Going Downhill: What Husband's Dementia Now Means

I wrote on June 5, 2013 HERE.  Before that, July 3, 2012 I reflected HERE. These posts and recent observations show clearly that hubby is going downhill.

Bird house was last project. 

The last thing I recall my husband building, was a bird feeding station that he carefully fixed on a pole that used to house a DirectWay TV dish that pointed south. We changed to cable and we did not need that stand cemented into the ground. Hubby came up with the birdhouse solution. This project was in the earlier stages of dementia and I did note how he seemed confused figuring out some of it. Somehow he has wanted to maintain his equipment in the workshop, and carpenters since then have remarked at how organized this workshop is. I laugh, because I have cluttered up that workshop with items we used to take camping and other junk to go in a yard sale. I long to make this workshop an exercise room and use it for my storage and even Pharis has offered to transform that room.  It's as if I do not want to let my husband's workshop go.  I want that workshop to continue as a carpenter's workshop even as I want my husband to continue to be the same.

But now hubby is going downhill.

How does this make me feel? It is very hard. Thursday night I reclined on our long couch in the den by my husband who was sitting in his spot watching TV. I was occupied by depressing thoughts and trying to pray.

Lord, I do not want things to change. I want arthritis to be the only thing wrong with hubby now. I want that new pill to fix the arthritis and I want him to walk even if it is with the walker. I want my mellow husband back. I feel guilty now going to the store without hubby who has wanted to accompany me everywhere.  The whole dynamics of our marriage is changing in that I have had "the better" and now have "the worse" of those marriage vows.  But, LORD, it is not all about me. I accept that you are using this situation for my sanctification and thank you for so many who have come along side of us. 

I wondered reclining on the couch if I needed an anti-depressant. Then Kenny and his brother-in-law came over. I got up from the couch to greet them. They were over borrowing tools from hubby's workshop. They needed tools to fix a car, but unfortunately hubby didn't have those tools as my husband's hobby had been carpentry, not auto-mechanics.

"What's wrong?" Kenny asked. "I usually see you upbeat."

"He's not getting up to walk and I am afraid of all that is coming." Kenny and Kevin promised to pray.

What do do about dinner Thursday night.  I started it, but hubby wanted to go out, forgetting his limitations. He hobbles to the bedroom to change from his jeans shorts and T-shirt into slacks and a nice shirt. This outing however would not be easy. I packed the 8 PM pain pill in my purse.

Usually hubby would interact with the waitress, but not Thursday night. The walker we took to the restaurant was stored elsewhere and I went to get it when we went to leave. "I don't need that!" But yes he did and does. He has memory of walking, but is in denial about his current limitations.

"Use it or lose it," you hear about walking and artritis. I took the urinal away from him on Friday thinking that going to the bathroom would encourage walking. However, Friday night he wanted that urinal rather than walk to the bathroom and I came to observe that he had peed in his jeans during the day. Slowly he changed out of them as he got ready for bed. I have been helping him and notice all I have to do now that he did over a month ago.

1. I retire his false teeth to be soaked over night. In the morning I get his full uppers and partial lower false teeth for him along with new Seabond that keeps the uppers in place. 
2. Taking meds is a battle of the will. Kenny said that Friday morning after I had left the house to substitute teach, it was an effort to get hubby to take pills. He was stubborn for me last night as well. 
3. Shaving and showering is done with Kenny's help.
4. Dog Ziggy "needs" a ride in the wheel chair--translation hubby doesn't want to use the walker. 
5. He has a worried look on his face, reminiscent of my father and uncle as they aged.  These two relatives did not have dementia, but did have that worried look.  Kenny thinks that my husband's eyes look different.
6. Hubby doesn't answer phones now in the last several days. Friday morning when I got to school and called, Kenny answered the phone and gave the receiver to my husband. 

Yes coconut oil, and Alzheimer's meds have delayed the inevitable. Yes I have been a Pollyanna. It is here, folks, what I interviewed Dolores, LaTane and Laurie about. What I have read in Linda 

Born's book and Linda Fisher's book and other books. What I have heard in the Alzheimer's Association Support Meetings.  Ready or not, here IT comes--the very difficult days of being an Alzheimer's caregiver. 

Friday I finished reading a novel, Crazy Lady by Jane Leslie Conly, to the special education students I have been substituting for this past month. In that novel middle school student character Vernon has to let go to a special needs young neighbor, Ronald, whom he had been mentoring. Vernon experienced anger at Maxine, Ronald's alcoholic mother, and grief when Ronald was carted off to live with relatives in another state. Vernon had done so much for Ronald--sponsored him in The Special Olympics and told others about Ronald saying his first word. Vernon ran alongside the car that carted Ronald off with Ronald looking back in the window. Finally the car sped off and Vernon falls, rolls and hits concrete:

I tried to speak, but nothing came out. I hurt all over. A hand moved up my legs and back, feeling for broken bones. It moved around my neck and rested on my face. It smelled familiar. "Vernon," Daddy said. "I'm here." (p. 180)

My students and I had quite a discussion on all the emotions of Vernon went through in the book. I know that my Father in heaven is there for me now, but I hurt all over emotionally. I must blog whether anyone reads this or not.

This Saturday morning hubby asks me what street we live on. Every time I cough he asks me if I am okay. He is sad he says today. He says he misses Jake and Sally who have been out of town. I miss them also. His son calls from Virginia and I talk with him about the deterioration which is evident to the son after he talks with his dad. Hubby takes forever to do anything. I edit his pills--no vitamins and fish oil--but other essentials have not been taken. He waits in his wheel chair watching TV for over an hour, not sure when he will sit in his padded spot. After some time the spot calls to him and he makes it there when I am in the den blogging.

As I am writing this post Kenny comes over for the ritual shaving and shower. Hubby is resistant to the shower, but we manage. Thank you LORD, for Kenny and the prayers of you all who read this.

Added Sunday, Sept. 29: It's official. I am only allowed one day at the PITY PARTY according to Jean Milsap, 20 year caregiver whom I interviewed in July here. So be it! The lady has spoken! 

The Aided Visit to the Doctor

It is officially fall now and I am taking a day off of work (my long-term substitute job with Educable Mentally Handicapped students) so that we can go to my husband's doctor. His poor walking recently has been probably due to arthritis.  So far Extra Strength Tylenol every six hours has worked fairly well until the rains came in the last several days. Kenny has arthritis and confirmed that his arthritis all over his body got worse with the rains.

Yesterday hubby only used the wheel chair to get around. We tried to use the walker to go to dinner last night, but he said that his knee was too painful.

This morning as usual I was asked many questions and as if hubby didn't comprehend/remember, the questions were repeated. I am used to this, but it seems to be increasing.

"Why are I going to the doctor?"

"So we can see about medicine for the pain in your leg."

"Pain in my leg?" hubby asks as he sits at the side of our bed getting ready. It's as if he doesn't comprehend the handicap he has had recently. I let him finish getting ready and leave the bedroom. Dog Ziggy greets Kenny who is here for the guys' morning routine.

Cheerfully hubby walks out to the den with his walker to assume his spot and greets Kenny for his usual weekday morning pill routine with Kenny. He jokes with Kenny, but respects and admires him as I do. Kenny is such a gift to me so I do not have to nag hubby to take pills, shave and shower. So I can still work, Kenny is there for us.

"I have more pills than you do," pronounces Kenny and successfully Kenny gets my husband to take his medicine.

An over-the-counter change in medicine in addition to Extra Strength Tylenol was recommended by a CVS pharmacist: Whole Body Joint Support by Finest Nutrition. The joint support tablets contain Rosemary, Turmeric (already taking that), Ginger, Holy Basil, Green Tea (gets that with Lipton), Hu Zhang, Chinese Goldthread, Barberry, Oregano, Chinese skullcap, Pine Bark Extract and Boswellia Serrata. It is the biggest pill my husband takes twice a day and a subject on conversation for the men.

Kenny gave hubby his biweekly shave before the three of us went off to the doctor this morning. Kenny physically lifted the wheel chair into our SUV in case we would need it. It turned out we only needed the walker.

I had put an Exelon Patch on my husband before he got dressed. One of the questions for the doctor is can we up UP the dosage of Exelon from 4.6 MG to 9.5 MG.  I have been trying that higher dosage, a gift from someone in the Alzheimer's Association Support Group because his wife no longer benefits from 9.5 MG Exelon. Today the doctor agreed to the higher dosage and said the joint support might not hurt. He asked about the coconut oil.

"Yes," I said. "He has taken that coconut oil for four years."

I have been reading up on arthritis and used to pride myself that my husband and I did not have this horrible condition--but now ARTHRITIS is here; it came in as innocently as my cold or allergies have come today.

At the doctor's office the pain meds are changed. Hubby will get 9.5 MG as an official prescription and the pain medicine is being changed to Tramadol HCL 50 MG three times a day which he will take at 4 AM, noon and 8 PM. He also got his flu shot and the doctor signed for a handicapped permit for our car.

The three of us then went to lunch at Olde Towne Pizzeria and Pasta Co. We each had a small salad and an individual pizza. The men both ordered a Caesar salad and a BBQ chicken pizza. I had a strawberry salad and a spinach pizza.  Then the three of us headed off for errands in Lakeland, but not before getting gas at Shells under $3.00 with my Winn Dixie card.

In the car while I drive the two men are so funny together. I am often in my own world, worried about the next stage of Alzheimer's, the next lesson plans, and what I have to do at home, but this was a very pleasant  day and I let myself enjoy their humor.

Questions remain on how mobile my husband will be with this new Tramadol medicine. If it helps him walk more, that will help his arthritis be not so painful and exercise walking will help the dementia. Stay tuned.

Back to lesson plans for tomorrow so I can go to bed early. Giving hubby that Tramadol now also.

Handicapped Husband Adjustments

Hubby and Walker

Saturday afternoon I had a date with my handicapped husband. Alzheimer's is not new to us, but physical handicaps are. It is hard for him to walk even though Extra Strength Tylenol helps the arthritis. I let hubby off at the movie theater with the walker and then I went to park the car.

When I got to the theater, he was inside sitting down waiting for me to buy the tickets to "The Butler". We both enjoyed that movie, but hubby insisted that he had seen it before--strange to me, but I didn't comment. Memory and dementia are strange bedfellows and produce different realities.

At the end of the movie he needed to use the theater bathroom--to pee. I panicked. I could not go in the men's restroom with him. At home he was using the urinal container we took home from the hospital.  I remember hearing a waitress say how a husband was allowed to go to the lady's room with his care receiver wife when the staff blocked off that ladies room at that restaurant. I didn't want to cause a scene. Our issue was not remembering what to do at this stage of the disease, but physically being able to use the facility with an arthritic knee. Somehow it worked out and hubby came out with his walker as if nothing was the matter. Then we walked across the street and hubby sat down on the bench pictured above while I did an errand.

My errand. I have been substituting for many days in a special education class and had promised students they each would have their own books to mark up and read. Although these students are in middle school, the reading level is much lower and I had to get what would interest each and I was able to satisfy most of them with their own book from Mrs. Johnson. Still there were three more books that I had to secure.  I went to Books-a-Million while hubby waited.  Bingo!  Within a few minutes I had a Goosebumps book, Dog Finds Lost Dolphins! and More True Stories of Amazing Animal Heroes, and Extreme Biology: From Superbugs to Clones. . . Get to the Edge of Science for those reluctant readers I am teaching this month--books to motivate them to read that they also can write in. Not only that, but I got a valuable phone number (1-800-353-7034) for those magazines that I wrote about earlier and hadn't been able to get rid of even after writing to the publisher. So far our outing as a couple was working.

Back at the bench, hubby and I went inside nearby Grillsmith Restaurant. These days I am holding the door open for hubby. We enjoyed a wonderful dinner inside the restaurant (me salmon and hubby beef) while he spotted a dog at the outside seating where leashed pets are allowed. We met that dog when we went outside after our meal.

Hubby again waited at the bench while I went to get the car. It is a little hard for him to climb up to our Expedition, but so far it is working. Then I stored the walker in the backseat of our car. (So glad I do not have to lift the wheel chair because it is very heavy.) Meanwhile volunteer caregiver Kenny is going to pick up an application for a handicapped tag for us that I can bring to my husband's doctor (the doctor that almost put him in a nursing home). We are both much happier with hubby at home instead of in a nursing home.

There are practical issues for a home bathroom when someone is handicapped. It was just hard for my husband to get the the bathroom in time when he needed to. We have had some near misses and misses in the bathroom with the result that someone had to clean up the floor and wash the rug.  I thought of a solution. It is so much easier to wash a rug that would cover the area, than to have to reach to both sides at the back of the toilet to clean up where that rug wasn't down. I cut up one rug to add to the commode rug with my Viking (quilting) sewing machine. I used hem facing to sew both sides to connect it.

Custom Toilet Rug

It is hard for hubby to sit down and get up from regular toilets even with the walker.  I purchased a Moen Home Care Locking Elevated Toilet Seat With Support Handles that I happened to spot at Lowes when I went looking for shower grab bars. This elevated seat can be removed when we have company.

Pictured at Lowes

With Total Coverage Rug 

It is crowded between two walls, but it works with the custom rug I sewed.

I also purchased the Moen Home Care grab bars for our shower to be installed by Plant City First Baptists "Second Saturday" volunteers that I found out about at our monthly Alzheimer's Association meeting.


Kenny has been so helpful. He knows just what to say for hubby's showers to help him get in the shower and even shaves him now since he can't stand. It was Kenny's brother-in-law who came over to install that Moen Home Care seat.

Let me bring you your walker, I say.

I don't need it, he says.

Let's bring it just in case is my reply. Most every time we need it because of that awful arthritis.

There's a lot of adjustment with dementia. Add another handicap that the care receiver forgets he has and more adjustments need to happen. I love my hubby, who would make all these adjustments for me if the situation were reversed.

Hubby Walks After Carefully Orchestrated Shower

Today has been such an fabulous day after weeks and weeks of struggle--the hardest of which was a husband who hadn't really walked since August 26th. Today my sweetheart walked a distance! I am glowing.

Walking to His Spot in the Den

Last time I blogged I wrote about his fantasy that he was walking, only to be followed by bring me the wheel chair. Walking has been the goal. I have told him that if he doesn't want to go to a nursing home he has to continue to walk more--not just hobble a little-- and to shave and shower. A gross beard was growing. The sponge baths were less than adequate. Now neighbor/caregiver Kenny had been released from the hospital several days ago and Kenny and I devised a plan.  It was time.  I needed my husband to shower and to shave whether or not hubby felt he needed it. It just had to happen, in my opinion. Kenny reinforced my resolve.

Kenny has a way with hubby that I as his wife do not have. I am the nag--the pill pusher. First Kenny took the Andis Styliner II Trimmer, the one I had purchased earlier when we had a shaving issue. Kenny is magic, a true gift from the LORD in our lives--so much patience with hubby. The two-week beard came off. Maybe we can start to use the shaver if that beard is kept in check.

"Do you want your shower now, or in fifteen minutes?" he asked hubby.

"Fifteen minutes!"

Kenny and I were united when the time came for a real shower. Taking off his clothes was the easy part. Actually getting him to step into the shower was another matter--he had been hobbling better, but was having none of getting into the shower with that weak knee. We decided to put the shower chair half way out of the shower.

Shower Chair Over the Edge

Hubby sat down and then Kenny brilliantly told him to put his two feet in the shower and stand. Kenny monitored his standing up and then moved the shower seat into the shower and hubby sat down. He was ready to shower--a true sit down shower that I had been lobbying for with that moveable shower head. See HERE. Hubby was able on his own to complete his shower.

When that shower was done,  Kenny had him stand and the shower stool was again put half in and half out. Hubby sat down and then put his feet on the rug. He stood and that shower seat was returned to the shower and he dried himself off with a towel. Hubby used the towel rack and the cabinet to walk to the wheel chair. I dried his back and we brought him in the wheel chair to the bedside.

A trick I had been using for most of the time since August 27th, was to have him balance himself with the arms of a sturdy chair, facing that chair. I used this chair when I needed to help him put on or take off pants. It worked like a charm.

Old Chair Does the
Trick In Getting
Hubby Dressed

"Do you want the wheel chair or the walker?" I asked him while he finished getting dressed.

"I will just walk." That he did! The most walking I have seen since August 26th! That hot shower sure gave him some spunk and perhaps continued the healing of his knee. No longer am I fearing the worst.

Among other great blessings today was that Pharis and his son, Junior, came over and did a bang-up job on the yard. It was mowed and weeded.

"It will take some time, but I think I will get this yard looking really great," Pharis pronounced. Pharis and son had used a weed trimmer to transform much of the yard today, but did not get to the roof.

Guinea Wasp

When I came home from getting my second set of fingerprints, Pharis and Junior were waiting for me. The yard looked great, but Pharis had discovered a guinea wasp nest in our yard and been stung by them. They found wasp spray in our garage fortunately (how anyone can find anything in our garage is beyond me) and as of tonight Pharis after taking Benadryl is okay.

What a wonderful day! Hubby is walking again!  He has showered and been shaved.

Today I also talked with a delightful lady who did my fingerprints (more on her story with another post) and discovered that my earlier post HERE was published yesterday as a commentary in two Florida papers:

http://www.theledger.com/article/20130906/NEWS/130909504/0/search

http://www.newschief.com/article/20130906/NEWS/130909504/0/search

I read much of this article to hubby and he recalled events mentioned in the article. Unlike last Sunday when hubby needed to stay home, tomorrow we head for church.

A Week in the Wheel Chair

Sunday, September 1

Wheel chair to master bath routine
accompanied by Ziggy

A week ago hubby has a relapse of not being able to walk. We make some progress by Sunday morning. Hubby can use the walker instead of the wheel chair to come to his "Archie Bunker" spot. No longer does he have to be lifted as he can get up, and take a few steps to get in the wheel chair or use the walker. Basically this has been a week in the wheel chair, however, with sweat pants, the urinal and bathroom adventures for Kenny and myself. I wheel him to the door of the master bathroom and he can get out of the wheel chair and on and off the toilet seat. Dog Ziggy often joins for the ride.


Sally and Jake come over before their church with breakfast biscuits from Burger King. Hubby hardly eats any of this and Jake eats half of his.

That morning we sing "Happy Anniversary" to Sally and Jake. Jake couldn't believe it was his 40th anniversary. I had planned a surprise anniversary party for them, but that party totally fell apart. What a bummer! I told Sally about it and she was pleased at all the effort I had gone to. She is always doing things like this for others and it was her turn to be fussed over for her 40 years with Jake.

"I guess 40 good years is not bad," Sally says to me. We both know that the next years will be very hard. We are going into a new normal. Our anniversary in April hadn't been spectacular as I wrote on this blog. When they have Alzheimer's, every day seems the same to these guys--anniversary or not.

Jake and hubby decide that we four need to go to Stone Mountain again. We all have been there, but not the four of us together. Sally and I say under our breath, In your dreams, guys. Sally and Jake go on to their church.

Our church meets in the afternoon and hubby thinks he will go, but that also turned out to be in his dreams. He is back to forgetting he has knee problems and forgetting he uses the wheel chair or the walker.

I text Kenny that I am going to church without hubby so that maybe he can check on him. The afternoon sermon by our Associate Pastor is awesome. The essence of his sermon is that we will not enter into God's rest before we pass through certain troubles, and we better not complain like the Israelites did! This is our sanctification after faith in Christ by grace alone justifies us believers. This follows my Sunday Daily Audio Bible from Job 42:2, 6, 12.

Then Job answered the LORD and said: "I know that You can do everything, and that no purpose of Your can be withheld from You. . . . Therefore I abhor myself, and repent in dust and ashes." The complaining stopped and then we read Now the LORD blessed the latter days of Job more than his beginning. 

This is my life, folks, and I am blessed each day and cannot complain like Job first did and the Israelites did.

On the way home from church Kenny calls my cell from the hospital where he has been admitted. He has another septic infection. Kenny has planned a sub for himself--his lovely mother Margaret. I tell hubby when I get home that Kenny is back in the hospital and he is motivated to walk better so we can visit Kenny. Oh I can walk, hubby says. He forgets that he hasn't been walking since last Tuesday and has needed the walker or the wheel chair. Even so, every day he does get better.

Sunday night I put a 7.54 pound pork shoulder blade roast (cost $15 at Winn Dixie) in the the crock pot to cook overnight. 

BBQ Pulled Pork and Soup

Monday, Labor Day

Ask me what my Labor Day was like. The short answer is: We had BBQ and I invited guests. In your dreams. 

Labor Day morning before hubby gets up I pull the pork to make the Southern "pulled pork". The fat is so easy to separate.  I pour an 18 oz. jar of Bull's-Eye BBQ Sauce over the shredded pork and stir. With all the fat I could get out of the liquid in the crock pot I started a soup with two diced tomato cans, older vegetables from the refrigerator including that half onion that had been my downfall when I cut my finger. The soup and the BBQ pork all turned out well. 

Note to self: From now on no movies and eating out. Cook what hubby eats at home. Perhaps this is the new normal. Will he be able to walk and go out? 

That morning hubby tries no knee brace, but is wheeled out to his spot in the den with dog Ziggy in his lap riding along through the long hall. On Labor Day Kenny's mother and our goat farmer neighbor Mary are invited for lunch but both cancel. I made Southern Banana Pudding to accompany the pulled pork I made in the crock pot and planned to cook more vegetables had they come.

There are several attempts by my husband to walk. Oh I can walk he pronounces. In your dreams, I think.

I have to go to Staples in Brandon to pick up a set-aside-for-me toner for my home copy machine that will come in handy for my 4 AM lesson plans for the day. Hubby decides he will go with me. Then he realizes again that he can't walk well and it would even be difficult to get into our SUV. However I do manage to get the Staples Labor Day sale on the toner. As usual I call home along the way to check on hubby.

At dinner time on Labor Day hubby wanted to go out to dinner. In his dreams, I thought, but said "sure" if he could get up and shave. He couldn't, so he settled for dinner at home.

Today-- Tuesday, September 3

I take a day off from my long-term sub job for errands. School can keep and there is a sub for the sub. My errands:

1. Back to the endocrinologist for the official word that my thyroid does not have cancer, but will just need monitoring every four months to see if it grows. Furthermore my carotid artery is clear. I loved the informal comment from this doctor:

Endocrinologist in Brandon

You don't need to take expensive pills forever just because some doctor was taken to lunch by a rep! 

This is so true! I had thought that about the pill Aggrenox which I had been taking twice a day for TIAs for ten years but finally challenged because they are so expensive and I really do not believe I have or have ever had mini-strokes. I just need to remember to keep hydrated with water and not coffee. Today's great blood pressure (121/67) and the clear carotid artery confirm my belief. The doctor pointed out that I would need a neurologist to officially confirm no Aggrenox. (I do not want another doctor appointment, folks.)

2. I meet Pharis at Home Depot to purchase supplies he needs for our roof repair. I also purchase a battery and a belt for the riding lawn mower we gave him in exchange for helping us. I get the 12 months interest-free Home Depot rate through September 4th for all the purchases. (Why I need to do this today.)

3. I go to have my finger prints taken again because I flunked the test after I cut my finger. I get there and find out I was supposed to have an appointment since I had checked to see with my employers (I teach occasional classes for DUI offenders) if I needed one. The finger print place gives me the phone number and I book that appointment for Saturday. Saturday for finger prints will work in my busy schedule.

Pray that Kenny gets out of the hospital soon. As I mentioned responsible Kenny had arranged for his delightful mother Margaret to be there for my husband. She comes over today and cheerfully encourages hubby's morning pills (I hadn't been able to get them down hubby this morning). When I get home from my errands, hubby has been eating the lunch she prepared. It is wonderful to have such neighbors.

Shortly after Margaret left, I take over again, wheeling hubby to the bathroom with dog Ziggy on his lap. Back to lesson plans for the special education substitute assignment. You can bet that hubby will want to go out tonight in his dreams. I am making dinner for us.