Sunday 25 February 2024

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.


Friday 9 February 2024

All Bad in a Previous Life

My little corner of the world must be filled with sinners from previous lives. The weather gods have just smited us again.

Remember we had a hurricane eighteen months ago. Then we had wildfires nine months ago. And floods seven months ago.

Well, this time it's snow. Northeastern Nova Scotia, New Brunswick, and Prince Edward Island were dealt a four-day, once-in-a-generation blizzard last week.

We got about a metre of snow where I live but the wind blew it into drifts five feet high in many places.. Those places were often the exact same places we puny little people had to shovel out in order to get to our vehicles and get our vehicles to the streets.

I just realized I mixed my metric and Imperial measurements in that last paragraph. That's what comes of growing up with one system of measurement and then having to learn the other system as an adult.


Some photos taken from my front porch:

Taken partway through the storm. Do you see the car to the left of the black SUV? By the end of the four days of snow, all that was visible of the car was the side view mirror. (In this shot, the SUV had been cleaned off and part of the driveway cleared out . . . temporarily.)

The snow was quite deep in front of our house because the wind was carrying it up and over the house and dumping it in the front yard and driveway. For context, there is a foot-high drop in front of that railing, so the snow is a foot higher than what you see next to the railing.

The front half of the car is freed from its snowy prison.

And this photo taken from the street in front of my house:

The towering mountain of snow piled at the end of our driveway by the machine that cleaned our street. (That bit of black on the left is the end of the driveway.) The kids next door love the mountain.

And the best part is . . . (drum roll) . . . there's another eight inches of snow in the forecast for early next week . . .

I'm so glad my son is living here again. I'd never be able to move all that snow myself, especially as I had my mother here with me for three of the four days of the storm. Her dementia is progressing, and I had to keep eyes on her most of the time she was awake. I couldn't give my son much help in the snow shovelling department.

I'm trying to be very, very good in my current life so maybe in my next one there will be no apocalypses of the weather kind.

How's the weather in your neck of the woods?

And would you rather have a hurricane, a wildfire, a flood, or a blizzard?

I'm just thankful we don't tend to have earthquakes, tornadoes, or volcanoes here. Hopefully I haven't jinxed us with that statement. 😁