Saturday, May 16, 2009

REPORT #2 ON CAROL


AD is still in control. I just try to find as much happiness for Carol all during the day. Her Anger spells have improved quite a bit and when she does have one, it seems to be her pride and self esteem that are hurting. She wakes up most mornings and crys. She can’t tell me but I can tell she is talking about her inability to do things. It is so sad. I hurry and get up and get us dressed. I have to help her with her bath, her make-up, help select her clothes, etc. She does try to make up the bed and it looks OK when she is done. She can brush her hair, put on her mascara after I hand it to her. She can put on her foundation, etc if I guide her a little. She really does not know that she looks better with her make up. This is just recent. Picture above is Carman giving her mother, Carol, a shampoo.

Breakfast is next and she can feed herself but I have to get out the cereal, bowl, spoon and milk. Only thing she still tries to do in the kitchen is wipe the tables and counters, also the floor with a napkin. I try to let her put away the dishes and glasses from the dish washer but it we have to really guide her as to where things go. She eats well but a little slow because she gets sidetracked with looking at anything with pictures. At restaurants, she really enjoys the presence of children and waves to them, makes faces, and often stops on the way out to talk to them. I have a card that I sometimes give to waitress and parents of the children. It says “Thank you for being patient with my Wife. She has Alzheimer’s”. I don’t want people to thing she is senile. But it is surprising to me how people do not seem to understand. On the other hand, many will say that a relative or friend of theirs has Alzheimer’s.

Carol still loves movies, especially Cinemark and even at home on TV. She laughs at the right time and seems to be able to follow some of the movie. But she can loose interest real quick. Addy took her to Cinemark yesterday and Carol griped from the start of the movie with Jamie Fox, so Addy took her down the hall to another movie and Carol was perfectly happy. Carol still likes to talk but most of the time it is very hard to figure out what she is saying. Sometimes I can figure it out by hand movements, or just one key word because she does tell the same stories over and over.

Physically, she is in pretty good shape. We have been working on a UTI lately but I was glad to hear it was that instead of incontinence. She sleeps well at night and often naps during the day while she is watching TV. She shuffles more now but no indication of imbalance or falling. Sees and hears very good but her ability to smell and taste have really declined. Carol still enjoys talking to our friends, even though she may not remember your name or from where she knew you . Thank you for your consideration and understanding.
If you want to add your own comment, just click on the word "comments" below.
bill

Sunday, May 10, 2009

CAROL'S PERSONAL TESTIMONY, 2000

I found this Word Document on Carol's computer just a few years ago. I had never heard her talk about this great day in her life with this much detail. I thought you might like to read it.


"I was raised in a wonderful Christian home. My Father was a young Deacon and Mother worked in the nursery. The first time Jesus spoke to me about giving myself to him was in 1943. I was seven years old. The Lord spoke to me in church one Sunday in March and I instantly understood what our pastor had been preaching about – when he said we needed to give our live to Jesus.

This was in the middle of World War II and we were flooded with radio news about the war. Every evening after supper we would gather around the radio to hear war reports. We were to knit sweaters, grow food in our back yards, ration sugar and could not buy tires for our car. The whole country sacrificed for the war. Every Sunday I would ask my grandmother to move us closer to the front of the church. Closer to Jesus. Finally, one night, I could not go to sleep. I tiptoed into Daddy’s bed for a talk. I asked him, “Daddy – is it alright to love Jesus more than the war?” He explained that Jesus is the most important person in the world. More than war, cars and gasoline. We talked about giving my life to Him. The next Sunday I went to the front of the church and told the pastor that I had given my life to Jesus and wanted to be baptized. I was baptized on the afternoon of Easter Sunday. The pastor gave me a lily from the flower arrangement in front of the pulpit.
I don’t remember anything else about being seven years old. Only the fact that I had given my life to Jesus and I will someday live in Heaven with Him. My seven year old grandson Alex was baptized this week. And I know, with out a doubt, that someday, he will be in Heaven with me"



I am so glad I found this before she lost her ability to type.

Thursday, May 7, 2009

THE LONG GOODBYE


Alzheimer’s Disease is often called THE LONG GOODBYE and that is such an appropriate name. I have called it the slow death also. Carol has had beginning symptoms of AD since 1996 but real debilitating and visible actions of her daily life since about 2003-4. She first started with just short term memory but long term memories also came along and that was probably began THE LONG GOODBYE. But I could not carry on a conversation with her on our beautiful past activities. Names of people, places, things, etc. were a daily occurrence. This was when I first began to really feel that we were loosing part of her living person. I no longer had the girl I had married. A new girl was beginning to take shape. I inherited a great love for this new person but there is no doubt that it is a new person. Or at least a new personality.

A book has been written by this same name, “THE LONG GOODBYE”, written by Patti Davis about losing her father, Ronald Reagan to AD. I have not read it but will try to do so. So many illnesses take away only physical things but do not really affect the personality of the patient. AD strips the patient of their cognitive abilities as well as all the personal attributes. They also loose smell, taste, and later even hearing, and eating.

Some of the other caregivers I communicate with talk about being a “married widow”. Carol and I no longer talk about husband/wife things like the children, grandchildren, vacations, movies, entertainment, etc. We are no longer a typical husband and wife. I will never leave her and I have trouble hoping for a cure. I do hope for some kind of breakthrough that could return some of the brain functions that have been severely damaged. She takes medications to slow the disease down and I sometimes wonder if she would really have wanted to drag out what is now considered inevitable. But I continue to dance with the girl what brung me to the dance.

Sunday, May 3, 2009

Home Care HELPER for Carol



We have had several ladies who specialize in Sr Home Care. They have all been from Ghana and have been a real help for Carol and me. They do some light house keeping and cooking for about 3 days per week. Adde is our current Helper and Carol really likes her. They look at a lot of picture books and journals. Photos of any kind are Carol’s favorite pastime and Addy has the patience to look at them with Carol. Adde’s mother in Ghanna loves to grow vegetables and we have planted a little garden here at our small yard, hoping that Carol will renew her enthusiasm with gardening. Things are just now starting to grow so we will see. Addy has a husband and 2 girls, 3 & 5 who come out to our house occasionally. Carol loves the girls and they play well together. Addy is expecting a baby boy in latle June or July and Carol gets excited when she notices the babies growth. Stay tuned for future GARDEN REPORTS.

Monday, April 27, 2009

Are Caregivers Blessed?????--I think so!!!!

I have been communicating (via the internet or support groups) with a lot of other Caregivers for a number of years and I see and feel so much pain and anguish in their lives. Many of them seem to blame God for the slow death they see their LO going through. They could have trouble describing their life as Blessed. So many Caregivers feel angry with God. Or certainly disappointed and confused over their understanding of A Loving God and His Son Jesus Christ. They question how a God could let this horrible situation exist in their lives. But,---- many of the Caregivers have a very strong belief in God and want to trust in Him for what they are going through. The patients vary all over the map as to their cognitive abilities and may have beliefs but are not able to communicate their faith. Others have just plain lost their apparent memory of their beliefs in anything. The patient does not have much hope to ever recover their memories. But---- the Caregivers have time to find God as their comforter, their counselor, and their need to develop a closer relationship with our Savior and our Lord. I feel that I am Blessed in this opportunity to care for Carol under the Lord's leadership. He is our piolot.

The A.D. person we used to know is now gone. I still love the current Carol but I miss the old Carol & realize that she is not likely to return. Another sad part is that I have now lost my own memory of who Carol used to be. I can not remember her smile, her laughter, our conversations, our 49 years of marriage. I have heard from other Caregivers that after our LO physically dies, the Caregiver usually gets the old memories back. I know that God has not forgotten us but I also have to constantly remind myself that I am still serving my Lord as his witness in these current times. It just isn’t the same witnessing as others might consider in their ministry. The sermon in our church last week spoke directly to the ears and understanding of a Caregiver. It was asking the question of “What are you hungry for.” The subject was that we are CRAVING for SIGNIFICANCE. It is good for all Christians to crave significance. Several of us agreed to this sermon’s impact on our life as Caregivers. Our significance is found in our relation ship with Christ. I was Created, Recreated and CALLED to;

Learn from Jesus
Commit to be a Servant
Move towards spiritual sacrifice (not just servitude)

You can listen or download this sermon, April 19, 2009 at:

http://rockwall.lakepointe.org/OnlineMessage/current_message.aspx

Listen to it with the heart of a Caregiver. I think you will feel BLESSED!!! bill

Tuesday, April 21, 2009

CAREGIVERS

Have you ever thought where our country would be without Caregivers to take care of our Alzheimer’s patients in the U.S. The costs to Medicare, Medicaid, Insurance, and state programs is over $148 million for the 5.3 million cases in the U.S. The costs to the Caregivers is bigger than that because gov programs do not cover much of the Cost of home care provided by caregivers. We have spouses taking care of spouses, children taking care of parents and/or in-laws and some siblings taking care of siblings. The health and death toll among the caregivers is staggering. It is a very hard job and most of it is 24/7. I have a lady that comes to our house 3 days a week for 6 hrs/day. She is a great help to both Carol and I but it is still very exhausting to me. I also have two children and 6 grandkids in Rockwall and of course that is a big benefit.

I want to tell you a little about the Caregivers I have communicated with since 2005 through message boards on Alzheimer’s Assoc and a private Blog called thealzheimerspouce.com Other folks are mostly ladies but there are a lot of men. Our outlook on caregiving is somewhat different for men vs woman but the main ties are basically the same. We still have to deal with the memory loss, the emotional problems, the anger outbursts, personal hygiene is a major problem, especially as incontinence reaches each family. My respect for the caregivers I have met is of the highest order and I ask each reader here to pray for the Caregivers as well as the patients. One of the oldest and still best reference book is “The 36 Hour Day” which kind of tells you the total and complete involvement of taking care of the Alzheimer’s patient.

Sunday, April 19, 2009

Carol is on the Prowl for BABIES

Many of the experts say that late term AD patients have the mental level of a 2 yr. old child. I don’t know about that but Carol sure likes to watch and talk to young children. We purposely go to McDonalds, IHOP, and CiCi’s so that we can see the children. Sometime they are sitting closely and they seem to know that Carol loves them because they keep looking back at her and making faces when she makes faces at them. We have calling cards with “Thank you for being patient with my Wife. She has Alzheimer’s.” and I give one to the parents so they won’t think we are crazy. The results are just great. Once the mother encouraged her two girls to go over and talk to that nice lady. They came over to our booth. The smallest climbed up beside Carol and actually gave her a hug and a kiss. I just wish that Carol could have remembered it longer. We used to work in the nursery once a month and that was always a good day but I had to give it up because my severally degenerated back made me worry that I might fall when picking them up and/or carrying them. But Carol still seems to have a vague memory of our Sundays with the Babies.