Would you live with your mother?

[Tintackedsea]

My situation is:

My father is dying. We have only a few days left with him. We’ve been nursing him at home for the last couple of months because that’s what he wanted. He’s now pretty much out of it and we are managing his pain with the nurses. It’s been a long summer and my siblings will have to return to their families

My mother has Alzheimer’s and dad and I have cared for her for the last few years. She doesn’t understand what is wrong with dad; she can’t cook, write, read properly or reliably dress herself; she sometimes doesn’t know us. She is continent and can still take enjoyment in life. My eldest daughter (11) loves very much her and they are very close.

She cannot be alone at night and will need some supervision throughout the day. We currently have carers 15 mins x3 a day. She is not safe with knives, kettle etc. but potentially will sit and watch the TV or look into space. Not sure.

We live right next door with a gate between us. We are renovating our house and it’s quite extensive. We will eventually have 5 beds and two living rooms. It’s very slow because we are (literally) doing it ourselves. Probably at least another year until we finish. Mum lives in a 5 bed house. Lots of space. But full of 50 years of marriage. Full of hazards. Probably needs work.

The care home is £2k+ a week and the waiting list is determined by need. There is only one care home in this part of this area that is at her level. The other one is for people with medical needs. There are no places at the moment. The next nearest care home is 60 miles away and also has no spaces. If I don’t take her they will put her in respite but it might mean moving her very far away or it moving and changing or ??? Really don’t know.

My head is mush. Do we move in with her? Does she move here? Do I put her on the waiting list? Should I look after her myself? How do I tell her when my dad is gone? How do I manage her care? What am I not thinking of?

Wwyd?

I'm sorry that you are in a difficult situation, OP. However, based on what you have said, your mother needs proper care - presumably respite care, pending a move to a permanent care home.
Given the nature of her condition, she needs to be looked after by professionals and I don't think it would be appropriate for her to live with family members. And, of course, it would absolutely not be fair on you and your family to have to be her carers.

Would a live in carer or team of carers be an option?

@Nevertrustacop I think I would really struggle to find someone. We live in a very remote area and I don’t know how I would even go about finding such a person. Certainly there are no agencies or services advertised.

Full time supervision, including overnight, is simply not feasible for you to take on without very significant outside support. And will be significantly harder in a domestic environment than a purposely designed care setting.

You may be able to manage short term, but if there's a waiting list for residential care you need to get her on it.

As an interim solution, I know several people who've found good carers through care.com, and have managed more flexible arrangements than most agencies are set up for.

It is very likely that your dad dying will lead to a deterioration in your mum's condition. There's also a big danger that she won't remember your dad has died. Could you cope with being asked where your dad is many times a day for months/years with no escape?

I'm sorry to hear about your Dad. I would probably get her on a waiting list and either move in with her or vice versa, especially as it may help you get your place done more quickly if it's unoccupied.

I would at least try it and see what the reality is. You could get a routine going for her, which might help you both, e.g. she watches these shows at these times, eats at these times with you, plays a board game or equivalent with you at this time, has a quick walk with you at this time. Obviously there are many 'with you's in that list so you'll need to decide if that works, or substitute someone else in.

I know you aren't beholden to care for your parents, but I would want to at least try (if they were happy with the arrangement).

i would contact the Alzheimer’s Society.

<a class="break-all" href="https://www.google.com/url?q=www.alzheimers.org.uk/&sa=U&sqi=2&ved=2ahUKEwiP57X_rImPAxV7UkEAHbdkI5YQFnoECA0QAQ&usg=AOvVaw0pydqlCm36-mM8BN8QOEr2" rel="nofollow" target="_blank">Alzheimer's Society

https://www.alzheimers.org.uk

they have been extremely helpful with my sister due to my BIL having dementia.

its a question of keeping your mum safe and it sounds as though she does need 24 hour care. As much as you love her, you need to consider your physical and MH .
sorry about your dad . My thoughts go out to you at this very sad and difficult time for you and your family .
you do need to ask for help,no one knows what your going through until to tell them.
ask a family member if they can help until you find a placement for her in a care home.
definitely respite . Every carer has feelings of guilt, you never know your mum may even like the experience, many do.
huge adjustment for you, but keeping your mum safe is a priority.

Sorry not sure if it’s the right link, have tried to edit several times.

Dementia support
tel:0333 150 3456 Call: 0333 150 3456
If you're affected by dementia or worried about a diagnosis, or if you care for someone with dementia, our trained staff are ready to give you the support that you need.
Opening hours: Mon to Weds: 9am – 8pm, Thurs and Fri: 9am – 5pm, Sat and Sun: 10am – 4pm
The Dementia Support Line is closed from 2.25pm to 3.35pm on Thursday 14 August.

I’m going to go against the grain here and say that I think respite care might be unsettling. It’s easy to assume she will be looked after by ‘professionals’ but they will be low paid carers and will be strangers to your mum and they won’t understand her needs/routines/likes. Plus she will be taken from her home environment, everything will be different so she might get confused.
i know this doesn’t help you because you can’t do it all. I would find live in carers, or carers that do 2hour plus visits. Rally your family around, this isn’t all up to you. And thinking long term, get her on the waiting list for the local care home.

im really sorry about your Dad too. You are going through a lot at the moment

Are you in the UK? If so Adult Social Care can help you find carers. If she doesn't have night time needs, she might be able to be supported at home.

It says in the OP that she cannot be left alone at night.

Start contacting the services that can help
Alzheimer's soc as above
Age UK (or Age Scotland if appropriate)
Your local authority adult social care team

They will help you with what is available and needed.

I can understand that, especially at this time, you want to look after her yourself. But think about what full time care would mean for you and your family for potentially years to come.

I'm so sorry to hear about your dad.

Honest answer to your question? No, I wouldn't live with my mum. This is something I've thought about a lot recently - my DM has early-moderate dementia, and my DF is now transitioning slowly from husband to carer. He's coping well, but I'm very conscious that the whole situation could change in a heartbeat. (He had his first proper fall last week, and although he's fine, he could very easily not have been.)

I've also watched my MIL care for my FIL with dementia at home until shortly before his death, and it's made me look hard at myself. Quite simply, I know that I wouldn't have the patience to care for mum myself. I already find it hard to deal with the endlessly repetitive conversations and questions, the permanent anxiety and need for reassurance and explanation, and that's just during regular visits and phone calls. And that's without (yet) any personal care needs. I just couldn't do it full time. I watched my MIL struggle similarly to care for her husband - she was often impatient and cross with him, because it's just so hard to stay calm and patient 24 hours a day.

Also, I quite frankly wouldn't be willing to change my lifestyle to accommodate caring, and perhaps this is selfish, but again I'm trying to be really honest. DH and I both work full time and have older teenagers. We're out of the house by half past seven, and we're back home at unpredictable times - anything from five until nine, depending on work and the kids' commitments after school. I spent 10 years as a SAHM, and while I loved that time, I feel like now is the time I get to live more for myself. I love my job, and the fact that I can work late when I need to. I love having the flexibility to decide on the day that I'm going to do something in the evening, because the kids can happily fend for themselves if DH or I aren't there. I love the fact that our lives now are busy and sometimes unpredictable. I love the fact that I can travel occasionally for work without needing to make a mountain of arrangements. If anything, I plan to dedicate myself more to work over the next decade, rather than less.

I'm just not prepared to change my life to the extent it would need to change in order to have DM live with me. I know that it will need to change a bit, and that more of my weekends will need to be spent supporting my parents as they start to struggle more. But living with them - even with full time carers - is just not a line I'm prepared to cross. When I was a teenager, I watched my DM make the same decision - not to have her DF live with us, after her mother died. I know she felt desperately guilty at the time, and I appreciate those feelings much more now than when I was 16 - but I also think it was the right decision.

OP, your feelings and your situation might be very different from mine, but at the very least I would urge you to only do this with your eyes wide open. Given the situation with your dad, you're probably not up for book recommendations right now, but if and when you are, I would recommend reading Keeper by Andrea Gillies. It's her account of moving her PIL in with her family, in a large house in a remote area of Scotland. Her MIL had mild Alzheimers at the start, which of course progressed. It's a very interesting read (she talks a lot about her research into dementia itself, as well as her own life), and a very sobering account of the massive impact of the decision on her family's life.

Very best wishes to you for the last days with your poor dad, and for the decisions that will come next.

That's such a hard situation I'm sorry :(

Could you explore at home care either at your mum's house or with her at yours? That way all support doesn't fall to you and you can focus on grieving your father as much as possible. Sites like https://lottie.org/home-care/ will show you home care options in your area - maybe even just some visiting care might help?

All the best to you, your dad and the rest of the family.

Your mother needs professional care that is directed towards her needs…are you expecting to inherit the house?

If you are in the uk I would give Admiral dementia helpline a call. You can speak in depth to an experienced nurse who will explain your options and help clarify your mum’s likeyneeds.

Hello @Tintackedsea . If you're in the UK your first step is to contact the local council about a care needs assessment.
You say that residential care is the basis at the moment but it might quickly transition to nursing needs. If you go for a residential only home then your mum might have to move which would be very unsettling.
It might be useful speaking to the care home manager as they are clued up.
The answer to your original question...no I would not live with my mum . I love her deeply, she has mixed dementia and had to go into a nursing home. We tried our best to keep her in her own home after my dad died but it was too unsafe.

Hopefully you have PoA and can sell her house and use it to pay her residential care.
I am arranging this with my mother while she is still fully competent (in her 80s) Have encouraged her also to take equity releaseto free up funds for this eventuality also, and up enjoy her remain b active years.
Habe arranged my own PoA with my own sons also with this intent.

Hi OP, I’m so sorry for what you’re going through. Watching a parent die is heartbreaking let alone what you’re dealing with with your mum.
Speaking from experience of this awful disease, I would look at live-in carers. We’ve ended up doing this after going through residential homes and one of us giving up work and caring for her for a while. It’s tough and consuming. You can’t help but feel resentful about losing so much of your own life, watching them deteriorate is awful and the personal care does not come easy to some of us. I’m going to sound really harsh but please look at what is best for you as well as her. Be slightly selfish. We didn’t think of ourselves and then when the family member turned abusive which they did extremely often it all turned to shit. It’s so so difficult to take it on full time. Live in carers have meant we have been able to check on her all the time but also didn’t resent her for taking over our lives. Sending you strength OP.

Can you get an updated assessment of her needs? My father cared for my mother who had dementia for many years. Eventually, unable to cope any longer, he arranged for her to go to a local care home. She had never been fully assessed previously but the move to the home clearly exposed how needy she was - she didn't even understand where she was living or realise that she wasn't at home. Being at home had masked the extent of her needs. If you can get an assessment, you might find further decision making falls into place.

I have lived with dementia (my FiL) and TBH when it came to my mother a few years later, also dementia, there was absolutely no way I was doing it again. With FiL we were blithely, utterly clueless about the daily practical realities of dementia - and how stressful and exhausting it could be.

Dementia is only ever going to get worse, and unless the person dies first, there will almost inevitably come a point where they need 24/7 care and supervision - by which I mean someone on hand ALL day, ALL night, 365 days a year.
Which is virtually impossible to provide in a normal family setting - at least not without massive levels of stress and exhaustion for carers.

I would just add, do please ignore those pious, sanctimonious types who like to tell you that they’d NEVER! put a parent in a care home. Almost certainly they will have no idea of the practical realities of dementia.

No, absolutely not. You’ll be run into the ground.

With lovely MiL we tried organising care in her home. TBH it was costing us far more than a good care home and we still had to drop and run for every little thing she did. That was with cameras in the home to ensure her safety. it became very clear in less than a month that her dementia was far worse than anyone realised and that her home really was not physically safe.
It was a struggle and everyone was on tenterhooks about what MiL would think to do dangerous next.

She finally landed in an assessment unit and they said she needed a care environment dedicated to dementia that could and would keep her safe. It’s been worth the weekly charges as the carers are lovely and MiL is mostly happy thinking she is in a posh hotel that her family drive past from time to time to see her and take her to nice coffee shops. We are less shattered, less on alert and able to live our lives too. Caring about someone does not mean you have to do the day in day out 24/7 care. That is absolutely exhausting as you never get a break.

As someone who lives with their remaining elderly parent who has dementia, get her on the waiting list ASAP with a view to moving her there when a space comes up. Your only other option is a live in, but that will cost almost as much as a home and your mother's house likely needs work to make it safe for her (wet room, stairlift, grab rails etc).

I'm sorry about your father, losing a parent really sucks. 💐

I'm sorry you're in this tough situation OP. I would want to help my mother but I know I'm not in a position to offer 24/7 care and supervision for very long. If your mother isn't safe, sometimes difficult choices have to be made. It doesn't make you a bad daughter if you can't step up to the level needed. An in home carer would be ideal. I'd chase up that and do you best with what options are available to you and what fits with the other needs in your life.