Help. My dad can't care for my mum properly - what next?

[RebeccaNoodles]

I'll try and keep this short ...

Mum (75) has Alzheimers diagnosed 3 years ago. Lives at home with my dad, 72. She doesn't have any major behavioural issues yet aside from one: she regularly leaves the house due to delusion that he's a baddie. She also needs help with washing and dressing. We now have a carer coming in 4x a week to help with that, but it's not quite enough - though my dad doesn't want more hours.

My dad is understandably under lots of stress and getting forgetful himself. There was a minor change recently to her meds and I had to spend an hour going over it with him before he felt confident. About every week there's a crisis - she escapes, or else they have a row, or toilet blocks, or phone stops working.They don't do laundry regularly and the house often smells bad :( We hired a cleaner but she's gone off sick now. It's endless.

They are still relatively young/active and if you met them outside the house you might think they were fine - they go out for lunch, see friends etc. But the wheels are coming off.

We're doing everything we can to give Dad respite (Mum is on waiting list for day care; we take her out; she goes to a dementia club once a week) but it's not enough. My dad can look after himself, not perfectly but adequately - but he can't really look after mum any more, not alone.

So what do we do? Our options seem to be either put her in a home, which is very drastic/expensive, or get full time care for them both at home. I think my dad would hate that - all of their contemporaries live independently and I think he would feel ashamed and like it was a massive intrusion, which it would be. But equally, we can't keep on fire-fighting with them. The escapes are the most time consuming thing; it's not just finding Mum but calming Dad down, making sure he doesn't get angry at her for doing it, etc. It takes about two hours. We've got ID tag for her now but still.

I live a plane journey away and am 11 weeks pregnant with my first baby. Have two brothers near parents, but they are also stretched with young families. Have considered moving in with them but my DH is not keen plus, could I even care for them plus a newborn?

If anyone sees this, I'd be really grateful for any ideas/tips. It's really hard - I feel like they're facing this 10 years earlier than anyone else they know, so we're all groping in the dark.

Thank you.

[blueistheonlycolourwefeel]

My grandma had dementia and lived at home with my grandad. He did his best to look after her but it got to a point where it was dangerous. He couldn't go out at all and she would put the electric kettle on the hob to heat it up and turn all the electric rings on full etc etc. She was also incontinent and kept getting UTI's as he couldn't clean her properly.
We made the very reluctant decision to put her in a home for both of their safety. It was a tough time.

[LarrytheCucumber]

Rebecca

[P1nkP0ppy]

It's incredibly tough, I really feel for you.
Firstly I was ask your local Social Services for a Community Care Assessment for your mum and a Carers Assessment for your dad. That would establish what they each need as individuals to support them at home. It would also be worth them having a benefits check to make sure they're getting what they can.
Your DF needs to ask for your mum's medication to be put in a dossette box so he doesn't have to worry about her medication.
Is there an Altzheimers Society local to them? They offer free support to the person and their carer, day respite, outings and activities.

💐

[Toooldtobearsed]

Oh Rebecca love, it can only get worse.

I was in exactly the same situation as you a year ago. My stepfather was caring for my mum and not coping at all. She had uti's because she was not drinking enough - he would offer her food and drink and she always said no. He just did not 'get' what dementia is and still thought she 'had enough common sense to know if she was hungry or thirsty'.

That is just one example. He worshipped the ground she walked on and i will never fault him for that, but he simply could not cope. The house was a pigsty, they became increasingly isolated, my mum smelled dirty.........

They had help a few times a wekk, but it was not enough and eventually he broke down and admitted he could not cope. My mum went into a care home and they were wonderful with her. I will admit that she never fully settled there, she always asked to go home, but she was well cared for and, to be frank, was so bad with altzeimers, knew none of her army of visitors - she did not know who i was at the end, nor her sister or brothers. My mum died, but from breast cancer, in the home.

There is really very little choice for you I am afraid Rebecca. For your dads sake, as well as you mums, you need to look at care homes. My SF's mental health has definitely been affected by living with with my mums dementia. It is hard, but it would probably give them both a boost, believe it or not.

Getting old is a bastard.

[Flowers]

[thesandwich]

This sounds awful. But please do not consider moving in. You have yourself and your new baby to consider. Things will get worse i' m afraid so please get what care you can in place. Could you get a tracker device for your mum? Research as others say- have you got power of attorney in place? Really important. There are some wonderful carers about- it takes some finding. Sounds like your dd needs lots of support too. Take care.

[whataboutbob]

I absolutely echo the sandwich. Do not even entertain moving in. I have been there with a Dad with Alzheimers living with a brother with serious mental illnes,s and I was at my wits' end and considered the drastic solution of moving in next door (leaving job, uprooting kids and forcing DH to leave his job too), I am so glad I didn't.
The wandering is really difficult, Dad would turn up all over the south east as he had a passion for trains. The transport police had me on speed dial and for about 18 grueling months I was hearing from them weekly. In the end we got carers in all day who basically shadowed him around preventing dangerous situations occurring (he also had aggressive behaviour). It was very expensive but a care home did not work out after we were told they could not cope with him.
I feel for you, you are abroad and pregnant and very obviously involved and concerned. Given the distance you have to use your time wisely. I would ask to meet the relevant professionals when you are next in town: GP, social worker, any local dementia team. If you and brothers haven't already done so, find out what is available locally. They might be entitled to some free care (means assessed) , respite for your Dad etc, Social workers should know the entitlements. And yes you, or any combination of you and siblings need to look into POA if you haven't already got it. I'd have been even more up s..t creep than i was without it.

[Alonglongway]

I agree about not moving in. I have just moved to be near my elderly parents and my kids are teenagers who are up and willing for piling in to help but it's still hard. We all need to keep our lives going

Does your dad acknowledge how tough it is? Can he say what kind of cafe would make a difference?

[AllPartOfThePlan]

I looked at a lovely retirement village for my grandparents when they were similar and honestly it was great! I'll move myself there when I'm old!! Residents had their own property, private, looked like any normal house, but staff, nurses, activities and everything they need on site. They could come and go as much as they wanted but there were staff on the front gate precisely to look out for dementia patients who wander off. Within the village they could wander around safely. They could join in as many or as few activities as they wanted, could cook for themselves, have meals brought in or go to the restaurants, there was a bar on site, frequent group outings, daily nurse visits if they needed it, housekeeping if they needed it, gardeners, everything! And the cost of care was the purchase price of the house so sell their house, buy one there and that's it, covered, the company get the house back at the end. It was such a good system! Is there anything like that you could look into?

[RebeccaNoodles]

Thanks everyone for all the replies, and I'm sorry so many people are going through the same or worse
Sandwich and Bob, you are right about moving in. There's no way and I don't think even my parents would like it! I am going to stay with them for 5 days in Jan and that's the limit all round I think.

Things feel a bit more manageable now. Had a family conference the other day and consensus was we're not at the stage of live-in carers yet. Or putting Mum in a home - she's still too well for that; eg she's safe to leave at home, for now. As soon as that changes, though, we would reconsider. Tooold, your situation sounds very sad. I should say that Mum recognises us all and is very attached to her home - gets uneasy whenever she has to be out for too long.We're going to increase the hours of the current carer - though my dad is resistant to that. He hates hassle/having people in the house. But we'll talk him round. It is tiring because it's like we're dealing with two patients.

AllPart the retirement village sounds great and I'd love to see Mum and Dad open to something like that, but they're just not. It would be out of the question. They would hate the communal aspect and also they would consider this is something for old people - which they're not of course

Alongway that sounds hard to uproot yourselves to live near your parents -well done to you and your kids for being willing to help. It's a good idea to ask Dad outright what would help. I think his answer would be 'a cure' - up until recently he was pinning his hopes on the idea that Mum would somehow get better. He's just been really slow to grasp her condition.

Thanks again all and to all those struggling. I really think if you sat down to invent a condition that could break a family's heart, you couldn't come up with a better one than Alzheimer's.

[whataboutbob]

Totally agree with that. No wish to be offensive to those who are dealing with it, but I think in many ways a diagnosis of cancer in a parent is easier to deal with. You don't have to deal with the total disorientation and inability to cope doubled up with the denial that anything is wrong and the never ending mishaps and fuck ups, which makes Alzheimers such a bastard to deal with. Deep breaths Bob.

[mammmamia]

Rebecca in sorry to hear about your struggles. No real advice but wanted to say I'm in a similar position. My dad had a stroke a few months ago which has left him quite disabled so overnight my mum has become his carer. He needs help with most things and can't be left alone. It's such a big change for them and so sudden. They have hired a carer who comes during the day but I know they find it intrusive and hard to have someone around all day.
Hopefully my dad will however get stronger but he will always need help and I'm anxious about the future, although trying to stay positive.

[RebeccaNoodles]

Bob - I know. It's so hard because I look at friends who lost their parents when they were in their teens and I know that dementia age 75 would be a dream scenario for them. Or a worthwhile payoff at least. But yes, in a way for us cancer would be a dream scenario. Heartbreaking but a clean break. Whereas this way we're losing Mum anyway, but also gaining a new dependent - two new dependents in fact, her and Dad.

Mamamia I'm so sorry about your dad, and your poor mum. For it to happen suddenly like that must be just awful. What I would say is that this immediate part, with the shock and getting used to everything, is probably the hardest for everyone ... It should get a little easier or at least less traumatic, as you acclimatise. to you.