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!

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.
• http://www.agingflorida.com/ 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.
• www.alz.org/research

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.

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.

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:

Videos   

Lindsey Jordan, Teen Caregiver

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.

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

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 . . .

DriveABLE

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!

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.

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.

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.