Mum was sectioned but now scared of future

[Jaded'n'faded]

think my step-siblings want mum in care (I just get the impression) and my siblings are adamant she comes back home

It's nothing to do with your step-siblings though I can understand them wanting that because it would make their father's life easier.

As for your siblings, that's very easy for them to say because they are not living with her or looking after her. If you suggested your mum would have to live with one of them due to the conflict at home, I expect they would soon decide she'd be better in a care home.

I hope you are reassured about not having to sell the house

 

[Imogenlily]

You are in a difficult position there - there is no way of pleasing everyone.
I am worried about you, though.
You shouldering most of the caring, are exhausted and worried that you wont be able to cope if she comes home.
You are important too.
Ive been there, reached carer burnout and got very close to taking my own life.
Please dont let it get that far - listen to what your body is saying to you.


This isnt true.
The house will be disregarded in the financial assessment and only your mums money will be counted (not the rest of the familys money). If she doesnt have enough the Local Authority will assist with the fees

Thanks for replying. I do feel between a rock and a hard place. I promised mum I wouldn't put her in a care home and I feel I'd be abandoning her, which is her greatest fear after my sister's death. I do understand it from my step-dad/step-sister's POV too though. Everything is just very unfair.
I am struggling with juggling everything. I'm a people pleaser and want everyone happy, so this hurts. I am having counseling which does help a lot. But it's just the daily grind, the worry that things will slip back when she returns. I need firm boundaries, including respite at times. My family is aware of this and want me to take care of myself - it's just everyone's got very strong opinions here and I think there is some denial on *both* sides of the realities.
Thanks for your concern. I really appreciate it. I know I need to take care of myself more - putting on your own oxygen mask etc.

 

[Imogenlily]

It's nothing to do with your step-siblings though I can understand them wanting that because it would make their father's life easier.

As for your siblings, that's very easy for them to say because they are not living with her or looking after her. If you suggested your mum would have to live with one of them due to the conflict at home, I expect they would soon decide she'd be better in a care home.

I hope you are reassured about not having to sell the house

Thanks for your reply. It's very easy for everyone to have an opinion when none of them are doing the day-to-day care. I do appreciate my step-siblings worries but I notice they aren't knocking the door down offering their homes or to care for him. They're not bad people, but they're also not overly close with my stepdad (he can be a difficult guy at times)

My sibling is trying to support me a lot and be on my side, but it's just a mindset that mum has to come back home. Which I also understand. They aren't opposed to discussing care homes further down the road but not yet. I feel a huge obligation to my mum. She lost my sister seven years ago and it broke her (it broke me too) and I feel I was betraying and abandoning her. I know I wouldn't be but I'm a sponge for guilt.

Also, in the psychiatrist's and nurses views, Mum shouldn't be in a care home yet. She's semi-independent when she wants to be - I think she gets in certain patterns with me. The psycharistri is also worried if she goes into a care home she'll loose those skills she still has. So lots of pressure from all angles! I've noticed mum is quite negative about everything (eating, my stepdad etc) but isn't like that around staff or my sibling...
The info on the house was very appreciated and has given me hope! So thank you for that!

 

[canary]

I promised mum I wouldn't put her in a care home and I feel I'd be abandoning her, which is her greatest fear after my sister's death.

I have heard this so many times on here. It is a promise that usually cannot be kept and I think it causes more anguish than anything else on these boards.
My mum tried to make me promise not to "put her in a home", but I didnt - I promised that I would do everything I could to do what would be the very best for her.
Eventually mum had no option than to move into a care home, although she had fought it tooth and nail. Once she settled, though, she thrived. She made friends, joined in with activities and was happy. Once near the end, she told me "everybody here loves me", and she was right - they did.

You will not be abandoning her if she moves into a care/nursing home. You will be just getting others to do the hard, hands-on stuff. You will still make sure that she is being looked after, watch out for things that people need to be aware of, you will be her advocate and her voice once she has none. You can go back to being her grandaughter again and maybe she will be up to being taken out for tea and cake somewhere at times.

 

[Imogenlily]

You are in a difficult position there - there is no way of pleasing everyone.
I am worried about you, though.
You shouldering most of the caring, are exhausted and worried that you wont be able to cope if she comes home.
You are important too.
Ive been there, reached carer burnout and got very close to taking my own life.
Please dont let it get that far - listen to what your body is saying to you.


This isnt true.
The house will be disregarded in the financial assessment and only your mums money will be counted (not the rest of the familys money). If she doesnt have enough the Local Authority will assist with the fees

Thanks for your reply and the info, I really appreciate it. At least that's calmed me a bit. My family do worry about my coping with everything but it just doesn't help when everyone has a different demand about what to do. I get their PoVs, I really do, but I'm not a miracle worker. Mum's perhaps not quite at the stage to be in a care home (the psycharistrist doesn't think so either) but I know we'll probably end up in that direction, especially if the delusions persist. I just want to see if - with proper support in place (which I don't have currently) if she can stay home at least a little while longer.
I also have CFS so I do get very exhausted, but I am having counseling (I've had it for over two years and my counsellor's a god send) which is helping a lot and I'm using this time to force myself to do some self care which went out the window. I went through burnout before with my mum when she had extreme depression and I do *not* want to go back there - it caused my CFS so I completely understand what you're saying.
Thank you for your support and the information.

 

[Imogenlily]

I have heard this so many times on here. It is a promise that usually cannot be kept and I think it causes more anguish than anything else on these boards.
My mum tried to make me promise not to "put her in a home", but I didnt - I promised that I would do everything I could to do what would be the very best for her.
Eventually mum had no option than to move into a care home, although she had fought it tooth and nail. Once she settled, though, she thrived. She made friends, joined in with activities and was happy. Once near the end, she told me "everybody here loves me", and she was right - they did.

You will not be abandoning her if she moves into a care/nursing home. You will be just getting others to do the hard, hands-on stuff. You will still make sure that she is being looked after, watch out for things that people need to be aware of, you will be her advocate and her voice once she has none. You can go back to being her grandaughter again and maybe she will be up to being taken out for tea and cake somewhere at times.

Logically, I know all of this, but emotionally, it's a very different story. It's something I'm trying to reconcile with my counseling. I guilt very easily. I understand that going into a home must be terrifying for them. Mum has made her opinions (long before dementia) very clear and it involved she'd 'take matters into her own hands' - I don't think that's an issue now, sadly.
I do realise that at some point we are heading towards a care home - even my sibling accepts this, but I think we both want to try to see, with support, if she can come home at least for a while. I'm probably being naive about things, but I just want to hope. I would've thought honestly that due to safeguarding the matter wouldn't be left to us. A small part of me secretly wishes they had the final say, not me. It's a horrible choice.
I'd hope she would flourish in a care home, but I have my doubts. She's become very negative and pessimistic since my sister's death. She doesn't want to be around people and always thinks they're patronising her - but on the plus side she does like the staff at the hospital, and they like her, but she detests being there - the boredom, the food etc etc (she's given up all her hobbies and interests even reading so it's hard to find something she's interested in) but I do hear what you and everyone is saying, that care might be the only viable option. I just wish the decision didn't rest on MY shoulders. The other issue is that my sibling also has LPoA along with me - we agree on pretty much everything - but if they want mum to come home and I disagreed...I don't know what would happen. I don't want to upset them. Their my only family and I feel like I was betraying them and mum (irrational I know) but thanks for your support

 

[Jaded'n'faded]

Awww @Imogenlily , you sound such a nice person yet you're stuck in the middle of this trying to keep everyone happy! Please talk to your counsellor about being 'a people pleaser' and see if you can find some ways to stop! It's never possible to please everyone and if you base your own happiness on how successful you are, you're going to come unstuck.

Bear in mind that your sister and even the psychiatrist and nurses have not experienced your mum at her most difficult, so when they say 'she's not ready for a care home' you have to take it with a pinch of salt. If they saw the behaviours you have seen and had to be on the receiving end of the anger and non-compliance 24/7 they would view the situation very differently.

Re. your promise, you made that promise to your mum when she was well and I think it would be true to say you wouldn't move her to a care home if she was well now. But she isn't well, she now has a terminal illness and now needs far more care than anyone envisaged. Dementia changes everything.

My mother was not one of those who flourished in a care home. She remained angry and anti-social for 3 years. But she would have been like that wherever she was. The important thing was that she was clean, well-fed and properly looked after. Making her happy would have been nice but it simply wasn't possible and I had to accept that. Dementia is a terrible thing.

 

[Violet Jane]

It's a very, very tricky situation. I'm afraid that it might be very difficult for you to put boundaries in place if you are living with your mother and stepfather. There is not only the dynamic between you and your mother but between your mother and your stepfather. Is the hospital fully aware of the latter?

It's even more difficult if the PWD is able to manage his/her own personal care, is mobile and is generally healthy i.e. when the problems are largely behavioural. I assume that this is the situation with your mother and is why the hospital thinks that she's not ready for a care home. Really, your mother and stepfather should probably live apart but there appears to be nowhere for him to go. There is a conflict of interest here in that if he moved out and your mother moved into a care home you might have to leave your mother's house so that it could be sold to pay for her care.

I think that I would push for your mother to stay in hospital or an assessment unit for quite a while longer to see if her symptoms can be brought under control. If she's discharged home prematurely it's quite likely that there will be another incident before long and you will be back at square one.

 

[Imogenlily]

It's a very, very tricky situation. I'm afraid that it might be very difficult for you to put boundaries in place if you are living with your mother and stepfather. There is not only the dynamic between you and your mother but between your mother and your stepfather. Is the hospital fully aware of the latter?

It's even more difficult if the PWD is able to manage his/her own personal care, is mobile and is generally healthy i.e. when the problems are largely behavioural. I assume that this is the situation with your mother and is why the hospital thinks that she's not ready for a care home. Really, your mother and stepfather should probably live apart but there appears to be nowhere for him to go. There is a conflict of interest here in that if he moved out and your mother moved into a care home you might have to leave your mother's house so that it could be sold to pay for her care.

I think that I would push for your mother to stay in hospital or an assessment unit for quite a while longer to see if her symptoms can be brought under control. If she's discharged home prematurely it's quite likely that there will be another incident before long and you will be back at square one.

Thanks for your reply, that's what worries me the most, another incident. It worries my brother too, but we just don't know what to do. I don't think my step-sister or step-dad have thought through things - I know separating them in the same house isn't ideal (he currently has a lock but forgets to use it) but nothing about the situation is easy and I'm the one who's ultimately going to have to deal with them, not her.
There are some pretty unhealthy dynamics between mum and my stepdad over things that have never been resolved. Before the dementia got bad, mum came very close to divorcing him several times (in lockdown) but always backed out at the last moment.
With my mum she's sort of in between - she struggles to do things - for example, she has to sit down or lean against a wall to dress etc. She can't walk far and very little balance. She also wasn't washing etc at home. She's chronically exhausted and there's a lot of apathy so it's hard to know what she can do and what she doesn't want to do. Before the hospital it was very difficult to get her to engage in anything. She refused to see friends or go to support groups, has no hobbies any more etc. I wonder if she plays up a bit for me unconsciously because she *is* apparently doing most of those in the hospital (covid isn't helping her eat etc though). It's been a real struggle to try to get her to eat etc. Maybe it's because I'm her child not a nurse?

I'm hoping they do keep her in for a while longer, and I feel terrible about that. I don't want to put her in care home (I know there are lots of good ones but I feel like I'd be betraying her) at least not yet. So we're stuck. My phone calls with her are stressful. She's almost always angry with my stepdad (her delusions are ongoing) or upset and always desperate to come home. I don't know what to say. I feel horrible about her being there, but right now I think she needs to be there. I just wish I didn't feel like a failure.
I worry about her coming home. It's difficult to get her to engage in virtually anything (apathy and exhaustion) but I'm going to try to seek out some dementia friendly things when she's back.

 

[Jaded'n'faded]

As her delusions about your step-dad are ongoing, it's just not safe for her to return home with him there - for either of them or you stuck in the middle. I think at the least your mum needs a period away until this phase passes or can be controlled with meds. Until then she really shouldn't be going home.