Inmate in mums prison

[Pete1]

Hi @annielou, sadly you will be going through this repeatedly on a loop with Mum. Most of Mum's generation don't want help or 'strangers coming into my home' and are very resistant, so the Social Worker should be well experienced in seeing through this, and the denial of any symptoms. I would say in my experience with Mum they were not terribly helpful as we were self-funding, so I ended up commissioning home care myself, which increased over time and eventually transitioned to residential care (primarily due to the fear and anxiety of being on her own and not being familiar with her surroundings - she suffered from sun-downing). But if your Mum isn't self funding they should undertake an assessment of needs where they will ask a number of questions to determine care needs. However, it is likely to be tricky as your Mum will have a very different view of her own capabilities and will likely have forgotten yesterday's discussions so it is likely you may have to go through that again after the Social Worker has left (sorry!). I think most telling thing you have said is that Mum gets frightened being on her own at night and that really does need to be discussed as that is key to Mum's independent living - as you rightly point out carers coming in to deliver personal care and other domestic help will not address this issue (I'm assuming the ongoing treatment hasn't improved this situation) and it sounds as though Mum is potentially quite vulnerable being on her own at night if you are not there to assist and calm her. Let us know how it goes. All the best for today.

 

[Sarasa]

Hope the visit goes well. Can you slip the social worker a bullet point list of your concerns and explain that you cannot stay with your mother indefinitely? My mumwas self funding so we didn’t have much contact with social workers but my understanding is they’d try your mum with a few visits a day at first before they’d suggest a home. However it seems your mum does need care 24/7 now.

 

[Annakey]

I do think it`s much more difficult to abandon what was your life for a sick parent.

Those of us caring for partners/spouses are continuing a life already being lived but give up on their plans, hopes and dreams.

Those caring for parents are juggling lives under different roofs.

 

[jugglingmum]

I wrote out a list when mum had a review with a SW and handed it to her. However mum is very deaf so it was fairly easy to talk to SW without her realising what I was saying.

Mum also after a few minutes starts repeating herself and had done a few actions which she was aware of and didn't know why. In my case an SW assessment was required to say she needed support to move into extra care, but mum was self funding.

From my reading on DTP if you aren't self funding SS will try to do as little as possible, and if family are supporting they will use that to justify that they don't need to do anything, so you need to be very blunt about not coping and not being able to support your mum.

State that she is a vulnerable adult, they (Social Services) are responsible and that you can no longer provide the level of support/care you are due to your own health. You need to lay it on thick to get the result from SS you want, and hope that mum doesn't remember afterwards.

If your mum can't be left alone at night you need to ask for emergency respite now (you may not be at breaking point yet but you soon will be based on your posts)

 

[annielou]

Thank you for your replies. Unfortunately I cant get to write things down because mum wants to know what I'm doing and gets mad if not solely focusing on her.
Even textin or look at my phone i have to do Sureptisously. She just came looking for me because I was taking too long making tea (i was looking on here)
I usually come on here for a bit when mum goes to bed but as she is up and down before settles I'm usually het up n shattered and cant stay awake long as I know she'll be up a few times in the night and awake early talking to herself and checking things so I'm usually awake from half five six oclock but cant do much as she pops in and out and if she saw me writing something would demand ti know what and start an argument.
She keeps forgetting the woman is coming but then when she does she keeps saying I'm not to tell them anything or she wont talk to me again. She doesnt want people in her house noseying. So I can see this is going to go well.NOT

 

[Sarasa]

Can you text the social worker a link to this thread? As things are you are not going to be able to carry on much longer and SW need to be made very aware of this

 

[Palerider]

Thank you for your replies. Unfortunately I cant get to write things down because mum wants to know what I'm doing and gets mad if not solely focusing on her.
Even textin or look at my phone i have to do Sureptisously. She just came looking for me because I was taking too long making tea (i was looking on here)
I usually come on here for a bit when mum goes to bed but as she is up and down before settles I'm usually het up n shattered and cant stay awake long as I know she'll be up a few times in the night and awake early talking to herself and checking things so I'm usually awake from half five six oclock but cant do much as she pops in and out and if she saw me writing something would demand ti know what and start an argument.
She keeps forgetting the woman is coming but then when she does she keeps saying I'm not to tell them anything or she wont talk to me again. She doesnt want people in her house noseying. So I can see this is going to go well.NOT

It might not go well @annielou , but the SW won't press matters if your mum gets upset, she'll just try to assess things. Don't let it put you off. It was obvious to the SW on their last assessment here two weeks ago that mum, depsite trying to hide things was struggling on her own and there were new concerns.

Edited: because I don't seem to be able to spell

 

[annielou]

The social workers visit went ok but as expected they cant offer any night time care only short daytime visits to help mum with prepping for shower, and visits to remind her to eat and take medication.
She also offered two weeks respite if mum agreed to go. Which was something I didn't expect. Although mum wasn't really keen.
SW spoke to mum first about why came, because sister and I had said she'd agreed to seeing her because we were concerned mum not managing on own and she asked mum few things about how she was coping and why thought I was staying and things like that.
As I thought mum was saying things like she was ok and could manage but also said how me and hubby are there a lot and look after her and how lovely we are. A lot of what she told sw about how behaved was wrong, although to mum they may not have seemed so ,and also she was trying to be ok as doesnt want to admit anything wrong to people.
SW also spoke to me about how long I'd stayed at mums and why. Asked mum and me questions about what mum could and couldn't do. Talked about her not recognising house, thinking other people there like mum n brothers and not recognising me and hubby a few times lately and about how mum felt on own.
We talked about things mum does on night, constantly asking if doors locked and heating off and how if I wasn't here she would unlock the doors and go out to check they locked and tries turn heating off on boiler but I stop her. Wakes in night and looks for me or calls for me and in early morning wakes and cant settle checking things talking to herself and looking for things and those were times she rang me either at bedtime or early morning in panics.
SW was really nice not pushy with mum but honest and like memory nurse did in her visit tried quite a lot to point out to mum that I had given up a lot to be with her all the time and care for her and that wasn't fair. She said I couldn't do it much longer, that it was too much for me and could see I was struggling. That I needed to step away but that she thought things would get to a crisis pretty soon if I wasnt there. She understood how hard it would be for me to go home and not stay or visit every day and turn phone off to mums calls but I should probably do it.
She said honestly that they cant just put mum in a home and couldn't provide overnight care but she could see why I thought it was needed. That unfortunately they tend to have to wait for a crisis before they can offer more than just carers coming in daytime.
She said she didn't think mum was safe on her own and that she had problems with sequencing and processing and was repetitive.
She mentioned day care centres for mum and carers coming in for short time to help her but mum wasnt fond of either.
She said alternatives were mum stayed on own and allowed carers visit in day, I stayed living with mum, or I had mum to live at mine. She didn't think staying at mine was good idea as could see why i was worried about mum with stairs, she also didn't think I should or could live with mum long term. And also said that carers coming in day probably weren't enough but all she could offer.
Mum said didnt want me giving things up to live with her and SW said thats what I was doing. Mum still didn't really want carers though. And i'm not sure I could leave mum to carers in day and alone at night.
SW said we could have two weeks respite which she encouraged us use but said, but then mum would come back home and we'd be in same situation but it would give us breathing space and maybe allow me to step back and try mum staying on own.
Told me if mum does agree to go to look for one with emi section for memory problems and warned me mum could just decide to leave if didnt like it.
We have to find home ourselves, she suggested internet search for local care homes and check ratings and then contact them see if have emi respite and say mum la funded and ask what top up fees are as lot do av pay a bit of a top up. Then arrange to go have a look see if we liked it. She mentioned one near mum that had few lof her ladies in and she thought nice.
Tried to encourage mum it would be little break, might like mixing with others, or can go in own room if not. She'd be safe and wouldn't have worry about if locked up etc and I could go visit like normal and she would go see her too. And i could have bit of a break and a sleep without having worry if mum safe on own. She'd also be able to see what like in home in case went in one later.
Mum wasnt fond but afterwards when we talked on own later in the afternoon she came round to it a bit and said we could look. Of course then she said later didnt want to go in one.
Sw also suggested I register mum on police website (herbert protocol) in case does wander out when I'm not here and police pick her up so they know to contact me and know mums situation.
She suggested we apply for AA see if get anything because will probably have pay a little towards mums care as no free care really nowadays. Told us we need complete financial assessment so sister did that this afternoon.
She is going to do care plan and send it us and then if want to take up any of offers we can. She is also going to refer me for carers assessment and to a support group.
When she was leaving she said she didnt think we could go on much longer as were and I really needed to try going home and encourage mum to try respite. I said she might agree and then change mind because she does and which bit do I listen to. She said she had noticed that and understood it was hard but I really needed to go home.
I had thought they would encourage me to carry on caring for mum and was quite surprised how often she said I needed step back and it wasnt good for me or fair to me to do it all, even though she admitted she couldn't just take it over now.
It felt a little embarrassing saying I couldn't cope much longer as we are and how quickly she agreed I couldn't cope and said I couldn't carry on for much longer. Even though it's true, it's not nice to admit it and have people recognise it and I feel a bit weak to be honest.
Anyway she's been now and I'm still here at mums as thought I probably would be but she gave us some things to think about.
I'm hoping mum will agree to respite so at least I can get couple of weeks sleeping at home, although I'd be nervous about it too in case don't treat her right or look after her or she not happy there with strangers in a strange place. I know it would scare me, just visiting her there and having to talk to staff etc, will scare me enough without being person actually staying there.

 

[annielou]

It might not go well @annielou , but the SW won't press matters if your mum gets upset, she'll just try to assess things. Don't let it put you off. It was obvious to the SW on their last assessment here two weeks ago that mum, depsite trying to hide things was struggling on her own and there were new concerns.

Edited: because I don't seem to be able to spell

Did you get a respite place for your mum yet?

 

[Lirene]

It sounds as though everything went okay and that the social worker understood what you and your mum are going through. Maybe try a couple if short visits to care homes for a cup of tea and a chat so mum can maybe relax with the people there and you can speak to the staff etc,. and see how things are.
I wish you a peaceful sleep tonight in the knowledge that you have done all you can for today. Well done love.
Love, hugs and prayers xx

 

[Pete1]

Hi @annielou, as I said the one thing that Mum will be consistent in is the refusal for external support and you have indicated that you are at breaking point, so something has to change for both Mum, you and your family. I think you need to grab the respite care to give you a much needed break but also potentially for Mum to see that a residential setting may work for her. Of course she won't want to go, but she doesn't want any other support but you, but also can't stand the thought of your life devoted to provide her with 24/7 care - an impossible equation. The obvious question that jumps out is what happens if you are ill and can't deliver 24/7 care? I do find it a little strange that the Social Worker appreciated your Mum wasn't safe at night on her own but seemed to encourage that to happen - I wonder why she wasn't suggesting residential care?

In terms of the Police, I was passed from pillar to post by our local force as no-one had any knowledge of the Herbert Protocol and did not know how to record it on the system (don't know if they ever worked out how to do it) !! They did suggest putting my contact details on Mum's walking frame which I did. The carer driving to Mum's and finding poor Mum struggling down the road on her walking frame was the catalyst for me getting a residential care placement for Mum. When we got Mum home after that incident I couldn't get her to recognise her bungalow. I always felt bad afterwards (especially as her life was far richer in residential care) that I hadn't taken the step a few months earlier and I put Mum at risk through my inaction (I was only trying to carry out her wishes - but of course she had no understanding of the situation anymore).

I do think you need to just arrange the respite care and take Mum for a 'free' holiday. It is such a stressful time for you all, and you inevitably feel caught between a rock and a hard place, I wish you and the family all the best and hope that you can get that respite care in place. Keep posting......

 

[LadyA]

Hi @annielou, I always felt bad afterwards (especially as her life was far richer in residential care) that I hadn't taken the step a few months earlier and I put Mum at risk through my inaction (I was only trying to carry out her wishes - but of course she had no understanding of the situation anymore).

I do think you need to just arrange the respite care and take Mum for a 'free' holiday. It is such a stressful time for you all, and you inevitably feel caught between a rock and a hard place, I wish you and the family all the best and hope that you can get that respite care in place. Keep posting......

This. Nobody wants to go to residential care. Just ask ourselves, would we? Obviously, of course not. Because we aren't ill. There's nothing wrong with us. We are perfectly capable of looking after ourselves.
That understanding of being perfectly able to take care of ourselves, and nothing being wrong with us, doesn't change with the onset of dementia. As far as your mum is concerned, there is no need of carers, or full time care. And I'm another who had regrets about not getting my husband into full time care earlier. He was terribly opposed, all his life, to the idea of nursing homes. However, once he settled in, he positively thrived. Loved the company and felt so much more secure once he realised that there was always someone around to help him, day or night. And eating in the dining room with company in a restaurant like setting, he ate more, and gained weight.

We feel like we're committing the worst kind of betrayal. But we are doing what we are supposed to do: ensuring that our loved ones have the level of care they need. If you look on it that we need to provide the level of care needed, and that doesn't mean that we have to do it all by ourselves.

On a side note, but maybe relevant: My mum (elderly, frail & disabled, but no dementia) had a stay in hospital recently after a fall. The hospital arranged for two weeks rehab and physio for her in a local nursing home. Mum was furious, and vehemently arguing that she would NOT go to any such home! "I will manage! I've been taking care of myself since before you were all born!" etc. Eventually, the Consultant persuaded her that their aim was to get her back to her previous level of independence, that she would be having intensive physio, etc. And she wasn't two days in the Home, when she realised that it was, actually, for her benefit, and she turned out to love it! When my husband first went to nursing home care, he would ask about coming home, and I always replied that the doctors wanted him to stay there until he had regained his strength. When he was well enough, he could come home. You could try and get your mum's doctor on board to convince her to try the respite, at least.

 

[annielou]

Thanks @Lirene and @Pete1 yes social worker seemed to understand and be sympathetic although couldn't offer 24 hour care.
SW told me herbert protocol should be on our police website so fingers crossed it is and don't have the same problem you did. X

The idea of leaving mum and either hoping for the best that she manages, or waiting for a crisis to happen, I find scary and I don't think I can do it. Then again I don't know how long I can keep this up for.
Mum asked the SW what she meant by a crisis and she said if police pick you up walking down lane at 3am or if you have a fire or your neighbours report worrying behaviour. So it seems like it has to be quite a dangerous situation thats reported to emergency services/officials before they can step in. I can't risk that happening to mum what if she wonders but police dont find her, or a fire and nobody gets here in time.
Mum was quite surprised at SW and me thinkin she may not be safe on her own. After SW went she talked a lot about what said and what to do whether would try respite or carers, but as she does, while saying she would she also said she wouldn't.
I'm going to look online for some homes for respite next time I'm at my house (if mum doesn't get annoyed at me for doing something other than talk to her) I'll contact a few to ask if respite available and top up fees and then see if can persuade mum into going for a look.
Surprisingly after telling SW mum takes ages at bedtime asking if doors locked, is heating off and trying to check both and that she wakes a lot in night and starts fretting and wont settle from about half five six Mum had a good night last night. She had been nodding off most of evening and then when said going to bed she just asked a couple of times and went straight to bed. She got up about 20 past 1 went loo n straight back to bed after looking in on me then just once more about 1/4 past 5. She did stand over me till I asked if she was ok which she said she was, asked if I was and then went back to bed and was quiet until after 7.
Unfortunately I woke up a bit after 6 and couldn't stop thinking so even though mum had more sleep than usual I didn't

 

[Palerider]

Did you get a respite place for your mum yet?

Yes thanks @annielou , they are coming today to assess mum and hopefully we can trial a period of respite possible permanent care. I feel the same as you do, but mum and I have reached the point where we can't continue like this, it is upsetting and I fear I will be in tears by the end of the day. I am consoled by what @Pete1 just wrote. Mum doesn't recognise home anymore, and just now she didn't know who I was. and I can see her levels of anxiety are up as her own uncertainty about the world sets in more and more. I know if I wasn't here with her she would find it much harder because she wouldn't have the guidance she gets from someone who she knows is somehow familiar with feelings she is hanging onto.

I'll post later how things went on my thread

 

[annielou]

Yes thanks @annielou , they are coming today to assess mum and hopefully we can trial a period of respite possible permanent care. I feel the same as you do, but mum and I have reached the point where we can't continue like this, it is upsetting and I fear I will be in tears by the end of the day. I am consoled by what @Pete1 just wrote. Mum doesn't recognise home anymore, and just now she didn't know who I was. and I can see her levels of anxiety are up as her own uncertainty about the world sets in more and more. I know if I wasn't here with her she would find it much harder because she wouldn't have the guidance she gets from someone who she knows is somehow familiar with feelings she is hanging onto.

I'll post later how things went on my thread

Thats good, glad things are progressing. X
Good luck today I hope it goes well and your mum settles in respite when she goes.
Hope there aren't too many tears for you today. Although if you're anything like me they are never far away and very regular. Tissue sales at our supermarket must have gone through the roof lately

 

[Pete1]

Hi @Palerider, I recognise the situation all too well, recognition of the environment became less and less, the anxiety that this induced and the wandering 'to get home' was a real concern. During this time period she activated her call pendant from her bedroom in the early hours of the morning to the Council Helpline to tell them she had been kidnapped (I know it may sound funny but at the time I was absolutely devastated thinking how poor Mum must have must have felt there alone). I do remember the sudden clarity of thought - why am I doing this (trying to keep Mum living 'independently'), it doesn't make any sense, who is it actually benefiting? - the answer of course was no-one, Mum was worried, scared and agitated most of the time, the carers were also worried and less able to deal with the lack of recognition of her surroundings, and I was perpetually worried for her safety and well-being. I had felt I was betraying Mum by considering residential care when of course the real truth of the matter was that I was actually quite badly letting her down by not ensuring that she had the right care and was safe and reassured. When we discussed it she actually said that she wanted me to do what was right as she had the recognition that it was becoming more and more difficult as she deteriorated (physically as well as mentally). I really hope that you and @annielou do get a way forward soon. All the best.

 

[annielou]

This. Nobody wants to go to residential care. Just ask ourselves, would we? Obviously, of course not. Because we aren't ill. There's nothing wrong with us. We are perfectly capable of looking after ourselves.
That understanding of being perfectly able to take care of ourselves, and nothing being wrong with us, doesn't change with the onset of dementia. As far as your mum is concerned, there is no need of carers, or full time care. And I'm another who had regrets about not getting my husband into full time care earlier. He was terribly opposed, all his life, to the idea of nursing homes. However, once he settled in, he positively thrived. Loved the company and felt so much more secure once he realised that there was always someone around to help him, day or night. And eating in the dining room with company in a restaurant like setting, he ate more, and gained weight.

We feel like we're committing the worst kind of betrayal. But we are doing what we are supposed to do: ensuring that our loved ones have the level of care they need. If you look on it that we need to provide the level of care needed, and that doesn't mean that we have to do it all by ourselves.

On a side note, but maybe relevant: My mum (elderly, frail & disabled, but no dementia) had a stay in hospital recently after a fall. The hospital arranged for two weeks rehab and physio for her in a local nursing home. Mum was furious, and vehemently arguing that she would NOT go to any such home! "I will manage! I've been taking care of myself since before you were all born!" etc. Eventually, the Consultant persuaded her that their aim was to get her back to her previous level of independence, that she would be having intensive physio, etc. And she wasn't two days in the Home, when she realised that it was, actually, for her benefit, and she turned out to love it! When my husband first went to nursing home care, he would ask about coming home, and I always replied that the doctors wanted him to stay there until he had regained his strength. When he was well enough, he could come home. You could try and get your mum's doctor on board to convince her to try the respite, at least.

Glad to hear your husband settled in his home and your mum enjoyed her spell for rehab, I hope she's recovered after her fall now x
I hope mum will go in respite and also enjoys or settles and benefits from it. I do feel that I am not doing a good enough job of supporting and looking after her, that she needs more than a tired worried me to watch out for and support her .

 

[annielou]

The social worker rung this morning and told me she had spoke to her manager and they had ok'd 4 weeks respite for mum. She has also referred us to the mental health team. She's sending mums care plan today. Just need find somewhere and get mum to agree to go now X fingers crossed X

 

[Pete1]

Hi @annielou good news, that's one hurdle. I hope you can find somewhere suitable asap and that it will help you and Mum.

 

[Sarasa]

@annielou , that's good news. I'd try not to talk to your mum too much about possible respite until it's all sorted.