What to do?

[Chickenlicken15]

Hi sorry for long post but asking for suggestions please . My dad is 85 and has Alzheimer’s my mum is 80 and has health issues - severe reynauds which effect her hands and feet - they are living in their own home - I live about 50 mins away and work but try and go over one afternoon a week to take dad out etc.
mum is struggling to cope especially as dad is up a couple of times a night . Dad has just been into respite care for 5 weeks whilst mum had treatment but although mum chose a home which specialises in dementia he is not bad enough to be there - to be honest I found it really hard to see him there as no one for him to chat to as other residents were far worse. Dad has only been home a week and mum already saying she is struggling but my problem is that mum is very closed to suggestions. Dad goes to a lunch club twice a week and they have a sitter in at least once a week plus me so apart from the weekend they are doing something each day. I have suggested to mum a night carer may help so at least she could get a better nights sleep but she is adamant carers in will not work without even trying
does anyone have any experience about night carers or any other suggestions? I’m struggling with mum moaning but dot really know what I am supposed to do !
i am one of 4 but the closest my siblings do help but does it help that mum does have a tendency to play us off against each other !
sorry for long rambling post😫

Tough love maybe? You and all your siblings need to all communicate better and all say to mum that she either opens up to the suggestion of night care or stops moaning.. You’ll be amazed how
fast she reconsiders when no one is giving her sympathy because she won’t look into help

Yes I don’t disagree the problem is that two of my siblings who live the furthest away would be sympathetic and in agreement re carers not being helpful so that would drive a wedge between the 4 of us which I really want to avoid . I just feel worn down by the constant moaning if I’m honest but that sounds so horribly unsympathetic

I suggest you and the nearest sibliing tell the other two that they either toe the line or come down and do some respite care on a regular basis as you do. I think you will find that they prefer to toe the line.....

Have you considered a retirement living flat? My PILs have moved into one as they were struggling to cope and are finding things much easier. IMO it's a really good stepping stone between living independently and needing a care home.

Thanks for all your replies - I agree some tough talking is needed then shut my ears to the complaints - a retirment property would be ideal for my in laws but they are refusing too but that’s a whole different story !

The reality is that caring for your Dad is just too much for her. It's exhausting, relentless and she's not well herself. I used to care for couples like this and usually the one in better health dies first from the strain of looking after their partner. Then family steps in and sorts out care for the surviving one and it always made me wonder why on earth they didn't do so before.....

It's not sustainable for her. And there are choices: assisted living together with carers on site; a live in carer; or regular care visits during the day with medication for your father overnight so she can at least rest. It's better to do something before the inevitable crisis hits.

I'm a night carer OP - a private one for self funding clients. What is it specifically that you want to know, maybe I can help.

Night care is fairly unusual. If he is absolutely needing it, are you sure he doesn't need the care home?

Bear in mind the other residents you are looking at may have been there some time, so will have naturally deteriorated during their stay. They may have looked a lot more like your Dad when they arrived.

Your mum and unhelpful siblings? What are they actually suggesting as alternative solutions. Because unless they can come up with something they need to listen to what you’re saying.

People who are saying the siblings either need to step up or butt out - the OP can't actually make them do either of those things. All she can control is her own involvement.

Bluebells - you’re right it is too much for mum but mum won’t consider moving to a halfway house such a retirment property so that it a no go - I think the home dad went to last time for respite was not right for him as he needs more going on which he can enjoy at the moment
chowtime - how does a night carer work - I don’t know if it would help mum have a better night sleep or just be more disruptive as I guess mum will need to sleep in spare room but at least she would not have to get out of bed
the problem is that the GP is backing mum saying carer will not help the situation as dad’s dementia mean he sits with mum all day as she is his reassurance so difficult for him to settle with a career if mum is still in the house - fine GP saying that but not coming up with any other suggestions

Have a look at other care homes? Some have a mix of dementia and non dementia patients, some are for mild to moderate dementia etc.

I wish we had moved my dad earlier, by the time he went in, it was too late for him
to eg remember the way to the lounge.

If a day carer visited, they could sit with your dad whilst your mum had a lie down. My dad had a volunteer who used to do a jigsaw with him or similar.

Sheilafentiman- yes I have suggested more caters in each day so mum could have lie down- have also suggested to mum that she has a lie down during the day if dad has a sleep which he often does - but that’s a no go too! Not sure what else I can suggest to mum - I know she would like things to be ‘normal’ but that just is not going to happen now - sad but true x

Ah, my mum was the same - magical thinking that dad might get better :-(

There is the possibility of medication to help your DF sleep (dementia messes with your body clock) or there's an alarm you can get that would alert your DM that your DF has got out of bed. My MIL found that helped her to sleep better as she could rely on the fact that if the alarm hadn't gone off, FIL hadn't got up to wander in the night.

It does sound as though your Mum just can't cope anymore though. That's really tough.

Family conference time

all sibling, mum together. Get your mum to say what she wants. She may struggle at first, but keep probing till you understand her “ vision”. Then discuss options with all siblings together on how to get as close to that as possible. That way she can’t play you off against one another. Or dump funding solution on one of you.

also, being a carer for someone with mental illness (let’s include dementia in that, but my experience was 20 years with ex with psychosis ), completely changes the dynamic of a marriage. Instead of equal partners with you own autonomy you are forced into a “ parent “ role to your spouses “child”. You aren’t just caring for them physically, but having to do all their executive thinking skills ( planning, anticipation, problem solving etc…things we all do in minuscule ways everyday without realising). It is relentless, overwhelming. Add to that the person who’s got dementia or psychosis doesn’t know they’re ill, doesn’t know or acknowledge what spouse is doing to support them and often can actually be accusing them of controlling them. Intimacy dissapears, not sex but any physical affection, as the ill person withdraws more and more into their mind and effectively becomes selfish, well self absorbed, and lacking empathy for their carer spouse. There are some studies to show that physical attraction is turned off when someone is pushed into a carer role in an intimate relationship, hypothesis is something genetically to prevent incest with children we care for.
your mother is struggling emotionally probably . She’s likely grieving and on the grief pathway but stuck as your dad hasn’t died or left her. She likely to be berating herself with her lack of patience, tolerance and possibly growing resentment at you father. That’s all normal but horrendous for her and family witnessing her perhaps becoming cold and uncaring towards your father. In younger marriages, sadly, the statistics are frightening- 90% of marriages fail and 1 in 2 careers become mentally unwell themselves .

your mother will probably not want to admit fully to what she’s really thinking or feeling as it doesn’t meet with the “ sickness and health, better or worse” vows she took . If she is moaning at you, it won’t cover half of the emotions she really feels, the pain, loneliness, guilt, frustration, despair.

you have to get her to see sense and admit she cannot, no one can, take care of your dad on her own. She must be able to sleep properly as that alone won’t help her mental health or patience. That’s the priority- you must get you all together to discuss and agree a way forward. As others have said the shear mental stress of being thrust into this situation will possibly to kill her before your dad 😢

Me and my sister cared for Dad in his own home for 7 years with Alzheimer’s. He was very physically fit and active, so although his mental capacity was declining, he still enjoyed going out for walks. We had to move him to a home in the end, as his safety became a massive risk. He wouldn’t remember where he lived and reached a point where he didn’t know he shouldn’t go out alone. Also started wandering at night, not having an awareness of day / night. Basically when he needed a constant companion / supervision.
It’s hideous and frustrating, but there are very little options available other than carers (private or social services if eligible), day centres or full on care homes.
He lived 3 years in the home before passing away. When he moved in he was constantly pacing the corridors all day long. Trying doors to get out. It was heartbreaking, but we had no choice as we couldn’t be with him 24/7. He’d settle eventually and watch a nature dvd in his room, but never really took to sitting in the communal lounge, as probably felt it wasn’t for him. The other residents looked like elderly people who needed to be in a care home with little mobility, whereas it took a couple of years of decline before he looked like that.

Sorry, I appreciate I’m waffling a bit here, but you have my utmost sympathy, it’s a very difficult time, and whilst there’s support out there, it’s very difficult to come by. Do you have any contact with your local Alzheimer’s society, or does your Dad have a social worker?
If you have any questions you think I might be able to help with, please ask.

Hmm seems to me that retirement living option is too late for your dad.

Thanks everyone it helps that others understand what it is like and so much of what has been said rings true - your comments re mum -whiteroomjoy are so accurate and I do feel for mum but can sense her frustration with dad
as you say time for a family conference which will not be easy !
thanks again everyone x