MOVING INTO MUMS HOUSE TO CARE FOR HER...what have we let ourselves in for ?

hollycat

Registered User
Nov 20, 2011
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My mother is a stubborn/strong/independant lady. I have tried to get her to see a doctor for 4 years. 5 weeks ago she was diagnosed with alzheimers. My husband and I are in our early 50's and in a position with a works pension to move in and care for mum in her own home. I would love to hear from anyone who has experience of living with parents (both good and bad points).

We are both obviously shell-shocked and whilst if we are being really honest, we don't really want to move in, as her only daughter I feel it a necessity/obligation.
Thanks
 

sussexsue

Registered User
Jun 10, 2009
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West Sussex
Hi. Very brave and kind move. I don't know what the house is like but please organise it so that you and your mum have separate well defined areas. Being able to hide away, watch what you want on tv, a place to talk privately, a place to have your friends around. It will probably be much harder than you think.

As it is your mum's home what will happen to you of your mum goes into care?

Good luck.
 

longacre

Registered User
Feb 17, 2008
117
0
London
For a read by someone has done it, you might like to get Keeper by Andrea Gillies who won the Wellcome Trust book award in 2010 I think with this rather gruelling tale about moving her mother-in-law into her home.

I dont know how far down the road your mother is and admire your intention to do this. There will be others here who have experience of it but you might like to reflect also on your relationship with your partner and how you will both cope with something which will undoubtedly be very tough. Maybe a call to the Alzheimers Society would also be helfpul to just talk some of this through before making the move. :) Best of luck.
 

Chemmy

Registered User
Nov 7, 2011
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Yorkshire
... if we are being really honest, we don't really want to move in, as her only daughter I feel it a necessity/obligation.
Thanks

You are clearly very well-intentioned, but your words (above) trouble me. Anyone reading the posts on this forum can see that it's hard enough for those who willingly choose to care for a parent in this way as an act of love; if you go into it because it's an 'obligation' (and I'm not criticising you, as I wasn't prepared to even consider it), I think chances are very high that you're going to regret it.
 

Nebiroth

Registered User
Aug 20, 2006
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My mother is a stubborn/strong/independant lady. I have tried to get her to see a doctor for 4 years. 5 weeks ago she was diagnosed with alzheimers. My husband and I are in our early 50's and in a position with a works pension to move in and care for mum in her own home. I would love to hear from anyone who has experience of living with parents (both good and bad points).

We are both obviously shell-shocked and whilst if we are being really honest, we don't really want to move in, as her only daughter I feel it a necessity/obligation.
Thanks


I find your last statement worrying. This is because what you propose taking on is a massive, open ended committment.

Personally, I do not think that this is something that should be taken on as a duty/obligation or out of a sense of guilt for not doing it. As the poster says above, there are many here who have cared happily and willingly at the start but who have found themselves ground down into exhaustion, resentment and guilt at feeling that way.

Caring for someone with dementia is physically and mentally exhausting - I also believe that most people who take it on have no idea what it entails until they have experienced it.

So I think that you might very well find yourself having taken on a task through obligation that you could come to resent quite quickly, but having painted yourself into a corner with no way to back out if things go wrong. This resentment could quickly be directed against your mother espescially if you feel deep down that you are in a position that you don't actually want to be.

You say that your mother is a stubborn and independent woman; that sounds as though she might find it very hard to accept care (or that she even needs it); she might not want your presence, she might resent it and this could result in challenging behavior. Remember that dementia very often removes a person's inhibitions so it is quite likely your mother will take out her frustrations on you - the unwilling carer.

There is also the fact that you are married. What is your husband's position in all this? Perhaps he is only agreeing to it out of a sense of duty towards you. This is another potential source of resentment. It might one day come to a choice between your husband and your mother. Keep in mind that he does not share the same bond that you do with your mother.

Sadly, people with dementia get worse. That is inevitable with this disease. Symptoms like agressive behavior (verbal and physical), accusations of theft, incontinence (both kinds) are very common. The only thing that is not known is how quickly these may appear. Could you cope with this? You might find you have moved in with your mother only to find you can't cope or that her needs are so great they require professional care a year or two after moving in.

Lastly, the practical issue; if you move in with your mother what is the position regarding a home to live in?

Keep in mind that if your mother has to go into care then her house will form part of her assets. They local authority may demand it be sold to pay for fees. They may disregard it, if a carer who has given up their own home to move in, but this is discretionary so there is no guarantee. In these times of austerity protection is less likely.

There is much wisdom in the old saying about choosing in haste and repenting at leisure.
 

hollycat

Registered User
Nov 20, 2011
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Many many thanks for your really open and honest contributions. NO offence has been taken in anyway at anything anyone has said. Your are all experienced and we are at the start of this. It is really reassuring to know this kind of facility is there for us to share our thoughts and experiences.

One point to perhaps receive further comment from you all, my mother holds my husband in very high regard and his initial thoughts are that he feels better mentally and physically prepared to do the caring. He has discussed getting me back to work and into a regular social scene whilst he does the majority of the caring. He is wonderful dealing with the elderly (i.e. ex warden of a retirement complex). Whilst I would feel a degree of guilt under this arrangement, do you think it is worth trying ?

The thing I want to avoid if I am honest is confusing mum any further, but initial reaction from mum is very positive towards the idea ?

Many many thanks again
 

Chemmy

Registered User
Nov 7, 2011
7,589
0
Yorkshire
my mother holds my husband in very high regard

Does this include allowing him to help her with intimate personal care? When my aunt was suffering from vascular dementia, my cousin stopped getting carers in and she and her husband went round to wash and dress my aunt.

My parents were pretty upset by this. They didn't think it at all appropriate that her son-in-law was helping in this way. My father would have been horrified at the idea of me taking him to/from the toilet/shower. And to be honest, I'd be pretty horrified at the thought of my son or son-in-law doing that for me.

PS: not keen on my daughter doing it either!
 

Katrine

Registered User
Jan 20, 2011
2,837
0
England
It does sound as if your husband has very useful skills in this situation. What you cannot know is how your mother will change as her dementia progresses. I endorse the suggestion to read Keeper by Andrea Gillies. I don't think anyone on TP would say that you absolutely should not move in with your mum, but I am fairly sure that the balance of opinion will be towards finding a different solution.

Physical deterioration that requires personal care such as dressing and assistance with toileting and bathing. Who is going to do this? Will your mum allow her SIL to do such personal care?

What about your own needs for a social life, holidays etc? If you care from a distance no-one can stop you from going shopping, seeing friends, having a break, because you are not living with a vulnerable adult. Once you are in the same house, you may become trapped by this responsibility, which is not only a moral but becomes a legal one if the authorities take a view at any time that she has suffered neglect. Why would they do that? Your mum might ring 999 and complain that she is being cruelly treated, or escape from the house to get help because she believes she is being held prisoner.

What legal arrangements will you make to protect yourselves if you find your mum doesn't want you to continue living with her? She may become aggressive and resentful. In Andrea Gillies case, her in-laws moved in with her family. Therefore it didn't matter how much her MIL screamed at her to get out, the MIL did not have the power to make Andrea leave her own home. This will not be your position.

How do you engage the authorities as your support needs increase? Much harder to achieve because they let people struggle on with caring as it saves them money and effort. As has been mentioned, they might be keen to get your mum's money to pay for her care from sale of her property, and where does that leave you? She can't give you her house now as that is 'deprivation of assets' and you are too young to be protected residents as you are under 60. Please seek detailed legal advice before you make any decision.
 
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angelface

Registered User
Oct 8, 2011
1,085
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london
I certainly agree with all the comments about safeguarding the financial side of things.
I also understand your thoughts about family duty, as an only child, I can see clearly how you would feel.
My mother did not suffer with Alzeimers, but she was a strong, stubborn, independent woman who was always right. She became very ill quite suddenly, and I was told she only had weeks or months to live. The hospital said she should go into a nursing home, but she would not go.

I knew that I could not live with her (because of her charecter), but it was decided she should go home with carers. As she had such a short time, I did not have the heart to refuse to help.

Mum survived for 2.5 years, with me visiting 2/3 times a week, more when things went wrong. Even at this level of help, towards the end I was unable to cope any more, because of the constant problems, upsets, and the constant battles with her when I was trying to help.

After she died I had a nervous breakdown due to the pressure I had been under.
I would advise you to think long and hard before you commit to moving in. As far as I can see, dementia seems even harder to work with than physical illness (I have 2 aunts with dementia).

I do hope you can come to the best decision for you and your family. I also appreciate that there are many heros/heroines on TP who make a wonderful job of looking after people in their family with dementia, so please forgive my rant!
G
 

harvey

Registered User
Aug 10, 2007
71
0
We moved in at MIL's request when FIL passed away. We were unaware that she was suffering with dementia at that time. She had always been extremely independant, stubborn and downright domineering.
It was the beginning of a 3 month nightmare, we had no life of our own from the moment we moved in and things went downhill fast. We had not a moment's privacy [her home therefore she felt she could walk into our bedroom at any time unanounced] She ruled every aspect of our lives and we only escaped when she suggested that we do things her way or we could go home. We called her bluff, jumped at the opportunity and left the next day.
There then followed four years of caring for her which left my husband in such a stressed state that I worried constantly about his health. We had the usual accusations, constant phone calls, threats etc.
In June this year her GP declared her a danger to herself and others and she was admitted to a care home. For all our feelings of guilt she now has a new lease of life and is enjoying herself immensely, she is a much happier person and we know she is being cared for.
I would never advise anyone to move in especially with a relative who has been strongly indepenant. It works for some people but you have to realise your lives will never be the same.

Polly
 

Tess810home

Registered User
Jan 11, 2011
157
0
London
Mum has lived with me for many years, pre-and post Alzhiemer'. Until a couple of years ago I maintained my own independence and to an extent, so did mum. When 1-1 care became necessary it was a whole new ballgame. Once you take on the care role, you can feel that this is the only thing in your life. I had mum's gradual decline over the years to begin to get used to the idea (still a big change when finally she was unable to be left alone).

I would say this, don't take on this huge life changing responsibility unless you are fully prepared for what's in store. I think the comments on this forum will give you a good idea of what may lay ahead. Please read as many as you can in order to get some idea of your mum's future needs and problems. If you are prepared to give this a try, all credit to you, but maybe try to look at alternative arrangements so that you have other options if things become too difficult.

Best of luck to you and keep us posted.
 

Dazmum

Registered User
Jul 10, 2011
10,322
0
Horsham, West Sussex
Hi Hollycat, I was in a slightly similar situation to you, only child and in early fifties, when we decided to have my parents live with us (husband and son). At that stage it was only my dad in poor health and we wanted to look after them and support my mum. They have their own lounge and bedroom of course. In a rather large nutshell, my dad's physical health deteriorated and I took over looking after his medication. He had a major operation only a couple of months after we all moved, and really things went downhill from there. Mum was diagnosed with dementia two years ago, but looking back the signs were there and dad covered for her for at least two years before then. Mum ran around after him and so did I to help her. It got to the stage where I was worried about going out and leaving them and worried about what I was coming back to, as he sometimes had falls and mum didn't know what to do. I didn't know who to ask for help, was never asked about it by GPs who saw him, I think they just thought I was doing a good job managing. We did get to have a week's holiday after much soul searching, two years ago, I made lots of arrangements for relatives to come and check they were ok, lists of phone numbers etc, but as soon as we had gone, dad undid them all, followed mum downstairs one night and had another fall. When I cam back and saw his bruised face, my first thought was that I could never go away again for any length of time. Dad is now in a nursing home nearby and very frail. Mum's condition has escalated in the past couple of months and frankly I am close to the edge. We are organising help, but this is only going to be short term and it is likely that if possible, mum will join dad in the nearby care home.

We put everything in place that we can, but we haven't done anything spontaneous in the last six years. We have had two weekends away this year, but have no one to have mum for longer, our other relatives have their own health issues. I have not suggested respite for her because I believed it would make her deteriorate, plus the cost of doing that is just so high. My husband is a very good man, it was he who suggested this arrangement in the first place, and I believe he seriously regrets it although he wouldn't say so. Yesterday he kept account of what I do for my mum and even I was shocked. I'm having to work from home at the moment until we can put something in place so that I can be confident to leave her on her own. She has no short term memory at all and has to be told to do everything. My mum is an amiable lady, and that makes things 'easier' by comnparison with many others here on TP and I am very grateful for that. I wouldn't have done this had she been stong willed or domineering. She would hate to think of the effect this is having on me if she knew, it is constantly going round in my head at the moment and I find it hard to think of anything else if I am truthful. Don't underestimate the effect it may have on your relationship with your husband either.

I know everyone's situation is different, and therefore I wouldn't say to you on no account don't do it, but please, please don't feel obliged, because you are the only child. You are shell shocked, I know that feeling all too well, and that is no condition to make what will be a life changing decision. I echo what everyone here has said, and would suggest that you make other arrangements for your Mum to begin with and see how things progress.
 
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PurpleJay

Registered User
Nov 2, 2011
169
0
Derbyshire
I have lived with mum (along with my husband and son now aged 5) for just over 2 years until her admission to hospital in August. She has now moved to a care home where she has been for 2 weeks.

It was a long process and took over 3 years to achieve as I had to sell my home, go into rented and then we had to sell mums home. Using the funds from both, we bought a 4 bed detatched house with a double garage. We converted the garages into a lounge and bedroom and the utility room which was at the back of the new lounge into a kitchenette. This room had a door onto the side so effectively she had her own door. The downstairs loo was made bigger and we had a bigger sink put in to enable her to use it to have strip washes.

Mum rarely came into the main lounge, sometimes when my little boy was playing with his train set in there she would and at Christmas/other occasions but that was about it. We would go and 'visit' her and she would come and eat with us in the family kitchen where we spent a lot of time whenever I wasn't at work. She would come and do jigsaws with M and chat while I prepared meals or would watch us bake. Every night at 7.00pm she would watch the soaps and we would be putting M to bed or watching our telly. It meant that we could have a bit of time on our own.

I would say that having your own space is very important. Mum would have already been suffering from undiagnosed dementia when we moved. She was confused by the move but we put things in place to deal with that, leaving notes etc. She hasn't been able to understand new things or change for a long time. Some of the issues with her dementia were less obvious as I was already doing a lot for her (cooking, cleaning, shopping, money, bills, paperwork, appointments etc). She was able to take her own medicine (but any changes or additions would completely throw her) and deal with personal care although it was a struggle for her.

Prior to having the garage conversion complete which we did within about a month, mum had the main lounge and we had a telly upstairs with a sofa in the spare room for our makeshift lounge which worked well. We like such different things and my mum can be difficult, stubborn and was someone who cannot understand how someone can enjoy something if she doesn't like it!

Mums mobility problems meant she couldn't get upstairs so our upstairs rooms have always been private. She used to get a bit cross saying I was always upstairs and if I was up there a while she would shout but we have an upstairs utility and computer room and so I had to do some jobs up there.

I have no regrets about doing what we did, she would have been in a care home sooner if we hadn't done it or would have ended up hurting herself. She had less worry as I was able to take responsibility for everything and she just paid a set amount in 'board' towards food and bills. Try to think about what help she will need and how much time this will take. Can your mum be left, what will you do if you go out for the day/on holiday (we used to have social services do a daily visit when we went away) etc. It wasn't always easy but I would do it again. Not without our own space though - it was a deal breaker for us but it depends on your relationship really. You wouldn't need to have it as separate as we did but using a second lounge or a spare room as your own would probably be enough.

Good luck.
Jane x
 

hollycat

Registered User
Nov 20, 2011
1,349
0
Many thanks to the most recent contributions ie real life examples of what you have done and not done.

To provide an update, we have TEMPORARY MOVED IN to initialise power of attourney, safe method of tablet taking, full paperwork tidy, house safety check etc etc.

We are in effect doing a TRIAL RUN for now. Mum is so confused that if/when we arrange alternatives and leave her, whilst there would be a massive GUILT TRIP on our parts, having read what we have read so far, we feel with your support and kindness, it is a move we could make ie we could move away.

However, all his working life, my husband has written I LOVE A CHALLENGE !

The problem is, he does. As an ex house manager/warden of a retirement property (mccarthy and stone built, peverel managed), he was really tested and came through with flying colours.

He has therefore suggested that i try and get some work to mainly get me out of the house for a social life. I think this is another thing we could TRIAL for a couple of weeks and again would welcome your comments about our TRIALS.

Many thanks again for your really supportive advice and guidance x x x
 

Dazmum

Registered User
Jul 10, 2011
10,322
0
Horsham, West Sussex
I enjoy my part time work for the people/ friends there as much as anything, so this may well be a good move for you too, as you will need some breaks! What I didn't say in my earlier post was that I do enjoy being with my mum, we have lots of laughs which get us through some hard times. I think you are right to say that this is a trial run and don't finalise anything re yourselves too soon. Good luck!
 

Jancis

Registered User
Jun 30, 2010
2,567
0
70
Hampshire
Hi Hollycat, I have been catching up on your thread and wish you all the luck in the world with making solutions that work for you. Whilst I share many of the views of everyone who has posted here, it's worth bearing in mind that we are all members of TP because we need emotional support and help with understanding the terrible trials and difficulties of caring for someone with mid to late stage dementia. Families that have been lucky enough to 'manage', for whatever reasons or circumstances, are in the minority on this forum (for obvious reasons) - I feel you need to balance the pessimistic outlook with a modicum of optimism. It would be lovely to hear how you get on with the challenges ahead and hope your mother stays as contented as possible with the choices everyone is making with such love and consideration.
 

Tess810home

Registered User
Jan 11, 2011
157
0
London
I feel you need to balance the pessimistic outlook with a modicum of optimism. It would be lovely to hear how you get on with the challenges ahead and hope your mother stays as contented as possible with the choices everyone is making with such love and consideration.

I posted earlier, but just want to endorse the above, there is no denying the challenges we face as 1-1 carers (mum lives with me), but we do have fun too sometimes and there is no denying I receive a great deal of comfort myself in knowing I can do this role for mum.
 

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