Dad wants to move house and is living with dementia

[hellomcbride]

Hi, I'm new to the forum and have been looking through the various discussion topics but not yet found a good match for my situation so I thought I'd add a new post and see what replies come back.

My father is 82 and was diagnosed with mixed dementia around August 2022. His diagnosis followed a period of several weeks spent recovering from delirium after a stay in hospital with pneumonia (caused by covid).

My mother passed away in June 2022. Dad had been showing signs of memory problems and associated frustration/agitation for several months prior to that, and Mum had mentioned it to me that she was finding him hard to manage.

Mum's medical cause of death was renal failure, but in essence she had stopped eating and drinking properly and had been refusing all help from me and denying the problem for many, many weeks until eventually she had no strength left and was rushed to A&E. She died 4 days later. In my view Mum was battling with mental illness due to the death of my sister in 2021 (after 12 years in care) and the prospect of caring for my father with the onset of dementia.

My father is a strong-willed and stubborn man. He is also very private, and not a sociable man.
He does not accept the diagnosis of dementia, nor that he has any memory problems. I cannot reason with him on that front. Despite this I have managed to get him to accept a live-in carer at home and that arrangement has been in place now for 6 months. Whilst he has fallen out with his carer on a few ocassions, they have managed to get along reasonably well overall. The carer keeps the house keys safe so that Dad doesn't go wandering off without someone knowing where he is.

Dad was recently notified by the DVLA that his drivers license will not be renewed because he is not deemed medically fit to drive.

I’m finding it very difficult at the moment because my father is feeling very restricted and ”penned-in” in his own home because he no longer is able to drive his car and he’s only allowed out when accompanied by his carer.

In his words, he wants to “get out of this place and move to Hampshire or to another country”. He believes that he will have more freedom elsewhere and that he won’t be under such close supervision as he is currently. He refers to Hampshire as 'home', but he hasn't lived there for over 50 years. He won’t tell me specifically where he wants to go, only that he wants to get out of where he is now. He feels in-prisoned.

I don’t know how to deal with this situation and the constant frustration that he is experiencing and verbalising to me. I want to be able to help him, but I don’t want to orchestrate a move to a place that will place him at risk without the support of a carer, or cause further agitation by him being in unfamiliar surroundings. Not to mention him being further away from me (his son) and his 3 granddaughters. I can’t contemplate the prospect of selling his house and helping him to buy or rent another knowing that it is highly likely in the near future that he will need to move again into residential care to get the level of support that he will need for his condition.

I’m sure other people will have encountered this situation with a similar character to my dad, so I would really appreciate input on the strategies that others have used that have proved successful.

Thanks in advance for your help.

A

 

[Sarasa]

Welcome to Dementia Talking Point @hellomcbride .
First of all I'm sorry to hear about your mother. I wonder if she was hiding from you how advanced your father's dementia had become.
I think helping your dad to move somewhere further away from you would be an extremely bad idea. People with dementia often think that any problems they have will go away if only they move elsewhere. I wonder if a move to a care home might be better for him. If you find the right one he might not feel quite so hemmed in. Certainly it sounds that he wouldn't be able to live independently. Have you spoken to his carer about how he is? He might be saving all his frustrations for you and be more settled than you think.
This is a very friendly and supportive site and I'm sure others will be along shortly with their suggestions.

 

[canary]

Hello @hellomcbride and welcome to Talking Point

What you are describing is part of the "want to go home" compulsion, which is almost universal (in some form or another) in mid-stage dementia.

It is not about bricks and mortar - it is a state of mind and reflects the anxiety of coping with dementia. People with dementia at this stage do not realise that they have anything wrong with them, but they are aware, deep down, that Something is not right. They do not realise that this Something is them though, so they blame other people, or think it is due to where they are living. They want to move somewhere where they felt safe (often a childhood home) and think that they will leave all the confusion of dementia behind - not realising that they will merely take it with them.

If you pull out all the stops and enable a move to where he wants to be, Im afraid that he will be no happier and may decide that he wants to move again. Id just keep distracting him, or kicking the can down the road. Looking at details of properties (none of which will be suitable and Im sure you can think of reasons why they wont be) may occupy him for quite a while, but this compulsion is very strong.

 

[hellomcbride]

Thanks for reading my post and replying so soon @Sarasa
I think the combination of self-isolating due to covid, and Mum's natural tendency to shield me from a bad situation are 2 explanations for how things got to where they did. There was a tipping point somewhere where Mum went from being a fit, healthy and mentally strong lady to a state where she couldn't see a happy future.

I have started looking at care homes because I expect that time will come sooner or later and I want to have a plan. So far I've only been to homes that cater for dementia and whilst they seem very good, my sense is that Dad will feel even more penned-in there than he does now at home.

I have a good rapport with Dads carers and their view is that he is not ready to move into a care home yet - for the same reasons about feeling even more restricted and also surrounded by people who he feels he has nothing in common with.

I'm due to visit a residential home tomorrow which is on the same site but separate as a dementia & nursing home. I'm scouting these homes out on my own before I consider showing any of them to Dad. My hope is that this particular home might appeal to Dad as somewhere that offers a little bit more independence, whilst offering a future pathway to a dementia care home setting that is already a little bit familiar to him when that time comes. That said, I fear that he will see it and quickly dismiss it as somewhere that is totally inappropriate for him. We shall see.

A

 

[Mumlikesflowers]

Personally I think it's amazing you managed to pull off the live-in carer thing. Perhaps he does need some day activities on his own more though? My Dad isn't the one with the dementia but since we moved him to sheltered accommodation, we managed to find a male friend through the church who takes him to Sainsburys and its his highlight of the week. A supportive male to bond with has huge value.

Certainly I think that there are phases, which do shift, although may feel permanent. Seems to me he's in the right place and the best thing might be just to acknowledge the urge to move. 'I can understand' 'I can see why you would feel like that' etc etc

 

[Violet Jane]

Moving your Dad is a bad idea. It will only confuse him more and, as you say, it's much better that he be closer to you. You say that your Dad's not sociable but are there any clubs or places that your Dad could go to, with or without the carer? They don't have to be specifically dementia-related. Some posters have found Men's Sheds successful. Community / park gardening clubs are also possible. Your Dad would be outdoors and it wouldn't matter what he did (within reason). Local walking clubs are another possibility if either you or the carer were prepared to accompany him.

With dementia, there is, unfortunately, a lot of unhappiness and dissatisfaction which you can't do anything about as it's the nature of the disease. In trying to keep your PWD safe and cared for s/he does lose a lot of independence and choices in life. That's why it's such a devastating disease.