5

Trent William age 3

Whew, that was tiring!

Alyssa, Darin, Bradford, Deryck...Grandpa on the bottom lol

And here he is.....Grandpa Gary!

And of course....mom!

Oh! Can't forget Ruby, and Mama Kitty! (bird shopping)

and the last kitty of the litter Mama Kitty had 2 months ago....

Samson...strong and mighty, roars like a lion!

Sam is 8 weeks old, and at least twice this size now, he was born with a curved spine and was smaller then his sisters and brother. We have kept him for now, to help him to grow bigger and be stronger. He can do anything the others did, and he even takes on his mom and biggest sister Ruby. When I get my camera back, I will get an updated pic of him...he is quite the spoiled kitty!

Thanks for stopping by to meet the family!

WELCOME ULTIMATE PARTY BLOGGERS OF 2010!

2010-04-09T04:23:00.000-07:00

WELCOME Spring

WELCOME Robins!

WELCOME

2010 ULTIMATE PARTY

BLOGGERS!

The Bear Hug Waltz

a journal.....a diary.....a journey.....of caregiving for my mom

Beautiful in dark green velvet...a corsage of pink roses....

A wedding day, filled with hopes and dreams......

Years have gone by, so many more then expected.....

Hi! I'm Donna, and the Bear Hug Waltz is a journal of the past four years that I have been a fulltime caregiver for my mom. She is soon to be 96 and is in the late stages of dementia. My children are all grown now and I have become a mom once again, but with the responsiblity of parenting or caring for my mother.

The posts I write are often sad, sometimes amusing, always very real, very honest. I tell about what life as a caregiver is, for me, and for countless others both male and female.

I hope you will take a few moments to read some of the posts, to see a caregiver's life realities, and gain understanding about what it is like to be a caregiver for a parent.

Patchwork Mom!

I Recommend These Recent Posts:

The Hands of Time 3/13/2010

Silent Talking 3/4/2010

Invisible People 2/25/2010

The Person Left Behind in The Shadows 2/21/2010

The Long Goodbye 2/3/2010

Christmas 09

Hope you have enjoyed your visit, please come again!

Be sure to return to 5 Minutes For Mom

http://5minutesformom.com

and keep on partying!

Tea anyone??

My top 3 prize choices are:

#20 - $50.00 in Cookie Lee jewelry, provided by Kelley Clayton, http://kelleysfamilyjewels.blogspot.com/

#73/#74 - A $30.00 Amazon gift card, provided by Escalate Network, http://www.escalatenetwork.com/

#68 - A Scentsy Warmer and 3 wax scents, provided by Mrs. Marine, http://www.mrs-marine.com/

Additional prize choices are: 4, 32, 41, 44, 49, 66

The Bear Hug Waltz

Learning From The Past

Acceptance of Change

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The Year(s) of the In-Home Caregiver and Companion Have Begun

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HAPPY BIRTHDAY MOM....missing you today....

And Mom Was Always There

Mom, I Will Remember You....

The Question Answered

A Journey Ends --- Another Begins

Moving Closer To The End

COHERENT

FACES OF DEMENTIA

Thought This Was It......

Holding Hands

End of Life Caregiving - Caregivers Library

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Embarking on Another Adventure!

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4th of July and Mom's Tuna Macaroni Salad - Repost

THE 2 Ps (Warning! Unpleasant Reading!)

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PICNICS, PARADES, PARTIES

DONNA'S SOAP BOX 2

OH MY BLOG AWARD!

Blog Award! Happy 101!

Summertime is Calling

96 Years....A Birthday Blog

DONNA'S SOAP BOX 1

Meet The Family...

WELCOME ULTIMATE PARTY BLOGGERS OF 2010!