Light at the End of the Tunnel

Following an assessment ten days ago, my mother's geriatrician has finally agreed to sign a form stating that she no longer has the capacity to make her own health decisions. This is huge. I expected nothing from this assessment, like all the ones before it. But apparently the doctor heard what I was saying about my mother's recent decline.

This means:

- My brother and I can consent to her receiving assistance in her home without her agreement

- We can get her on a waiting list for placement in a nursing home

- We can make other health care decisions about treatment, decisions she might not be able to make because she can no longer absorb information or think logically

It's such a crippling weight off my shoulders.

I asked the geriatrician's assistant what to do if Mom "fires" the in-home help. She said that now the form has been signed, the workers who come to her home have to try very hard to keep their foot in the door. And she said many of them are very good at handling difficult clients.

There will still be work ahead for me, I know. The wait for a space in a care home is long, averaging about 18 months. But being relieved of some of the burden of medication management, daily hygiene, and meals will be a tremendous help to me. For the last three years, I have felt like my life was being consumed by tending to my mother, largely because she wouldn't accept other help that was available to her. When I read my journal from the summer of 2023 I am afraid for the person I was then. The only thing I could do was limit my time with Mom. Gradually, after many months, I was able to start to relax and try to repair my nerves.

Now I can see some light at the end of the tunnel, and contrary to the old joke, that light is not an oncoming train. With professional help, Mom will get to stay in her home for a while longer, and it won't be at the cost of my sanity. I know that saying my sanity was on the line may sound like an exaggeration, but, trust me, it's not. I have been barely treading water for a long time.

I am hoping that increased contact with people other than me will not just provide her with physical care that she requires, but will also help with her boredom and socialization needs.

As I mentioned above, she has declined quite a bit since the last assessment eight months ago.

She has twice filled the house with smoke from overheating something in the microwave. When the smoke detector went off, she didn't know what it was or what she should do. We are lucky she never started a full-blown fire. (The microwave is gone now.) 

She is unable to understand how the furnace thermostat works, and tends to use it like an ON/OFF switch, resulting in a very cold or a very hot house. She had similar problems with the portable air conditioner last summer.

She's not understanding time, distance, and season. She has gotten ready to go outside in only a light jacket for a winter day because the air in the house was warm.

She has lost over ten pounds since last June, which was a particular red flag for the doctor. I keep her supplied with food meant to appeal to her even if it's not as healthy as it could be. She especially likes sweets lately, which I've read is common as the disease progresses. I also take her out twice a week to eat. But she just doesn't have much appetite anymore.

She has also been forgetting to take her morning pills, the ones I leave with her each evening when I take her bedtime pill to her. For nearly three years she has been able to manage the morning pills with the help of a note placed beside her pills. No longer.

The bottom line is that dementia is a progressive and fatal disease. As a person's brain dies, all the voluntary actions start to die, then the involuntary ones. People become unable to walk, control bladder and bowels, talk, interact, chew, swallow, smile. Dementia will eventually kill her, if she doesn't die of another cause first. The doctor made a point of telling me not to feel guilty and that I have been doing a good job of caring for her. That does help. I wish I could have taken better care of Mom but it's not been easy for a host of reasons.

And the grief counsellor I am seeing has also reminded me about the inevitability of decline and death due to the illness, and that I cannot stop or reverse the end result. That helped too.

I knew those things, but when you are in the middle of the situation that knowledge can be hard to remember.

Knowing that real, hands-on help is coming has helped me find my empathy again. That is also a huge relief. Stress is a horrible thing, and mine was affecting not just me but also my mother. I had so little patience with her over the last months. Even limiting our time together gave me only so much patience for the next visit. I dreaded the pill visit from mid-afternoon until the visit was completed in the evening. I don't like feeling that way and I don't like how I reacted to my mother because of it. But I felt helpless to change anything while the situation was getting worse and worse and Mom refused help. 

I hope that being honest about this process as it has played out with my mother and me might help someone else who is going through the same thing or may do so in the future. Even with the knowledge I had from observing dementia patients in my father's nursing home for eight years, I realize now I knew next to nothing about meeting the challenges myself.

(Update since I first drafted this post a week ago: The wheels of in-home care move slowly. So slowly they could be mistaken for standing still. I'm still waiting for action. This is one of the bumps in the road I was talking about. Stay tuned.)

The view from inside the tunnel hasn't changed yet, but I'm hoping . . .

Thanks for reading, my friends. I hope the week ahead is kind to you.