Saga Six

It is always time to be thankful, not just on Thanksgiving. I am thankful for all that my husband means to me and also can do now. I am thankful for the rich blessings of my faith which daily sustain me. I am thankful for what gets done and what doesn't get done. As FlyLady says, "you are not behind".

Time for company. Whenever we entertain or have something to do now, DH needs a reminder, even though this is on the large calendar. We have needed our rugs cleaned--a job which he has always done. He seemed to put this off day after day. When it came down to the wire, he said why didn't I nag him last week! Of course I had reminded him, but I dared not tell him that fact--he would deny that I had mentioned that carpet. He thinks we should just hire someone or buy a new carpet, but I told him we could not afford to. He has limited energy and I realize I need to pick up the slack on his part. So  I started the carpet cleaner asking him what to do and he said that it needed to be fixed. I bought it to the repair man who mainly just told me how to use it--it wasn't broken. We began to clean the carpet. DH did a little and I did a little. He said to wake him up at 5 am the next morning and he would finish the carpets. When 5 am came he wasn't ready to get up. I got up, however, empowered by my new knowledge of how to use the machine and completed the task as best as I could. The carpeting looks striped and so perhaps it was not on the correct setting, but fresh rugs contributed to a fresh smell in the house and I was content. We had a wonderful meal with all the fixings and we so enjoyed our six guests, guests who are hardly aware how impaired my husband is. 

Need for schedules. That Thursday night of Thanksgiving we went to a Trivia event and hubby wasn't a bit hungry. Finally at 11 PM, he asked if he had had dinner. "No", I said, and he did eat some of the appetizer we were sharing. The whole week has been off in terms of timing for my husband, and I realize I need to get DH on a good schedule. He still can be trained.

Side note one. We saw "Secretariat" with my brother and sister-in-law Tuesday night. We all loved the movie about a famous race horse. The father in the movie has dementia and I wondered what DH might have thought. We have watched the movie "The Notebook" together--where the wife has dementia and at the end of the movie finally connects with her husband. We have discussed that we will always remember each other. DH is getting a photo album made--he has wanted me to do this--like the Notebook.

Side note two. I have a hearing problem--my family lovingly told me. My sister-in-law was helping me with a timer she had bought me some time back. I couldn't hear the beeping, but others could. It was mentioned that in the car when I asked others to speak up, it was my hearing. I have to take care of my health and get an ear exam. I am impaired now also.

Life continues to have challengers, but every day, not just once a year, I need to thank God for His provisions and gifts. The LORD, is indeed my strength and daily sprinkles me with blessings.

Which Magazine Gets It Right?

Last Sunday's Parade Magazine (November 21, 2010) has an article called "Unlocking the Silent Prison" by Christine Wicker. Ms. Wicker reports on work that focuses on what alzheimer patients can do rather than what they cannot do. Speech-pathology professor Michelle B. Bourgeois in the 1980s started creating memory albums and sentences to go along with pictures. The reason?

Spoken words literally go through one ear and out the other. Patients understand, but they can't store the memory. That's why they ask the same question again and again.  

Bourgeois also advises to write things down. I notice my husband likes to do that--write down when I will be home, for example, and also he checks with our large FlyLady calendar. He likes to label things around the house. Boureois is also quoted saying:

We find that if caregivers aren't stressed and in a hurry, if the patient is well cared for, and if they feel safe and in a good environment, they think their lives are good.

The picture with the article shows a sign "MOM--IT'S SUSAN."

Another magazine came to our house this week--AARP for December. At the top of the cover is "Exclusive Personal Portraits of Alzheimer's" and for a moment I thought AARP, The Magazine, might do something right. (AARP the supplemental insurance and prescription "help" have been fired for 2011.)  NOT SO WITH THE DECEMBER ISSUE OF AARP.

The photographer Gregg Segal just exploits real people with pictures from The Alzheimer's Photography Project.You can see the complete slide show at AARP's Alzheimer's Pictures. I will contact the young editor, N. P. Graham, with my thoughts on this exploitation. Is AARP, The Magazine, about exploiting old people as AARP, The Insurance and Prescription supplement is!!!!

Saga Five

DH is trying so hard to have a normal life and I am trying hard to give him that normal life. He used to be the one who managed technology; however, it confuses him now--big time. Now I have to be up on everything--often a challenge for me. He has such a pleasant personality, except when something doesn't make sense to him.

1. He asks me how to input an address in his GPS and I write it up for him. Guess what the address was for? A movie store in Lakeland! Now I pointed out to him that Block Buster Video is closer and really don't want him going to Lakeland, but he enjoys his independence. He still hasn't figured out that Alzheimer's impairs him.
2. He asks for directions to be written for how he watches his movies on DVD and Video. Recently we realized that neither one of our DVD players were working and so we bought a cheap one--not the "blue" kind. He needs written directions so he can manage his hobby of watching movies.
3. The suggestion was made to order DVDs, but you know, hubby doesn't remember all about a movie and likes to own them so he can see them again and again. We have a list of his DVDs and videos so he doesn't order one he already has. Thanks to my sister-in-law for typing up that list I just maintain now.
4. He loves to accompany me and relishes rescuing me if I am somewhere and have car trouble. He has major places I work in "Miss Garmin", his GPS.
5. Two days this week he has forgotten to eat lunch. When the WellCare insurance man was here on Monday he was very mad about the length of the visit. (AARP is increasing their insurance fees next year. But we won't be under their Medicare Advantage plan any more and will save money not only on the fees but also on medicine.) He was hungry! We went to dinner after that important insurance appointment and when we came home I saw his lunch in the refrigerator. No wonder he was hungry! He hadn't eaten.Another day when I called I mentioned lunch; he said he had eaten, but really that was another day he was remembering.

Life still is confusing for him. The big FlyLady calendar helps so much as does his watch. Time is a huge part of his confusion and all I can do to explain time and events to him is so helpful.

Next week I get to be with him 24/7 and so he will have less confusion. Hope I can coax him into cleaning the carpet and weeding outside, but if not I will just remain calm and manage getting ready for our five Thanksgiving guests. Hopefully my sister-in-law will notice big changes in simplifying at the house. Still have to figure out what to do with the stuff in the garage that didn't sell. However, next week doesn't register in hubby's mind. One day at a time for hubby. We should all live one day at a time! 

Saga Four

Sally and I went to the ALZ care group while Jake helped DH plant plants in the circle in our front yard. They have a fence that needs painting. I wonder if I can send DH over there to help with that.

I participated in the Memory Walk for the Alzheimer's Association on Saturday. Thanks to Lisa, Jane, Sherry and Phyllis who contributed funds for my team.

We appreciated the other primary care doctor my husband had, but it turns out the PPO such as AARP is more expensive. We will save so much more with an HMO. Today, after researching programs to supplement Medicare,  I signed us up for an HMO with WellCare for 2011. This wll help tremendously with the cost of medicine I wrote about in July. This involves a change of doctors for my husband, but I can keep the same doctor. I talked with the business manager in my husband's new clinic and we chose a new primary care physician.

Time Magazine on Alzheimer's

The October 25, 2010 issue of Time. The picture on the cover shows the visible deterioration of the mind. Alice Park writes in the lead article, "Hope in Darkness", the following:

• Alzheimer's disease is  "the degenerative brain condition that is not content to kill its victims without first snuffing out their essence."
• Research funds are lacking. Dr. Ronald Peterson of May Clinic is quoted:

We spend $5.6 billion a year funding cancer studies, $1 billion a year for heart disease . . . and $500 million to study Alzheimer's. Yet what is going to get most of us in the next few years is Alzheimer's.

• Park says about the new research, "Who in his right mind would want to know he had a disease that would inevitably rob him of that mind?" Yet Park writes: "Experts are now convinced that it's crucial to treat Alzheimer's patients as early as possible, perhaps even before they show signs of memory loss or cognitive decline, rather than attempt to improve a brain already scourged by the disease."
• Brain scans now are better. Amyloid patterns can be detected that previously only could be confirmed in autopsies. Perhaps this is why the USF Byrd Institute could make my husband's diagnosis recently.
• Park concludes "living robustly and well is one of the best weapons we have against the disease--at least until science's heavier artillery is finally ready to be wheeled into place."

Patti Davis writes also in this Time issue that we have to learn the lesson of acceptance rather than asking why. She points out that "men tend to back away in discomfort. Woman, on the other hand, inhabit the experience fully, with its sorrows, its calm stretches, its dramatic explosions and even its humorous moments." Yes, Patti, that describes this blog. Also I know of fewer men than women who blog about the experience also.

The last essay in Time is written by Nancy Gibbs. She points out that "Medicare does not cover basic long-term care, and you have to burn through your savings to qualify for Medicaid." For people still working you can sign up for care in January with the new health care bill and be vested after five years--at only $50 a day--totally inadequate. There is nothing that can be done for us senior citizens in that new bill it appears.  

Meanwhile, as I finished reading Time,  an e-mail came in. Heavy smoking appears to be a factor in Alzheimer's and dementia according to a report from the Alzheimer's Reading Room. Post on Heavy Smoking.  A link to that reading room where you can subscribe or read regularly is on the right of this blog.

Saga Three

The garage sale was held Friday and Saturday. We raised just over $100 and I still have plenty to get rid of, to give away, to donate or to recycle. Sally and Jake came over to help. Sally and I  manned the sale and enjoyed chatting while DH and Jake enjoyed each other hanging out in the family room.

I came in to get coffee and was elsewhere in the house. DH called with a question.

"Just a minute, sweetheart," I said from the bathroom.  "I will be there."

When I came out to the family room, I asked "Now what was the question?"

"I forget now," said DH.

"I forgot too," said Jake with a smile on his face. Now I wonder how long it will be before both of our husbands recognize short-term memory, dementia or even Alzheimer's in their new friend!

Later a young couple came over and the men were put to work loading up a love seat in my husband's trailer. The young man, DH and Jake took off with my husband driving. (He really is a good driver and did pass that test.)

Later when the three men returned,  I asked the young man how the trip was driving the new furniture to his apartment with two Alzheimer's patients. He said they kept asking him what he did for a living and he kept telling DH and Jake again and  again. I am so glad he was patient.

Come by right away if you are interested in something for free before the stuff disappears from the garage. I want to be able to park in the garage again because it is getting colder. On to more household organization and perhaps another garage sale in the spring.

I commented on the Alzheimer's Weekly link above after Dr. Newport. There is a discussion of coconut oil there.

Fifth Book Report: My Mother Has Alzheimer's

I met Linda through the blogging world and her blog is listed at the right.

In her book Linda A. Born wants her mom to take care of her as in the past, but humbly accepts her new role as the caregiver for the mother who has Alzheimer’s. She writes at first of resentment and anger, and then discovers compassion and the Lord’s provision in her walk through her caregiver ministry. I just held on to every word as she has a parallel walk as I have. I would recommend her journey for anyone accepting the suffering as a caregiver as she gently and profoundly takes you through the process.

Her story is both similar and different from mine. I have also learned from Linda's book.

Similarities. Her mother and my husband are both able to feel and to love. I am putting his for her in this quote. “[His] Alzheimer’s had not robber [him] of the ability to love me, and [his] love was a blessing to me still; but [he] could no longer be a dependable counselor or confidante.” (p. 184) I remember when I wrote about that in an earlier blog--about how hard it is for my husband to not remember things about me.

Linda writes “It is actually a great comfort to recognize that our loved ones who suffer dementia are not aware of the pathos of their circumstances.” (p. 23) Yes, Linda, it is great they don’t realize. My husband does not read books or research the Internet now about Alzheimer's as I do. It would upset him, and it has upset me. He is just happy being retired at this point.

I began distancing myself from my husband like she did from her mother. My justification for the earlier distance was that DH didn't understand my logic and talk. However I learned that I should not do this; others in his life might distance themselves, but not me. He will be lonely if I do that.

I am in my marriage for better, for worse, for sickness and health and my husband is also. How I loved when he was still working and when public school teaching became unbearable.  DH said it was okay to retire from public school teaching. He has always been in it for me for better and for worse. That is his commitment to me and my commitment to him.

Linda mentions the photo albums that were important to her mother and my husband wants me to create photo albums for him. Hope to have his done for his Christmas present.

At first got mad with my husband over his laziness. I learned like Linda with her mother, to give that up. Linda writes about “possible scenarios of doom” (p. 210) and I have cried out to God also for these possible senarious.

Linda also mentions problems with over-eating. When I first was dealing with my husband’s dementia, I put on weight—not a smart thing to do and now at my age it is so much harder to lose weight.

Differences. Where Linda has become angry, I have become depressed. I do see other blogging caregivers upset. Both Linda and I ran to the Lord for help, however. She is philosophical when she writes, "Life is full of transitions, and most of us don’t like this fact.” (p. 27)

She is mad that her mom was leaving her through this slow death. I have lost both parents and my first husband—but not by the slow painful death. “I suffered all the negative emotions of anger, resentment, fear, and doubt; and about the only thing I did right was to continue to cry out to the Lord. . . .my anger was not reserved for my mother. No one I love was safe from my tirade of words.” (pp. 63-64) “I was afraid of being left alone in the world.” (p. 203) I had been alone as a widow in the past, and feel with friends I will be able to handle this. I am however afraid of finances and my husband's deterioration due to Alzheimer's. Heaven awaits him as well as me. This life is not all. I know Linda recognizes that too, but she doesn't dwell on it as much as the loss of her mother.

Insights from Linda

• Be the facilitator. "This ability to separate the disease process from the Mother I knew and loved was a crucial shift in my thinking. Once I gained an acceptance of the fact that her aberrant behaviors were disease related, I no longer viewed myself as the long-suffering caregiver who was putting up with her mother’s difficult behaviors. I was to be a facilitator, not a dictator. I became a fellow soldier with my mother in the battle against Alzheimer’s. I was on her side."(p. 100) Don’t be patronizing or treat my husband like a child I realized.

• Linda points out the wait time between diagnosis and death and calls for the patience of release, the patience of acceptance, the patience of faith, the patience of hope and the patience of love. (p. 106) I will go back to that page often.

• “I need to discover the difference between casting my cares on Jesus and casting blame on others. . . . I needed to ask God’s forgiveness for the harm I’d done to others while I was preoccupied with a struggle against my own burdens.” (p 121-2) Oh yes, Linda, I have been hurt by thinking others owed more attention to our situation. Instead I have to cast my cares on the Lord and flee to him.

• Linda’s mom used to have many friends, but now it was just Linda. However my husband still has friends and new friends such as Jim. We have to keep up these friendships while we can.

• “The Lord was the one who had placed the job title, 'Alzheimer’s Caregiver,' after my name," writes Linda on p. 201.

• “I must not lapse to self-pity, and I must not look at my own sacrifice. There is nothing I can surrender to the Lord that will not spring forth new life in Him.” ( p. 243) Wonderful insight.

• “If you find yourself bound with resentment from the feeling that you have been appointed to be the center of your loved one’s universe, let yourself off the hook. God is the Provider for your loved one, and He will provide for you too.” (p. 163). Linda, I am going to memorize these words.

Thanks so much, Linda, for providing this rich fellowship for me. I wrote a review on Amazon and another site and will continue to look for your posts.