Feeling guilty

Hi everyone,

My grandad has dementia and alzheimer’s and is currently at home with care. We have tried everything possible to keep him safe and at home as long as possible. He now is at the stage where he cannot be left alone due to his challenging behaviour, including banging on his windows at all hours during the night.

We have had multiple neighbours complain to the police and when his carers try to discourage him, he has used his head to bang! It is now at the stage where he needs 24 hour support as cannot cook/wash/dress himself and also cannot communicate effectively. We cannot afford 24 hour care so our only option is a care home which the dementia support services and local council are helping with.

The issue that I am having is dealing with the immense feelings of guilt, and as the move out day gets closer, the feelings of lowness and despair are increasing. I feel so bad as I have had to make the decision as an LPA in his best interests, but I know that when he was well he would definitely not have wanted this.

It is also hard to deal with that he will not know that he will never be going “home” and whenever he smiles at me, I feel like I’ve let him down.

Has anyone else had these feelings, and what did you find helped? I’m a rational thinker and I know the risks vs benefit but it my own feelings that are making me feel so low.

Thanks for any advice in advance

Natasha, it is a very SAD situation when a relative NEEDS more car than the family can give.
My brain damaged son moved into boarding school, then residential care, when he was 16. We had exhausted all 14 respite options locally, and I hadn’t had a break for 2 years. Finally I was so run down that I needed 14 courses of antibiotics in 12 months. My GP told Social Services that he MUST move into residential care. We’d exhausted all other options.
It was the same with my mum, we’d tried carers, but in the end she needed 24/7 care.
It’s the same with your grandad, he needs specialist care until he passes away. Sad but true.
How is the care going to be funded?

We are looking to have the NHS continuing healthcare, the social worker is helping us to organise, plan B was to sell the home but we may not need to if they agree this funding

It is very sad and I know it is best for him, I just can’t help feeling so guilty

Hello Natasha
My lovely late husband needed to be in a nursing home. Not what I or my family wanted, but he certainly needed it. Vascular dementia and other complex needs. Feeling guilty didn’t change that. Just made us feel ill. I realised it wasn’t any help to my husband, so care managing his needs was my priority. Feeling sad and even devastated is different to guilt. Try to shake the guilt monster away.

Thank you Pet66, it really is a whole range of emotions from a deep sadness to guilt, and I am sure I will feel a bit lost as have done everything I can to help him over the years. I just hope that when he goes, and I visit he will be smiling and happy. Just heartbreaking :broken_heart:

You don’t have to sell the home, if his wife is still living there! The value of the house is completely disregarded. I had a battle with SSD which ended with them refunding £8,000. Social workers do not always know as much as they should.

Unfortunately my nan passed in 2015 so the home would potentially come into it. If he is approved for nhs continuing healthcare then we shouldn’t need to sell immediately. You’ve been through a lot bowlingbun, hope you’re ok

Apologies, Natasha, I didn’t realise.
I would suggest that you talk to our CUK Helpline for formal advice, as there is a lot to consider that SSD won’t neccessarily consider.
Their aim is purely to avoid contributing financially to his care if they can wriggle out of it!

Were you living with him at all?
Would you like to live in the house one day?
If so, there is a scheme whereby the LA pay the fees, but put a legal charge on the property.

The first few weeks ( I think it’s 12, from memory) should not consider the value of any property, in any case, just income.
If he is going to be self funding, make sure he still receives Attendance Allowance.
Also, make sure that he was claiming exemption from Council Tax, this exemption can be back dated to the day of diagnosis. Some people have had as much as £8,000 refunded!