Dealing with a family member with dementia

imtoooldforthis

imtoooldforthis

imtoooldforthis

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A rare serious post from me

I have a grandmother in a care home who is 98 years old and suffering from early(ish) stages of dementia.

She is not happy in the care home having been there for almost two years now, she cannot move or care for herself and basically sits in her chair or bed everyday like a beached whale watching TV. It’s a pretty bleak existence for her regardless of how good the care home is (12k a month !!!!)

Now the problem is that due to the gradually worsening dementia she phones myself, my sister and more importantly my mother countless times a day to basically tell us all she hates her life and wants to die.

This isn’t maybe once a day, yesterday she called my mother 37 times, my sister 18 times and myself 12 times. If no one answers she just keeps phoning and phoning and leaving messages whilst being unable to understand people have jobs and their own lives to live.

My own mother who is quite old herself (mid 70s) is basically having a nervous breakdown over this, the constant relentless grind of having someone phone endlessly every single day telling you they want to die and hate life is ruining her own mental health.

At this point I just want to remove my grandmothers phone but it seems so cruel giving her no way to communicate apart from us phoning her (via the care home line, not her private line in the care home). She gets visited once a week in person by all of us (separately) but it’s not enough and she seems to think we should all be there 24/7 caring for her which piles on the guilt even further.

If it was just me and my sister having to deal with this it wouldn’t be a big deal as we are both relatively young but it’s ruining our mums life and tipping her towards some kind of mental breakdown if it continues like this, on top of this she is in the middle of dealing with breast cancer (something my grandmother isn’t aware of for her own sanity).

What would you do ? Do you think removing the phone is wrong given her age and dementia or do you think it’s morally ok to do within this situation ?
 
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I've not been through this before so my advice is not borne from experience. Firstly I would discuss the problem with the care home and see if they have any advice. But on the assumption they can't help then, if it was me, I would advise my mum to keep the phone on silent and turn off voicemail. Try to explain to your grandmother that the family will call her the same time every day and ignore the calls until that time. Then phone her once a day as promised. Having dementia she might not remember or understand, so see if you can get put up a little note in her room to remind her.

Sorry, none of that is likely to be practical, but it's what I think I would try.
 
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imtoooldforthis said:
A rare serious thread from me

I have a grandmother in a care home who is 98 years old and suffering from early(ish) stages of dementia.

She is not happy in the care home having been there for almost two years now, she cannot move or care for herself and basically sits in her chair or bed everyday like a beached whale watching TV. It’s a pretty bleak existence for her regardless of how good the care home is (12k a month !!!!)

Now the problem is that due to the gradually worsening dementia she phones myself, my sister and more importantly my mother countless times a day to basically tell us all she hates her life and wants to die.

This isn’t maybe once a day, yesterday she called my mother 37 times, my sister 18 times and myself 12 times. If no one answers she just keeps phoning and phoning and leaving messages whilst being unable to understand people have jobs and their own lives to live.

My own mother who is quite old herself (mid 70s) is basically having a nervous breakdown over this, the constant relentless grind of having someone phone endlessly every single day telling you they want to die and hate life is ruining her own mental health.

At this point I just want to remove my grandmothers phone but it seems so cruel giving her no way to communicate apart from us phoning her (via the care home line, not her private line in the care home). She gets visited once a week in person by all of us (separately) but it’s not enough and she seems to think we should all be there 24/7 caring for her which piles on the guilt even further.

If it was just me and my sister having to deal with this it wouldn’t be a big deal as we are both relatively young but it’s ruining our mums life and tipping her towards some kind of mental breakdown if it continues like this, on top of this she is in the middle of dealing with breast cancer (something my grandmother isn’t aware of for her own sanity).

What would you do ? Do you think removing the phone is wrong given her age and dementia or do you think it’s morally ok to do within this situation ?
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Sorry you're going through this. We had the same problem with my mother before she died last December.

I can only really say that at this stage prioritising your Mothers health is what I would choose to do. That said, if you took the mobile away there is no reason to suspect she'd stop phoning, just from the care home line or private line perhaps? She might not be capable of doing that though, and if it brings your mother some peace it is what I would be doing.

It's a horrible, awful disease. Thoughts are with you and your family.
 
Does the care home have sufficient staffing to provide activities for the residents to engage with and keep them distracted ? If not, which is often the case, then you'll end up with situations like this where the person feels socially isolated and anxious. What you're experiencing is a common scenario. Don't have much more advice to give, but speak with the care home re: activities. And also your grandmother's GP, just in case she would benefit from some medication to alleviate any underlying anxiety/depression/behavioural issues relating to her dementia. Beyond that, it's just a case of trying to be there for her, and sharing the workload amongst all family members & friends.
 
I don't really have anything to add other than it's a terribly depressing read and brings back some awful memories.

I watched my grandfather go through this and I was only young, my mom was the only person who visited him on a regular basis and sometimes that meant taking me along. He was completely gone shortly after being diagnosed and I distinctly remember him just sitting there making pig noises one time when I visited.

The cost of care is also disgusting for the service they receive.
 
200sols said:
Wont help people with dementia. We need a charter to sign before you end up like a vegetable in a home.
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Can't the law be adjusted so people can sign agreements while in sound mind that in the event of getting dementia they want x to happen ?

As for the op's Gran there's not much you can do really apart from remove the phone or try to organise with the care home suitable times where she can have access to the phone (even with the prices you pay for care, this might not be seen as a reasonable request), otherwise it's a case of just dealing with it, there's little can be done when it comes to dementia and what you do or don't is quickly forgotten anyway
 
depeneding how the conversations go, set up a voice assistant with your mums voice and have her calls diverted to that possibly?
kind of depends how bad the dementia is
 
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Minusorange said:
Can't the law be adjusted so people can sign agreements while in sound mind that in the event of getting dementia they want x to happen ?
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Doubtful, the proposed law is only useful for people with a terminal diagnosis and its been pushed back anyway so it looks unlikely to happen anytime soon.
 
I don't understand the financial side of things as I was not power of attorney with regard to my grandma, but I'm fairly certain the state paid for her care? It was pretty rough to be fair, and it was horrible to watch her decline, even from a distance. Can't imagine what it was like for my aunt, who was there every day.

Sorry, I don't have any real advice to offer. It really is a horrible disease.
 
She must be very bored in the care home, so is there anything either the staff or you can think of that would entertain her better?

Perhaps getting her in a wheelchair and taking her outside into a nice garden might lift her spirits?
 
Venali said:
I don't understand the financial side of things as I was not power of attorney with regard to my grandma, but I'm fairly certain the state paid for her care? It was pretty rough to be fair, and it was horrible to watch her decline, even from a distance. Can't imagine what it was like for my aunt, who was there every day.

Sorry, I don't have any real advice to offer. It really is a horrible disease.
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The state only pays for the care home if she had minimal assets left. A quick search suggests that the current figure is £23,250 in savings.
 
radderfire said:
She must be very bored in the care home, so is there anything either the staff or you can think of that would entertain her better?

Perhaps getting her in a wheelchair and taking her outside into a nice garden might lift her spirits?
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^This.

Not wishing to point the finger at anyone, but a lot of the responses seem to be missing the point. The issue isn't how you stop grandma getting access to a phone to bother you, it's how you make sure she is kept happy so she doesn't feel bored and lonely. Especially if she is staying in an expensive care home.

Maybe this ship has sailed, but getting one to one care from a live in carer can be a much better option than paying a fortune to a care home for someone to just sit in their room staring at the TV.
 
It is very hard to deal with a decline like this and its cruel on everyone, I would take the most pragmatic member of the family and have them manage the telephone calls. Unless each call is vital then its not any positive to repeat a negative, have 1 person manage this is far better idea. Of course continue the personal visits which do matter far more.


LostCorpse said:
depeneding how the conversations go, set up a voice assistant with your mums voice and have her calls diverted to that possibly?
kind of depends how bad the dementia is
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Some kind of technology should be able to assist with this I agree. A text reader that can sit on a chest of drawers and read out family texting would make it all more manageable without seeming to cut off communication exactly. A person with dementia cannot make these decisions or manage their normal response it does take a lot to make up for that loss in sensation, memory they will be experiencing; it is a very cruel thing to go through. Taking action to manage and control the sheer amount of calls is the best way.
 
A quick search suggests that the current figure is £23,250 in savings.
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That's £50K in Wales.

Sounds like she's yet to loose capacity. Do you have Lasting Powers of Attorney in place for when she does?
Council care is capped and requires an assessment before it's 'allowed'.

On a personal note, and sorry if this is hard to accept, as the Dementia progresses there will be less and less of the 'person' left, so say your 'goodbyes' soon. We used to take my mum 'out', but she's now agoraphobic so even that avenue to lift her spirits is not open to us.
 
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