Moving home to accommodate mum

[SussexDave]

Mum is very fragile and after talking to my friendly Alzheimer’s society advisor we agreed that a care home is not the best option.
My own home is not big enough or suitable for someone with Alzheimer’s so my partner and I have decided to buy a more suitable house and move mum in with us (mum needs 24 hour care).
There are obvious difficulties with this strategy e.g. coordination of the sale of two houses and the purchase of a third but I am sure there are other problems I have not even dreamt of.
Does anyone have any experience of this and if so please could you offer any advice on what went well what did not go well, any unforeseen problems, anything you did but with hindsight you would have done differently.

 

[Grannie G]

I have no experience or advice to offer but wish you well.

 

[sussexsue]

Hi

(feels strange responding from a SussexSue to a SussexDave).

Yes we have done what you have done. We sold one house, bought a new one with a temporary mortgage until the second one sold. Moved in ourselves and then mum moved in a couple of months later. If you follow this route I think you need to be careful that if she needs residential care later (and never say never), that there are enough funds for this without having to sell again which could be very hard on you all. Care costs in Sussex range from about £700-£1500 per week.

I presume that as your mother needs 24 hour care that either one or both of you are not working and will be there for her 24 hours. Can I ask, does she need the care because she is not safe or because she needs physical care.

My mum lived with us for over 3 years. The only way it worked was by her having her own space (in our case she had her own self-contained lounge, kitchenette, bedroom and bathroom). It worked very well for most of the time, but towards the end of her living with us she just followed me around everywhere and that is when I could no longer cope. My inlaws live with my SIL and although they have their own rooms they are not self-contained and this doesnt seem to work as well.

We never had carers in, as mum was mostly continent and able to dress herself. However when the dreaded infections took hold I had to take over all personal care. There were many times when she lived with us that I felt like a prisoner and it took quite a heavy toll on my own health.

Financially we worked out exactly what it would cost having her live with us. She paid a quarter of all bills and a fixed amount for food, transport, etc. We reassessed this amount each year and adjusted the standing order. My once generous mum became very mean when Alzheimers took hold so it was good to get finances established at the outset.

Once living with us mum rapidly stopped helping in any way. To start with she made her own breakfast and lunch, but we soon realised that she couldnt be bothered and just had biscuits, so I then prepared all her meals. Then she stopped eating in the evenings so I had to cook for her at lunchtime. If she ate with us she became quite miserable with brought us all down, so effectively she was living in her own little care home attached to our house, with me as her 24/7 carer. She did go to Day Care twice a week (£50 per session), which gave us a bit of a break, and had her hair done weekly (another hour of freedom).

For the last 6 months of her life she went into a Care Home, which was the most wonderful place. I only say this because if it doesnt work out for you all, or you can no longer cope, then dont rule out a Care Home.

I dont think I would have done anything differently, but my expectations of the situation were very different from the reality. Caring for someone 24/7 is very hard and takes a lot of adjustments. My sole focus in life was looking after my mum and my needs were definitely bottom of the pile.

 

[janicemlb]

Hi SussexDave

I moved into my mum's house 18/12 ago to care for her as she too needs 24/7 care (she is 88, has severe Alzheimers and is incredibly frail, with mobility and eating issues.) I gave up my home and life in Australia to facilitate this and I am her sole carer. My experience is (obviously) a personal one and does not involve the selling and buying of houses. However without that to deal with, it's been enormously difficult, an emotional nightmare at times and I urge you to think very carefully before you take this on. I love my mother dearly but the majority of the time she doesn't know who I am although she usually recognises me as someone familiar.
As Sussexsue has accurately said, you can feel like a prisoner, I don't go out for days on end, similarly my expectations of what living with Mum would be like are so far off the reality that this disease presents us with.
I have found with Mum that no two days are the same (mood wise) and she relies on me for everything although (of course) doesn't recognise it. It's a really really tough job and again as sussexsue has said, can take a toll on your health (especially your mental wellbeing), the only time I can put myself first in when I arrange respite (but then there's the worry asociated with that). Just re-reading this I sound incredibly negative and I'm absolutely not like that (!) it just can be so rotten at times but it's not for ever and again I urge you to really really think about it. My mum has recently qualified for CHC funding so I may decide to go down the Nursing Home path, it's a tough one ...
Good Luck, sincerely
Janice

 

[SussexDave]

Dear Sue and Janice,
Thank you so much for your quick replies. I feel like our neighbours have come to our help. My partner and I live in West Sussex and my partner is originally from Lancashire.
I am extremely grateful for your advice and I think it will be very helpful as it highlights some of the things that have been worrying me.

Last December we found mum in a terrible state, very dehydrated, only 5 stone in weight and giving the appearance of someone who had just suffered a stroke (luckily this was just appearance and tests ruled this out). I immediately moved in with mum and she has now gained weight, is no longer dehydrated and many of her other symptoms have massively improved. Mum had been living alone but with carers calling in twice a day (mum hates anyone other than family coming the house and the poor carers suffered much verbal abuse).

The main reasons why mum requires 24 hour care are: she needs prompting to eat and drink (the carers could not get her to do this) and she needs reassurance especially at night. I recognise Janice’s experience with the ups and downs, this is something I find very difficult especially when a bad day follows a good one. Physical problems are not currently an issue but she does need help to clean up after a toilet “accident”, fortunately not that common and the pull up panties help.

Mum very reluctantly attends a day care centre once a week, I tried to make this twice week but mum refused and any attempts at increasing the frequency of visits caused much anxiety and made it difficult for me to get her to eat.

Fortunately my partner and I are both retired so work was not a problem but we have now been apart for six months and we are both anxious to get back together (mum’s house is about 200 miles from ours).

Our intention is, as you say to create a self-contained area within the new house to give mum her own space and help maintain my partner’s sanity.
I have not ignored the possibility of a care home eventually but would only be an option once mum reaches the stage when she doesn’t recognise who is caring for her and is oblivious to those around her. I have taken legal advice on what to do if, in the future, we need local authority assistance and how to make financial arrangements for this eventuality. I checked out a number of care homes including a couple in West Sussex which seem very well set up in terms of facilities and staffing levels but confirm the costs you gave.

So far we have had our current houses valued and requested estate agent notifications for the type of house we would like to buy.

I will take all your comments on board and cannot thank you enough for your support. You have shown the way and I hope I can live up to your example.

Thanks also to GrannyG

Very best regards
Dave

 

[Witzend]

Our intention is, as you say to create a self-contained area within the new house to give mum her own space and help maintain my partner’s sanity.
Dave

Do please bear in mind that even if she has her own space, there will almost certainly come a time (sooner or later and maybe sooner) when she will not stay in it, and will not remember from one second to the next, and no matter how often you tell her, that that was the arrangement.

Sorry, but sadly, that's the likely reality.

 

[Chemmy]

How does your partner feel (honestly) about this?

Caring for your parent is one thing. Caring for someone else's parent is quite another.

 

[DAISY32]

Caring at home

CONGRATULATIONS FOR CARING FOR MUM AT HOME.

I have been caring for my husband at home for 7 years. He is in the advanced stages of Alzheimers.
I look after him round the clock. My daughter claims carers allowance (she lives with us and helps all the time) Bill gets Disibility Allowance, so we use this money for his comforts. A carer sits with Bill whilst we do the shops.
I never wanted Bill to go in a care-home. Make each day as a new day. Say all the things you want to say , they understand, even if they can't talk back.
I have never regretted looking after Bill at home, he was only 64 when diagnosed.
I wish you all the luck in the world. The key here is postivity. Best Wishes, Daisy32

 

[Bedelia]

@SussexDave: I too thought I could never contemplate a care home for my mum until she no longer had any awareness. However, there came a time when, despite being articulate and mobile, she suddenly stopped recognising her own home and could not be left alone for even a minute, as being alone anywhere, no matter how familiar or secure, was the same to her as being totally abandoned in a strange place. That would mean I couldn't even go to the loo, put the kettle on, or put washing in the machine without her shouting out in distress or coming to find me.

In addition, she had started wandering (I think to gain some context to where she was, as she had no memory of the area or the house from the inside) and would leave the front door wide open. She had to be brought home by police one night, while under a paranoid delusion that there was an intruder in the house holding me hostage and other lurid things. She would always be most active, indeed manic at night, obsessively looking for things, making phone calls if I wasn't there (or sometimes if I was), or bursting in on me in the night because she had either forgotten I was in the room or wanted reassurance I was still there. Time had no meaning for her, so there were no boundaries of appropriate behaviour for different times of day - long-term sleep deprivation can be a huge problem for the carer.

If we went out, I could barely run to a shop within sight of her or even get a ticket at the parking machine without her wandering off or getting anxious. Going to the supermarket for an hour became impossible without a neighbour to watch her in my absence.

It came to the point where mum was not safe to be on her own at all and I knew I could not cope alone 24/7. Social services had been encouraging me to find a care place for some time, but I had stalled because I dreaded having to do it, knowing that in her right mind it was something mum would have abhorred. However, when she became at daily risk of harm and my own health and sanity were at rock bottom, I knew I had to face it. I was hugely apprehensive that she was too cognisant to accept it and had no idea how (or whether) to explain it to her.

In the event, I took the advice of the staff and social worker and played it as low key as possible, initially pretending that we were just going to have a look at this place and go for a cup of tea etc. The strain of having to play it covertly was terrible, but she did in fact accept it better than I had hoped. As per other threads here, it seems it will never be possible to be entirely open or truthful with her about where she is now and that it is permanent; but she is physically a lot better (eating regularly, not at risk of wandering, getting a proper sleep routine, daily activities, on site medical care), and most importantly has 24-hour company and supervision from a variety of specially trained people, which I would never have been able to provide on my own.

Before your relative goes into care, it is impossible to imagine they will ever accept it. And while they may never do so in a reasoned way, it is possible that they may not be as traumatised as you think, and it will be the best option in the long term (if you can find a suitable place with the right staff and facilities).

I would also say that while toiletting issues may not currently be a problem, they can occur without warning and encompass not just continence, but obsessive "parcelling" and other ritual behaviours. My mum was previously the most fastidious person and only had mild "accidents" through dementia while at home; but in the last few months (she's now 85, going on 86), she has started to display some of these behaviours and I have to admit I'm tremendously relieved not to have to deal with them myself in a domestic setting.

So I would say please take your time to think this through and do look thoroughly at care homes before making the move yourself. It is a huge strain being a carer 24/7 and if your mum does ultimately need residential care and you have also been through the upheaval, both practical and financial of giving up your own home and social life (the support of old friends can be vital in such circumstances), you may regret it in the long term.

 

[nmintueo]

I have taken legal advice on what to do if, in the future, we need local authority assistance and how to make financial arrangements for this eventuality.

Good; that's the first question that occurred to me.

You don't want to end up with the council trying to claim your mother's assets after her house was sold and the proceeds invested in your new house. Be very careful to make sure you can account for your mother's assets separately from your own, and that you can in effect liquidate her assets to pay those potential care costs.

 

[frazzled1]

Mum is very fragile and after talking to my friendly Alzheimer’s society advisor we agreed that a care home is not the best option.
My own home is not big enough or suitable for someone with Alzheimer’s so my partner and I have decided to buy a more suitable house and move mum in with us (mum needs 24 hour care).
There are obvious difficulties with this strategy e.g. coordination of the sale of two houses and the purchase of a third but I am sure there are other problems I have not even dreamt of.
Does anyone have any experience of this and if so please could you offer any advice on what went well what did not go well, any unforeseen problems, anything you did but with hindsight you would have done differently.

hi there,

we did this and its all going o.k., as time goes on you just need more and more equipment, walking frames, hand rails everywhere, stair lifts, hoists, the list goes on. We will continue here indefinitely and have a spare room for a full time day and night carer to move into when necessary...same cost as a CH ...but the important thing is to be as happy emotionally as you all can be, whatever the circumstances. So far would not have done anything differently, but then lots of people are thrown into situations with partners and relatives very suddenly, out of the blue, becoming dependant upon their care, and in these circumstances you dont get time to think of what you might like to have done differently. There are different forms of dementia and people are affected very differently over different timescales so its hard to generalise. G has his own room and shower (no bath but he couldnt bend down anyway so we're not missing much) but hes not mobile and cant do stuff like cooking anymore as has intense pain just walking a step, so its more a case of making him comfortable. I think for us, having a pretty garden, however small, so he can watch the birds feeding and the pretty wildlife most of the daytime, has saved the day. He told me that That was what mattered most to him., more than his previous home which looked truly spectacular but he couldnt live there as he couldnt climb the steep flight of steps up to the house anymore so he admitted defeat. A house is just bricks and mortar, houses come and go.....people you love are what really matters in life.

 

[sparrow10]

I can only agree with SussexSue, her situation mirrors ours exactly, other than we purchased the new house ourselves and had it converted so that Mum has her own living accommodation completely, before moving her in with us We then sold her house and invested her money for the future, when full time care or a Care Home becomes absolutely necessary.

At the present time things are working, although we are unable to have a break away without employing a carer to come and live in. I can see a time when someone to just be there to oversee eating properly, changing clothes and day to day safety, will be insufficient. We will cross that bridge when it comes. I am also concerned at how we will cope when personal care becomes more demanding. I cannot lift due to back & neck problems and it would be unfair to expect OH to take over the more intimate side of being a carer.

I think taking on the care of a parent in your own home needs to be very carefully thought through, for all the above reasons and if we did not have our own living area, to be honest, I don't think it would have worked.

When Mum came to live with us I hadn't realized how dependent she wouild be on us for everything!! It has been a very steep learning curve and I do have my days (and I am sure my wonderful OH must feel the same) when I feel somewhat trapped. We no longer have any privacy as Mum walks into our section of the house whenever she feels the need to speak to us. Although I have tried to explain our need for privacy, she seems unable to understand. We can also no longer go away for weekends or to friends without making arrangements for Mum.

After saying all this, I honestly feel that we had no alternative, as Mum was managing less and less on her own and flatly refused a CH. The responsibility of caring from a distance and the maintenance of two large properties was no longerr an option and for my own "peace of mind" we made the decision to move her to be with us.

I hope you are able to find the right solution to your situation........ one very important point, you and partner need to have good sense of humour!!!!

 

[Billie61]

Our situation is similar to sparrow10.
MIL came to stay for a week to 10 days while work was being done on her house and has stayed ever since. The first 24 hours with us made us realise that things were worse than we had previously thought.

If I knew then what I know now, I would still have her to live with us, but it is just so hard.

She remembers nothing from one hour to the next. We have to answer the same question over and over. She refuses to go to her bedroom, saying we have kicked her out of her room that she has slept in for years, even though we only moved here before Christmas to be a bit closer to her in her house!

She says that she sleeps soundly all night and does all the washing and cleaning.....yeah right . We are up about 10-15 times a night to settle her back to bed, after she has moved furniture, rechecked doors/windows, got dressed (sort of), soaked the floors, left taps running, ..... The list is endless.

I would say to anyone that you need to be prepared for the deterioration that goes with dementia and also be prepared that at some point in the future a care home might be the only route.

Good luck.