What to do about Mum

[FlynnD93]

Our 88yr old Mother (father died 3yrs ago) mother has been recently diagnosed with mixed dementia, Alzheimer’s & Vascular the head scan has also revealed she has had a stroke with no paralysis so we were unaware this had happened. She’s been living with my sister who was happy to have her for 6wks, she’s been looking so much better (she is physically able) but she is now insisting on returning back to her bungalow despite telling us she was lonely, and scared at night. We spent 4/5 hours a day with her to keep her in her bungalow initially for the last 8months but we then suffered constant telephone calls of her crying saying she’d seen nobody all day!! She agreed to live with my sister but now says no I only came for a break. Our older brother is championing for her to return to the bungalow which isn’t helping but he works full time so care is down to myself & sister, she has retired but I still work part time. We are both in our 60’s. She is also refusing carers (I’m not having strangers in my home) The worry is really getting me down and I’m starting to resent mum without wanting to! We both have grown up children and small grandchildren that are really taking a back seat! What to do????? I’m currently writing this at my wits end knowing exactly what’s ahead for me as it’s only going to get worse… Any advice???

I feel your pain OP - I have had a v tough few years supporting DM who has dementia, Parkinson's etc. Trying to keep her at home honestly nearly broke me - I'm in my 40s, working, with DC at home etc and was doing everything I could to respect her wishes and also keep her safe. But ultimately it wasn't possible and she moved to a care home at the end of last year after many weeks in hospital.

You've had some good advice here and I would, in particular, second:

• Getting an LPA in place asap
• Applying for attendance allowance (I've just done this for my aunt and it came through v quickly)
• Push back against her resistance to having strangers in the home. If we'd waited until Mum was 'ready' to have first a cleaner, then an alarm, then carers, then a nursing home it would have been disastrous.

I also had some good advice from a friend who said 'organise more support than you think you need because things change really fast' - that is soooo true.

And try not to let meeting her needs mean that you neglect your own. Wish I'd taken that advice myself.

Also, sorry if this sounds harsh but your brother really needs to butt out given that he isn't going to be the one bearing the brunt if your mum moves back to her bungalow and needs a high level of support. In my experience it is women, the vast, vast majority of the time who do the lion's share of looking after elderly relatives regardless of their other commitments

Honestly you will have to let her fail.
Fail to eat and get ill, go out and get lost, annoy and be reported by the neighbours, fail to take her medications....
We are having this now. DPs simply will not accept sensible outside help until there is a crisis and it is taken out of their hands.
We await the crisis.

Helpful !

I care for DH with LB dementia and I have gone through some of the same. It is hard work. My suggestions would be as follows: 1. cameras. In the early stages of dementia I would try and support as much independent living as is possible. Two way cameras can be useful in doing this, so you can see if mum is okay and have a conversation with her from time to time. 2. Get some support in for a few hours. I understand your mum's reluctance, but would this be lower if she picked the carer? We used a site called UKCIL which was recommended by our LA. There you can place an advert for a carer for may be a few hours or half days a week and this can be a Godsend for support. After a small time period if you pick the right carer it will feel like she is having a friend round who helps her cook her favourite food, go with her on small outings etc. the Alzheimer's society is also very useful and also I would recommend perhaps a chat with an Admiral nurse, who really understand the problems you will be having. Sadly dementia issues will only increase over time, but in this early period there is a lot you can do to provide independence.

To be blunt, what she wants isn't always going to be possible. Saying "don't put me in a home" or "I don't want strangers in my house" is very selfish and does not recognise the impact on adult children.

Dementia is the pits, it destroyed my dad and turned him into an anxious, paranoid, difficult to manage shadow of himself. And to be blunt again, it's not going to get any better than it is now. You need to speak to your siblings OP and present a united front.

This is possibly the most important thing you need to do when a family member is diagnosed with Dementia.

My dad has Dementia and it's an incredibly difficult experience.
I really feel for you.

One hundred percent .

This is so true. DM made me promise not to put her in a home and I felt so much guilt around it that I put myself under a huge amount of pressure to keep her at home well beyond the point when it was the best thing for her.

Something like this sounds like a good option?

Our older brother is championing for her to return to the bungalow which isn’t helping but he works full time so care is down to myself & sister

Well he will probably change his mind when you point out to him that you and sister are not available for caring, so he will have to do it

We have said to our adult children and each other that if we need residential care to go ahead no.qualms, we would be happy with carers at first but If we need a home then its OK.

dementia/alzheimers runs in my mums family my mum is the youngest and I am seeing some signs and my stepdad is "covering " for her atm but I can see it coming to the surface and, they have said no strangers in the house already so we know it is going to be a battle.

Totally agree with this. She may have some capacity now but that may go very quickly. FGS get POA set up as you may need to make some tough decisions sooner rather than later. My mum started wandering in the night, so we moved her into a Home as soon as that started to happen (she had lived alone before that with carers, but similar things to Heronwatcher, above, started, eg hiding money as ‘people’ were stealing it, etc, and it was a nightmare), no she didn’t want to technically, but she wasn’t safe so we did it anyway. Best thing we could have done.

Honestly it sounds like there’s no way it would be safe for her to return home without significant help. And even if it is now, may well not be for much longer sadly.

I’d also probably tell dear brother to wind his neck in with regards to telling her to go home on her own or he will be going to live with her when it inevitably falls apart!

I’d be insisting on carers as a minimum… would her cooking be safe? My dad has Alzheimer’s and lost the ability to cook safely alarmingly quickly…

Some friends of mine are going through this with the DH’s DSF; He is living on his own with carers four times a day but the DSS still gets repeated phone calls quite often saying he hasn’t been got up/given a meal etc.
The thing is, we may want these family members to stay in their homes but how will we feel if they do something unsafe and have a terrible accident?

It's hard to tell the brother to wind his neck in because he might work with the mother against the sisters. Mother could even disinterest the sisters if things spiral. Best for everyone to stay calm and not get into sides.

If your brother is advocating moving your mum back home, tell him that he will have to adjust his working hours or retire so that he can be part of her daily support system. He can't just pronounce this knowing that the burden of care will fall on his two sisters and not himself.

Double post so deleted.

In your situation I would sit down with your sister and brother and decide what happens next. The reality is that your mother can't live on her own and her care needs will get higher in time. Your sister was good enough to take in your mother for the past few weeks. Your mother now wants to go home and does not want careers.
Your brother seems to think this will be fine. He probably has the expectation that you and your sister can drop all at a moments notice. You can deal with her calls, the expectation of visits every day, can drop all when she has a fall or starts wondering out in the middle of the night.
The reality of someone with altizmers is that they need careers and will need nursing home care in time. They get to a stage of not knowing when it's day or night and can go wondering. Then they can't remember where they live. They start waking up between 4-5 in the morning or start waking up in the middle of the night and want to go places then.
They forget ot eat or drink or ask when is dinner despite eating dinner a half an hour before. They ask the same questions numerous times a day. One of my friends had a mother with Altizmers and this was they had to deal with. Everytually they needed nursing home care despite my friend giving up work to look after them and getting benefits at the time. My friend was physically and mentally exhausted by this stage.

If your mother wants to go home she needs careers coming in a few times a day. You and your sister can't just drop all to provide what she wants. You need to decide what day and time you can each visit your mother's house also. I know that your brother is working so you can tell him he will spend every weekend including nights in your mother's house. Tell him the she won't cope with living on her own at home and that you or your sister are not going to move in with her to provide 24/7 care. Tell him what will happen to her with altizmers and let him see that what she wants won't work for her, you and your sister and him.

If your sister is willing to have her stay with her for the moment it would be the best thing for her. In this case I would ensure that your sister gets regular brakes from her home and your mother when you look after your mother. I would also let your sister stay in your house the odd night when you stay in her house to mind your mother. Your brother needs to be told he will be doing his share of this care also. It's important that your sister can go places and do things when you or your brother mind your mother. I would also get poa for health and finances for your mother as soon as possible. Apply for attendance allowance and use this to pay for extras that will make life easier for your sister if she is looking after your mother.

If your mother still wants to move home tell her she will have carer's in order to do this. She will need someone coming in to help her, ensure she has food and drink and to keep an eye on her. I would also get a falls alarm.

If you look up under other here in the elderly parents section you can ask for advice and people in your situation can give you advice and tell you who to contact regarding the services available.

Thank you to everyone for all your advice it’s muchly appreciated. I will definitely get proper support in place and apply for AA, we already have POA in place for mum, however in the meantime her grown grandchildren (30’s & 40’s) and us will each call in daily for tablets, a meal and chat. We will definitely be having a talk with our brother about the future. I also loved the comment about “putting on my own oxygen mask first” that really hit home with how I feel like I’m drowning atm. 🙏

All the best. It's hard, but it feels a lots better when you have a system in place.
In a similar situation, my sister was getting all the phone calls, and my brother made a laminated card, with the name of the sibling that they could call on that particular day (and a photo of them).
If it's not your day, you don't pick up the phone.

Your brother needs to be on the same page.
Id put to him - if he is so keen for her to return home, is he going to go in everyday before or after work to make sure she has taken medication and eaten
Its all well him wanting something for mum then sitting back not actually helping but has created the situation

If she really wants to go h9me I think she should - but talk through all the problems she has had in the past and how she (not you) will handle them. Put clear boundaries in place as to how often you'll visit, make some notes so it's clear. Tell her if she cant cope then she will need someone to come and help her.

There should be a day time club for people with dementia which social services can refer her to.