Am I wrong? Uproot life to take care of mum?

[Shedrech]

Hello @Vixi
A warm welcome to DTP

I hope reading these posts and other threads is helping you

I appreciate that you want what's best for your mum .... but you can't give up your life for her

Let her GP know all your concerns and make it clear that you cannot be in the UK so she will not have your in person support but you will do all you can for her ... same with her Local Authority Adult Services ... it may be that your mum refuses home care etc but the LA have the duty of care to meet her needs, so contacting them for an assessment of care needs will at least flag up to them that she is vulnerable

Do be sure to help her arrange LPAs as this will make it easier for you to support her

You may find something useful here:

Find support near you

Use our dementia directory to find local support services for people with dementia and their carers in England, Wales and Northern Ireland.

www.alzheimers.org.uk

Do keep posting ... maybe start a thread of your own?

 

[Jaded'n'faded]

I think you'll need to change your approach with your mum. Telling her you've found a lovely care home and hoping to persuade her to agree is not going to work!

You've said she won't see a doctor but you could say you've seen the doctor on her behalf and the doctor has said she needs to move there - just for a while - until she is better/stronger. (Even though you know that is not going to happen.) If she protests you could then arrange an appointment with the GP that you could attend with her, so she can 'prove' she doesn't need any help. Maybe even tell her that she can either choose a place (which would obviously be somewhere you've already selected) or a place will be chosen for her...

But definitely deflect the blame so it's not you that is insisting she moves to a CH - often a command from 'someone in authority' is accepted more easily.

I know this all sounds very mean - it may not work for you but I had to resort to similar lies with my mum. (And it worked!)

 

[Wildwoodflower]

Hi @Toopie28,
Your mum sounds as if she is at a similar stage to mine.
I did give up my life to become a carer for my mum, who is 91 and has vascular dementia. While it has certainly been of benefit to my mum, it has been disastrous for me.
I didn't intend for it to go this way. The pandemic and some other factors made it necessary. My mother had made no provision for her illness or any kind of later-life care and I have had to dig her out of a hole of her own making. In so doing I have dug a hole for myself. It is brutal.

It is a full time job for which you will receive no pay and no thanks.
Your personal life will be next to zero.
Your work life will cease and you will suffer financially.
If you have adult children in another country, don't expect to be able to get away to see them.
Don't expect to be able to get away at all.
It is highly stressful and depression is likely.
You will be grieving for far longer than if it were a death.

On the positive side, such as it exists...
You will know that you stepped up to care.
It is finite. There's a point at which you will not be able to cope with her needs alone and she will have to go into residential care.

I would not recommend to anyone the life of a sole carer, unless it is to the people who urge you to go and look after her 24/7. They could do with a taste of it.

Kathy xxx

 

[Toopie28]

Thank you all.
I have read and reread these responses over and over and continue to do so every time that wave of guilt comes over me.

Mum actually did go to the GP with me! She had said to me that morning that she wants "to get better". Oh that broke my heart. (I was going to go on my own if need be with all that's going on)

I wrote out a list of the fantasy adventures as well as the moods, depression et al, and gave to doc beforehand. Mum told her about the "woman" that hides her keys and her terrible memory and the doc said "okay, I'll refer to memory clinic" which takes 6 months. What an awful system!

I think I would have preferred going alone as she asked my mum all the questions and I kept telling the doc to use simple words or at least allow me to translate! (Mum's reverting back to mother tongue)

No meds since she's too old?? 91. Strong as an ox (physically) and doc said reluctant to give anti depressants since that may make anxiety worse. You had all warned me how frustrating this would be, and absolutely right!

I'll be going around this week, checking homes and putting my name down if I see one that's suitable.

In the meantime I was advised that I should call social services and that would probably take... 6 months.

I have 3 weeks before I leave and have to come back in a couple of months but that's better than giving up my life.

@hollyg - unfortunately Mum would absolutely love me to give up my life and take care of her. She's scared of being alone and according to her, I'm the only one that can do it.

 

[canary]

Im wondering whether you could get someone to check up on her once a day.
If you got carers from a care agency to come in would you be able to persuade her to sign a direct debit for payment, or do you hold POA for her? If so and she can afford it, you dont actually have to wait for Social Services.
I would also recommend that you organise an outside key safe so that people can get in in an emergency.

 

[Toopie28]

Im wondering whether you could get someone to check up on her once a day.
If you got carers from a care agency to come in would you be able to persuade her to sign a direct debit for payment, or do you hold POA for her? If so and she can afford it, you dont actually have to wait for Social Services.
I would also recommend that you organise an outside key safe so that people can get in in an emergency.

Yes, working on that now. Caregiver twice a day. The companies I'm meeting with (in Scotland) all have the same response "let's meet but we have no staff". UFH?

Asking anyone and everyone (friends, neighbours) if they know anyone.

Got 2 outside key safes. Back and front.

Now working on smart locks. Have to figure out if I can monitor from US plus the simple thumb turn lock will be easier for mum. Maybe, not sure yet.
Thank you!

 

[canary]

You are very well organised.
I hope you can find someone soon
xx

 

[DreamsAreReal]

Mum actually did go to the GP with me! She had said to me that morning that she wants "to get better". Oh that broke my heart. (I was going to go on my own if need be with all that's going on)

- unfortunately Mum would absolutely love me to give up my life and take care of her. She's scared of being alone and according to her, I'm the only one that can do it.

My mum said the same, she used to say, "I want to do *whatever* when I get better" and and sometimes, "I think I'm getting better", it's absolutely heartbreaking ??. She also wanted me to move in with her or vice versa and I just couldn't. I was in a far better position than you though, because I only lived 30 minutes drive away. My heart goes out to you, and to your poor Mum.

I'm a bit shocked at the waiting time for the memory clinic! That's awful. Covid, I suppose. It has a lot to answer for. ?.

The old "serenity prayer" might sound a bit corny but it's very useful to remind yourself not to stress about things you cannot change and have no control over. You can only do your best; sometimes you'll be tired and stressed and your best won't be much good, but don't beat yourself up over it. Take care of yourself too, not just Mum. xx

 

[Duggies-girl]

My mum said the same, she used to say, "I want to do *whatever* when I get better" and and sometimes, "I think I'm getting better", it's absolutely heartbreaking ??. She also wanted me to move in with her or vice versa and I just couldn't. I was in a far better position than you though, because I only lived 30 minutes drive away. My heart goes out to you, and to your poor Mum.

I'm a bit shocked at the waiting time for the memory clinic! That's awful. Covid, I suppose. It has a lot to answer for. ?.

The old "serenity prayer" might sound a bit corny but it's very useful to remind yourself not to stress about things you cannot change and have no control over. You can only do your best; sometimes you'll be tired and stressed and your best won't be much good, but don't beat yourself up over it. Take care of yourself too, not just Mum. xx

My dad had terminal cancer and as it progressed they stopped prescribing certain medications. When I told him that he only had to take two tablets a day instead of three, he said 'that's good, I must be getting better if I only need two tablets'

Yes, heart breaking.

 

[CathM27]

Not wrong. I wish i hadnt done it, i moved from one end of the country to the other. Give up my friends and my career. Got an ok job, dealing with my mum, I'm very resentful. I have a sibling in the city i left who gave up nothing did nothing, does nothing. My sister abroad wouldnt dream of coming back to help her mum. I'll be looking to arrange residential or home care when i cant manage anymore, i'm not going to bear everything.

 

[TNJJ]

Hi. I gave up work over 3 years ago full time to care for my dad with the help of carers. I have looked after dad since 2016. I also look after mum with shopping etc. BUT I have set a time limit. December for my dad. He is now immobile and needs prompting with everything. Also incontinent. I have no regrets but I do believe there should be a limit of what you can do. I'm 58.Dad 89.

 

[Toopie28]

I think it's more of a panic for me right now. I mean 24/7 panic.

No movement on anything (even private care) and there is either me or no-one.
My friend, who's been great with my mum and I've known her all my life, when I vented that I didn't know what to do and I couldn't start again at my age, she says "I'll come with you and help you pack and you can stay with me and husband".
I told her NO, that I would not stay with her and her husband, she started getting upset and made it about her and why don't you want you stay with us.

I told her that I would no longer discuss this with her and I would do what I can.
With the snails pace that it's going I may have to stay longer and may lose my job.
But I can't leave her on her own.

And that's where I am. Not discussing with those that insist on giving their opinions. Just come on here and keep reading the responses.

 

[Toopie28]

My mum said the same, she used to say, "I want to do *whatever* when I get better" and and sometimes, "I think I'm getting better", it's absolutely heartbreaking ??. She also wanted me to move in with her or vice versa and I just couldn't. I was in a far better position than you though, because I only lived 30 minutes drive away. My heart goes out to you, and to your poor Mum.

I'm a bit shocked at the waiting time for the memory clinic! That's awful. Covid, I suppose. It has a lot to answer for. ?.

The old "serenity prayer" might sound a bit corny but it's very useful to remind yourself not to stress about things you cannot change and have no control over. You can only do your best; sometimes you'll be tired and stressed and your best won't be much good, but don't beat yourself up over it. Take care of yourself too, not just Mum. xx

I think that's where I need to be. I cannot change the snails pace of this process, hence having to stay longer.

And that's ok. As long as she's safe, I'll feel better. I may lose my job, but my priority is mum. If I go back before she's sorted, I'll be a mess.

Thank you - I need to dig out that prayer!

 

[cat999]

I care from afar. I live in the US and Mum is in the UK.
Her dementia has progressed to paranoia, hallucinations, depression( hiding things, not finding and thinking people come in middle of night to move things).
She's not ready for a home yet (and I know if I even tried, she'd just run away)
I came over from the US to try and get helpers to come over twice a day to sort her for keys and locking/unlocking door.

Everyone I speak to just blatantly ask me when I'm moving back. They keep repeating that I must move back to "take care of mum".
Not even, get my own flat and have even an ounce of a life - no, I have to live with her and be at her beck and call.
Mum won't even hear of helpers.
Oh and she's so much better when im here since I do everything for her. ( Which is fine, I know everyday tasks are just so difficult for her)

I've spent all my adult life in the US, it's all I've known.
At my age, (50) trying to get a new job, rent my house in US, just make that HUGE move is so overwhelming to think about.

Am I wrong to NOT move? I knew this would happen when I came over but the more I see mums decline, the more I think maybe they're right.

I am going through my own depression thing right now due to mum's condition so that won't help down-the-line.

Has anyone gone through this (be it near or afar)
Thank you.

Firstly, I think that your mother is ready for a care home and if you found the right one, she would not be able to run away. I used to work for Age Uk and although care homes carry a stigma, they can be the best possible place for people with dementia, especially if they also have paranoia, hallucinations and other mental health problems. If you stayed in the UK, your relationship with your mother would likely reach rock bottom. It would not be mother and daughter but patient and carer. I would not have any qualms about placing my mother in a care home in the same situation. She will get the best care possible and also be cared for by people who understand the nature of dementia and can walk away from it at the end of their day..

 

[Susan11]

I think that's where I need to be. I cannot change the snails pace of this process, hence having to stay longer.

And that's ok. As long as she's safe, I'll feel better. I may lose my job, but my priority is mum. If I go back before she's sorted, I'll be a mess.

Thank you - I need to dig out that prayer!

There is no need to wait. If she is self funding you can find a home now. Just a heads up.... all the Memory clinic did for Mum was give her a prescription for Memantine. If you are self funding they may give you a list of Care Homes with vacancies but you will have to arrange visits yourself.

 

[Toopie28]

There is no need to wait. If she is self funding you can find a home now. Just a heads up.... all the Memory clinic did for Mum was give her a prescription for Memantine. If you are self funding they may give you a list of Care Homes with vacancies but you will have to arrange visits yourself.

Oh well self funding until we can get help. Plus the homes have a waiting list.
Every corner I turn, brick wall. "Due to covid".

I'm calling the alzheimers association and hope to get some of this sorted by this week.

 

[MaNaAk]

Oh thank you all.
You don't know how much this means to me.

I am also here to look at some homes. I know it will happen be it this trip or the next. (care homes in Scotland)

When I mention to mum to just "visit" and see how they are and will be good as she can take care of people as well, she just breaks down sobbing. It's heartbreaking.

I was adamant when I got here that I would be strong and ignore the comments, but they got to me.
And you're right, none of these people have any idea what it's like. They cannot even imagine!
I'm here every 4 months for one month and by the end I'm completely drained, numb and worn out, yet mum seems so much better.

Again, thank you. I cherish all your advice since you all have experience.

Your mum wouldn't want you to give up your life to care for here. I cared for dad and as his dementia progressed I reached the point where I couldn't do anymore. You would be better looking at a home because you could your life in the US at a time when she needs to be in home. Dad had a year in a home and he did things that I never dreamt he would do and it was a wonderful final year for him.

MaNaAk

 

[Clarinda3]

@Toopie28 I just wanted to pop on here to tell you that I think you are a wonderful daughter. My 66 yr old husband has been living in a care home for over a year now. I was ‘lucky’ that this decision was taken out of my hands after an emergency hospital stay. I have finally come to accept that continuing to live with him would have seriously damaged my physical and mental health. I am still trying to recover from the last 6 yrs. There is no easy answer where dementia is concerned. We continue to love the person who was there before this disease took over. Very few people who have not lived with this disease understand it. So don’t listen to them. Stay strong, put your own life first and continue to do the best for your mother which in my opinion is moving her to a care home. Us caring types tend to always put the people we love before ourselves but our lives matter too. You are doing a great job putting everything in place for your mother. Well done x

 

[Toopie28]

@Toopie28 I just wanted to pop on here to tell you that I think you are a wonderful daughter. My 66 yr old husband has been living in a care home for over a year now. I was ‘lucky’ that this decision was taken out of my hands after an emergency hospital stay. I have finally come to accept that continuing to live with him would have seriously damaged my physical and mental health. I am still trying to recover from the last 6 yrs. There is no easy answer where dementia is concerned. We continue to love the person who was there before this disease took over. Very few people who have not lived with this disease understand it. So don’t listen to them. Stay strong, put your own life first and continue to do the best for your mother which in my opinion is moving her to a care home. Us caring types tend to always put the people we love before ourselves but our lives matter too. You are doing a great job putting everything in place for your mother. Well done xh thank you! That means a lot.

Thank you so much! That means a lot to me.
I was actually just saying to someone that I don't know how I'll ever bounce back from this . I went thru a putrid divorce 5 years ago and that was so awful. It took years to put the pieces back together and then this ?
My heart goes out to you and thank you for the kind words.

 

[Sirena]

I'm so sorry you are in this position, it is hard enough to deal with this type of situation when you live nearby. I hope you manage to sort something out so you can get back to the US.

I agree with others that your mother is ready for a care home, so it is definitely worth identifying a few you think would be right for her, and putting her name some waiting lists. I think having carers at home would break down pretty quickly, it sounds like she does better when she has constant company and help which a care home would provide.

As it's possible to self fund, it will at least allow you to speed up the process. I wouldn't try to involve your mother in the decision as it will increase the distress for both of you.