Pros and cons of having a parent with Alzheimer’s move in?

[Orlaworld]

my mum is 72, diagnosed with early onset Alzheimer’s and at present lives alone, about 16 miles from me. For both me and my brother it is approx a 35 min journey each way to drive to her house and annoyingly, it is not on my way to anywhere such as work so it is tricky to combine visits with doing other things.
For almost 2 years, I have managed all finances, bills, any paperwork, shopping and house maintenance for mum. I have stopped her driving and I have POA. I check her food and encourage her to eat properly. More recently I have taken on her social activities, trying to maintain contact with friends. Last year, we lived with her for 4 months and it became clear how much she was hiding. As a result, I have tried to increase support for her.
I feel that when she is living alone, she becomes worse. Both my brother and I average around 8-10 calls a day from her but recently, she has been calling earlier and earlier (5.30am) and much later (up to 1.30 am). She isn’t aware that it isn’t a great time to call and she is not calling because of a crisis. She does sometimes remark that no one is around when she walks the dog (possibly because it is 5.30!). I know she is lonely and I know she spends much of the day watching tv. She also happens to live in a totally quiet cul de sac where nothing happens and you could go weeks without seeing another human.
More worryingly, recently she has had several episodes where she phones in a panic looking for her mum (who died many years ago) or telling me there are people in the house (when there isn’t). I keep thinking that these symptoms are made worse by her being alone so much. We try to visit several times a week and I have arranged 3 different carers to visit and take her out each week. But that is still many hours alone.
It would be entirely possible to ask my mum to come and live with me and I veer between thinking this is a good and practical idea, and feeling terrified as thIs is pretty monumental stuff. I live with my partner and teenage kids and it would obviously impact everyone’s lives. If she did live with us, I could hopefully park the money from her house sale into savings so were she ever to need a care home, the funds would cover it. But meanwhile, there is just the basic day to day stuff to contend with.
I know many of you have experience of having a parent move in and I wonder what you wish you had known beforehand? Or what would you advise someone else to do? With the benefit of hindsight, would you have done things differently?
Right now I have the guilt as I feel I maybe could and should be trying to improve the quality of her life whilst I can.
From her point of view, she has talked about moving and been keen to do so (especially recently - I was surprised by her enthusiasm at the idea of selling up,having previously been totally against the idea). She likes the idea of a place closer to us but is unrealistic about living alone. She would be lost within minutes of walking out of a new place and I think we underestimate how well she copes now simply because she has lived in the same place for over 30 years. She hints that she loved it when we lived with her last year (which was always only going to be a temporary thing whilst our house was repaired) and she “jokes” we should live together.
I think sometimes that my biggest worry is that most people on meeting my mum would think she was fine as she hides stuff pretty well. And she will get cross with me or upset when I try to sort things out - to be honest, I end up feeling like I’m 14 all over again! What I’m trying to say is that this is not some sweet little old lady who will blend in with the furniture. When I stayed with her, she wanders about till she finds me and constantly asks what we are doing next like I am chief entertainer. It’s tiring.
But if I leave her living alone, am I condemning her to becoming worse far quicker??
Sigh. Sorry for long post. Thank you, as always, for your wise words.

 

[margherita]

What I’m trying to say is that this is not some sweet little old lady who will blend in with the furniture. When I stayed with her, she wanders about till she finds me and constantly asks what we are doing next like I am chief entertainer. It’s tiring.

How long will it take before the lives of all of you become unbearable, should you move your mum to your home?
You are generous, but what your heart suggests seems to be conflicting with what reason and experience would advise.

 

[Sam Luvit]

Your post took me back to the same decision 4 years ago. My mum was also not going to be easy to live with, so I understand your concerns.

I sold up & moved in with my mum. I was solo. No OH or young children to worry about. You have both. As things move on, your teenage children will see their grandmother change, they may see things you’d prefer they didn’t.

If she’s not already been assessed, please get that in place. It will give you a clearer idea of what the “professionals” think she needs. If you do move her in, get care visits set up from day one, so that living with you means care visits. Tell her, it’s for you, not her. It’s so you have time to be with her, sort the children, know she’s safe etc

If you do move her in ... your roles will be reversed. You will be parenting your parent. Yes, she will make you feel like you are 14 a lot, it’s part of it

There is no arguing with dementia Spending hours explaining why you are doing something, or correcting her mistakes, is not going to work well. When you visit, you can go home & recover. When you live with it, you need to learn how to deal with the frustrations, the little shadow that follows you around & the never ending questions, without being able to leave.

You are under no legal obligation to look after your mum. The duty of care does not rest with you. However, the emotional duty is another beast altogether. Personally, I reached a point where I had to decide to either walk away or move in. I couldn’t walk away. Moving in nearly broke me at times.

You need to make time for yourself, have an outside interest (work, hobby, volunteer etc), you will also need support from your OH & hopefully good friends. It’s not easy. It’s probably the hardest thing you will do. Think back to when your children were toddlers & throwing tantrums. At least then, you knew they wouId get better. If your mum is getting cross at you when you try to sort things out now ... it’s not likely to get easier. I often referred to my mum as ‘an 80 year old toddler”. If she couldn’t do something she’d get cross, if I did things for her that she thought she could do .. she’d get cross.

It’s not all bad You’ll learn how to walk out if the room, then come back in like nothing is wrong & start again. Have a massive stash of biscuits & cake. It’s the best bribe for bad temper.

 

[Sirena]

It sounds as if your mum has reached the stage where she is very anxious when left on her own. My mother reached that stage a year ago, she had very good (self funded) carers in for 6 hours a day who provided companionship, took her out, cooked her meals and generally did anything she needed. But she was still on her own for 18 hours a day, and she started wandering. Neighbours regularly found her outside her flat, upset and anxious, in pouring rain/freezing weather. I lived 2.5 hours away so could not go round and check on her. She needed supervision 24/7 and my solution to that was to move her to a care home near me, I was always very clear I would not have her living with me. She loves the care home, she has company and people always on hand who understand her needs and can reassure and help her.

You say the house is not 'on the way to work', so if you work your mother would presumably still be on her own for part of the day? She has little sense of time, has no idea if it's 5am or 5pm, and wouldn't know if you had been gone 10 minutes or 4 hours so the phone calls would still happen. If she has little grip on day/night, she may wander around in the night and want to know why you aren't awake. It could be extremely disruptive for your whole family.

My mother has not noticeably deteriorated in the year she has been in a care home - in some ways she has flourished, because she is taken good care of. I am sure you would take good care of her at home, but it would have a big impact on your family life. I know a care home is thought of as a 'last ditch' solution, but it can work out very well. My mother would always have said she didn't want to go into a CH, but as I said, she loves it.

 

[Orlaworld]

Thank you margherita and Sam, you make good points.
I often think dementia is like having toddlers around!

Unfortunately, all the ‘professional’ assessments (after a year of different waiting lists) gave us the information that mum had Alzheimer’s, advised me to claim for attendance allowance (which I already have) and then discharged us from the service. As mum is self funding, it is left to us to choose and arrange care.
I suspect that if things became much worse, we may be eligible for another assessment but all anyone ever tells me is how desperately stretched the services are in our area.

 

[Orlaworld]

Sirena, that care home you have sounds lovely. An issue we have is that my mum doesnt think there is anything wrong with her and so far, we have not had any really terrible incidents happen to make her believe otherwise.
She doesn’t wander as such but there have been times when she goes out inappropriately dressed or she goes to neighbours asking for various foods as she has ‘nothing’ at home (!)
I had thought if she lived with me, to try and extend the care so someone is with her as much of the day as possible. And maybe include some even on days when I am at home so it is not always me.
Adding it all up - the costs get pretty scary don’t they - but it might be possible.

 

[Rosettastone57]

my mum is 72, diagnosed with early onset Alzheimer’s and at present lives alone, about 16 miles from me. For both me and my brother it is approx a 35 min journey each way to drive to her house and annoyingly, it is not on my way to anywhere such as work so it is tricky to combine visits with doing other things.
For almost 2 years, I have managed all finances, bills, any paperwork, shopping and house maintenance for mum. I have stopped her driving and I have POA. I check her food and encourage her to eat properly. More recently I have taken on her social activities, trying to maintain contact with friends. Last year, we lived with her for 4 months and it became clear how much she was hiding. As a result, I have tried to increase support for her.
I feel that when she is living alone, she becomes worse. Both my brother and I average around 8-10 calls a day from her but recently, she has been calling earlier and earlier (5.30am) and much later (up to 1.30 am). She isn’t aware that it isn’t a great time to call and she is not calling because of a crisis. She does sometimes remark that no one is around when she walks the dog (possibly because it is 5.30!). I know she is lonely and I know she spends much of the day watching tv. She also happens to live in a totally quiet cul de sac where nothing happens and you could go weeks without seeing another human.
More worryingly, recently she has had several episodes where she phones in a panic looking for her mum (who died many years ago) or telling me there are people in the house (when there isn’t). I keep thinking that these symptoms are made worse by her being alone so much. We try to visit several times a week and I have arranged 3 different carers to visit and take her out each week. But that is still many hours alone.
It would be entirely possible to ask my mum to come and live with me and I veer between thinking this is a good and practical idea, and feeling terrified as thIs is pretty monumental stuff. I live with my partner and teenage kids and it would obviously impact everyone’s lives. If she did live with us, I could hopefully park the money from her house sale into savings so were she ever to need a care home, the funds would cover it. But meanwhile, there is just the basic day to day stuff to contend with.
I know many of you have experience of having a parent move in and I wonder what you wish you had known beforehand? Or what would you advise someone else to do? With the benefit of hindsight, would you have done things differently?
Right now I have the guilt as I feel I maybe could and should be trying to improve the quality of her life whilst I can.
From her point of view, she has talked about moving and been keen to do so (especially recently - I was surprised by her enthusiasm at the idea of selling up,having previously been totally against the idea). She likes the idea of a place closer to us but is unrealistic about living alone. She would be lost within minutes of walking out of a new place and I think we underestimate how well she copes now simply because she has lived in the same place for over 30 years. She hints that she loved it when we lived with her last year (which was always only going to be a temporary thing whilst our house was repaired) and she “jokes” we should live together.
I think sometimes that my biggest worry is that most people on meeting my mum would think she was fine as she hides stuff pretty well. And she will get cross with me or upset when I try to sort things out - to be honest, I end up feeling like I’m 14 all over again! What I’m trying to say is that this is not some sweet little old lady who will blend in with the furniture. When I stayed with her, she wanders about till she finds me and constantly asks what we are doing next like I am chief entertainer. It’s tiring.
But if I leave her living alone, am I condemning her to becoming worse far quicker??
Sigh. Sorry for long post. Thank you, as always, for your wise words.

Think very carefully about this. My mother-in-law had mixed dementia, lived on her own,and family members made a decision many years ago, she would never live with us or any other family . Whatever the circumstances. Others will be able to give you better experience of their loved ones living with them,but by the time my mother-in-law was at the stages you're describing, to be blunt, we were considering full time care.

She couldn't be left ,wasn't safe on her own for hours on end,was reliant on carers for meals and food preparation . Eventually she went into hospital last year and we started a search for a suitable care home. She was self funding, so was easily arranged. It came to the point where her needs were so great ,it outweighed her wants. We were just dealing with crisis after crisis, and when incontinence came into the mix,we knew we had reached tipping point. We both worked and we just couldn't deal with my mother-in-law anymore. We had no life other than her. The best decision we made was 24/7 supervision, which meant a care home.

 

[Sirena]

Sirena, that care home you have sounds lovely. An issue we have is that my mum doesnt think there is anything wrong with her and so far, we have not had any really terrible incidents happen to make her believe otherwise.
She doesn’t wander as such but there have been times when she goes out inappropriately dressed or she goes to neighbours asking for various foods as she has ‘nothing’ at home (!)
I had thought if she lived with me, to try and extend the care so someone is with her as much of the day as possible. And maybe include some even on days when I am at home so it is not always me.
Adding it all up - the costs get pretty scary don’t they - but it might be possible.

I suspect she will never think there is anything wrong, even if something terrible happens - because either she will have an explanation which makes it not her fault, or she won't remember it. It is extremely unusual for someone with dementia to agree to go into a care home, so whether it's next month, or in two years' time, it would be you who had to make the decision. Just bear in mind that whatever choices you make, she will deteriorate as that's the nature of the illness.

 

[Ohso]

I feel in a similar position to you, although I do not have children to worry about.
My mum is 83, with Alzheimer, she is unable to look after herself so has a combination of carers ( 2/3 times a day for medication) and a friend (paid) to come in for 2 hours Monday-Friday, I also visit every day at 5.30pm and twice at weekends 11.30/5.30 my mum is at the stage that she forgets she has had visitors so feel she is alone and looks back on her day and complains of being isolated, abandoned and lonely.
I actually live in the next street to mum so visiting is easier for me time wise, Im not having to travel but also offer on a regular basis that she consider moving in with me, to me, a care home is a step too far and moving in with me would not be mums choice either as although we get on brilliantly (now her paranoia is under control with Rispiridone) she also wants to be in her own house with her own things, so I am currently tying to increase the companionship visits by another couple of hours a day ( still cheaper for her than a care home)
I several pros and cons wriggling in my head.
I wouldn't feel able to go away for weekends or holidays any more, I can do this now as I simply put in additional care.
There would be no separation, I would be on call 24/7 and I know I would feel guilty not sitting in the same room as her if she was awake and constantly checking on her if she wasn't.
I have suggested that she come to me for a trial, to see how it works for both of us, that way she can change her mind at any time, she is in the lucky position of owning her home so she could leave it for a while till she decided if the move was permanent ( me too)
I have also suggested a 'retirement (care) home, so she has company, she doesn't like the idea so I suggested trying it for a week, some days she thinks she might give that a go, but always with the promise that her home will still be there if she changes her mind - which it would be, I would want to give her the option of returning home, even if it meant a live in carer or me moving in with her, which is also a possibility as I would do it a couple of nights a weeks so spend evenings with her then sleepover and leave early the next day.
There are so many options to consider but at the moment I am content to up the hours covered by others till she needs more personal care than they can give her or the cost and her needs become so great that she is better off in a care home.
I have to say that if I had teenagers, having read others experiences of this horrible condition I would not be considering her moving in with me. I am also sure if mum knew what was ahead she would fully understand and support that decision.
I hope you find a solution you feel happy and comfortable with x

 

[canary]

I wondered whether mum could come and live with me. but I knew she would have trouble with the stairs and downstairs is all open plan. Nevertheless I got mum to stay with me for a while and, like you, was shocked at how much she was hiding. I had not realised that she was awake and up and down stairs all night (I hardly slept a wink) and I also had not realised that she was becoming incontinent.

If your mum does come to stay with you then it would be a good idea to have a plan B in case it doesnt work out. Also, decide beforehand what your lines in the sand are. Could you deal with incontinence? What about when she refuses to wash/change her clothes (and starts smelling)? Could you deal with aggression - what about when it is directed towards your children? Many people find that the person with dementia loses the understanding of family relationships - my mum thought she was married to one of the residents in her care home. How would you handle it if your mum becomes convinced that she is married to your husband (making you his "bit on the side")? How would you stop her when she insists on "going home" when you know she will get lost - no good telling her not to as she wont remember and if you lock the door she is likely to get out through a window or hammer on the door and shriek until you open it (not much fun at 3.00am). You will be accused of all sorts - mum was convinced that I was stealing her money and was hitting her.

You might try reading some of the long threads which chronicle life with a person with dementia
Hillybilly is no longer active on the forum, but you might like to read her thread - her mum arrives at her home at post 50 (on page 3) https://forum.alzheimers.org.uk/threads/becoming-my-mums-carer.91480/page-3
Tin looked after her mum right up to the end https://forum.alzheimers.org.uk/threads/oh-brother.72684/

 

[Spamar]

And read Ann Macs So Bizarre. She had husband, children and job.

 

[canary]

What about those cable locks on the windows, so they can open them but not get out through the gap, would they then just go to another one and eventually give up trying to get out and go back to bed?

They dont usually give up, Tins mum used to go round and round trying every door and every window, then start again on the doors, go on to the windows............. round and round.
They usually also get highly distressed and the compulsion to get out get worse and worse. Ann Macs MIL used to phone the police or bang on the windows screaming for help. They need an actual person there to calm them down and do whatever is necessary.

 

[myss]

Think very carefully about this. My mother-in-law had mixed dementia, lived on her own,and family members made a decision many years ago, she would never live with us or any other family . Whatever the circumstances. Others will be able to give you better experience of their loved ones living with them,but by the time my mother-in-law was at the stages you're describing, to be blunt, we were considering full time care.

She couldn't be left ,wasn't safe on her own for hours on end,was reliant on carers for meals and food preparation . Eventually she went into hospital last year and we started a search for a suitable care home. She was self funding, so was easily arranged. It came to the point where her needs were so great ,it outweighed her wants. We were just dealing with crisis after crisis, and when incontinence came into the mix,we knew we had reached tipping point. We both worked and we just couldn't deal with my mother-in-law anymore. We had no life other than her. The best decision we made was 24/7 supervision, which meant a care home.

Hi @Orlaworld You've been given some good advice here. This post above mostly reflects my viewpoint on deciding to live with someone with dementia.

I've not lived with my dad but stayed with him for a couple days at a time when his dementia had not taken a hold on him as it has now and even then at times I felt an enormous relief when it came time to go home. A sibling now lives with him as the dementia has left him needing 24hr care and we're fortunate that a number of relatives will tend to him on daily basis while in his home so that my sibling doesn't have to be burden with it all.

That said though, your family need to be aware of the symptoms of the illness and how this might be seen or even disrupt them. I know with my dad he tends to move and sometimes break household belongings/furniture despite being frail. There's more times that I've come to his house to find what I view is weirdness but what he views as fine such as his bedding stripped and spread across the stairs, crockery placed by the front door, that letter that you've been waiting on tucked up in his cardigan pocket and him having no idea how it got there, etc. And as the post above says, there's the incontinence - including finding body waste in and around the house - and the attempts to wander outside with/without clothes, etc.

There's a lot to think about and to let your family know about what may happen when a person with dementia moves in with you all. All the best x.

 

[Jaded'n'faded]

You have teenage children - would it be fair on them? How would they feel if your mum gets difficult or takes a dislike to one of them? How would they feel about carers coming in and out? Would they still feel able to have their friends round with your mother there?

You've read up on dementia, you've thought it through and considered the practicalities. I bet your children haven't. How would you feel if they become distant or stay away from home as much as they can because they struggle with your mother?

My kids are 22 and 25 and my mum has been 'bad' for the last 2 and a half years. My kids have only visited her in the CH a couple of times. They were shocked at the change in her. She didn't recognise them at all. They found her dementia very upsetting. I discourage them from visiting now.

I understand why having your mother move in seems like a good solution - in many ways it would be. But very very hard for everyone - especially your children.

 

[Bunpoots]

My dad lived very close to me. I live with my 2 girls who were in their early twenties when dad started to get bad. We did discuss dad moving in with us but apart from the practicality he would've driven us mad and we him!

So we supported him in his own home with the help of a gradually increasing care package until it was no longer safe for him to be at home alone. My girls were keen to help. Dad was always good to us and they loved their grandad... But it was difficult and neither girl lasted more than a few weeks before they had to admit that they were not emotionally equipped to deal with the changes that dementia brought in their grandad.

I'm glad we didn't move him in. My kids would've moved out if I had. I had to cope alone. That was my choice and I know that if dad had not lived so close to us he would have had to move into residential care ( possibly sheltered housing first ) a lot earlier than he did.

To be honest there were times when dad drove me bonkers with his irrationality but at least I could go home knowing he was safe.

 

[father ted]

Hello Orlaworld,

Thought I would offer my experience for what it’s worth. In short I was working part time and had 2 teenage children living at home, one of whom is severely disabled. After discussion with my husband we agreed Mum would come to live with us. We were at the stage where I would often receive phone calls about stuff not working, locking herself out, not feeling well and the most worrying calls where she said ‘Please come I don’t feel safe’. I was having to drop everything and go over not knowing what I would find and I thought it would take a lot of pressure off me if we were all under one roof. My husband agreed and Mum moved in with us.

After a very difficult 3 months everything settled down. Mum felt safer, there was always someone about, she went to a daycentre 2 days a week, she had a responsibilities like feeding the animals and hanging out the laundry and would accompany me on short shopping trips. She enjoyed when we had visitors. I honestly don’t regret doing it but it was always done within the parameters of what I knew I could and could not cope with. After about 6 years I was feeling the strain. For example we wanted some building work done to maximise our space and she kicked up a fuss about the disruption. She started to complain about my teenage son having friends visit. She didn’t want me to go out even if a sitter was arranged, she would ask for sleeping tablets at 5 pm, her mood could change in a heartbeat and I was always on the receiving end. She started to need physical help with her care but refused to have carers and then started shouting for me 6 times a night. That was the straw that broke this camel’s back.

I wish you well either way isn’t easy and in retrospect I don’t regret it. I would just say think carefully before acting and know in advance what you simply could not cope with. You do not want to carry on beyond your own endurance because it’s not fair on either of you.

 

[Witzend]

I can only speak of my own experience of having my FiL move in with us. To be honest, being relatively new to dementia, we hadn't a clue what we were taking on. I say 'we' but it was me doing the vast majority of it, since my dh was often away for work. We had teenage children still at school and coming up to important exams.

It eventually became unsustainable because of the endlessly broken nights - he was beyond understanding that he should not be waking us all up at 2 or 4 am - or both.
There were many other issues, too, which I found stressful and exhausting in the extreme.
Suffice it to say that when it came to my mother, some years later, I simply couldn't face going through all that again. We supported her at home as best we could, until it was clearly time for 24/7 care in a care home.

Especially if you have children still at school, and any adults needing to hold down jobs, please think very carefully before taking this on.

 

[KathrynAnne]

Everyone is different. My Mum lived with us after she’d wandered from her home and got lost, only being found 20 hours later. She was with us for 2 years and 8 months until she passed away. I have always been really close to my Mum. She was my best friend. We had many challenges and sometimes I felt my life was on hold but I’m so glad I decided to do it.