Mum has Alzheimer's - troubles with care

[Chapterandverse]

Mum was diagnosed with two different types of dementia over a year ago, one being vascular.

She lives alone and wants to live alone.

We did have carers but mum refused to get out of bed for them or eat breakfast etc and they always rang my sister (who is a SAHM) who then had to go in and coax mum (she lives about 5 miles away)

After a chat my sister said she would step in in place of the morning carers and get mum up and washed and dressed etc she also gives her medication. We felt the routine would be better for mum.

But recently she has been so cruel to my sister, hurtful and paranoid. I know it's all part of the illness.

But as I don't want to drip feed I have to give the background - a large family, abuse in the home by our father, my sister who is doing the caring was always the one who came off worse at my father's hands. My mother didn't step in to help or to safeguard any of us at any time.

When sister suggested caring, I immediately felt this was wrong and had huge potential for hurt for her. I live about 30 miles away and visit as often as I can and do the weekend care but the daily stuff falls to my sister. (There are lots of siblings and all the girls take our turns at weekend but boys not so much)
Although the marriage ended a good number of years ago, father is still on the scene. He floats in and out and whether it's a side effect of the disease, mum adores him. Idolises him even.

He has started being aggressive to the sister who does the caring. Calling other people if an emergency arises rather than her so she finds out second hand. They had a row last week and since then mum has been aggressive towards her, calling her names (the cruel hurtful ones he used when we were children)

I want her to call social services and get carers in place again. She isn't properly qualified to care for someone with dementia, especially when someone as manipulative as my father is behind the scenes. Mum doesn't remember a lot, she won't remember what she had for lunch or who visited her, but she remembers when he tells her to have a long lie in or that someone is a bad person.

Sorry, I have lost track of what my question even was now, but I feel my sister is being scapegoated again in her life and we're letting it happen. She is the only one who is a SAHM but has more children than the rest of us and hers are mostly primary age.

Does anyone have any experience of any of this as I would be so grateful for advice.

Your poor sister, trying her best to help and getting all this which she doesn't need. I would advise her to stop being the main carer and to contact adult social services safeguarding team and mums GP for a home assessment of her dementia, behaviour and care needs. Your mum sounds like she could do with having a capacity assessment done to see if she is able to make decisions and stay at home safely. Does anyone have power of attorney for your mum. I would also advise your sister not to want to be the first point of contact at the moment, tell dad that you prefer he calls xxxxx (which he is doing anyway), you don't need to give him any explanation. I am guessing dad has a front door key to let himself in.

Thanks so much.

Another sister has POA but all mum is in receipt of is her pension. She lives in a warden assisted fold (but it's only assisted via a cord and intercom there's no warden on-site)

Mum has had three social workers in the past few months. The latest has went off sick and her file hasn't been given to anyone else as yet.

We are waiting a home assessment as She has already the cooker turned off at the mains and her small electric fire removed. She only had use of her kettle and microwave now. Sister leaves a dinner (or father will often take control and make dinner for them both)

My sister said yesterday she can't take it anymore but would feel guilty at being at home and not doing the caring. I don't think she has anything to feel guilty about.

I have suggested a care home (I don't want to sound heartless, but it would also solve the father issue) but they say with so many siblings we should manage her care. Another sibling has suggested overnight stays - I am uncomfortable with this as father has access to the house (keypad access as well as a key)

I feel mum hasn't full capacity and father is manipulative, he is using it to his advantage. Added to this, they never actually divorced so are technically still married (couldn't make it up!)

Oh dear, it sounds very difficult. With POA, if your mum does have capacity, which her GP can determine, then someone could also apply for health and welfare. With her money, she may well be entitlted to attendance allowance and your sister carers allowance. I would phone the social services safeguarding manager and explain all you've told us and say that your mum is very vulnerable, there is no care available and she cannot look after herself and is therefore at risk. Who suggested the family can become carers and there is no need for a carehome, your mums welfare is the top priority. I would definately call the GP, not everyone with dementia becomes aggressive and paranoid, it may be that she has an infection or needs her medication reviewed. It's not good for anyone for family to be having rows.

I don't think I've explained this very well.

We're in NI so the carers allowance is only granted if mum receives certain benefits. As it stands we are only aware of her getting her state pension and the rent on the fold paid. When we queried carers allowance they said they would send social worker out - the one who is now off sick.

When we had a carer package they would come in at 9am, mum would refuse to get up so they would either leave her a cup of tea in the kitchen or just leave. It's not their fault as they're on a time limit. But then my sister started calling in after she left the youngest to school - carers saw her there and saw that mum would get up for her. They started calling her so it was almost daily.

When we discussed it (my sisters and I) they were adamant mum would remain in her own home with our help. However we all work full time (apart from the SAHM) so she said she would do week days if we did weekends. I floated the idea of a care home & was told no way would that happen, what would people think when there are so many of us, mum give up her life to care for us and now the least we can do is care for her.

But imo the game changes with a history of abuse.

Mum doesn't have capacity. My sister lifts her pension and gives her whatever she wants/needs to have in her purse. We do her shopping and leave money for her hairdresser (home visits)

Social services are as up to speed as this I think- the previous sw who met with us knew the history and said if sister changed her mind mum could be put back on the carers rota so I am trying to convince my sister for her own sanity that's what needs to happen.

I hope all the details aren't too identifying but I am sure I'm not the only person in this situation.

If it were me I'd have to get the carers back, it's such a difficult decision and you are not alone. Is she safe on her own, i wish you and your lovely family all the best.

You sound like a lovely sister. I agree with you, for your sister’s own sanity your Mum needs to go back on the carer rota. Your sister has nothing to feel guilty about. She has done the best she can in difficult circumstances. The situation is only going to get worse and your Mum needs professional care before your sister’s mental or physical health is compromised.

It doesn’t matter what other people think because there are so many of you; what matters is that your mum is cared for as well as she can be without putting huge stress and strain on anybody. I think you need to talk to your siblings again (not just your sisters!) and thrash this out.

Thank you for the replies.

You're right knitted, we need a family meeting but there has been so much going on recently that it seems we're lurching from one crisis to another. (Deaths in family)

Sisters health (and mental health) is my main priority.

It really does sound as if your Mum needs specialist help. Putting my Mum into care was so hard but I had to agree that I cant do the care she needs. In part because - like with your sister - she wouldn't let me as she'd get angry etc with me. Now she is well cared for and they are able to therapeutically help. Me and the family can concentrate on giving her nice experiences. Your sister doesn't have to feel like she is backing off but changing her role. She also can be gentle with herself and perhaps see your Mum every other day. I'm not sure who you mean when you say 'they' think that as you are a large family you should cope?

Thanks NWQM- yes I agree I think it might be better for sister to have a different role and step back. It's convincing her that.

'They' are the rest of my siblings. There are 10 of us. One brother sees mum every day, one once a week and the rest not too often at all. It's mostly left to the daughters - mum wouldn't want them caring for her anyway. Some days she thinks she's another sister and not our mum at all. It's very difficult to understand. A very cruel hurtful disease.

I haven't heard from sister today - that could mean mum was in good form or that bad she doesn't want to tell me incase I put pressure on her to take a step back.