Do I move Mum in with me?

[Annie M]

Hi, I'm new to Talking Point and would appreciate some points of view of other carers.
I'm an only child and live in the UK with my husband; we both work full time. I am self-employed working from home most of the time. My husband will be retiring is a couple of years but I want to keep working as long as I am able. My 88 year old mother was diagnosed three years ago. She lives just half a mile from us. I care for my mother with the help of my husband, my daughter, son and a professional carer who visits Mum twice a week to wash her and give us a day off. At the moment, we are giving Mum about two hours per day to serve a main meal, company and run the house/garden etc.
My question is about the future - isn't it always? We are considering building an extension so that we can have Mum live in an annexe with us and I want to know how possible it would be for us to care for her at home as she completes her dementia journey. I'm given to understand that it is inevitable that she goes into a care home at the end of her life, but would like to hear from families who care for their parent at home - with professional help where necessary - and whether you think it is sensible to try to take this route.
Thank you x

 

[cragmaid]

I can hear the chorus of voices calling " don't do it" from here!!

Hello Annie and welcome. First of all, I must say that I admire you for even considering having your Mum to live with you. There have been many here for whom this plan worked and, No, it's not inevitable that Mum ends of in a CH but its more likely.

Having Mum live with you, even in an annex generally means goodbye to privacy. You will still be able to have carers in but basically you will be on call 24/7. Your own children will have to devote a huge part of their lives to Gran.... even if they do not do hands on caring. Then there is the problem of building an annex and will you be able to a) get planning permission and b) sell the property easily when you want to move?

What I'd like to suggest is that you look at Ann Mac's " So Bizarre" thread. If you start at the beginning ( and I don't intend that you read it all.... it goes back quite some time), you will get an idea of how difficult her life was with her Mother in Law living in with her and her family.

Sadly, Dementia is progressive disease and the Mum you know now may not be an amenable person 6 months down the line.Perhaps you could try having her stay in your house for a weekend or better still, to give you a picture of how you would manage while you are working, you should try having Mum stay during the day for a few days.
Good luck with whatever you choose and keep in touch.

 

[Mimi5]

Hi there. Welcome, you will always get support, info and ideas here!

Everyone's journey with supporting a relative with this illness will be different. I am carer for my MIL. My husband is here only child. We have 3 children ourselves. Hubby has LPA (both) These are a must!

MIL has vascular dementia & Alzheimer's, diagnosed nearly 4 years ago, but evident several years before. She is a widow and lives alone 30 mins drive from us. She lost her driving license just over a year ago.

We tired to re-locate her close to us when her husband died (not my husbands father) 5 years ago. She wouldn't have it in anyway shape or form. Her older brother (nearly 80) nothing but a hindrance on her journey, also muscled in and so hubby and I backed off.

So, further in to the journey. I have had to give up work to look after MIL 3 days a week and she spends sat with us. I spend 4hrs a week just driving (minimum) Plus 5 hrs or more with her, mon, weds & fri (be leaving in a few mins!) Then there's behind the scenes!!!! Research reading in to the condition and ways to support her; organizing hos app; dr's app etc, etc It is very tiring and relentless, groundhog day most days. The illness slowly marching on, good days and bad.

We have been advised to leave her in her own home as she has progressed to far and the 30 years of muscle memory in her home is a great help in her independent living, but and it's a big but now, 18 months in we are struggling and she refuses any other help in any other form I had always said I could not do anymore. I need a life too and sadly my father is just beginning his journey with this terrible illness We are now looking ahead to care home options for MIL. It's is hard, but reality is. We've already experienced this with MIL mother "Nana" 20 odd years ago. MIL a nurse, cared for her mum in her home for as long as possible, but in the end had to place her in a care home too!

So, anyway I just wanted to say, you will have to think hard and make your own decisions based on your circumstances. You may not always get it right and in all likely hood the illness may out run your abilities. But you can only do you best and be realistic! The "guilt monster" will always be there!

Best wishes to you what ever you decide.

 

[Risa]

How comfortable do you feel about giving your Mum personal care? It does become more necessary as the illness progresses. My Mum is looked after at home by my Dad and although she is physically fit, unfortunately the illness has very badly affected her understanding of toileting and keeping clean. As her children, neither my sister or myself feel comfortable with washing her or dealing with the 'poo problems' that sadly now happen. This is why we couldn't cope with her living with us if Dad became unable to cope/passed away. Even if you have carers in, you can't always wait and leave things for them to deal with.

 

[Sam Luvit]

Hi Annie

Welcome to TP, I'm sorry you've needed to find us, but it's a great place to find help & support

I moved in with my mum 2 years ago, it's not what I expected, it's hard at times & I do wonder if I'd have done it, or done things the same way, had I read more before making the move

Please read as much as you can, to get an idea of what might happen. No 2 people follow exactly the same path. But reading the stories will give you a flavour of what you might expect. AnneM How Bizzare, MollyD Hard Feelings, HillyBilly Becoming my mums carer, these stories show humour, resilience & at times tears. Anne's thread will teach you more than you want to learn about the hardest journey you could have

Personally, my mum is early stages, although I think she's bordering on the upper edges of that now, but she's still very independent, does her own personal care & visits neighbours

You say you give 2 hours a day at present, I can't see that staying at 2 hours if she lives with you, she's not going to stay in her annex. At the moment, you can walk away & shut your front door, you won't have that ability. I'm not saying she will take over immediately, but I went from visiting every weekend (it was 160 round trip) & phoning every evening, thinking I'd have more time living with her, to being swamped by her life :-(

Not everyone goes into a CH, it depends on how they progress & your personal "line in the sand". For some it's aggression, for some it's violence, for some it's sheer exhaustion.

I would say, put as much in place as early as possible, to help you. So get a cleaner, they need to understand your mum, that's the hardest part. If you get lucky, the cleaner will make friends with your mum & that will mean not only a clean house, but a visitor for your mum (& a break for you)

Make time for you, a regular set in stone break. It doesn't matter if it's a walk in the woods, swimming, an evening with friends. It's time for you to regroup

You also need to set aside time to be a family, without your mum, your OH & children need to have time too

Moving is often talked about as being very upsetting to a PWD (Person With Dementia), so if you are going to do this, sooner is better than later. Your mum will be confused by the change, even if she's agreed to it

I'm sure others will be along, who have moved their PWD in with them, who will have more relevant experience.

Keep posting, it's a safe place to air your worries

 

[LadyA]

Annie M, welcome!

Certainly, you have a lot there to think about, and have had good advice. You say you work from home. Honestly, if you have your mum living with you, even in an annex, I couldn't see you getting a lot of work done. Dementia is insidious, and gradually eats up the lives, not only of the person with the illness, but of those around them. You could do it, if your mum was living in a separate annex, and had carers coming in regularly, so that, as her illness progresses, it wasn't you, all day.

The other thing to think about is finances. Would you be selling your mum's home to finance building the annex? Because you need to think carefully here. If, after a year or so, your mum's care becomes too much and she needs residential care, there could be questions about deprivation of assets if her money has gone to built the annex at your home.

Lots to think about. It all needs careful planning. And of course, it's not inevitable that your mum will need full time care. It all depends on how her illness presents as it progresses. I had been determined to keep my husband at home until he died, but sadly, as his illness progressed, he became aggressive and violent around personal care, and I just couldn't manage, so he spent his last 11 months in a nursing home.

 

[Izzy]

Everyone's circumstances are different. My mum had vascular dementia and she last bed with us for the last 5 years of her life. She died at home with me 6 years ago. The situation was complicated you my husband's progressing Alzheimer's. I worked full time but I was extremely fortune to live in Scotland and have a good care package.

Everything others have said is right. You do need to project yourself into the future and think about how you might cope with changing needs. I once thought I could never provide personal care for my mother. Turns out when the need arose I found I could. I do, however, totally understand that this might be the line in the sand for many. I doubt I could have done if it had been my dad rather than my mum.

Even with an excellent care package I was on call 24/7. I was fortunate that I could pop home from work if I was needed but I was on call all through the night - the long nights! I think that's where my inability to sleep properly first started.

We had lots of very diffcult times but I don't regret it. Do think carefully about it though. It's a big step to take. Whatever your decision don't feel guilty about taking it - easy for me to say!

 

[lemonjuice]

Obviously everyone's situation and stamina etc is different, but I would seriously ask you to consider ths very carefully.

As Mimi5 and craigmaid have pointed out, dementia is a deteriorating condition and what seems plausible now may not be a few years down the line.

I always thought I would have to look after my own mother 'right until the end', because I am an only and she is a foreign national whose native language is not English. I was also looking after my elderly in-laws, who live next door to us and I can tell you there is a world of difference between looking after an elderly person who mainly just has old age and mobility problems and someone with dementia. We managed to do that right until the end with my in-laws, but the many, many personality problems associated with dementia can push yu 'to the edge'. Plus if they survive long enough, as my own mother has, they really need 24 hour care. That would impact hugely on your own and your family's lives.

I live in an area with a high proportion of 'elderly i e over 80 up to the 100s and we have alot of dementia and all my friends have had to put their relatives in a NH in the end. One friend even had her mother move in with her for 4 years and she was exhausted by the end of it. Being disturbed many times at night because they were hungry, they lose their sense of time, probably contributed. Even with dementia their 'wiliness' remains and believe me every precaution you take to ensure they can't get out r hurt themselves when they are on their own, they can overcome. I know someone who had triple locks on the doors. One high involving climbing on a chair to slide across, one really low involving bending down and one 'normal' triple lock and the mother still managed to escape.

One day when I was making toast for my mother and set off the smoke alarm my mother was completely unperturbed. She had no idea that she needed to get out of the house as it could indicate a real fire. You cannot be with them 24/7 and there are so many potential dangers.

I always counsel anybody considering this to be aware that the first year of care is 'not so bad'. The second year the impact starts to bite and in the third year one can start to be overwhelmed by the enormity of the task and become resentful/ not so patient etc. and that is not good for any of you.

I would say try to keep her in her on property as long as she's mobile and not a danger to herself. Start researching a Nursing / Dementia specific Home for when the condition starts to get into the severe stage and that stage can be several years. We're currently 4+ years at the non-responsive stage and I recognize there's no way I could give my mother the care she needs.

 

[Linbrusco]

My parents sold their house 9 yrs ago and we built a house on the back of our property for them.
Just 5 yrs later Mum was diagnosed with Alzheimers.
I was Mums main carer, and as time went on, I was also her security blanket. I simply couldnt go anywhere with her wanting to come with me.
Mum wore a path from her steps to mine. She would come over, go home, forget she had been over, and then back on my doorstep. The record in one day was 18 times. She would get up at 3-4am looking out her window to see if my light was on! The earliest she rang me was 5am when she saw our light on as I was getting paracetamol for my daughter who was sick.
I do have concerns that you would be able to work from home as your mothers demands would take over.

 

[Juliematch]

Hi Annie M. As you can see we all have such different journeys.My own started 11 years ago when mum passed away and dad came to live in an annex with us. He was 71 and hopeless at looking after himself.Hes had a lot of illness in the last 8 years and having him so close made it easier to care for him.Since his dementia diagnosis which was only a year ago I still felt the same,having him close was a blessing.But after nearly 4 months earlier this year when he had delirium after a chest infection,hallucinations day and night, I was very close to a carers breakdown.It not only affected me but my husband and son.I was eventually persuaded to put dad in for respite.I so needed it.Also trying to juggle work was so hard.Ive actually taken a year off because I had so many days that I couldn't leave dad. As others have said please think very carefully because it is 24/7 and it's not just you and your PWD it affects. Dad has settled down now thanks to meds and no infections but I'm dreading the next time it happens or his dementia moves on. There are lots of lovely people on TP who are so knowledgeable and always ready to help.Its so good to share experiences.

 

[Tin]

At the moment I would say 'no' don't do it and that is because I have been up most of the night, listening and watching my mum wander around the house and I am now tired, sitting here still in my pj's.

At some point you or your husband will become her main carer. There have been good times with mum living in my home, but there is a lot that I have given up and I have convinced myself that it is worth it, telling myself there are more important things in life than socializing!? Oh and housework!

All of this said, I am still not ready to place my mum in a care home. I want to care for her for as long as I can.

 

[Rosettastone57]

Hi, I'm new to Talking Point and would appreciate some points of view of other carers.
I'm an only child and live in the UK with my husband; we both work full time. I am self-employed working from home most of the time. My husband will be retiring is a couple of years but I want to keep working as long as I am able. My 88 year old mother was diagnosed three years ago. She lives just half a mile from us. I care for my mother with the help of my husband, my daughter, son and a professional carer who visits Mum twice a week to wash her and give us a day off. At the moment, we are giving Mum about two hours per day to serve a main meal, company and run the house/garden etc.
My question is about the future - isn't it always? We are considering building an extension so that we can have Mum live in an annexe with us and I want to know how possible it would be for us to care for her at home as she completes her dementia journey. I'm given to understand that it is inevitable that she goes into a care home at the end of her life, but would like to hear from families who care for their parent at home - with professional help where necessary - and whether you think it is sensible to try to take this route.
Thank you x

As others have said the dementia journey is different for everyone. in my mother in laws case husband and i made a decision many years ago before the diagnosis that she could not live with us even in an annexe. Because of her needy demanding personality she would never have been emotionally independent enough not to want to be with us all the time. I'm so glad we made that decision as with her dementia diagnosis now her need to have someone with her all the time would have been an impossible situation for us. She would not heed any boundaries and would simply have wandered in even in the most private of circumstances. She is now near to us in her own home with carers as this is the only way not to have her expecting us to provide her every need. its also the only way to avoid her aggressive outbursts when things don't go her way. We can distance ourselves which may not be possible in an annexe. Think very carefully about this. What may seem not too bad at the moment can quickly deteriorate.

 

[father ted]

I would say don't do it.

Some people manage amazingly well. They are selfless, human dynamos with an unending depth of patience and kindness. Not minding when your sleep is broken, listening with a smile when you have heard a story four times in a couple of hours, looking interested in a story you hear every day, coping with incontinence, trying to explain why something is happening or needs to be done when they can' t understand but doing it all in good humour. Being the target for jibes or criticism for some perceived wrong doing but taking it on the chin.

If you can do all that then do it and you are a better person than I.

My mum came to live with me as she was a great Mum and my best friend. It was tough at first having 3 generations in one house but we survived it and we rubbed along pretty well but with the passage of time things have got harder. I have resented loss of my freedom, and the lack of privacy and my Mum's emotional dependency on me. My Mum is no where near as bad as what I mentioned in the second paragraph but I still find it hard.

 

[MorryLou]

Hi
My mother currently lives with myself and my husband and is in the early stages of dementia. She has lived with us for over 20 years. In the beginning, she was a godsend with the kids and now that they have flown the nest it is my time to look after her.
At present, both myself and my husband still work full time. Recently we have had some 'incidents' which would suggest that the dementia is progressing. I am constantly monitoring the situation, and it is stressing me at times.
I put my own feelings to one side because I want my mother to feel comfortable in her surroundings for as long as possible. I currently do a lot for her (making her meals, sorting her paperwork, doing some personal care and taking her out.) Most weekends are structured around her to give her some variety as during the week she is largely stuck in the house.
The plan is to continue as long as possible then we will have to get carers in to check that she is ok during the week. I do envisage that there will be a point when carers won't be enough.
I have thought long and hard about what the next step is likely to be. I'm an only child so the next phase is literally down to me. My husband suggested that I might want to give up work! Quite frankly, and on the back of some recent difficult behaviour from my mother, which was abusive, I don't think I will be going down that route!
I will do the best I can for as long as I can, but the toll on myself and the family has already been huge.
I wouldn't change a thing about our lives up to this point but there is only so much you can do.
I would advise against building the annexe. Preserve some of your freedom and independence in the comfort that you have done your best.
I have read some of the posts on this website and it seems like when things seem at their worst, there is a whole new level below that can be reached.
Hope this helped
Take care!

 

[LilyJ]

My M-in-L came to live with us four years ago when she was in poor physical shape, mainly due to a poor diet. Four years of good food & being cared for has changed all that and at 96 still only takes calcium & no other medication . Her mental state however has deteriorated enormously and the woman I had a good relationship with has gone. She has taken against me and can be very hurtful.
However, the biggest problem for my husband and me is the lack of freedom; we are unable to go out when we feel like it, except for a short walk or on our 3 hour respite slot each week. We have a 3 year old grandson, & another grandchild on the way, 200 miles away, but we have very little opportunity to visit them; although our family are very good at coming to us.
We had little idea how difficult it would be to get a couple of weeks respite care either.
As others have said, do think long and hard about this.
I hope that all will become reasonably clear for you & your family.

 

[SnowWhite]

I could weep! I spent about half an hour replying to your post and I've lost the lot now. In brief then, mum has been in Care for about 6 months but comes to me two days a week as I'm racked with guilt about her being in a home.

She is 93 with Alzheimer's, arthritis, poor mobility and a colostomy which now causes quite a few problems. For years she has been coming to me every weeks and we had some lovely times until the stairs got too much and she had several falls.

We looked at houses with extra downstairs room so she could live with us but we need to be in this location due to our business. I was shattered last year when she spent every weekend with us and we had to get a stairgate as she wandered to the loo several times every night so I got no sleep listening out for her.

You may be able to care at home but think very carefully about the practical side of things. Xx

 

[Fullticket]

Given my time again I would do it so very differently. At the start of the journey it was just sorting out finances, making sure mum was eating, keeping appointments, etc.
Then the money started disappearing and people were knocking on her door asking for their 'bills' to be paid. She had five Sky box insurances, and no Sky... Then her house was more or less cleaned out of anything valuable, including her wedding and engagement ring. An unsuitable boyfriend clung on like a limpet (a married man; she paid for his son's wedding).
I had just been made redundant - probably because I was doing a cross-London journey three times a week to her and then alternating being with her/her with me at weekends. Clearly she could not live on her own any more.
So we moved her in with us but had to move to out of London to find somewhere suitable for her needs.

POA is essential, although my co-attorney (brother) has nothing to do with her.
Be careful about deprivation of assets, know the law and make sure you can defend yourself against accusations when the local authority get involved if a care home is needed.
Think very, very hard about the impact on your life. I too work from home but only because I can get her to various clubs and day care. If she was around the house she would not let me get on with anything. My mornings are supposed to be for phone calls and video conferencing with my boss. Last week mum had a fall and I had to spend the day in the hospital; a few weeks ago she got a bad cut on her leg, so numerous trips to the GP for dressings; tomorrow I will need to spend time at the opticians with her for new glasses. The places she goes to I have to take her to and pick her up and I cannot start work until she is up and ready to be taken to these places. Timings go out of the window and you cannot schedule your day.
My partner and I have no children, and we have not been out as a couple for a long time as we can't leave her on her own for more than an hour or so. We have had no proper holiday for more than four years. I want to go to the Grand Canyon but I am 65 and my partner is 72. How long is this going to last; she is 92 but physically as fit as a flea.
I am in safe hands saying this here but, no, I would not do it again. We used a bit of her money from the sale of her house to buy this place, suitable for her needs with a downstairs bedroom and bathroom. Now there is the problem of what happens if she goes into a care home? The LA will be wanting us to account for this, although some of it has been paid back into her account.
I realise I am not cut out for this. I do it because I am now this far down the line and I read what others post and think they are so much better at this than I am, so much more patience, so much more ability to care, so very flexible in their outlook. Yet friends tell me I am so much more patient than I used to be and very caring in what I do for her.
Sorry if it all sounds negative; there are some plusses and some very funny times and I have made some good 'carer' friends on the back of our move here. But I have little or no time to myself and I have to work (actually I NEED to work)!
Good luck in what you decide to do.

 

[Tiggar]

Obviously everyone's situation and stamina etc is different, but I would seriously ask you to consider ths very carefully.


I always counsel anybody considering this to be aware that the first year of care is 'not so bad'. The second year the impact starts to bite and in the third year one can start to be overwhelmed by the enormity of the task and become resentful/ not so patient etc. and that is not good for any of you.

I would say try to keep her in her on property as long as she's mobile and not a danger to herself. Start researching a Nursing / Dementia specific Home for when the condition starts to get into the severe stage and that stage can be several years. We're currently 4+ years at the non-responsive stage and I recognize there's no way I could give my mother the care she needs.

This part of your post really resonated with me.
I'm now into year 3 and do feel overwhelmed. I'm not sure that i would have moved mum in with me if I'd known then what I know now.
It's not easy but maybe it's best in the long run to have some distance when caring for your PWD.

 

[DMac]

I have only one comment to make.

DON'T DO IT!!!

Sorry to be blunt. But don't. Please. Just don't.

 

[Witzend]

I was working from home when FiL came to live with us.
On a typical day I could get virtually nothing done until past 10 pm when he was in bed. He would pace up and down and ask the same questions endlessly - I once counted 35 times in one hour.

It's true we had no annexe, but even if we had, I doubt very much that he'd have stayed in it. I've heard from people who've had relatives with dementia in annexes, that however nice the accommodation, the person will typically never remember that they should stay in it for at least part of the time. They will simply be unable to remember that someone else needs time to work, or just to have peace and privacy.

Having said that, I do have a friend whose mother with dementia lived in their annexe (which they'd added already and had previously rented as a holiday let) and it worked reasonably well, but her mother was very placid and compliant, and furthermore refused ever to get out of bed, so there was no question of her wandering in and out. With visiting carers it was manageable, though still a problem in that friend and her husband could so rarely go out together, but that's the only such case I've heard of.