Should we move my widowed dad with dementia?

[dollydaydream1978]

Hello!

I have a real problem here and don't know what to do about it. My mum passed away three months ago and my dad, 78, is now living in their house on his own with mild dementia. I am insistent that I do not want him to go into care, which he is very worried about, and myself and my daughter and son are caring for him several times a day. We live eight miles away and spend several hours a day with him and caring for him. He's very lonely and seems depressed and anxious, especially at night time and always asking if we're staying over that night - and even offering money to my children to stay (no, we don't take it!). My dad is originally from Cornwall and lived with my mum there for the first thirty years of his life before moving to Suffolk. I've discussed us all moving back to Cornwall with my dad and my children, suggesting that we sell his house and buy two houses next to each other and we've found a lovely place we think is ideal, and money is not an issue regarding this move. This would solve so many problems and we've always intended to move back there anyway. Sometimes when we discuss it he is very keen on the idea and other times he says that he can't face moving and all the hassle etc... when he is having a bad day, despite my reassurances that he would not be involved in the moving arrangements. We would be living next door to each other and be there on-off day and night and be able to care for him properly. He sometimes mentions that maybe he would be better off in a home because it would be easier for everybody and this is something we are adamantly against unless there are no other options.

Should we go ahead and move to the place which he loves and grew up or keep him where he already is? Thank you very much for all advice! x x x

So sorry for your loss, i would keep him at home until it's no longer safe to do so.

Seek out help from age UK and the Alzheimer's society for a befriending service and also for lunch clubs, social clubs etc and community transport options.

If you feel he needs more than that then call social services to discuss careline and other support options.

Good luck it's a horrible disease.

In haste - dementia can get suddenly, markedly worse with a change in surroundings. not a professional but may be better that he stays put and you move nearer him. get professional advice or from one of the charities.

hugs and it is so hard.

Sorry for your loss.
How "mild" is his dementia if he needs people coming into care for him several hours per day?

Why do you not want him in care?

Bare in mind that dementia can progress really rapidly, and you may end up really regretting committing yourself to care for him next door. Also, any move will potentially affect his brain and his memory.

Going back to Cornwall may be like a move back in time, to a time where he was young, and with his wife. It may be difficult to persuade him she is dead, and he may go through a new bereavement every day, or not understand where she is.

I sympathize, mum has Levy Body Dementia, and has lived in a home for the the last three years. It is what is best for her. Hard for us, but good for her.

The increased support vs. increased confusion will have to be weighed up.

I would strongly consider the move, as you can then put alarms and safety items which you will be able to hear.

Sadly my nan is now so much of a danger to her self that a care home is our only option. Walked in her home a few weeks before another hospital admission due to falling in the night, the find her trying to cook runner beans in oil.

Hi all, thanks for your replies! Yep, lots of decisions needed to be made and I'm so sorry ICanSeeTheSun and QuintsKazooo for your problems - I sympathise!

He has been like this for the past three years now and hasn't got very much worse and has been stable for the past year. It took a few reminders for him to fully realise that mum is gone and now he is very aware of it and the cause of it. I'm just very torn...

As I'm sure you know, dementia is a degenerative condition. He will get worse. If he's otherwise fit and healthy, there may come a time when you simply won't be able to cope, so try not to be too adamant about never putting him into a care home. If his mind deteriorates faster than his mobility, you may have problems with him leaving the house and wandering. He will need 24/7 supervision.

If you are going to move him to Cornwall - and I wouldn't do it just for him, only if it would primarily be a good move for you and your family - the sooner you do it the better, so he has a chance to adjust while he is still able to. It's impossible to predict how he will react. Dementia patients often revert to previous times in their lives and if he is able to recognise old sights it might be a comfort to him. On the other hand, the move itself may hasten the progress of the condition as he will be confused by living in a new house where things aren't where he is expecting them to be.

I'd also check out social services for the elderly in the area you are planning to move to. You will be needing a lot of support. Perhaps ask on Mumsnet?

Best wishes, OP. My mother had dementia for 5 years before she died and it's such a sad decline.

Just to add, my grandmother had dementia and lived alone. Even with her house only a short trip away (a minute's walk) it was an incredible strain on the family simply because of the way dementia sufferers can be. They can believe they're going to work and wander off, try to cook and forget, things like that, it's a constant worry to have them alone. We continually found my grandmother 'ready for work' with her coat on or a teabag in a mug of milk. It was an impossible situation.

A lot of care homes can provide happy times, a relative of DP is in one and the residents seem happy and well cared for.

I can't answer your situation for you, just add my experience.

That's the thing - each day he is different. One day cheerful, more alert and dressed and other days depressed, confused and still in his dressing gown.

Before my mum went into a care home, life was very bewildering for her.

She would do her shopping, without knowing what she needed. She would put her shopping away in odd places, and be sad and confused because she had no idea where things were. She would say "I am sure I bought cheese. Where is it?" Then she would spend hours looking for the cheese, without remembering where she had already looked. I would be called up on to help. Not because she so desperately needed cheese/toothpaste/cauliflower, but because she wanted reassurance that she was not going mad! The cheese/toothpaste would invariably be in her toiletry bag/linen cupboard/laundry basket.

She would cook dinner, clear away, have an after dinner nap, wake up, forget she had dinner/nap, and start making dinner again.... Or forget she had eaten, but remember cooking, and call me in tears because she could not find the dinner she just cooked. Somebody had come in and nicked her dinner! She would forget how to cook, and in the end make porridge every day saying "Its been so long since we had porridge, lets have porridge". I remember her last apple cake. She dumped the cake mix on an oven tray, with sliced apples in a heap. (no cake tin) and she was surprised at how it turned out, yet at the same time so proud of what she had made! She was beaming, she rang me to come and have cake. It was beyond sad to see a woman who could turn out the most magnificent baked creations beam in pride over a lump of dough with apple pieces on top.

Then she started getting up at 4 am, and without a concept of time, wanting to go visit her mum (dead 20 odd years)....
Or cook dinner. Go to bed with food on the stove.

Then she rang me in panic from holiday, because she wanted to go home. She did not understand why she was on holiday, and in such a terrible place. She did not like the cleaners and chamber maids, they were noisy and intrusive, there was a couple shagging in another room, and the view was terrible. She said she did not know where anything was in this hotel, and could not manage. Needless to say perhaps, she was in her own home, and had not traveled anywhere.

If he didn't have the dementia the depression is a natural part of the grieving process, it's also a very natural part of the dementia process too. Spending all day moping around in his dressing gown is no big deal, i do that when I'm upset and I don't have dementia. It's a concern if he's doing it because he's forgotten how to wash and dress or forgotten his routine.

Speak to his geriatrician or the memory clinic about how to manage the grief whilst managing his condition, it won't be an unusual situation for them to have had to deal with

Dad has alzheimers and mixed vascular dementia. Fortunately he still has my mum. They had to move a month ago as he needed a walk in shower.

He was terribly confused for about a fortnight and we were seriously regretting moving him.
Fortunately he seems to be settling now but he has days when he just walks around the bungalow shaking his head and mumbling that he doesnt live here.

Dad is quite advanced with his dementia now and the only regret we have is not moving sooner, before he got this bad.

Personally if moving your dad means you will be better placed to support him then id do it.Good luck to you.

I think in theory it sounds like a lovely idea and you are obviously very committed to supporting your father.

I would talk through with Age UK; moving house can be a big upheaval, and I'm sure he'll have lots of memories of your DM at their house, and it can be hard to leave that behind...on the other hand, some people find it adds to their sorrow staying in the house where they lived with a loved one who's now passed away.

Thinking of practicalities, how quickly will you be able to move? Presumably, both houses would need to be sold first to fund the move, what if one sells and the other doesn't, or they sit on the market for a couple of years? As you will be all too aware, it is a progressive disease, and whereas he might be able to cope with a move now, twelve or eighteen months down the line, he might not be able to.

If he does need to go into care, they might view the sale of his house as deprivation of assets if it was used to fund the purchase of your house as well, would that be an issue?

It's a horrible thing to go through good luck with it.

Having mine and DH's grandparents with dementia, I can relate to what the other posters are saying.

Dementia patients do deteriorate over time, it's the going to the shops and buying the same thing over and over, telling you they've had a shower today when they haven't, turning off the oven, burning pans as they've forgotten they've left it on, having the same conversation over and over, worrying about things, getting up in the middle of the night and wandering around not knowing where you are, getting aggressive with loved ones despite never having been aggressive before. It goes on and on.

Don't underestimate in a few years what life might be like. Why set you so against a home? How about a care package? Dementia can result in 24 hour care, so if you do move don't isolate yourself and don't think you can do it all, there's nothing wrong with asking for help.

My family help my grandad and find it very stressful the worse he gets, and he has carers that pop in.

Firstly I am really sorry for your loss and that your Dad has this condition.

I would only say that you need to remember that you are all grieving and not to make any major decisions right now. If you are managing at the moment, it may be better to wait a while before doing anything.

Dementia is a cruel condition and you will need to consider all options before deciding what to do.

It breaks my heart visiting my nan.

She is in hospital atm, she doesn't remember me and thinks I am there to hurt her or steal from her. I am really debating if it's worth me visiting her in my normal clothes because I seem to be making her worse. However if I am in my work uniform ( I work in a hospital) she is fine with me.

I think it would be good to consider a move so that you can be together. However, as someone who lives in Cornwall, with a mother who has dementia for some years (she lives nearby with my Dad) I would say that you should look very carefully into the level of extra support and care you can expect in Cornwall, as opposed to other parts of the country.

Cornwall is a very poor county and services are pretty stretched (even if you have to pay for your own care). They are also faced with the extra problems of operating over large areas in a very rural region of the country. I have no criticism of the quality of care we have had (mostly) but there are problems we have faced due to being down here (distance from hospitals etc).

Do do some careful research into this aspect of things before committing to the move.

I feel for you, having lost both parents where dementia was an issue.

I would move, as the constant thing will be family with him, and more frequently (but look into the local support too) Good luck.

I got massive support in Chat getting my uncle moved into residential care near me rather than being placed in residential care 100 miles away (all hcp said residential was absolutely needed).

He allegedly doesn't have dementia, but moving along from that, he had started to deteriorate for a while, quite slowly. I spoke to him daily and gradually he was getting worse. It hit a crisis last summer and he had to go into hospital then again in the autumn.

There are lots of issues about whether it was dementia or an infection that led to confusion that I am sure a lot of relatives can recognise. However the change from his home (which afaik he hadn't left for six months) to hospital really set him back. He was completely away. He came back slowly then had another relapse when they moved him temporarily to a nearby residential home. He had another really interesting relapse when he moved to Leeds but was starting to get settled. Then he needed a scan on his kidneys so went to hospital and I went with him. He started off okay but went downhill really rapidly with the strain of the change of surroundings. It went from chatting (loudly - he won't wear his hearing aid) about general stuff to repeatedly asking where he was, confused about which hospital he was in (Leeds, Liverpool or Wrexham - he never got it right once), and when I threatened him with my late mother he told the nurses she had been dead six months. She has been gone over ten years. You could almost see him crashing further.

My experience is limited and a lot can be explained by my uncle's infections, but moving someone with dementia can be really risky and trigger worsening of the condition when they are out of their familiar surroundings. You may find it easier to just move nearer to him, if he has good medical support. Also, don't write off residential care. A human being cannot be on watch 24 hours and sometimes that will be needed with dementia sufferers. I visit most days and I know he is getting better care than I could give him.

TL:DR - moving your father could be really risky, and probably best to get a specialist opinion.

Good luck. It is really hard.

Dolly, it sounds like you want to do the best thing for your father, and I admire that.

But nothing, nothing can prepare you for the realities of advanced dementia. I would always have a care facility plan as a back up. Crisis situations have a habit of sneaking up on you.

I plan on telling my children to arrange for the experts to take care of me if it ever comes to that. I know they'll visit, I know they'll love me. But they can't be responsible for me.

I suggest you post on the aged care boards. Good luck.

What would be your plan for what you would all do in Cornwall after your dad passes away? Would you be giving up your job to care for him? Would your possibly adult children be content with putting their lives on hold to help you care for him? Dementia patients can sometimes become very violent, even if it wasn't part of their personality before and the care needed is pretty full on (soiling themselves etc). There's a good site -agingcare.com- which has forums and it's probably a good idea to post there and get advice. We're sort of facing the same with my 88 year old grandfather at the moment - he's just moved into a village but it's a self-care environment and we're concerned that he may have left it too late and needs more care. I am his only relative left in the city , his children all live far away or overseas and even then, I live an hour away by train (we don't have a car).

I was a professional social worker working with older people with dementia. Moving from familiar surroundings was pretty much always detrimental to their ability to cope, sometimes alarmingly so. Only move if you have to.

Do your children want to become carers? You don't say how old they are but do they not have jobs?

Caring at the minute may be mild but when his dementia deteriorates and potentially he's wandering around at night, leaving the gas fire on, weeing on the floor and becoming aggressive it's a whole different ball game and something I know my mum would not want me to have to deal with. Intact both mine and DH's parents are putting things in place before they get old so we're not potentially suddenly left to deal with this.