If I live to see the death of my husband, then it will come at night. His version of sundowning, the strange behaviours that overtake those with dementia as the sun goes down, includes not only that but severe struggles with breathing, coordinating movement, swings in temperament. It is like a concentrated version of the bad parts of his disease.
I say if I outlive him because what doesn’t kill you makes you stronger. In my case I hope it is the latter - sorry hubbie. A recent outing was the Muttart - four pyramid shaped greenhouses with different zones in each. I would love to share a photo but my primary focus was a wheelchair workout.
A common area nestles below the pyramids and has access points off it to each zone. Wait for it…
Each zone had a serious incline to it, and I have done regular disability access ramps and this is NOT the same, up which I had to push the chair but then also returning down without careening down the slope into other visitors or losing a grip on the handles and watching hubbie disappear into the cafeteria like a bowling ball. I have to admit after four zones, I was well done. Navigating the ice walk back to the truck was a piece of cake after that.
By the time we were home, it was decided that hubbie too was tired so he stuck to the ground floor. Stuck like twelve hours stuck when I eventually got him on the first rung of the ladder back to the rest of the house.
Navigating stairs is a priority and this is my new best friend.
The magic belt.
There is also another phenomenon that strikes the afflicted as their disease progresses, a resistance to stand in the shower. This, however, was quickly solved with a one hour mercy dash to Walmart where I picked up a Fisher-Price baby bath, a bath stool of sorts and more towels. I already had towels coming with an Ikea order I had placed as it seems that towels are now a hot commodity in this house creating at least two, often, four washes a day.
I may have mentioned this before but it bears repeating. It is possible to wash with a limited amount of water, and ideally a bowl of some sort, and not with a shower. We’ve now used the baby bath to stand in while a washcloth bath ensues - I am glad that being clean is still important even if the shower is a bit of a challenge, emotionally. A baby bath is ideal because it allows for a man’s feet. A woman might get away with a kitchen sink type basin. First attempt, was just towels, and well, that was a six machine wash day.
To further simplify bathroom access, at least in the primary suite, I simply removed the door. I added a modesty curtain, if ever privacy is demanded, and hey presto, another washroom simplification. I think I am almost at the edge of my areas to simplify but each day, I surprise myself.
The daily challenge is feeding, and sometimes liquids. Like a very determined waiter, I pounce when I think hunger might be motivating and suggest today’s specials. This week’s success story has been flash fry thin pieces of steak that I tear up before I place them on small amounts of bread. This morning, after a fairly brutal night, it was a three egg gouda omelet. I can hope to get one good feed into hubbie each day, although some days I don’t succeed. Then, the liquids, last night, around 11pm it was the special ice-lollipops filled with electrolytes that I eventually cut into chips and fed to him on a spoon.
This week has been characterized by a much better acceptance, although not always, of it is what it is. Bathing re-jigged. Take conversation when the fog clears, and it does clear, this is not the same as Alzheimers, it is a complex condition that allows the afflicted to be all too aware of what is happening to them, and drop what you’re doing and pay attention! Three sleeping areas now, across three floors. Hubbie sleeps where he finds himself and sometimes he finds himself somewhere fresh in the night. I now have a baby monitor that I move around the house to keep up with his movements, assuming, especially at night, I have noticed. Again, an excellent find. The baby section of the store is very much our friend and adds weight to the adage about the beginning of life and the end of life being similar.
The news this week of Bruce Willis has meant that he has featured in our conversations and I think it was best summed up by hubbie after I explained to him that Bruce has what he has, Frontal Temporal Dementia (as far as we now etc.). Hubbie said, ‘Poor bastard’.
As always please:
or
MWAH
You continue to problem solve and use your creativity. I imagine that you cherish the moments when the fog clears. Hubbie is blessed to have you by his side. Sending you thoughts of strength and resilience. Make sure you are also finding time for you!