My Mothers Dementia; A Caregiver's Journal

History learned

noreply@blogger.com (Marty) — Fri, 09 Sep 2011 13:30:19 PDT

After my mom passed I received a call from an old family friend. I learned that my mother was co founder of the local CAPS ( child abuse prevention services) program. I believe that I have already mentioned she was co founder of our local hospice program. I continue to learn of her service to her community. She touched so many lives. Now I want to honor her by doing the same. I just need to find my niche so I can continue my mothers legacy of community service. I hope to continue my blog. I have been told that my blog has helped others. If I can help you with a situation you are facing please feel free to contact me on my blog or by e-mail.

Time with my mother

noreply@blogger.com (Marty) — Fri, 09 Sep 2011 13:10:10 PDT

I am not sure how to start this blog today. My mom passed peacefully at home last month. I was blessed to be at her bedside when she passed. Saw the peaceful expression on her face. But, the loss has been hard. I had become so use to people in and out all day and night. The house seems to quiet now. After spending so much time trying to be creative and staying on top of things I am at a loss at how to act. Free time is overstated.

Family

noreply@blogger.com (Marty) — Thu, 16 Jun 2011 17:38:30 PDT

My sister came to visit. For a caregiver this is a vacation. No cooking and adult conversation. I'm so grateful for my family. They always seem to show up when I need a break. Mom still eats about 4-6 ounces of food daily with 5-8 ounces of water. My mom has started biting her forearms. I do not understand why. But, being afraid of her breaking the skin. I cut the toes out of her socks and slid them over her forearms. Now she bites the material. Seems to work for now.

night time praise

noreply@blogger.com (Marty) — Sat, 11 Jun 2011 05:50:34 PDT

Sometimes at night when my mom is agitated. I go into her room and sing her praises. I tell her how wonderful she is. Kind,Caring,giving, pretty and sweet. How much she is loved. To which she will turn her head towards me smile chuckle. Say "thank you" then. I lose her back to the dementia. It can be sad at times but, for those few minutes she actually sees me it is worth it. I wait to see if she is calming. If not, we start all over again with praise. It can take time but, she will calm close her eyes and fall asleep.

2 worlds

noreply@blogger.com (Marty) — Sat, 11 Jun 2011 05:34:33 PDT

I have not been good at keeping up with my blog. For that I am sorry. It is hard at times to try and explain how sad this disease makes me feel as it steals my mother from me. Hard to see a robust woman of 160 pounds become a frail 130 pound woman. It has been 3 weeks now and we are lucky to get 3 1/2 to 5 ounces of baby food into my mother with 5 ounces of water daily. She is very weak now. But, she is calm. I believe God took the fear from her as I had asked. I have learned that tho I can not see the people she is talking to. I talk to them with her. When they are bothering her I shoo them away and she is content. I feel I live in 2 worlds. My mom's world which is very real to her and the outside world.

Whats to come

noreply@blogger.com (Marty) — Mon, 30 May 2011 18:49:54 PDT

I think I have lost those moments of cognitive thoughts from my mom. Luck had it my sister called and was able to speak with her. It is hard to watch this robust woman become small and fragile. Tho my caregiver from Home Instead and I continue to offer food. It seems to end up remaining in her mouth. I know I should talk more about our life but, sometimes I do not know what to say. Many nights I am afraid to check on her. She may be gone.

A new day

noreply@blogger.com (Marty) — Thu, 26 May 2011 15:37:12 PDT

Mom spends most of her evenings talking to my Father ( who passed 4 yrs. ago). With each conversation she is asking "please help me". I don't know how to take this. It seems to bring her comfort at times. At times she seems frustrated. During the day's she remains alert when spoken to. She is still only eating bites at a time. Maybe by the end of the day she will have eaten 1/2 a meal. I have found that ice cream or baby food has become her favorites.She is drinking 8 ounces or more daily. With all this, she remains in the happy place. I pray she remains in it.

A new mom

noreply@blogger.com (Marty) — Tue, 24 May 2011 14:00:40 PDT

This is a hard blog. My mother is basically coherent. We have small conversations. She tells me if she likes what I am feeding her. She tells me what sounds good to eat. She says thank you. Responds when then breeze falls on her with," that is so nice". tells me Good night honey. Things I have not heard in 8 months. She chuckles, smiles appropriately. I am elated but wary at the same time. Her voice is weak ( small). I will try and not question all this. My mom is in a happy place. She appears calm and content. What more can I ask when dealing with such an ugly disease. Prayers to all.

Mom's comming home

noreply@blogger.com (Marty) — Tue, 17 May 2011 18:52:23 PDT

The bed has been ordered. Medical supplies in route. Mom will be coming home Friday. I visited her today. She seems so far away (withdrawn). Non verbal, wont smile. Wont eat or drink much of anything.I hope when she gets home we will be able to bring her around. Praying to get her on her feet again. Begin to feed herself again. Smile at us again. With all these thought's and concern's. I CANT WAIT for her to come home. It is time to start a new round of creative thinking. My mom is a stubborn woman. But, she has met her match in me. God willing I will win. Thank you for taking the time to read this.

A new day

noreply@blogger.com (Marty) — Mon, 16 May 2011 12:07:50 PDT

A new day comes with new challenges. Mom is comfortable but,unaware. Hospice has stopped the opiates. Which I believe will allow her to be more aware, once they are out of her system. She will be coming home, I am told but, the house must be made ready for her return. Out with the old bed in with a hospital bed. Equipment for comfort and a new medication regime. How long she will be with me when she returns home only the good Lord knows.

We may be to the end

noreply@blogger.com (Marty) — Sun, 15 May 2011 18:39:03 PDT

Well I believe my mothers journey with Alzheimer's is about over. I pray she finds peace . She will no longer eat or drink. She wants no one to touch her. I have given up my selfish need to keep her with me. I had her placed in Hospice House for pain control. Will know the doctors opinion tomorrow. I continue to pray for all caregivers of loved ones.

my mom my stranger

noreply@blogger.com (Marty) — Sat, 07 May 2011 11:19:22 PDT

I long for the days of no worries. I miss the days of just doing and not having to think constantly. I am tired of being creative. I am tired of trying to fix problems daily. I sit with my mom who has dementia and it is progressing so fast now. I want her with me for so much longer. But, want her to have peace. Again with guilt. My prayers are with all the caregivers that are feeling the same as I do. My mom my stranger.

Hospice

noreply@blogger.com (Marty) — Fri, 06 May 2011 14:21:31 PDT

I met with Hospice today. What a wonderful organization. I was informed that I could stop feeling guilty for not wanting to take mom into the doctor's office. They have nurses and doctors that will come to her. They also provide respite services if I was to get sick. ( I can now get sick) Or want to take a weekend off. They have assistant to help with bath's. Volunteers to sit with mom for a couple of hours if I need to go to the store. Or want to work in my yard on the weekend. I have been blessed to meet so many wonderful kind people willing to assist me. I am just one of many caregivers with a loved one at home. Please check within your community for these wonderful services. Bless you all. Thank you for reading my blog.

A wise woman once said

noreply@blogger.com (Marty) — Tue, 03 May 2011 13:38:14 PDT

I was told once, a skill is lost by a loved one with Alzheimer's it is like closing a blind that can not be opened again. I am learning this to be true. I get frustrated when the simple skills that my mom has been able to retain slowly disappear. The lost look I see in her eyes. I so want to reopen that blind. I have a hard time focusing on the positive. That is were my village comes in. I count on their kind words of encouragement to help me remain focused on the things she can still do. Luv you all.

The body knows even when the mind does not.

noreply@blogger.com (Marty) — Mon, 02 May 2011 13:26:55 PDT

My mom has fought High blood pressure and diabetes for 10 years. I had blogged that she began refusing her medication about a month ago. I knew she was winding down and have learned to pick my fights. For my own sanity. Though my mom has gained about 10-15 pounds over the last year her blood pressure has been holding at 134/74. Her blood sugar is 98. I will not ask why. But, believe the body knows.

Always a new question

noreply@blogger.com (Marty) — Sun, 01 May 2011 13:09:44 PDT

Is this the calm before the storm or is mom feeling better. I have done a lot of hospice over the years. I do not know what worries me more. Mom confused and not eating or mom somewhat alert and eating. I pray I get to keep her for years to come. Thou she begs to have that gate open for her. And she remains afraid to sleep. Such a cruel way to end life, to have one's long term and short term memories taken. Only to be left with fear.

what to do?

noreply@blogger.com (Marty) — Thu, 28 Apr 2011 06:01:45 PDT

How do you make someone eat that does not want to? For a while colored plates worked. For a time fingers foods worked. But, now it seems the taste of food is repulsive to my mom. We now put food in her hand and hope she will raise it to her mouth. Or we feed her but, she only eats a very small amount and refuses anymore. How do you get a loved one to take pills when they don't want to take them? For awhile mixing her pills with applesauce worked. Then she began holding them in her mouth. Sometimes all night. I can not crush them all because they are coated for slower absorption. The ones I did crush she began spitting back out. I am out of ideas.

Luv it when that little light bulb goes off and I can say "ahhh"

noreply@blogger.com (Marty) — Wed, 27 Apr 2011 04:46:08 PDT

At night when I can't sleep I run through some of moms actions trying to make sense of them. A few nights ago I was trying to figure out why mom walks around whining, moaning, why she startles so easily. I know she is drawing more into herself as the dementia takes her. But, that night I came to the understanding that maybe this is her way of communicating now. Since she can't converse with me this may be her way of saying I'm sad. I don't know what to do with myself. So instead of asking whats wrong? I tried hugs. a kiss on the cheek, an arm wrapped around her shoulder for comfort. That good old pat on the back. It worked, she smiles more now. The whining is less. I am learning we don't only communicate with words. We can sit quietly with a loved one arm wrapped around the shoulder and provide great comfort.

I felt for those of you who have not read my posting in the past this is very important information for a loved one with ALZ.

noreply@blogger.com (Marty) — Tue, 26 Apr 2011 13:28:50 PDT

eye sight information
I was going through some of mom's medical reports and came across a statement of moms loss of visuospatial skill.This is what I found out.

This is one component of cognitive functioning and it refers to our ability to process and interpret visual information about where objects are in space.

This is an important aspect of cognitive functioning because it is responsible for a wide range of activities of daily living.

For instance, it underlies our ability to move around in an environment and orient ourselves appropriately. Locating steps. handrails. Visuospatial perception is also involved in our ability to accurately reach for objects in our visual field and our ability to shift our gaze to different points in space. Such as finding a chair behind us. Finding food on our plate. locating a glass on the table. Or the simple use of a spoon or fork.

Tips and hints I hope help others.

noreply@blogger.com (Marty) — Tue, 26 Apr 2011 13:10:10 PDT

Noodles the swimming tool for children make great bumpers for sharp corners. Glowing stars that children use for their ceiling work well to line a door you want your loved one to notice at night ( like the bathroom.) I had put plastic runners down to protect the carpet from urine drips on the way to the bathroom. To keep my mom on the plastic path I picked up safety reflective tape. But, found it wasn't functional till I mounted lights ( battery mounted night lights). to the bars of her walker. So now she has head lights. It seems to be helping. Last but not least I want to say plastic colored plates make dinners easier. Mom is able to see her food better. Due to the color contrast. I picked bright blue. As well as using plastic wine glass for liquids. They are lighter and the stem is easier for her to hold onto. Hope this is helpful. Thank you for reading

No.....

noreply@blogger.com (Marty) — Tue, 26 Apr 2011 12:57:51 PDT

The first word a child learns is no. But, with Alzheimer's it means nothing. I feel guilty correcting my mother all day. No you can't go down the steps. No it is raining you can't go outside. No. that is your son's bedroom. No that is my bedroom. Thank God for baby gates. I do not have to say no as often. Plus, my mom is safer.

A village

noreply@blogger.com (Marty) — Sat, 23 Apr 2011 06:26:06 PDT

Our presidents wife said It takes a village to raise a child. It also takes a village to care for a loved one with dementia. I want to thank my village. My family that encourages me daily. Who no matter what time it is. they are available when I need them to listen, when I am frustrated and feeling at the end of my rope they listen. You don't know how important that has been to me. my caregiver from Home Instead that is at times more creative than me. Who is a great brain stormer. Together as a village my moms quality of life is greatly improved. Thank you all.

Question I have been asked but, can not answer.

noreply@blogger.com (Marty) — Thu, 21 Apr 2011 13:26:40 PDT

My mother appears to be winding down. I know she has severe dementia. I believe that she works very hard to communicate to me and this causes her to become physically tired. But, the question asked of me was do I believe she has the mental ability to say "I am tired of fighting." Which I believe we all have, and just giving up. All opinions would be appreciated.

I learned that being creative when careing for a loved one with ALZ was key

noreply@blogger.com (Marty) — Thu, 21 Apr 2011 13:16:59 PDT

My mom had fallen out of bed. Bruised herself well. After the guilt passed, I tried to find a way to keep her in bed and safe. After a day of web searching and phone calls to ALZ. agencies. I became frustrated thinking the only option I had was to sleep with mom so I could keep her safe. God love my Home Instead caregiver. She first asked. Then while I was shopping she went into my moms room took her bed frame apart. My mom now sleeps on her box spring and her mattress. No frame no height. no worries. Now we both sleep.

The good and the bad

noreply@blogger.com (Marty) — Fri, 15 Apr 2011 13:14:53 PDT

My mother has become unhappy with showers and tho she is small she is mighty. The change I made was to buy a small infaltable childrens pool. A very bright ( red)plastic lawn chair. Plus, we turn up the heat. No more fighting over a shower.