Burden Increasing

[Anonymous]

My mother has lived with us for two years. She is pretty good but cannot live alone (can’t take her meds properly, can’t drive, can’t handle finances anymore, has falling a few times but not gotten hurt). Her memory is impaired in terms of things like asking the same question a bunch of times but average person probably wouldn’t notice an issue.

Here is the issue: I see how things are incrementally getting worse. Her balance, memory, etc. are much worse than they were a year ago. Maybe even 6 months. But because her mind is still there except for a bit of memory loss, I just don’t have the heart to put her in assisted living now. But the toll it is taking on me is great. I have a little help each day but I am increasingly becoming resentful. We are afraid to leave her to go out to dinner and she gets very upset if we have what she calls a “sitter” and then she pouts for days after. She is generally fine and agreeable but she definitely does not like being told she is incapable of staying alone.

Honestly I just don’t want to do this anymore and want my life back, but there is not enough of a reason to send her away and have her costs shoot up. Other than I am being selfish.

I am just venting. I don’t really have any questions.

[Anonymous]

I just don’t have the heart to put her in assisted living now. But the toll it is taking on me is great.

Advance the mindset that AS will be ok. It will.

[Anonymous]

Op, you have an off-balance idea of what's "selfish." It's not healthy for your marriage. I don't see if you have kids or not.

[Anonymous]

If her mind is fine, I'm not sure why you don't just leave her alone for a few hours, if that's what she wants. The risk is hers to take. If she falls, she falls. She may have to wait until you get home, or she may even really hurt herself. But it's not okay for you to make her live a life in a way she doesn't want to just because you have so much anxiety. Did you force her to move in with you, too? Convince her it wasn't safe to live on her own?

[Anonymous]

You need to check what the criteria is for Assisted Living - if she can't walk safely and take meds on her own, they may recommend Skilled Nursing which is very expensive.

[Anonymous]

I think you need to reframe your thinking. Resenment and burnout can turn into abuse. A friend of mine used to a geriatric social worker and she said everyone glorifies having the elder live with you as the most humane choice and nobody talks about how many good people can turn abusive because they took on the impossible. You hear about staff not being attentive enough at residential, but there are plenty of highly alarming things that happen when in the home when loved ones are pushed to their limit. Even when loved ones don't cross a line, there is the reality of a falls while you are at work, etc.

So, I would explore assisted living and visit often. You want to be your best self when you visit and visit just enough that you won't feel resentful. Expect there to be adjustment issues. Know it's good for her brain to make friends if still capable and join social activities.

[Anonymous]

Anonymous wrote:If her mind is fine, I'm not sure why you don't just leave her alone for a few hours, if that's what she wants. The risk is hers to take. If she falls, she falls. She may have to wait until you get home, or she may even really hurt herself. But it's not okay for you to make her live a life in a way she doesn't want to just because you have so much anxiety. Did you force her to move in with you, too? Convince her it wasn't safe to live on her own?

It's not safe for her to live on her own.

This whole response gave my the creeps. Clearly, the mom's mind is NOT fine-if it was, she'd understand why she needs help when alone. No, you shouldn't just leave them to fall all over.

OP, I hear you and understand and am living a similar experience (I don't live with, but close by, the folks). I actually just came home from picking up a parent off the floor, thankfully unhurt (them AND me) and other parent was there to call me. I think you need to get more help if possible-respite is needed for you the caregiver. Tell mom 'I need this for MY health too'. If she is upset-so be it, but you need to be able to go out of the home occasionally and not have to constantly worry that you will come home to a fall or even a tragedy.

[Anonymous]

She's well into dementia, OP. You've got to start looking NOW because things can progress quickly at this point (or stagnate for years, but since you're suffering, you don't want to be stuck in limbo either).

Looking means:
1. Extracting opinions on her decline timeline from her doctor. Geriatrist? Neurologist? Her PCP won't know. For example, if she has vascular dementia, they can do brain MRIs to assess the damage and see how it evolves. What meds can she take to stave off her cognitive decline?
2. Visit memory care, not assisted living. By the time she needs to move, it will be for memory care.
3. Research home aides, you might want the support before you make a choice on the home.

[Anonymous]

Anonymous wrote:My mother has lived with us for two years. She is pretty good but cannot live alone (can’t take her meds properly, can’t drive, can’t handle finances anymore, has falling a few times but not gotten hurt). Her memory is impaired in terms of things like asking the same question a bunch of times but average person probably wouldn’t notice an issue.

Here is the issue: I see how things are incrementally getting worse. Her balance, memory, etc. are much worse than they were a year ago. Maybe even 6 months. But because her mind is still there except for a bit of memory loss, I just don’t have the heart to put her in assisted living now. But the toll it is taking on me is great. I have a little help each day but I am increasingly becoming resentful. We are afraid to leave her to go out to dinner and she gets very upset if we have what she calls a “sitter” and then she pouts for days after. She is generally fine and agreeable but she definitely does not like being told she is incapable of staying alone.

Honestly I just don’t want to do this anymore and want my life back, but there is not enough of a reason to send her away and have her costs shoot up. Other than I am being selfish.

I am just venting. I don’t really have any questions.

Your denial and ignorance will lead you to disaster, OP. No, your mother is not fine. She has dementia: this is evident by her asking the same question repeatedly, and her emotional dysregulation and anxiety when she's left with a stranger, or things don't go her way. You need get her a formal diagnosis to see which type it is and what meds she can take. You need to consult experts in eldercare to figure out what options of care she has given she will continue to decline, and how much it's likely to cost her (and possibly you). If she has a very low income, she can go into a government home. You won't have to pay anything, except extras to make her life easier (which can add up, of course).

Start now.

[Anonymous]

I think her dementia is probably worse than you realize and that's why she has so much anxiety.

I would schedule your cleaning lady to be there, and then you go out to lunch nearby. Not that the cleaning lady will pick her up (not safe for an untrained person to do), but the cleaning lady will call you. Or you go on a date after she's gone to bed for the night.

[Anonymous]

As someone who made all the wrong choices and moved my mom just a little too late to independent living (when she needed assisted) and to assisted living (when she needed memory care), please start looking for an appropriate place for her now. In my moms case she never really settled in or fit in to any of the places she moved until memory care. She was always incredibly anxious around the other seniors because she could tell she was struggling and was trying to hide her limitations.

In my limited experience the elderly seem to get really clingy and scared when they realize they’re slipping and they also seem to put their own needs first and not recognize the burden they’re putting on their loved ones. And it is a burden.

Don’t look at assisted living as a negative. Reframe it as a positive. She’ll be around people her own age, she’ll be able to do activities and have meals and maybe even make some friends and have a little fun. It doesn’t sound like she’s quite ready for memory care but assisted living can help with mobility issues and administer medications. And some places have bridge programs where they identify those with cognitive decline and give them more attention and assistance.

The other alternative would be to hire a helper every night or a few times a week for four hours who just comes no matter what you are doing. That way when you do want to go out she doesn’t have a sitter, just the person who is always there on that day. But I think a facility would be better for both of you.

[Anonymous]

Anonymous wrote:

Anonymous wrote:My mother has lived with us for two years. She is pretty good but cannot live alone (can’t take her meds properly, can’t drive, can’t handle finances anymore, has falling a few times but not gotten hurt). Her memory is impaired in terms of things like asking the same question a bunch of times but average person probably wouldn’t notice an issue.

Here is the issue: I see how things are incrementally getting worse. Her balance, memory, etc. are much worse than they were a year ago. Maybe even 6 months. But because her mind is still there except for a bit of memory loss, I just don’t have the heart to put her in assisted living now. But the toll it is taking on me is great. I have a little help each day but I am increasingly becoming resentful. We are afraid to leave her to go out to dinner and she gets very upset if we have what she calls a “sitter” and then she pouts for days after. She is generally fine and agreeable but she definitely does not like being told she is incapable of staying alone.

Honestly I just don’t want to do this anymore and want my life back, but there is not enough of a reason to send her away and have her costs shoot up. Other than I am being selfish.

I am just venting. I don’t really have any questions.

Your denial and ignorance will lead you to disaster, OP. No, your mother is not fine. She has dementia: this is evident by her asking the same question repeatedly, and her emotional dysregulation and anxiety when she's left with a stranger, or things don't go her way. You need get her a formal diagnosis to see which type it is and what meds she can take. You need to consult experts in eldercare to figure out what options of care she has given she will continue to decline, and how much it's likely to cost her (and possibly you). If she has a very low income, she can go into a government home. You won't have to pay anything, except extras to make her life easier (which can add up, of course).

Start now.

NP. What is meant here by a government home? Link or example?

[Anonymous]

Anonymous wrote:As someone who made all the wrong choices and moved my mom just a little too late to independent living (when she needed assisted) and to assisted living (when she needed memory care), please start looking for an appropriate place for her now. In my moms case she never really settled in or fit in to any of the places she moved until memory care. She was always incredibly anxious around the other seniors because she could tell she was struggling and was trying to hide her limitations.

In my limited experience the elderly seem to get really clingy and scared when they realize they’re slipping and they also seem to put their own needs first and not recognize the burden they’re putting on their loved ones. And it is a burden.

Don’t look at assisted living as a negative. Reframe it as a positive. She’ll be around people her own age, she’ll be able to do activities and have meals and maybe even make some friends and have a little fun. It doesn’t sound like she’s quite ready for memory care but assisted living can help with mobility issues and administer medications. And some places have bridge programs where they identify those with cognitive decline and give them more attention and assistance.

The other alternative would be to hire a helper every night or a few times a week for four hours who just comes no matter what you are doing. That way when you do want to go out she doesn’t have a sitter, just the person who is always there on that day. But I think a facility would be better for both of you.

This is good advice. My mom who has Alzheimer’s started becoming afraid of socializing. For in-home care, we tested out different options to see which scenarios my mom was most comfortable with: she’s fine with a female as long as my dad is not there (if he’s there with the female caregiver, she gets catty), the upper limit of time before she gets anxious is 6 hours, she needs 2 caregivers for bathing, that sort of thing. You might want to experiment with what scenario makes your mom comfortable—otherwise you are probably going to have a fight on your hands imo. It’s hard—make sure you do things to keep yourself sane. A friend of mine in the care industry includes self-care as an essential part of her schedule, and I think we all need to do the same.

[Anonymous]

Anonymous wrote:I think you need to reframe your thinking. Resenment and burnout can turn into abuse. A friend of mine used to a geriatric social worker and she said everyone glorifies having the elder live with you as the most humane choice and nobody talks about how many good people can turn abusive because they took on the impossible. You hear about staff not being attentive enough at residential, but there are plenty of highly alarming things that happen when in the home when loved ones are pushed to their limit. Even when loved ones don't cross a line, there is the reality of a falls while you are at work, etc.

So, I would explore assisted living and visit often. You want to be your best self when you visit and visit just enough that you won't feel resentful. Expect there to be adjustment issues. Know it's good for her brain to make friends if still capable and join social activities.

Super important. My mom lived on her own for 14 months and the transition to a memory care program - we also didn't realize that's where she truly was in her abilities - was a a god send for her.

[Anonymous]

You could pick up and move 800 miles away like my sister is doing.