I've mentioned more than once that my mom has dementia.
Dementia is frustrating enough on its own, and I am finding it a challenge with Mom because she won't accept any kind of government-provided home care for the things I currently do. Partly this is because she doesn't realize she needs help, but partly it's because of her personality. She has always been very independent and lived her life on her own terms.
Sometimes my frustration blooms into full-on resentment and sadness and feeling helpless and hopelesss that there will ever be an end to this thankless job, and I have to step back from all but the bare minimum of things I do to look after her. The bare minimum consists of taking her pills to her every evening and taking her out to buy groceries once a week. (If she runs out of milk or cookies or pie - three of her major food groups - during the week, I buy it and bring it to her at her pill visit instead.)
Sometimes I have enough energy to deal with the constant repetition, complaints, and questions for a longer period of time, and we will go for a drive and then stop for a take-out meal or buy a pre-made meal while getting our groceries and heat it up in the microwave at her house.
That's what we did today. Let me describe how this kind of visit usually goes.
First, I put away her groceries. She is prone to setting a bag of groceries on a living room chair and forgetting about it, so this step is up to me.
Then I heat up our meal while she talks. I remind her to take off her jacket, put her purse away, and wash her hands. She has not used soap for the better part of two years, and I have learned that even wetting her hands under a running faucet is a win, so I have learned to shut up about the soap so as to avoid a tongue-lashing, and hope for the best.
When her food is hot, I remind her to sit down to eat. She may or may not do so the first time, but eventually she will get annoyed with me telling her and come to the table.
While we eat, she talks non-stop.
Today she pondered aloud about her granddaughter's belongings that have been in the basement for a few years (because her granddaughter lives a half a country away now and has only been here once recently due to the pandemic. That visit was last summer, and Mom was so confused she didn't know who the granddaughter was for the three days she was there, and wouldn't have understood why she was taking things from her basement). She pondered that four times.
She told me three times about the "creatures" (deer) she saw in her yard "this morning" (which she had already told me about at every visit, at least once per visit, since she actually saw them a week ago - I was there when it happened).
She asked me three times if I have ever been to my brother's house - a six hour round trip - which I actually have not, because I can't leave either my cats or my mother alone long enough to visit him.
She told me three times about the cards she gets in the mail from a fellow teacher she knew years ago (who she can no longer recall, usually refers to as a student, and complains she doesn't know what the writer is talking about).
She asked me (surprisingly, only once this visit) whether she had ever told me about the plants growing "in" her deck (they are growing up between the boards of the deck). She has indeed told me that. Over and over.
All of these things are topics of conversation every time I visit her, which as I have mentioned is EVERY SINGLE FREAKING DAY AND TWICE ON GROCERY DAY.
I use the mealtime with her as a chance to do her dishes, although she is pretty good about keeping them washed as long as the weather isn't too warm. On the other hand, all she uses these days are mugs and glasses, and sometimes spoons to eat her pie, so it's not a big job.
When I leave her house, I generally take with me either clothing that needs washed, or - like today - things that are a hazard to her. She no longer even notices that I have anything in my hands. I used to have to smuggle things out in my pockets, such as used light bulbs or old batteries or moldy food, but now it is easier to do this one thing at least.
Today, my bag of goodies included:
- a partially used jar of jam from her cupboard. She has not used jam for months, and had two unopened jars plus one open one in her fridge. Somehow, she decided that the opened jar should be in the cupboard and moved it there. I have no idea how long it was there, but since I'm the one who would be called to come and usher her through a bout of food poisoning, I decided to play it safe and remove it.
- a partially eaten piece of cheese on her counter. She might or might not have planned to put it in the compost bin later, but ditto about the food poisoning.
- a plate that had a large sliver broken off one side. I have no idea where the sliver is.
- a dishcloth that I used the last time I washed her dishes. I try to take these home regularly and wash/sanitize them because I realized she was using them for dishes and the floor. Yep.
- the container our pre-made meal had come in. I could have washed it and put it in her recycle bag but chances are that she would notice it (don't ask me how, but she does) and drill me with questions about where it came from and why it's in her recycle bag, and then blame the neighbours for putting it there when she was out for a walk.
I am about to lose my mind, people. Thank you for listening. I know that the endless repetition, complaining, and memory problems are a result of the dementia, but I don't know how to listen to it day after day without a break and without going mad. I wish she would allow someone to come to her house, even a couple of times a week, to listen to her or perhaps take her on an outing, but she refuses completely. Recently she was complaining about the stress she was under, and when I asked her what was stressing her out, she said that everybody was trying to tell her what to do, and she just wants to live her life doing what she wants to do. There was no point in me saying that "doing what she wants to do" affects other people in her life, because she would want to know why, and then say that she doesn't need anyone else's help. It's a closed conversational loop and a fruitless exercise.
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Anyway, I also want to update you on the two little fawns that I wrote about a few weeks ago. Here they are, in a video and a photo, taken an hour ago out my front window. The fawn on the left was just off the front walkway, within ten feet of my front door.
And here's one more video from when the mama came back to collect her babies and then went through my neighbour's back yard. See the babies bound up to her and try to nurse (at 19 sec), and see mama not having any of that :)
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I hope you all have a good week. And just once, when people are getting on your nerves, I wish you the strength to say "I'm not having any of that" ....
23 comments:
How I would love to see a friend or neighbor she knows and remembers come in once a week and listen to her while you get a few other things done for her.
I am glad you have this blog as an outlet.
Please remember to take care of yourself first, because if you are down for the count, you can't be of any help to anyone else. Says the stroke survivor.
Glad the fawns are doing OK.
Briana, who dealt with her own mom's dementia, is pounding on the table and imploring me to tell you not to ruin yourself trying to care for your mom. She mentions that if you incapacitate yourself in your efforts, your mom will indeed get help from other sources, and that it doesn't have to come to that.
Or maybe it does, I don't know, as I am not there.
Anyway, we both care about you and hope things improve enough to warrant more fawn pictures...
In news from out this way, we are moving to Humboldt County soon and away from the ten feet of snow that may become more common here because of the EL Nino phenomenon. Also, we have a different car as the last one was totaled. We were not hurt, luckily. The cat has been murdering flying squirrels, and Briana shined a UV light on the squirrel's tail and it fluoresced pink. Who knew?
-Doug in Sugar Pine
I just deleted my first remark as too preposterous, but wince it's the only solution I can think of, here is is again. Engage a social worker who presents herself as you. I that is so unreasonable. someone who says they are sent by you. You can't leave her to starve or hurt herself, but you must do something.
Dear Jenny,
I'm sorry that you and her are goind through this. I think though I've told you before, you write so well. You pull me into your life and stories, like I'm there with you having tea and we're talking.
What happens (and pardon my ignorance, I truly don't know the answer), what happens if someone shows up to help?
I hope you find a way to get her and you, help. Thank you for sharing your story with us. You told it so well.
Huggs, Ivy.
It is extremely hard to deal with the irrational. So If your Mom won't take a break. Think about it.
Aaaargh. I feel for you. So much. And wish I had workable solutions.
Huge hugs - and thanks for the photos and videos.
Joanne has a good idea, although perhaps a step further and have a social worker visit with you present a few times to see if your mum "takes" to her and might then be willing to allow her to come instead of you a time or two each week. This is a very sad time for you and I hope it gets easier, although she will need to accept another person for that to happen.
The fawns are delightful.
I have seen some Instagram Reels showing little work arounds for people with dementia. I expect you have probably found lots of resources but when I see one again, I'll let you know, just in case theres anything useful.
You're doing a great job, daily visits are top shelf commitment. Well done!
I hope you soon find a way to get a break, maybe see your brother or take a holiday or just something that fills your cup.
Love to you!
Joanne's suggestion is brilliant.
With dementia you DO have to repeat things over and over...treat everything as the first time you have heard it...and it is wearing.
You need a respite, a break, regularly, to be able to keep going, as they say, you can't pour from an empty cup.
You need to let people..I don't know who that would be where you live...know what you have to deal with, even though things will only happen if she decides
Dementia is horrible for everyone involved. Is there someone who could go with you to visit, who might bear some of the burden and abuse and give you some respite? Allowing her to continue being 'independent', though she really isn't, is not really working. Soon she will be a danger to herself and others, if she isn't already, then 'help' will be imposed, regardless of her wishes. You have my sympathy, Jenny. You must, though, look after yourself first.
I'm so pleased to see that those beautiful fawns are thriving and their mother is showing them 'tough love'.
Also, the fawns!
Squeee!!!!
Do what you have to do and try let your mother's nonsense just wash over you, as my brother did when he was carer for my mother, though she did not have dementia. My brother with his acquired brain injury was the only one of her children who could care for her.
I hear you. You are doing a lot more than I could bring myself to do. Marie, Melbourne, Australia
I'm so sorry you're having to deal with this. It really is an incredibly difficult situation. I do think, as Joanne said above, you need to find a way to give yourself a break. What would happen if you simply engage a part-time caregiver and show up with him/her at your mom's, rather than giving your mom the opportunity to oppose that decision? If your mom argues against it, could you say, "I'm sorry Mom, but I can't do all this alone and I need help?" I realize she might not absorb that message long-term but it might help her understand in the short-term. I'm sure professional caregivers are used to rejection from difficult clients and they probably know how to deal with it.
Mimi: It feels to me like all the friends and neighbours that she remembers are already doing their part (and more) in dealing with her or have their own trials (eg. spouse with dementia or their own health issues) to worry about. She recognizes fewer and fewer people as the months go by, so the list of possibilities is very small and I hate to impose. I am thankful to have my blog, and also thankful to have started journalling. It helps.
Doug: Thanks for your update! I still hope that you'll start a blog someday but in the meantime I like the bits of news you leave in the comments. I do understand what Briana is saying, and I know myself well enough to know that I am in dangerous territory lately; my empathy has dwindled to such a low level that there are days I can't find it. But I really don't know what to do. Calling Adult Protection Services is a big step (they're the ones who would step in if something happened to me) and I've been told by a reliable source that they should be a last-ditch solution because they're stretched very thinly for resources and people under their care are not looked after in the way we would hope.
Joanne: The issue here is my mother's "feistiness" (stubbornness) - she would most likely tell such a person to get off her property and never come back - if not the first visit, then at some point in the future when they did something she didn't agree with (which could be anything). Government home care will not come unless she gives permission. Anything else has to be paid for personally, and she certainly won't pay for someone she doesn't want to have there. The remaining option is for my brother and I to pay for private care, which is exhorbitantly expensive, and she would - at this point at least - likely reject that care too. I've been through all of this with the people at the geriatric clinic and there seems to be no solution except to call Adult Protection Services (see my reply to Doug, above).
Ivy: Thank you for the kind words - I don't like to talk about this stuff on my blog because it's prolonging the time I have to think about all of it, but some days I can't think of anything else anyway, and need to get it out of my head. If someone were to just show up, she might accept it once or even a couple of times, but only as a visit, not to help, and if they did one thing she didn't expressly permit them to do, she would tell them not to come back. At some point, she may become confused enough to allow them to stay . . . or she may not. She has a wide, deep streak of independence that seems unaffected so far.
Red: There seems to be no way for me to have a break. I really don't know what to do except reduce my caregiving to the bare minimum. I think I need to write another post addressing the questions and suggestions here!
Elephant's Child: Your listening ear has been one of the things that saves me, dear friend. I wish there were workable solutions too. Instead, I am being told that I have to essentially abandon all care before anything will be done or anyone will take over. It's not a good situation. As for the videos and photo, I feel like your roos and our deer are a good trade :)
kylie: I've gotten a lot of help from watching videos online and reading, and welcome anything you find, as the internet is a big place and I'm sure I haven't discovered all the good tips yet. The issue here is more my mom's personality, her absolute rejection of anyone's help except mine. She doesn't actually see me as helping her, she sees it as me visiting, and she has told me (when I've raised the topic) that if I don't have time or energy to visit, to just not visit, she can manage. I feel so helpless because she doesn't understand that she can no longer figure out her medication or just walk to the grocery store. I want to tear my hear out or bang my head on a brick wall until the frustration is drowned out by pain. I honestly don't know what to do.
gz: I've already tried to tell the folks at the geriatric clinic what this is doing to me (and, in turn, to my mother), but they have told me bluntly that there is nothing they can do until she has PROVEN that she is unsafe living on her own. As long as she is getting support (from me, from the neighbours) she will not have her freedom of choice taken away. In my last conversation with them, they said that essentially she has "made her bed", and whatever happens to her because of her personality will be unfortunate but a result of her own actions (eg, having a fall because she decides to walk to the store). I understand and accept that, but I can't actively abandon her and I don't know what to do in the meantime until that big thing happens that leads to her being taken into care against her wishes.
jabblog: The only way we are going to get anyone to try to go into her home is to hire private caregivers, and that is very expensive. (And my mother won't be paying for it because she says she doesn't need it.) I am at my wit's end.
Andrew: Isn't it strange that your brother was the only one who could live with your mother's situation? Do you think that was because of the brain injury or in spite of it?
Marie: But I'm reaching the limits of what I can do - I feel it.
Steve: I could be wrong, but based on what has gone on in the past, my mother might agree to a "visit" (but not help) from someone she doesn't know, but afterward she would get angry and defiant and not let them come back. And I'd get a lecture, something I am not accepting too well lately. It feels like an impossible situation. The public system here for looking after dementia patients who are stubborn about receiving help is set up to respect their wishes first and foremost. And private care is prohibitively expensive.
I understand that. And this is not an easy thing. If she can find someone she likes though, man, it will be of huge help to you. Thank you for sharing your story with us.
My heart goes out to you. We are going through exactly the same thing and I don't have the answer to the problem. I'm leaning towards going cold turkey, saying we will be gone for a week. Arrange for someone to do pills, Dad takes them or not. Of course we will be hovering in the background but he won't know that. Thinking at the end of the week Dad will be lonely and happy to see any face. If not it will be repeat, repeat. Our other thought is to pay privately, if care shows up surely he will eventually get used to it. We will then recoup our costs from the estate. Good luck and enjoy those darling fawns.
You need to take care of yourself, Jenny. There is only so much any one person can do. You need help. Joanne’s suggestion could work.
Ivy: I'm holding on to that thought, that sooner or later Mom will become confused enough that she won't realize the person "visiting" her will really be there to help her.
Susan: I've considered that, too. I would need to work up some energy to carry through on it. Lately it's just been a struggle to get through each day with no extra thinking or needing to make arrangements. Soon, I hope. I'm interested if this solution works for you; I hope it does. Good luck and I feel for you!
Marie: I've explained more fully in a new post what the challenges and limitations are. I thought social workers have a different job than that, but even getting any other person in to help Mom seems like an impossible job.
What a horrible situation - no wonder you feel so stressed and overwhelmed. Empathy can be a curse, can't it?
I'm not sure whether this has been suggested to you already, but have you considered applying to the court to become your mother's guardian/representative? That would enable you to override your mom's wishes and move her to a care facility if that's what she needs.
The process requires a "capacity assessment" by medical professionals, but it isn't necessary for one of them to be your mom's family doctor. I know her lack of a family doctor has been what stopped you from proceeding through other channels; and this court-directed order might be a way to work around that. I found information at https: //novascotia.ca/just/pto/adult-capacity-decision.asp and https: //www.respiteservices.com/app/media/4072. (These won't be active links because I added a space after the "https:" - I wasn't sure if Blogger would let me post links in a comment.)
The document from RespiteServices is older information that still refers to "guardianship", but I thought it explained the process well. Apparently since 2017 in NS, "guardians" are now called "representatives", but it sounds as though the overall process is still the same.
Anyway, I hope this helps. If not, please accept my apologies for adding yet another 'thing' for you to consider in your already-overburdened life.
I know how difficult and painful this can be, having gone through the same with my own mother. Early on there will be better days when she's more lucid, but eventually even those will dwindle to nothing.
I agree with Doug's comment. Do everything you can to take care of yourself. You're going to be under enormous strain, possibly for years. Your mother, back when she was fully in her right mind, would not have wanted you to sacrifice your health and sanity for this.
For me, as hard as those years were, at least now I have the satisfaction of knowing I didn't fail my mother at her time of greatest need. It helps. I'm sure, years from now, it will for you as well.
Diane and Infidel753: Sorry - I was SURE I had replied to your comments already but clearly I was doing it mentally only :)
Diane: We've been told about applying for guardianship, but the sticking point is that it would still be extremely difficult to have Mom assessed as incompetent because in some ways she is still capable, and doctors do not take lightly the taking away of a person's independence. And when she knows she's being tested she is able to focus with startling clarity. I've been told this is not uncommon, but it means she comes across as being more competent than she is for everyday living. We do have that process in reserve for when she becomes worse. I think if I could just have a regular break from the daily interactions it would help me so much. That's where I'm focussing my efforts right now, trying to figure out how to do that.
Infidel753: I'm trying to maintain my own sanity but it's getting harder and harder. It's so mentally exhausting interacting with a person with dementia, never mind that it's my mother and we have a history. If that history had been different, I might have been able to go for longer before reaching the point I'm at now. But I think that even with the best of relationships, there comes a time when one person can't do all that's required, and I've just reached that point sooner. I'm glad you can look back and feel you did a good job taking care of your mom. I can't see myself being able to do that but I hope you're right and it will be that way for me too.
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