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.