Rapid deterioration and not sure what's next

[JoMcFlurry]

Hi everyone

This is the first time I have posted. My step-dad has had a very difficult 6 months. He has a number of physical problems and in the last 6 months started to display mental problems too. This started with paranoid delusions back in March this year with accusations against my mum of having affairs, spending and stealing money, poisoning him and strangers coming in the house and breaking his things. It was happening a couple of times a month to start with. We got MH team and GP involved and he had a brain scan which showed some damage. A psychiatrist assessed him and confirmed damage and problems with cognitive function.

Over the next two months the occasions of delusions increased to almost once every couple of days along with changes in behaviour and personality - stubbornness, very disturbed sleep, forgetfulness. He and my mum have been visited by a CPN on a fortnightly basis. He has also been into respite care for a week. He is already urinary incontinent due to his physical illness but during this time he has also been getting a lot of diarrhoea. Colonoscopies and abdominal scans have found no particular issues and I wonder if it is related to his brain?

By the end of July he was a lot worse and my step-dad saw a Neurologist who diagnosed Lewy Bodies Dementia and gave him some patches of Rivastigmine. In the last few weeks he has deteriorated significantly again. He is now virtually constantly in a state of confusion with constant delusions and/or not really making a lot of sense. His sleep patterns are very disturbed at night while he falls asleep at the drop of a hat in the day, which I understand is common for Lewy Bodies. He has also started with some tremors and spasms similar to Parkinson's as is typical for Lewy bodies.

My mum is really struggling to look after him and cope along with his physical disabilities and she is registered disabled herself with chronic arthritis. Both of them are only in their 60s and currently get half an hour of social care each morning to help get my stepdad out of the bath and dressed.

I know it's hard to predict the prognosis and future but this all seems to have happened so quickly. I am going to get his social worker to call a multi-disciplinary team meeting about his care. My main question is how bad does he need to be before we start talking about him going into a care home? On the one hand my mum can't go on much longer but on the other she's just not ready mentally for him to go into care. I'm also not sure how high the bar is set for eligibility for this from social services?

I'd appreciate anyone's thoughts and advice and general support. It's been a nightmare so far and I know there's a lot more to come!

Sorry for rambling on!
Jo
X

 

[rajahh]

I don't know if any of us are ready mentally to let our partners go. If your Mum is registered disabled then she should really think long and hard about how much more she can cope with.

I am in the process of placing my husband into Nursing home, and what helped me the other day was I was kneeling on the floor helping him with his socks, and as usual I nearly passed out, I suddenly thought if I was a care assistant I would have been signed off work by now.

Think loike that about your Mum. would she have been signed off work by now????

Sometimes you have to shout for more help, and maybe you will have to be your mothers voice.

Jeannette

 

[JoMcFlurry]

Thanks Jeanette. She really does struggle and over the last two years (before the dementia) I have persuaded them to get carers in on a morning and have a stair lift fitted. She is now getting no sleep at all due to my step dad's disturbed sleep and spends all day running around trying to keep him calm and pacify his delusions such as buying 5 different types of milk, food, cigarettes etc. I am softly, softly introducing the possibility of him having to go into care but I'm just not sure how 'bad' he needs to be for social services and health to agree to this. He himself in his more lucid moments as said he needs to go into a home as it's too much for her.

Like you say though accepting that after 30 years of marriage is unbelievably hard and cruel. I would be heartbroken if it was my husband. I am trying to do as much as I can for them dealing with all the professionals, getting advice and support etc and visiting but as I live 75 miles away she has the daily challenge of looking after him.
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[JoMcFlurry]

Jeanette I should also have said that I hope things go well for you and your husband as he moves into the nursing home.x

 

[oldbones]

My husband has the same symptoms

Hi, This is my first time on this forum, and was amazed to see what I thought were almost exactly the same symptoms as my husband's. We have been married 53 years and the most hurtful, was the constantly being accused of poisoning him. I have had the affairs accusations, the sleeplessness, the 'you never agree with me' stance. I have thrown so many item of food away it is unbelieveable. Milk, gravy granules, oxo cubes, anything cooked in a halogen oven, and anything brown or black because these could have been poisoned by me. I now have top buy 2 or three pukka steak and kidney pies a week, so that he can put it straight from the packet into the microwave and on to his plate without me touching it. I sometimes feel so frustrated, but I am learning to just agree with whatever he says, and that stops any potential arguments. It may be that if your mum got in touch with social services, they may be able to get daycare for him. My husband goes into daycare 2 days a week, which allows me a to have a little time to restore my energies, (which at 71 I have little enough of). Thankfully, my husband is not incontinent (yet), and he is obsessively clean. I hope your mum can get him at least a couple of days respite. Although it might cost a little/lot of money depending on her financial circumstances, at least she would be able to have some ME TIME. The saying 'go with the flow' seems to apply. Good luck to your mum.
Anne

 

[FifiMo]

Jo,

In answer to your question they would agree to residential care if his needs cannot be met at home and one of those criterion has to be carer breakdown where your mum can no longer cope. There are options you could explore with the SW though. Extra care visits? Doesn't relieve your mum of the caring role for the remaining 22 hours a day though. How about day care? That would give your mum time to catch up on sleep and recharge her batteries wouldn't it? It could also be that stepping stone to residential care as your mum becomes accustomed to him being out of the house during the day.

Failing that, make sure your mum gets all the financial benefits she is entitled to eg no council tax due to him having severe mental impairment, DLA too as he is under 65. Then she can perhaps use the money to buy in some care or pay for a sitting service to give herself a break.

Fiona

 

[JoMcFlurry]

Hi Anne and Fiona, thanks for your replies.

Anne has your husband been diagnosed with Lewy Bodies dementia? It does sound very similar. He has been saying that he sees black bits in all of his food and won't eat it, which I think are hallucinations. My mum still finds it hard not to try and rationalise or argue with my stepdad which makes for a very fraught environment!!

Fiona since I posted in August social services come in for an hour a day to do the bathing and dressing and my stepdad goes to a day centre once a week (if he'll go!) he is in respite again this week for the third time since June as my Mum is on her knees! He continues to deteriorate and we are finally having that multidisciplinary meeting with social services and health on Tuesday. My Mum is coming round to the idea that he needs to go into a care home but she doesn't want to do it until after Xmas. He has some very lucid moments/days in between a long list of symptoms and many bad days. That's quite common for Lewy bodies apparently and I'm just not sure if he'd agree to go or if he will be assessed as having capacity. We'll see. It's mentally exhausting and so very sad.

I didn't know about the council tax. I'll look into that thanks.

Jo xxx