What support is available for carers?

[Sueperzoom]

Dad has vascular dementia and alzheimer's. He is now at the point where he can't be left alone. He needs to be told when to eat. He's incontinent, needs someone with him to shower him and dress him. He wanders around the house, randomly moving things or trying to pick things up that aren't there. He hallucinates and has tried to get the sharp knives in the kitchen because he thought people were trying to get in the house. We have to hide the door keys because otherwise he tries to leave the house so he can go home ?.
I'm worried about the impact on my mum. She has to be with him every minute of the day. She never gets to go anywhere because if I'm caring for dad to give her a break she has no one to go with and doesn't drive. She's regularly up in the night with dad wandering and is exhausted.
I have spoken to social services. Mum and dad have hardly any savings so I think would qualify for help. Mum thinks they'll just send someone in on a morning to get dad showered and dressed and again on a night to put him to bed. What are other people's experiences with this support?

I've asked mum to consider day care for dad but she won't consider this because she said they won't change his pull ups if they need changing. Is that other people's experience?

She won't consider putting him in a care home because she promised him she never would when he was first diagnosed.

She has said she might consider a weeks respite care but is worried this might make him worse. It feels line everything I suggest that might help her, she has a reason not to do it.

How do other carers balance having a life themselves whilst also trying to do the right thing by the person with dementia?
Sorry for the long post, I just don't know how to help.

 

[MartinWL]

That promise often has to be broken and should never be made. We would not promise never to let our loved-one go into hospital. It is little different.

For now visits by carers to the house will reduce the strain on your mum, so you need social services to visit and asses his care needs.

 

[Jaded'n'faded]

Your poor, poor mum. She's tied herself into an unrealistic (but well-meaning!) promise so you need to help her re-think it so she doesn't feel guilty.

Your dad needs to be in a care home now. It's far too much to expect your mum to deal with him 24/7. It's no wonder she's so frazzled and I suspect she has reached Carer Breakdown. There are two people caught up in dementia here - your father, obviously, but your mum too and she is entitled to a decent life! It's just not fair to do everything for your dad and nothing for your mum. I'd say push for the respite first, then work on your mum. Somehow you need to persuade her that the most important thing for your dad is to give him the help he needs, wherever that may be. A care home would have a whole team of people, day and night, not just one exhausted person. There would be activities in the day, people for him to talk to, etc. And your mum could visit him there and be his wife again, not his carer.

It may take a while to make all this happen as you say your father will need council funding. What they will do first is put carers in at home. They will go as far as 4 daily visits if they deem it necessary. The crux point is usually when the person with dementia is active at night or dangerously wandering outside. When SS decide he is no longer safe at home, even with 4 carers, they will move him to a care home. (I should point out it's often very hard to make them do that when there are family members around, as they try to heap responsibility on them to do all the work. You have to persevere/insist.)

BTW, try to get across to your mum that respite will not make your father's dementia worse. It gets worse all by itself, inexorably. And if your mum has a breakdown as a result of the stress she's under, she won't be able to care for him at all, so her health and wellbeing are equally important.

 

[Violet Jane]

I feel sorry for your Mum but if she won’t accept help then nothing will change. She made the promise to your Dad when she did not know how bad things would get. Dementia in its later stages is much more than mere forgetfulness. You could sell your father’s move to a care home as something that would enable your Mum to become a wife again, rather than just a carer.

Unless there’s a crisis or an extreme deterioration in your father’s condition or behaviour then, as has been said above, SS are likely to try carer visits first (up to a maximum of 4 a day) before agreeing to a move to a care home. It sounds as if your family is under the radar as far as SS are concerned. Until your family is on their radar they won’t do anything.

I hope that you manage to persuade your Mum to accept help.

 

[nitram]

>>>this<<< describes all the help that is available.

If they have not already been done the first thing to do is to contact the local authority and arrange a needs assessment for your dad and a carer's assessment for your mum.

As has been said it often requires a crisis to get any action.