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[CDR]

Hello everyone

This is my first post. I’m writing on behalf of my mum. She is 86 and the main carer for my dad, who’s 85. Dad has vascular dementia, is being treated for depression, has lost the use of his legs, can no longer stand at all, isn’t eating properly, can no longer use a knife and fork properly, wakes regularly and often during the night and calls for mum. He regularly has a go at her, accuses her of not caring, cannot understand why she won’t put him in his wheelchair to go out. Accuses her of being evil and of keeping him prisoner. His condition has deteriorated greatly over the last 3 months. They have carers going in 3 times a day to help dad. The carers have to use a hoist to move him from bed to chair, chair to commode, chair to bed. The hoist takes two people to use. Mum is astonishingly fit and capable but she can not move him on her own. Because of the Covid lockdown, my siblings and I cannot go into the house to help at all. The carers are great. Dad’s doctors, district nurse, OT have all been as supportive as possible but mum is exhausted. Unless someone can be in the house with mum, I don’t know if she will manage to keep going. We talk on the phone, but what else can we do? I am so worried. Apologies for the long message.

 

[karaokePete]

Hello and welcome @CDR.

No need to apologise as dementia is tough.

Usually something like respite care might be suggest so that your mum can get a break but that may not be available because of the current crisis.

I wonder if the GP could help with something to settle your dad at night in the short term so that your mum can get some sleep. I know from bitter experience with my wife that when the carer isn't getting enough sleep it's exhausting and everything is so much tougher.

 

[Grannie G]

Hello @CDR Welcome to Dementia Talking Point.

Has residential care ever been considered for your dad?

It sounds as if your mum is putting up with a lot of behavioural challenges in addition to your dad`s physical dependency and I wonder how much longer she can manage him at home.

Having carer support three times a day sounds good until you count the number of hours your mum has total responsibility for your dad in the remaining 24 hours.

If your mum has support from the doctors etc. I`m sure they will appreciate how much more help she needs. Whether it`s medication or a period in residential care, your mum needs some respite and I would put that suggestion to her.

 

[Lynmax]

How far do you live from your parents? If you are local, then you are allowed to visit to provide care for vulnerable people. But obviously your own circumstances might make this unwise.

 

[CDR]

Hello and welcome @CDR.

No need to apologise as dementia is tough.

Usually something like respite care might be suggest so that your mum can get a break but that may not be available because of the current crisis.

I wonder if the GP could help with something to settle your dad at night in the short term so that your mum can get some sleep. I know from bitter experience with my wife that when the carer isn't getting enough sleep it's exhausting and everything is so much tougher.

Thank you for replying. It’s much appreciated. Dad had a week in respite care in February. By the end of the week he had stopped eating and was saying things like, ‘push me over to that window so I can throw myself out’, and ‘ give me the keys so I can drive into a truck’ [he can’t drive any more]. As the week went on, mum got more and more distressed. When he got home, his doctor upped his anti depressants. And that was kind of the beginning of the deterioration that has happened over the last few months. I don’t know if we just chose the wrong care home. Day care would help, although obviously not at the moment. He would need a high dependency place, which limits your choice, but there are a few places around and I think mum is/will consider them as and when she can. I’d wondered about some kind of sleeping tablet but he’s on so much medication already. Maybe if it were just for the short term it might be okay. I’ll suggest it to her. She has said the same thing as you - when she isn’t getting her sleep it’s all so much harder. Thank you

 

[CDR]

How far do you live from your parents? If you are local, then you are allowed to visit to provide care for vulnerable people. But obviously your own circumstances might make this unwise.

Hello. Thanks for the reply. Much appreciated. I live across the other side of the country, as do one of my sisters and my brother. My older sister lives close to mum and dad. She’s been visiting but not going in, so far. But she works (and has continued to work throughout the lockdown) as a receptionist in a GP surgery and is high risk for getting the virus. She also has limited time. However, she’s said she will now mask up and go in to see if she and mum can work this hoist. She’ll then push dad out for a walk, but there’s nowhere in the immediate area they can go other than up and down the road. Mum is getting to a stage where the wheelchair and dad are too heavy for her to manoeuvre. My other sister has younger children and a husband who’s gone back to work. My brother and I have diabetes. I have an older son no longer at school and my husband works from home. We’ve been careful and I’m 99.9% certain we’re virus free. I would go and simply move in if it weren’t for the carers who, despite all the PPE, are the weak link in passing the virus on. If one of them unknowingly had it and I was there, then all three of us would likely get it. I’d wondered about going to stay and cancelling the carers but getting dad into/out of the hoist is a fairly strenuous exercise and I think it would end up increasing mum’s work load. I don’t know. I just want to ease the burden for mum.

 

[canary]

I don’t know if we just chose the wrong care home.

I doubt that a few days would make that much difference. Vascular dementia tends to progress in "steps" and it sounds to me as though he has just had another "step" down. Its hard once mobility has been affected.

You cant completely eliminate the risk of covid. Even if you dont have the virus yourself, you could bring it in on your hands or clothes, so even if you stopped the carers you could still bring in the virus yourself. Please dont stop the carers from coming in - your mum needs them. We have carers coming in for OH and they are very professional. So long as they have PPE your mum is as safe as possible.