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.



River said...

I am SO glad your mum has been approved for in home help at last and I hope things move along now a little faster than a snail trying to climb Mt Everest. Hang in there while you savour the relief you are due.

gz said...

A grief counsellor is a good you can grieve for the person who has disappeared, even though their body is still here.
Good progress, even if it is slow xx

Mike said...

They make covers for thermostats that lock. Or you could have someone move the real thermostat to a hidden place and put up a fake one.

Andrew said...

At last, at last. What a relief for you. I suppose if there is a quick deterioration a care place could be found sooner.

dinthebeast said...

I am so glad for you. You deserve this. You deserve better than this.
The folks who will be helping her are professionals, and are most likely really good at what they do. They will find things that you didn't find to make the situation work. That is not your fault. That is their skill.
Briana's mom had to move to a nursing home after Betty, her cousin who she was living with, found the house full of smoke because Briana's mom had decided to dry her underwear by draping it over a lamp, then forgot about it.
Also, your mom hit the damn lottery when she had you for a daughter, believe it, it is so.
And speaking of light at the end of the tunnel, Briana finally made contact with her brother, and he has agreed to sign her mom's estate over to her, meaning we will have the resources to fix the house in Miranda so we can live in it. Not in time to escape the snow here this winter, but seeing those papers from the paralegal sort of made the whole endeavor feel more real than it has so far.

-Doug in Sugar Pine

jabblog said...

Though moving so very slowly I am so relieved for you that the wheels are finally turning. I just hope they speed up soon.
Keep repeating to yourself the words of the doctor and the grief counsellor - you have done and are doing a good job and now it's a job for someone else to do.

Infidel753 said...

I hope this will make a difference to you. It sounds like she's already past the point of needing constant supervision. It's frankly astonishing that the waiting list for space in a care home is eighteen months. With my own mother I was able to do that pretty much as soon as I decided it was necessary.

Not at all an exaggeration to say your sanity could have been on the line. I've been there. One of the hardest things is not forgetting your own mental-health needs because you're so preoccupied with someone else's. Taking care of another person under those conditions is an enormous strain.

Charlotte (MotherOwl) said...


Steve Reed said...

Well, THANK GOODNESS help is on the way, even if it takes its own sweet time. It is very hard for an adult child to manage the decline of a parent. I couldn't have done it myself without my brother and the staff at my mom's retirement home. You deserve to get some of your life back and having professional carers, who are used to navigating the hurdles of dementia, will help your mother as well. Don't feel guilty! You've done SO MUCH for her!

Boud said...

I'm glad one burden has been lifted. It's a long difficult road all around. And you have been and continue to be, a star daughter, no matter how you judge yourself. That feeling of wishing to do better is built in to care giving, btdt.

Janie Junebug said...

Darling little donkey, I'm so glad that some progress has been made. I believe you when you say your sanity depends on it. It's an unbearable situation for you, but you've been a saint about it. It's about time the doctor listened to you. I learned in a nursing class that the sense of taste becomes less active as we age, except the taste for sweets tends to remain. I hope in-home assistance is available SOON!


kylie said...

You have worked long and hard for this and it is so long past necessary.
I hope you can find balance again. And joy.
Love to you

DB Stewart said...

I am so happy to hear this news. What you've been through...I had to cry a bit reading this. Your relief is palpable (and so deserved) and I hope the momentum continues.

messymimi said...

You are a precious daughter to have done so much for your mother. I do hope the help comes through soon.

Susan said...

What a relief. Yes the wheels move slowly. My family could have written your post, everything rang true. I'll add up to ten calls a day with the same question and now we have home care in twice a week the first call of the day is always to complain about them! We specifically asked for them to have a cup of coffee and chat with Dad but his feathers are ruffled because they are drinking HIS coffee! I'll confirm the carers are very good at calmly deflecting his hostility. We are hoping eventually to go the daycare route. I am so happy you are moving towards the light, in a good way of course.

Diane Henders said...

Thank goodness you're finally seeing some hope! Hang in there... :-)

jenny_o said...

River: Thank you. I smiled at the analogy of a snail trying to climb Mt. Everest. Very apt :)

gz: The grief counselling was supposed to be for the loss of my husband (and cousin and friend/boss). I felt like I still had things to process that were weighing me down. But the counsellor has been flexible, allowing me to talk about other things too. Maybe anticipatory loss regarding my mother will come later.

Mike: I used to know that about protective cages but forgot it, so thank you for mentioning it. I just wish my mother wasn't quite so sharp in SOME ways. She would probably take a hammer to a cover. But a fake thermostat might work.

Andrew: I'll know more after my appointment with Mom's care coordinator. My current understanding is that due to the shortage of spaces and our ballooning senior population, one has to be recommended to a nursing home. And that might happen faster if she deteriorates quickly, as you said.

Doug: I'm so happy for you that things are looking better for getting your lives more settled. That's great news. Reading your lottery comment made me cry. I feel like I haven't been very patient or forgiving with her. Dementia is such a frustrating disease. But you know that already.

jabblog: Yes, I will be very glad to let someone else do this, and have a chance to simply be "family" again.

Infidel753: From reading on Facebook groups for caregivers, many of whom are Americans, I think there are some differences between Canada and the U.S. My understanding for people in our province at least is that a doctor has to recommend a patient before they can be admitted to a nursing home. And we have such a shortage of places that our hospitals generally have an overflow department for those who can't go home but can't yet access a nursing home spot. It's a grim situation and will only get worse over the next twenty years as the baby boomers enter the picture in force. It's one reason (of several) that I had a shower put in my main floor half-bath last year. It makes my house accessible for me even when I can't manage the stairs. Which is hopefully a long time from now, but one never knows :)

Charlotte: Thank you, and I hope your situation is improving.

Steve: I never anticipated having to look after my aging parents. I guess I was naive. But you're right, it has made me feel like my life isn't mine. I am anxious to get some of it back, at least.

jenny_o said...

Boud: It is maddening that I can feel frustrated and still feel guilty too! One should cancel out the other :) Thank you for the kind words.

Janie: You're always so encouraging. I'm definitely not a saint. But I always start the day with good intentions. That must be worth something. Hah. My mom has a sweet tooth now for sure.

kylie: I hope so too. I feel like my life has been in limbo for so long. So many things have had to be put on hold. How are things for you? We need to catch up by email!

DB Stewart: We can cry together (because I surely did) :) Reality has reared its head (re the delays) but I'm hanging onto the good thing that has happened.

Mimi: It's a catch-22 situation here - the more you do for your loved one, the less help they will get from outside services. But there comes a point where the need exceeds what family can do. We have reached that place, I'm afraid. I gave it my best, even though my best doesn't impress me.

Susan: Your father's behavior sounds so familiar! I am bracing for the new problems that will arise when my mother starts receiving caregiving from outside sources. Do you think your dad will like the daycare? My mother loved it - not every aspect, but loved the chance to socialize. I am still waiting to hear from them (and waiting for an answer to my many messages I've left since November). Fingers crossed for both of our parents :)

Diane: Thank you - hanging in there just got a lot easier :)

Mr. Shife said...

I am so glad to hear this news, jenny_o. Hang in there as that light is getting closer and closer.

37paddington said...

So happy to hear you will finally be getting so help. I hope it comes soon. I think your mom will get used to a regular person, even if she resists in the beginning. Caring for our elders can be a soul sucking affair. I am so sorry this is such a hard pass. You've been through it these last few years. I pray for a good home health aide for your mom, and your family.

e said...

Hoping all is okay with you!

Mr. Shife said...

Just checking in with you, jenny_o, and hope that all is well.