Monday, December 27, 2010

Drawing for Free Book

In honor of the two year anniversary of this blog (and two other ones), I am giving away to three people a copy of my book Getting Off the Niceness Treadmill. You have to have commented in November or December on any post to enter the contest. The drawing will be 1/1/11.

Tuesday, December 21, 2010

Saga Seven

We had an automobile accident Sunday coming home from church. It was a crash waiting to happen. It is no "accident" when someone decides to drive after drinking. The picture shows the investigation by the Sheriff's Department. Call it that driver's crash and our "accident", where we were protected by divine hands. (Nothing in our lives is an accident knowing that the almighty God is there for us.)

I am driving our Saturn and see an Explorer not stopping at a stop sign and barreling though the railroad tracks perpendicular to our car. There is going to be a crash! I swerve into the oncoming traffic lane where there were no cars to try to avoid being hit, but it was not to be. LORD, thanks for our lives. Thanks that I am not a widow again. The driver gets out briefly and then tries to leave the scene. However the good old boys of Plant City are not going to let him flee the scene. The Explorer trying to flee loses control and ends up driving on the railroad tracks before being stopped by perfect strangers who are waiting for authorities to come.
  • 5:01 pm the Sheriff  receives call from 911 dispatcher.
  • 5:08 pm they arrive at scene.
  • Paramedics check us out. Huge bump on DH's leg gets treated with an ice pack. I suspect that the glove compartment flew open and caused this. Note in the pictures how close my husband in the passenger seat was to being hit straight on.
  • A lovely lady whose husband is the Youth Minister at nearby church comes and prays with us. We also pray for the gentleman who hits us. By that time we have heard that he smells of alcohol. She also uses my digital camera to shoot pictures.
  • Daughter of DH comes and we transfer items to her car where we wait until they are able to let us leave. (I had called her on my cell and police let her car through the barricade.) 
  • Tow truck carts off our Saturn.
  • Railroad worker inspects the train track.
  • 7:00 Report is finished and we are allowed to leave. We see Explorer driver given sobriety tests as we leave.
  • 9:00 Arrest for DUI with Property Damage and no valid driver's license. He did not face other charges according to the Sheriff's on-line report such:  open container (reportedly he had taken them out of car); fleeing the scene; running a stop sign; and no valid insurance.  
  • 10:37 PM Gentleman  is checked into jail and bond is set at $2,750. DUI with property damage is $500, $250 no driver's license, $2000 for previous warrant for no driver's license. BAC (Blood Alcohol Concentration) given as .172/.180. This makes his BAC well over .25 ( three times the presumptive legal limit in Florida) at the time of his crash and the estimate is that he could have had ten beers or whatever alcoholic drink he chose to imbibe in a short period of time. (You lose .015 BAC per hour after you stop drinking. According to Sheriff's web site he has been in jail two nights now--no one bonded him out.)
  • Meanwhile at home DH goes to bed with yogurt and his medicine including Ibuprofen which DH's daughter thoughtfully goes out to get for us. I take a pain med and Ibuprofen and start to get food before I pass out. I recall holding strangely to the kitchen counter and thinking what am I doing this for?  I was passing out. I raise up and fall down and vomit. I call DH and he comes and then leaves and vomits. Our problem was we didn't eat enough with the meds.
  • Middle of the night my husband complains of back pains. I finally get to sleep at 4:30 AM.
  • Monday at 9 AM call State Farm Insurance and receive calls from them all day. Both of us are sore.
  • 4 PM husband has doctor's appointment, gets anti-inflammatory and muscle relaxant, shot, and prescription for x-rays for his back. My doctor will get back to me about an appointment on Wednesday.
  • 7 PM we have dinner with Sally and Jake at ABC Pizza and tell them all about it. We make tentative plans to spend New Year's Eve at their home.
We both thank God for our lives.

Friday, December 17, 2010

Economical Update for 2011

Two Alzheimer's medicines have almost bankrupted us. Not taking them is not an option. See Research.

"The combination of the current symptomatic treatments for Alzheimer's disease improved the patients' quality of life, since those who used concomitantly cholinesterase inhibitors -- donepezil, galantamine, or rivastigmine -- and memantine had a diminished risk of institutionalization compared to those who used no medication or used cholinesterase inhibitors alone." -- Dr. O. L. Lopez, University of Pittsburgh School of Medicine
I once e-mailed Dr. Newport (lady who introduced me to coconut oil) and she said to not discontinue either medicine as we continue with the coconut oil. I was not consistent on the Exelon Patch and that is when we went to Exelon pills. DH has to eat when he takes his twice-a-day Exelon pills or he will vomit.

Does Prescription Solutions from the AARP plan really help save in the new year? Absolutely not! For several years we have been going beyond the donut hole and into catastrophic coverage for my husband with them. One recent year when we maxed out our credit cards due to prescriptions from AARP, we used the line of credit on our house to pay off the credit cards. We are about to do that again and I do not want this. We have until December 31st to decide.

We went with WellCare at 1-888-888-9355. Gene was great in helping us. Got our new cards. They are excellent. However it meant a change in doctors, but much more savings.

Wait folks. News just in! In the dash for the best plan for 2011 by December 31st, an insurance representative Ned called. I research and listen to all possibilities and it is not yet December 31st. Possibly we could keep the same doctor. He took time to see us last Saturday. We didn't go with his plan that would keep my husband's current doctor, however, because Ned had a different idea--a plan with a higher amount until we would go into the donut hole ($3500  compared to $2840 with WellCare). Preferred Care Partners, Gold Plan, at 1-866-231-7201. They also offer dental coverage and eye coverage. I visited the local doctor's office and chose another doctor for us, unfortunately not keeping our same doctors, but bringing those other fabulous benefits.

All we save a month that we used to spend on the AARP plans (over $400) a month, we can use to pay down our credit cards and not go into our line of credit on the house. Thank you Lord, for answering prayers from the women at church who were praying about this and for the rest of you in blogland who pray for us.

Oh God, I beg two favors from you;
let me have them before I die.
First, help me never to tell a lie.
Second, give me neither poverty nor riches!
Give me just enough to satisfy my needs.
For if I grow rich, I may deny you and say,
"Who is the LORD?"
And if I am too poor, I may steal and thus
insult God's holy name.
Proverbs 30:7-9, TLT-- What I heard today on The Daily Audio Bible,
my third year going through the Bible with this podcast. 

Saturday, December 11, 2010

What It's Like for Carol's Husband

Bob on the Reading Room wrote a poem that says it all. See Bob's poem.

by Max Wallack

It gallops in silently on powerful hoofs
Snatching sweet, precious, forgotten memories
Turning true-blue loyal friends into treacherous strangers
Clogging synapses with emptiness
Crumbling trust into excruciating paranoia
With bleak darkness comes the anxious wakefulness of broad daylight
And bitter terror encompasses every living fiber
"If I sleep, where will I be when I wake up?"
The compulsion to run, the paralysis of fear
Mature, child-like dependence
Retracing youthful development, but in rapid reverse
Cureless medicines, meaningless conversations
Leading up to the inevitable

Increasingly DH is asking questions about what the schedule is.  I do not at all tease him when he asks repeat questions, despite the fact everything is on the large FlyLady calendar.

We enjoyed a dinner at Cracker Barrell last night with a couple my husband had known years ago. He was very comfortable. They noticed that he had lost weight since they had seen him. They are part of his long-term memory. I don't think that they really noticed his dementia last night.

On the way home from this dinner he asked about where he worked when he retired over a year ago--he didn't remember. I reminded him that we passed it on the way home.  I need to go there, he said. We have a Christmas party to go to tonight and we will go by that business and also where we lived when we were first married over ten years ago.

Somewhat in denial about memory, he enjoys his days and trusts me. Often he tells me he loves me. We do normal socializing at this stage. I am blessed each day.

Thursday, December 9, 2010

Husband Is Not the Person I Knew

My name is Dolores, my husband, David has Alzheimer's; he was diagnosed in 2005.   David retired from his job, as a C.P.A.  in 2003.... we were seeing slight signs of Alzheimer's in 2003.....

Most days I do really well as a care taker, but each day/hour  with Alzheimer's is a new experience, and some days are harder than others.  I'm in this for the long haul, so I try to stay as upbeat and positive as's not always easy or possible.

I read articles from the Reading Room each day, and this article hit home for me.  

Alzheimer's Disease, This is Not the Person I Knew

By Bob DeMarco
Alzheimer's Reading Room

Alzheimer's disease is difficult to comprehend.

Alzheimer's caregivers find it difficult to accept and understand that the new, different, and often bizarre behaviors they experience from a person suffering from Alzheimer's disease are a product of the disease.

The person suffering from Alzheimer's did not choose to go into this new and bizarre world. They are not acting irrational by design or with intent.The Alzheimer’s sufferer is not engaging in these behaviors intentionally. They are engaging in these behaviors because their brain is sick. The result of this sickness is an inability to cope effectively with the world around them.
Once you come to the understanding that these new, hard to accept and deal with behaviors are being caused by Alzheimer's disease you'll lower your own level of stress and anxiety.

This simple understanding leads to more effective Alzheimer's care giving.

Dolores and Carol Chat on Facebook

Notice that we have new contributing authors on Plant City Lady and Friends. Dolores is one.

Dolores: Good morning! You are doing great at Wordscratch [on Facebook]!
Carol: I just happen to be ahead this time. You usually win.
Dolores: I’m having a hard time playing with a bunch of vowels.
Carol: You can put some of your vowels on the board and swap letters.
Dolores: We had our Sunday school party last night.
Carol: Great! Did your husband attend?
Dolores: 72 people there. I had a terrible time getting DH dressed, but once we were there he was fine. I started not to go at the last minute because he was getting so obstinate about getting his clothes on, but I’m the leader of our class and felt I needed to be there for introductions, prayer requests, etc. It ended up being good.
Carol: My husband is getting stubborn also. They become self-centered as the disease progresses.
Dolores: He was in a very down mood yesterday. I put a turtle neck sweater on him and he threw a fit that he couldn’t stand the way it felt. I was bawling and he didn’t even notice. He seems fine now.
Carol: My husband didn’t like the chicken wings I served him. Then they don’t remember these incidents.
Dolores: It’s hard, isn’t it, because you never know what to expect.
Carol: I’m starting to just relax with it and realize this is how the Lord is completing His work in me. Yes it is hard.
Dolores: Some days I can do that but since he has totally stopped reading, he has too much time to do nothing.
Carol: I guess we will have to educate them into new activities as the disease progresses.
Dolores: We walk around the block a lot, drive around, he sweeps, but the reading was something he did almost half the day.
Carol: My husband watches DVDs, videos, movies on TV constantly. Sometimes I have to retrain him in how to use the remote controls.
Dolores: David is past educating him into doing anything. He can’t pick up the receiver of the phone.
Carol: I’ve read that they lose procedures.
Dolores: DH can’t learn and won’t even try anymore. My husband is further along in the disease than yours is.
Carol: Yes, and I want to hang in there with you and learn and keep praying for you two.
Dolores: Thank you and I pray for you two also. Prayer is what got me through last night. Once I was there, I was all smiles. LOL
Carol: I am going to put some of this conversation on Plant City Lady and Friends. OK?
Dolores: Sure . . . that’s fine. The only pressure I feel is saying anything that will make DH worry about himself since he has Alzheimer’s.
Carol: Being a helpmeet under these circumstances is hard. My hubby doesn’t want to be looked down on or made to appear inadequate in any way.
Dolores: One has to tread lightly to not let or make them feel like a child. Gonna fix DH’s oatmeal and toast. Hope you have a good day!
Carol: Ok! TTYL. You too!

Monday, December 6, 2010

Saga Six

So both "Jake" and DH have had birthdays recently. Both are 73! Both couples were going to go to Disneyland's Magic Kingdom in Orlando this week, but it is just too cold here in Florida. My wise husband suggested we postpone it. I love having the day off and so does "Sally". We enjoyed having a birthday breakfast with "Sally and Jake" two weeks ago to celebrate Jake's birthday. We celebrated DH's b.d. with a cake after church yesterday.

The Memory Walk I participated in last month has raised $61,000 plus.

The diabetic medicine Metformin can help prevent dementia according to Alzheimer's Weekly and more tests are being conducted to confirm this. My husband takes Metformin and we now get it free at Publix.

Geriatric Care Manager Carole Larkin of Dallas Texas writes on the Importance of Socialization in The Alzheimer's Reading Room. This has made such a difference for me when I realized this. Before that I had been withdrawing slowly from my husband. He is so much happier when we just act like a normal couple. Love him!

Socialization is easier to accomplish than exercise, however. Sally and I have a plan to go walking in January around a track and then DH and Jake can walk together also and stop when they want to. Hope January has mild days when our husbands will agree to walk.

Caregivers have 6 simple suggestions at Johns Hopkins Health Alerts. We have covered these tips in a different format on this blog, but the tip I have been neglecting is my health. I realize that when we are older we forget to get enough liquids--I haven't been getting enough water. Then I wake up in the middle of the night with leg cramps because I didn't get enough water, or the liquid I consumed was mainly coffee. So I got sick last week and am still taking antibiotics for the respiratory infection. Urgent Care gave me prescriptions for four medicines recently (antibiotics, strong pain, cough and alergies,) and two of them made me vomit. Never got the allergies meds as the helpful drugist at Walmart suggested I could get an over the counter med if I determined I needed it. In my 66 years I have never been diagnoised for allergies, however, but you never know! I am just taking the antibotics now.

Dr. Charles DeCarli, Neurologist/ Alzheimer's Director at the University of California at  Davis has an informative  Update on Vascular Dementia. Now this hour long video is informative if you are a doctor. :)  I tried to follow it, but had difficulty. As a layman I received two insights from it, however. 1) People start out with Vascular Dementia and end up with Alzheimer's. He pictures a landscape rectangle with a diagonal line to illustrate the concept with mainly V. Dem. on the left for an earlier age growing to mainly ALZ on the right for maybe ten years later. 2) V. Dem. patients have trouble with sequential directions, like how to use the remote control, etc. Yep, true of my husband, but he has been trained to use them, regresses, and then gets up to speed again. He loves using his GPS, but needs help inputting a new address. I say train and retrain them while they can learn.

Soy may not be as good for you as we thought. A report from Dr. Mercola:
Myth: Phytoestrogens in soy foods can enhance mental ability.
Truth: A recent study found that women with the highest levels of estrogen in their blood had the lowest levels of cognitive function; In Japanese Americans tofu consumption in mid-life is associated with the occurrence of Alzheimer's disease in later life.

Thursday, December 2, 2010

Sixth Book Report: Finding Your Way: A Spiritual GPS for Caregivers

Sally and I went to a book signing on October 23rd after our Altzheimer's Association workshop on "Spiritually and Memory Care".  Sandy Lovern is the author of the newly released Finding Your Way: A Spiritual GPS for Caregivers and here she is pictured with Evelyn. I met Sandy and Evelyn when I did a presentation on publishing my book at their writers' group.  I bought Sandy's GPS book and had her autograph it.  Sally bought Sandy's other book Engaged! A Devotional to help a Bride-to-Be Navigate Down the Aisle. Obviously Sandy is fresh on the "how to" book trail.

What does local author Sandy Lovern suggest for the caregiver?  First of all Sandy writes from experience, but generalizes "you" as a caregiver for "Mama" as the loved one being cared for. She does not explore the Alzheimer's patient, nor the Alzheimer's spouse as caregiver. What I received from her book is other insight and I know I will return to what I have underlined in the book.

Bitterness. She writes that "Bitterness will spoil every area of your life. Do what you can for your loved one and rest in that." The Lord has dealt with me on this topic before in other issues of my life.

Martyrdom. "Avoid the martyr syndome like the plague. . . . You can avoid the syndrome by remembering you are the one who has been entrusted by the Lord, to fulfill a promise He made to your loved one, or their partner." In my case, it is my wedding vows--for better, for worse, in sickness and in health.

The Past.  "As your life begins to unravel you will probably catch yourself constantly reaching back into our memories, trying to recapture what once was, and is no more. It's the 'what is no more' that can trip you up. If you don't learn to adapt and accept the new changes in your relationship with your loved one, you could find yourself constantly ensnared by feelings of anger and frustration."

Family. "Surround her with pictures of her loved ones, decorate the walls with drawings from her grandchildren and stimulate her with news of the family." Together we are putting photos on my husband's Facebook page so he can remember events. I noticed that his niece wished him a Happy Birthday on Facebook and wants to know when we will visit them again in Georgia. My husband wants a photo album made--one of my important items on my "to do" list.

Joy. "Do what you can to bring joy to their life, and then go on with yours." DH has a wonderful sense of humor and really he brings joy to my life. I can't close myself off from him. He would be lonely and so would I. Sandy writes, "Special moments are created, they don't just spontaneously occur." I guess that I am going on with my life by taking classes and working while I can. Joy comes when I improve parts of our home also.

Finances. "Your finances will recover over time, but your heart won't if you don't take some time to invest in what is really important." Finances are rough for us. I have been sick this week and have gone to substitute anyway. Whoops! Maybe I am acting like a martyr by working!

God's Word. Sandy writes, "Arm yourself with the Word of God, and wage war over the battlefield of your mind. . . . The Word of God is the only power you have that can override your negative thinking." At the end of her book are Bible verses for each of her chapters.

The Future. "You can sit on the sidelines and watch your loved one's passage into a new life, or you can walk side by side with them until they enter another dimension. The Lord will give you the strength you need to pass your loved one's life into His capable hands. "

This last quote reminds me of an old song, "Side by Side" written in 1925 by Harry Woods.  DH and I like to sing this together:

Oh, we ain't got a barrel of money,
Maybe we're ragged and funny
But we'll travel along
Singing a song
Side by side.

Don't know what's comin' tomorrow
Maybe it's trouble and sorrow
But we'll travel the road
Sharing our load
Side by side.

Through all kinds of weather
What if the sky should fall?
Just as long as we're together,
It doesn't matter at all.

When they've all had their quarrels and parted
We'll be the same as we started
Just a-traveling along
Singing a song
Side by side.

Friday, November 26, 2010

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.

Tuesday, November 23, 2010

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!!!!

Thursday, November 18, 2010

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! 

Monday, November 15, 2010

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.

Thursday, November 11, 2010

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.

Monday, November 8, 2010

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.

Wednesday, November 3, 2010

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.

Friday, October 29, 2010

Saga Two

This week James finished the recessed lighting in the family room where my husband watches so many old movies. That bright light is essential to help with Syndowner's. The picture at the left doesn't do justice to the real change in lighting in that room.

"This is the last time you take me to a doctor," proclaimed DH, as he drove us to an endocrinologist this week. Yes he can drive now. I was glad because while he drove I was writing down all his prescriptions, Centrum Silver, Flaxseed Oil, Vitamin B12 and the Ecotrin full strength aspirin he now takes instead of expensive Plavix. I didn't want to cart all those bottles in to the doctor.

We didn't know why he needed to see the endocrinologist, but found out why when we got to Watson Clinic in Lakeland. His calcium levels were elevated and that could mean surgery on a gland or kidney stones.  He collected urine for 24 hours and did a great job of remembering to do this even while I was gone. Shortly he will take a bone density test also to see if calcium is not getting to his bones and if he has thin bones.

A researcher interviewied me about coconut oil and the benefit to my husband. I pointed out DH's passing his driver's test at an ALZ clinic and also the fact that Byrd Institute said that they didn't think he should be dressing himself now based on his MRI. Yes, indeed, coconut oil is helping DH.

Sally, Jake, DH and I traveled to Disney's Epcot in Orlando this week. In celebration of passing of the driving test I actually enjoyed my husband driving the four of us to Orlando.  I wanted to drive his SUV, but he said it makes him feel like a man to be the driver. He really is a safe driver. On the return trip, however, DH was happy to have me drive. Again we got in free due to the generosity of some friends. Jake and DH got better acquainted during the day as did Sally and I.

How wonderful it is for me to have Sally to share the journey of husbands having Alzheimer's. We commented that the men may be about the same stage of Alzheimer's, although we do know that this disease takes different forms with different men. We also noted that they both husband's need organizational skills of their wives to complete projects--my husband to weed and Jake to paint a fence. During the day at Epcot we had plenty of opportunity to observe the interaction of our husbands who are enjoying forming a friendship as are Sally and I. Sally had read my book and so knows all about me and I was able to ask her getting-acquainted questions also. What a gift from the LORD this couple relationship is turning out to be!

Sunday, October 24, 2010

Saga One

"Sally" and I went to a Spirituality and Memory Care workshop Saturday morning at St. Paul's Lutheran in Lakeland; the event was sponsored by the FL Gulf Coast Chapter of the Alzheimer's Association and that church. We let the two ALZ husbands hang out and perhaps these two 72 year olds are starting to form a friendship. We suggested they go to Denny's for breakfast while we took off for Lakeland. We checked on them--had they arrived at Denny's? No! We got on I-4 and just trusted our husbands to the Lord. When we got to St. Paul's, I called DH's cell. They had gone to Buddy Freddy's for breakfast instead. During the workshop break I called and "Jake" and DH were both at our home. DH said they were just joking and chatting.

Here are some highlights of the workshop:
  • A film to show congregations wanting to minister to persons with dementia began the workshop; it was old, but effective.
  • The  ALZ patient is a person inside who needs to be mentally stimulated and active, emotionally loved and spiritually fed. He is a whole person. Ask him questions and listen. Be present.
  • If you are visiting an ALZ patient and their caregiver, go in twos so both can receive a visit.
  • Routine is so important.
  • ALZ patients can obsess about things and the workshop gave examples of how to deal with this behavior.
  • When an ALZ person has an outburst, think about what happened before that outburst. I thought about this after I was home and hubby was irritated. His routine had been different and I was springing going out that night on him, despite the fact all events were on the calendar.
  • When an ALZ patient is stubborn about getting something done, it is because the organization cells of his brain are missing and he can't carry through, despite his good intentions.
  • The caregiver can call 1-800-272-3900 in the middle of the night for help.
  • is a good resource.
  • Also no charge to call Shine at 1800-96-ELDER.
  • HONOR at 863-816-2779 will come to the house to fix something. Our lights? Still waiting on James.
Speaking of research, I just put the Alzheimer's Weekly link above. You join to get question answered and I have already done that. I also wrote on our success with coconut oil there.

Were there any Christian books on dementia at the workshop? No. I told several of the presenters about the two I had found and reviewed on this blog--No Act of Love Is Ever Wasted and Could It Be Dementia?

After the workshop, Sally and I took a copy of my book to a radio station which might interview me on that book and then we headed out for lunch at Black and Brew in downtown Lakeland. We choose Black and Brew in Lakeland because there was to be a significant book signing there at 2 pm. Sandy Lovern has written Finding Your Way: A Spiritual GPS for Caregivers. I got my autographed copy and of course will review it on this blog. So this is a third Christian book available. In talking with author Sandy Lovern she said she couldn't find any book and so that is why she had written her newly released book.

When we got to the house about 2:50 (I had told DH 3 pm), Jake and DH could not remember if they had eaten lunch, but I found evidence that they had indeed eaten in the sink. The guys had been watching DVDs and socializing. Our husbands still haven't figured out that each other has Alzheimer's, but I think they are finally getting the idea that we all are new friends now.

Despite the huge calendar where I write down everything now, DH was surprised that we had an event Saturday night. We left early from it. Big day for him.

I will be in a Memory Walk in November. I need sponsors and am raising $100 at least for my T-shirt. The walk is 1.5 miles and I am used to three miles now (more in earlier days).

More on our saga with posts to come.

Thursday, October 21, 2010

Our Normal Life So Far

DH passed the DriveABLE test as we learned last week. The written report which came yesterday said he
appeared cooperative and effortful during testing. . . . .The driving performance is compared against normal, healthy drivers who also drove a dual-brake car. . . . [Husband's] driving performance revealed no evidence that driving competence is outside the range of healthy, normal drivers. Driving cessation is NOT indicated. Reassessment is recommended if there are significant changes in medical status or function. The recommendation is based on criteria developed through the scientific comparison of medically impaired and normal, healthy drivers across a broad age range. Those criteria enable normal, healthy drivers of [my husband's] age to receive a passing score. The DriveABLE Road Evaluation has been demonstrated through research to be sensitive and fair for both urban and rural drivers.
Wednesday he had an appointment with his primary care physician and I also went to that appointment, booking myself unavailable to substitute that day. I gave her a copy of the report on DH's Mixed Dementia evaluation from the Byrd Institute. She was pleased with his Hematology and Chemistry report that she orders every three months. The doctor agreed to let him stop the Plavix, which we are out of after 90 days, in favor of regular aspirin as suggested by a helpful comment from an earlier post on July 14 of this year. (By the way a lot of people have visited that 7/14/10 post according to the site meter.)  I have him taking ECOTRIN 325 mg Safety Coated Enteric Aspirin now. This saves us a lot of money. She was also glad that we use bright lights now in the family room where DH is always watching a movie.

Wednesday we also ran into a couple and had lunch with them at Plant City's Fred's Market. This was delightful and really my husband was great at maintaining conversation. I gave them a copy of my book. We were so full from lunch that we skipped dinner and went to my Toastmasters meeting. After the meeting we went to a McDonalds for dinner to see if I could get closer to winning in their Monopoly game. No luck and DH doesn't really like McDonalds he said. I am over eating there also.

This morning my husband was interested in the calendar for his chores. Change air filter. Wash the car. Love that huge FlyLady calendar and he had me write those chores on them. He also took note that the lawn needs mowing with his riding lawn mower. He has been puttering away at weeding the past couple of weeks for which I am grateful. We have a lot of yard to maintain. Carpenter James built this pergola structure between the two back yards several years ago and we enjoy the climbing roses on it.

I need to learn the procedures to the lawn mower because one day I will be the one mowing it; hope to make a sheet in my FlyLady Control Journal for how to use that mower.

Wednesday, October 20, 2010

Celebrity Power Two

It sure doesn’t hurt to have a celebrity, journalist and California first lady, Maria Shriver, help the Alzheimer’s cause.

"We're trying to take it out of the closet and put it into the living room." Maria Shriver said in this week’s ABC special. ABC News Video Video is so moving.

 Shriver’s report according to Time (see Time article) says that we still do not know a lot and more needs to be done. We do know that there are risk factors for dementia and preventative behaviors as reported by Duke University:
"When we applied rigorous but consistent standards to review all the studies, we found that there was not sufficient evidence to recommend any single activity or factor that was protective of cognitive decline later in life," says Plassman. [Brenda Plassman is the leader of the study.] However weakly, though, the review did support what doctors know about risk factors for cognitive decline: smoking, diabetes, depression, metabolic syndrome (the constellation of conditions including high blood pressure, obesity and high cholesterol that are associated with heart disease and diabetes) and specific gene variants were all linked with increased risk of developing Alzheimer's disease. In addition, preventive behaviors such as eating a Mediterranean diet (high in fruits and vegetables, omega-3 fatty acids and unsaturated fats), exercising, maintaining cognitive engagement (doing puzzles, learning new things) and fostering extensive social relationships were linked to a lower risk. The problem is that none of these relationships were particularly robust, the authors say. And none were strong enough to justify recommending the behaviors to people who want to prevent or slow down the onset of dementia.
Next year we have the “Community Living Assistance Services” a voluntary long-term care provided by the government. I do not know the specifics. Shriver says more needs to be done for the enormous financial costs involved. Long-term care insurance is costly, and Medicare does not pay for nursing home care. The Community Living Assistance Services and Supports Act became law as part of President Obama's health care reform, and it will provide voluntary long-term care insurance provided by the federal government starting in 2011. Despite this new law, the Shriver Report says it's not nearly enough to offset much of the financial burden of long-term care, and urges the government to make more financial assistance available. The costs will only rise with the baby boomers coming into retirement. I did buy $58.20 a month coverage for myself which I could get because I am healthy, but can’t get for my husband because of his heart history, diabetes and Mixed Dementia diagnosis. I may need that coverage myself because of the stress that I have as a caregiver and I am definitely looking into the voluntary government coverage for my husband.

For more see these links:
Meanwhile I am going to enjoy the abilities of my husband that he currently has and daily put our future in the Lord's hands.
Thank you, thank you, thank you, Maria.
Yes to more research,
yes to more help for us caregivers,
yes to more public awareness.

Tuesday, October 19, 2010

Celebrity Power One

I am so drawn to the cover of a magazine and magazines know this. At the check out stand they demand that I purchase them. Now I do not need another magazine because I only have 2/3 of my magazine pile sorted through. But  I bought one--the October issue of Good Housekeeping.

I have often thought about the rich and the famous and how they might manage their homes. I think that undoubtedly they hired housekeepers and organizers to put it all together. Not so with Jamie Lee Curtis. I didn't find out if Jamie actually does her own cleaning like this cover implies, but she does her own organizing. And I am more into organizing than cleaning at this point in any case.

Jamie wears black, white, navy--boring colors IMHO, but her closet at the left is to die for. She regularly gives excess away and simplifies. She wears what is simple and makes sense to her.

Now I am not about to buy new containers for all my cosmetics and pantry items like Jamie does, although I do think her point about cracker and cereal boxes is good. I like to put cereal in other containers. 

Jamie makes a very liveable home. I am getting there, Jamie. I am getting there, FlyLady.

“One person’s mess is merely another person’s filing system.”~~ Margo Kaurman

Saturday, October 16, 2010

Sundowner's Syndrome

I am working on the Alzheimer’s environment that will work for both of us. I have been blogging about simplifying our home—de-cluttering and making order—a place for everything and everything in its place—and less junk, junk-bunkers and stuff. Things need to be where my husband expects them to be. The garage sale is coming.

There is more to this needed environment than just order, however. Light is needed. I read that light is also important for the Alzheimer’s home.  According to Paul Raia, vice president for clinical services for the Alzheimer's Association of Massachusetts and New Hampshire,
“Alzheimer's patients at mid-stage of the disease need 50 percent more light to see at the same level .of acuity because their retinal function goes awry.”
See Link for above quote. Also Bob in the ALZ Reading room wrote Link .

Yesterday going into the late afternoon DH was a little agitated about a phone call. We went to the Hillsborough County Fair and he calmed down. We were outside and he had plenty of light.

One day last week at sundown time I called my husband to say I would be home late. When I got home, hubby was furious with me. He said he didn’t trust me and if I ever did this again (come later than expected), he would divorce me! I soon suspected my loving husband was having a sundown meltdown in a dimly lit room. “How would you do without me?” I asked sticking to my guns that I had indeed called him to tell him I would be late. Alzheimer’s caregiver training has made me almost innocuous to such charges.

The next day I asked him if he would ever divorce me and the answer was “No, of course not.” He had no recollection of the previous night. This Saturday morning my sweet husband is again watching "Fireproof", the DVD about saving a marriage. We both have been known to cry near the end of it.

Since DH is very conscious of having too many lights on in the home to save our electrical bill, I was not sure how to approach him about needing more light in the family room where he watches TV much of the day. However several years ago we had an electrician install three ceiling lights over the family room couch so we would not need lamps to supplement the ceiling light/fan which is usually not on. Now DH was using only one dim middle light while watching movies because two of those lights were burnt out and they hadn’t been replaced—a difficult job to replace because of the covering. (My sister-in-law says that she puts smaller bulbs in her ceiling lights so she doesn’t have to put that problematic covering back.) Too little light is what DH had—ready for sundowner’s effect.

So this week I purchased three new 5-year ENERGY SMART GE lights for track and recessed lighting to put up. I am keeping the receipt for five years. Packaging says it will save us $120.  Ironically it was near the end of the day (sundowner’s time) and my husband got the ladder out of the garage to install two lights which he did—and I wanted three all three lights installed. The light bulb cover was difficult to install after two new lights were put in. The middle light which still worked was not as bright and I told him we needed to replace that middle light also. (You don't see that light on now in the above picture.) DH got angry with me. I kept repeating my reasoning to him:
  1. The lights would match in brightness;
  2. They would all have the same five year warranty.
  3. I did not tell him the third reason.When he turns on this unit, it would help with his suspected Sundowner’s Syndrome. There would be three bright lights.
We started to argue about replacing the middle light—“Please do it for me” I begged. Reluctantly he unscrewed the light in the middle, but gave up totally frustrated as part of the bulb got stuck in the socket. I said we would finish this another day, seeing we would get nowhere and that the chivalrous man he is, he would not accept my trying to get on the ladder to do this. Later while he was sleeping I tried but couldn’t complete the task. I will get our carpenter James to put in the center light and fix those coverings. I already called James to tell him about Sundowner's, etc. Since hubby spends a lot of his day listening to movies in this location, his phone is nearby, a bright room might means less sundowner’s meltdowns.

So what is Sundowner’s Syndrome? This definition link provides a definition:

Sundowner’s Syndrome is the name given to an ailment that causes symptoms of confusion after “sundown.” These symptoms appear in people who suffer from Alzheimer’s Disease or other forms of dementia. Not all patients who suffer from dementia or Alzheimer’s exhibit Sundowner’s symptoms, however. Conversely, some people exhibit symptoms of dementia all day which grow worse in the late afternoon and evening, while others may exhibit no symptoms at all until the sun goes down. Sundowner’s Syndrome largely remains a mystery to medical science, although there are several theories about why these symptoms begin at night. More and more studies are being conducted to try to determine the exact cause. In the meantime, some doctors believe it’s an accumulation of all of the sensory stimulation from the day which begins to overwhelm and cause stress. Some speculate that Sundowner’s Syndrome is caused by hormonal imbalances that occur at night. Still others believe that the onset of symptoms at night is due to simple fatigue, while some believe it has to do with the anxiety caused by the inability to see as well in the dark.
How can Sundowner’s Syndrome be treated? With good light and the training of me, the caregiver. Linda from the blog Early Onset (links at the right) wrote me about Sundowner's and my dealing with it:

I hope you find the following information helpful. It is "how to respond to behavior" from my Alzheimer's In Service program for health care workers:
• Remain flexible, patient, and calm.
• Respond to the emotion, not the behavior.
• Don’t argue or try to convince.
• Don’t take the behavior personally.
Last night I heeded her advice. Linda also said to consult the doctor about medicine.

When this third middle ceiling light is installed I will report back here. To be continued . . .

Thursday, October 14, 2010


We went to the MaDonna Ptak Center for Alzheimer's and Memory Loss/Memory Disorders Clinic at the Morton Plant Neuroscience Clinic in Clearwater yesterday. In the morning DH took the DriveABLE Road Evaluation test which was
not sufficient to resolve driver competency. The DriveABLE Road Evaluation is needed to determine driver competence.
We went to lunch at McDonald's so I could play their Monopoly Oct. 5--Nov. 1 game. Haven't won anything yet. Am I gambling? I don't like to gamble because the LORD has promised to supply our needs. We bought food that had those Monopoly properties attached to the packaging. I still need more properties to win. Anyone have Boardwalk, Pennyslvania Ave., Ventor, Vermont, Reading Railroad, or Mediterranean? I will trade you. Hard to watch nutrition by buying there, however--gambling with nutrition.

In the afternoon DH took his road test at the Suncoast Safety Council also in Clearwater. I believe he passed it, but you never know what the neurologist, Dr. Raj, will say. We have yet to meet him, but he is the professional who gave us the Mixed Dementia diagnosis (two kinds of dementia) at the USF Byrd Alzheimer's Research Institute. Don't you just love those names for hospitals and research centers!

Added October 18. DH got the word by phone at home and I got the word on my cell. Officially he passed and can drive! 

Thank you, Lord, and please protect him!

Tuesday, October 12, 2010

Feeling Normal

 “You can only perceive real beauty in a person
as they get older.” ~~ Anouk Aimee

I asked my husband if he enjoys retirement. He said yes. I love him so much. He has great integrity and character. He doesn't let things bother him that might bother me.  Thank you, Lord, for this wonderful husband.

I asked him if he knew he had dementia or Alzheimer's. He said he feels functionally normal. Are you in a fog? No. My husband is in denial. Early on when I started this blog I was in denial. I had blind faith that coconut oil would help. Yes it has helped as has his Alzheimer's medicine. He would be so much worse off it he had not had that medicine and oil according to the USF Byrd Alzheimer's Institute.

Every once in a while he asks me a question such as is he is 72. I say yes. See, I am not losing my memory, he retorts. I think this depends on the time of the day, and he possibly has Sundowner's Syndrome--but more on that later. He does not remember all the things I tell him verbally. If I write it down, he might not remember to read that note. Everyone forgets as he gets older--this is normal, he says.  

He wears that medical alert bracelet that has "memory" stamped on the other side of it--keeps it on in the shower, but remembers to take off his watch before his shower. His watch tells him the date--October 12 and the day of the week, Tuesday. The calendar tells him where I am and he crosses off the date when I come home. He takes his blood pressure regularly and keeps asking me what is normal. He records his blood pressure. He often makes the bed--his side and even mine.

We talk about his driving test tomorrow. I will sue if they don't let me drive, he says. I let him drive last night when we went to Lakeland to my publishers to pick up more books for the book signing in November. I had him drive this morning also--both times with me in the car. Like a great husband and companion he wants to be with me--doing anything.
DH  vacuums, cleans the carpet and mows the grass--all things he has done the ten years we have been married. He has his same humor. He blows the paper cover off the straw at me as he prepares to drink his ice tea. A year ago he made valuable suggestion on my book before it was published. He loves to watch old movies. He only reads to read a hymn and the last several months we sit down in church usually rather than stand when we sing the hymn. We hear Scripture read at home or in the car. He prays beautiful prayers, or the simple table grace prayer that I can recite from memory. Of course he feels normal. He has a loving wife and an affectionate dog and a roof over his head.

Rebellion. He apparently went down to Block Buster Video recently and bought some 99 cent movies that I added to his list of movies--not good choices, but he felt free to buy them with the little cash he carries in his wallet. Wasn't supposed to drive until we know the results of that test tomorrow and the note in his car says that. I feel for him. I let him drive last night and this morning with me in the car. I want him to feel normal--that he is OK. Don't we all want our loved ones to feel OK?!

I am so glad he is happy.

To be continued. . .

About five hours later. How I had looked forward to this afternoon!  Jake and DH were to play pool and chat while Sally and I went to the Alzheimer's support group and I was going to report on that here. However when Jake and Sally came over, suddenly I had been in our master bedroom barfing.  My blouse was wet, I was hot, and I continued to vomit. I had no presence of mind to call and cancel. They chatted for a while in the family room and took a rain check on our date.

About an hour later DH was instructed to bring my purse with my cell phone. I used my cell phone to get the number to the pet groomers so DH could call to see if  our dog was ready at the groomers. The front door closed as I heard DH say he was taking his car to get our dog. Soon he was back in the house looking for the global navigational device plugged into his computer. He found the address on the Garmin GNP, punched it in and went to rescue our dog. When they returned I found hubby trying to put his cell phone into the GNP chord by his computer. I reminded him that his cell phone recharger was in our bedroom and that "Miss Garmin" needed to be plugged in at his computer.

I am starting to feel normal.

Saturday, October 9, 2010

Two Couples Go to Dinner

By chance, or maybe just a wonderful serendipitous blessing, I meet Sally whose husband Jake also has Alzheimer's. This couple live in our neighborhood and Sally and Jake are not their real names. Sally and I decide that our husbands should meet over dinner at Denny's. Huge success! New couple friends! Husbands both 72. Both men ironically don't know that the other has Alzheimer's, but both find a lot to "shoot the breeze" or talk about.

Now usually I am anxious about conversations with my husband, DH, because they seem to go nowhere and it is SOOO embarrassing when he repeats. Not so with DH and Jake. Both gentlemen tell stories from the past again and again--each doesn't recall but thoroughly enjoys the art of conversation at his own level of cognitive ability--spinning tales as old men can spin tales and somehow not bore each other. Somehow this relishing of old tales delights both gentlemen who engage in vibrant conversation as if they have known each other forever. Both agree that is has been a relief to turn over finances to Sally and me, as if Alzheimer's has nothing to do with their executive decision to turn funds over to their wives.

Both men order pecan pie ala mode for dessert. We stop off at our home and chat on our back deck, Sally and I thoroughly happy for the new friendship. She says she will contribute and help with our garage sale. So welcome! They are coming by Tuesday where Jake will shoot the breeze with DH and maybe shoot pool also, and Sally and I will go off to the Alzheimer's monthly caregiver meeting together. Hope DH and Jake remember each other Tuesday!

Thank you Lord!

To be continued . . . .

I wrote the above copy in the early dawn hours of Saturday about Friday night's dinner. I slept in this Saturday morning. DH was finishing watching "Fifty First Dates" about a couple where she didn't remember whom she was married to. Together we had breakfast and then we folded laundry on the covered pool table. I mentioned the good time we had with Jake and Sally last night and DH did not remember. Jake and DH will need maybe fifty times to be together to remember each other and they may rehash the same stories and not get bored. This is why my husband watches his favorite movies over and over again.

Tuesday, October 5, 2010

My Husband's Driving

Yesterday on the Alzheimer's Reading Room Bob DeMarco posted "Driving with Alzheimer's Can Mean Death":
A new study conducted by Linda Hunt at the School of Occupational Therapy at Pacific University, Oregon indicates that driving when suffering from Alzheimer's can be dangerous. Of 207 drivers with Alzheimer's who went missing while driving, 32 died and 35 were found injured. Another 70 were not found at the time the data was analyzed. Pretty scarey stuff. . . . Drivers with dementia are estimated to be 2-8 times more likely to be involved in an automobile crash as unimpaired peers.
See the Alzheimer's Reading Room link under "Favorite Links" at the right. When DH has his test on October 13th, they will deal with this issue and I won't have to, thank God. Once I took DH's keys away from him and he rebelled. There is a sign on his steering wheel that he is not supposed to drive. He talks a lot about this issue now. He is reading a manual on driving in FL to try to ace the test.

The last two Sundays he has taken his car to our circular driveway ready for me to drive us to church in it--our tradition--his comfortable car on Sundays so it gets a spin. I hope that the neurologist at the Byrd Alzheimer's Institute lets my husband drive if I am in the car with him. Both of us will grieve if his license is taken away. I love his driving me. He even schools me when I am driving and distracted by my iPod.

Thursday, September 30, 2010

FlyLady's System for No More Spring Cleaning

You will always be ready for someone to drop by!
(Valkommen in the picture at the left is the Swedish for welcome.) I have set up my Control Journal using the ideas from Flylady. My goal is to have a home ready for company by Thanksgiving. Things could change by Thanksgiving, but this is the plan. Author Marla Cilley, the FlyLady and author of Sink Reflections, says that once you de-clutter you work on one zone of the house per week. I am de-cluttering still for the Garage Sale, but am using much
of the five zone theory already, the "home blessing" and the 15 minute timer.

Flylady is delightful. I feel that I am part of a group. Success isn't defined by perfection, but baby steps are okay. "You are not behind," Marla says constantly on her radio program or in e-mails. She tells you to "stop whining" cold turkey! My stress and grief at having more responsibility for things my husband used to do is just irresponsble. Have the systems in that Control Journal--how to turn off the water and the electricity at the house, how to mow the lawn, how to use the carpet cleaner. DH doesn't have the energy now and it is my responsibility. Yes it is a lot and at times situations such as weeding in the yard do get me down. But no whining! As caregivers need to do, I will ask for help.

Here is news in our continuing story.

  1. My pastor has already helped so much with financial strategies and emotional support. I can call him.

  2. We went to a Disney Theme park yesterday--a gift from friends. DH had wanted to do this. We choose Hollywood Studios. Together we will put pictures of this on my husband's Facebook photo section. We did have to take it slowly, but we were able to do much of that theme park. So enjoyable. We ended the day with American Idol, seeing the seven winners from earlier in the day compete.

  3. It's just  under two weeks until DH is tested for driving. He took off the sign I put on his steering wheel (to not drive until tested). He doesn't accept that he may not be able to drive at some point. I am hoping they say that he can drive when I am in the car, but he proudly tells me he has taken a few trips when I am not home.

  4. My husband is wearing a medical bracelet from now. It says on the back his name, diabetes and memory. A card in his wallet tells my cell phone number, our home number, some of his medicine, and his doctor. Should he slip out and drive and have a problem, his cell phone and that bracelet will help.

  5. We are not parking my car in the garage now, as it is the staging area for the Garage Sale. That sale will happen when I am ready--why stress about it!

  6. As caregiver Dolores e-mailed me this week, it is one day at a time. She also quoted her favorite verse from PhilippiansI can do all things through Christ who strenghthens me.