Mum in respite, might not come out.

[Jojo4444]

My mum age 85 went into respite lat week while I was away for long weekend. Social worker suggests it is time for 24 hour care. He has arranged for her to stay another week so we can discuss the way forward and give me a longer break. I went to visit today and have had an hour of her saying I don’t love her, I’ve put her away, I’ve had it all planned. She wouldn’t have treated her mum like this. I can’t be bothered with her.
She could no longer manage the shower or wash her hair. Is almost unable to walk, god knows how she has dragged herself upstairs each night. She can’t change tv channels or prepare food, or even see food in fridge if I make it. I have been going every night after work to cook and do medication for 18 months now. She had carers on morning but won’t take tablets for them. She doesn’t change clothes, isn’t drinking so she doesn’t need toilet, won’t use commode that I got in kitchen as she forgets it’s there. Often only eats meal I do at night and perhaps a slice of toast for breakfast. Over last few weeks she sat without fire on because she couldn’t put it on or frightened she couldn’t turn it off. She leaves messages on my home phone while I am at work, sometimes more than 20 in an hour or two, but says she doesn’t. I know she needs to be in a care home but I have to admit part of the reason is I want my life back. My husband has had to take up all the slack at our home and even my teenage son is “suffering” due to my short temper and worrying. She is miserable at her own home, lonely because she won’t have anyone in and all her friends have died -she only had one friend because she keeps everyone at a distance. She wouldn’t move to bungalow or flat when she had chance and now that ship has sailed. She wouldn’t have stairlift or carers and occ. therapist says too far gone now. Every time the phone rings at home or at work my heart sinks in case it is her or about her.

Sorry for long post, I know she needs to be in carehome but I still think how much of this is to benefit me rather than her. ☹️

 

[Amethyst59]

Hello! Welcome to TP, but I am sorry you are going through such a hard time. My husband had respite in late February...and has stayed. And it is better for both of us. He is no longer spending time alone, while I take time out. He has company all day, unless he chooses to be in his room. He no longer has an overtired and very grumpy wife looking after him. I am able to sleep at night, so when I visit him we have a nice time together. My health was suffering, and now I am medication free and sleeping well, naturally.
Don’t feel guilty that you need more help with your mum. Don’t think that it is just you, will benefit from the change. A team in a home, can provide better care than one person at home.
Have you found the right place for her permanent home? Is it where she is now? These are the questions you could be asking, rather than question the decision...which sounds as if it is a done deal.

 

[karaokePete]

Hello @Jojo4444, you are welcome at TP and will get support here. No need to say sorry, long posts are understood as we all travel the same road.
Don't let what we call the guilt monster stop you doing what needs to be done for both your mum and yourself. Your mum is entitled to the care she requires and you are entitled to your own family life.
Do take a good look around the site for information and ask any questions you need to. If you feel a one to one chat with someone would be of be benefit the helpline details are
National Dementia Helpline
0300 222 11 22
Our helpline advisers are here for you.

Helpline opening hours:
Monday to Wednesday 9am – 8pm
Thursday and Friday 9am – 5pm
Saturday and Sunday 10am – 4pm

 

[DeMartin]

Read your post again. Your mum cant cook, won’t drink, cannot turn on fire........ she’s not safe alone.
My mum was similar, also “saw” people who stayed the night!
To protect her, to ensure her safety, to be sure she had meals, warmth, security I moved her to residential care. I can sleep knowing she’s safe.

Is she happy, sometimes not, she was fiercely independent, but wasn’t eating properly, now she’s secure.

Does it benefit me, yes, I don’t have to race across the country (5hrs) to sort out her problem. I don’t get phone calls from paramedics, I don’t have to fix her shower long distance.

But the main thing is, as much as you love your mum, you have a child, a OH, and they deserve a life too.

 

[Jojo4444]

Thank you amethyst59 and karaokepete.

Mum currently is in a carehome for the respite but thinks she is in hospital! Social worker extended respite for second week but intimated that home might not want her permanently and I should use time to look for permanent place. She is a difficult (argumentative) woman. The home currently has mum in an aged setting rather than dementia section. I think this is a bit of the problem she is really in between the 2 requirements I think.

 

[Jojo4444]

[DeMartin, yes , reading and writing it down has helped. It’s all so raw at the moment. I am so glad I found this forum. I know people have it worse than me, but it’s good to know we are not alone in this.

 

[canary]

I think your mum is probably further on than you think - it is very easy to underestimate how much they are affected when you see them so often
When my mum was at the stage of not being able to cook, or know what to eat, not drinking, not changing her clothes, lonely and confused, the doctor said she was well into mid-stage dementia. She too went into a care home at this point. She went into a dedicated dementia home and she fitted right in; it was the right place for her and she thrived there. It took her a little while to settle, but she put on some weight because she was eating regularly, she was taking her meds regularly, stopped being so frightened and paranoid because there was someone around all the time and she liked the company.

Mum going into a care home benefited me because I was no longer tearing my hair out with worry, but it benefited mum much, much more.

 

[Amy in the US]

Jojo, I'm not where I can reply fully but didn't want to read and run. My mother is a care home success story. Not only is she much better off in her care home than she was at home, but she is content, less anxious, and has a "best friend" and an entire staff to look after her, instead of only me from 100 miles away.

At home, she couldn't cook, shop, bathe, wash her clothing, eat properly, take her medications properly, sleep, pay her bills, and the list goes on. She had accidents and injuries and she was always anxious and miserable. She ended up underweight, malnourished, and both over and under medicated on all manner of prescription and over the counter drugs. It was horrible.

Now she is safe and well looked after and getting the medications and care she needs.

Is she happy? She would probably say no, but she never was happy, even before dementia. She is content, the staff are fond of her, and she of them.

A care home doesn't have to be a bad thing. It can work out, and I hope it does. Best wishes.

 

[Jojo4444]

Thank you canary, Norma Leila and Amy. It is so good to have your replies. Others see things more clearly without the emotional (guilt) attachment. Your replies have bolstered me and your comments remind me of how bad things are. She had 3 slips on the stairs in the space of 4 days about 3 weeks ago. The carer found her sitting at the top of the stairs as she couldn’t get up - that could have turned out so much worse! My mum had also been out knocking on neighbours doors at night about 2 months ago looking for her mum or me. She also couldn’t understand why I went into her neighbours house each night to talk to them rather than be with her. Of course I wasn’t I was going home but she got it into her head I was visiting up the street. I need to remind myself of all these incidents rather than just think of the current more lucid conversations of “why have I put her into the home?”.

 

[EagleOwl]

Thank you Jojo444 for your post. I don't wish to hijack it but it so apt right now for me too.

I am having to make the same painful decisions as you and so many others and I know it is not at all easy or pleasant. You and other kind people in this thread are describing my Mum too. She has had several falls already in and out of the house and has wandered around after dark waiting on Sundays her closed gp surgery thinking it was time for her appointment too and been brought home cold and tired by kind villagers, or not.

Now she is in hospital with a broken arm from a nasty fall and her handbag is missing; I am deciding that I can no longer be complicit in enabling her to stay at home alone. She often says herself she doesn't know what she is doing and she is very anxious and even unhappier than normal, especially now her only friend died after her birthday last year.

She went ballistic when her new bath lift arrived a month ago (wasn't safe to bathe alone or washing properly) despite agreeing to it twice previously so it sits unused in bedroom; she's completely confused and has an increasingly limited life where she cannot go on the bus and shop or even put on her favourite tv programmes, or read or garden; constantly losing her keys and purse, not being able to take her meds.without daily phone supervision (Pivotell dispenser was a god send!); not eating properly and wasting half the food deliveries I order by not putting in fridge etc. and relying on the constant assistance of neighbours and me as only family member in UK at 100 miles away also to to help her keep a semblance of an independent but miserable and completely unsafe life. But she doesn't need carers as she has "family and friends."

I know as soon as the terrible pain goes and she is off the morphine she will be back to her feisty resistant self and refusing all care help I've been trying to arrange.

If anyone has any good tips to share with me now before she is discharged that can help me advocate for her with the hospital team and deal with social services and make sure she gets what she needs rather than wants I'd be super grateful!

Sorry for such a long first post!!!

 

[EagleOwl]

My mum age 85 went into respite lat week while I was away for long weekend. Social worker suggests it is time for 24 hour care. He has arranged for her to stay another week so we can discuss the way forward and give me a longer break. I went to visit today and have had an hour of her saying I don’t love her, I’ve put her away, I’ve had it all planned. She wouldn’t have treated her mum like this. I can’t be bothered with her.
She could no longer manage the shower or wash her hair. Is almost unable to walk, god knows how she has dragged herself upstairs each night. She can’t change tv channels or prepare food, or even see food in fridge if I make it. I have been going every night after work to cook and do medication for 18 months now. She had carers on morning but won’t take tablets for them. She doesn’t change clothes, isn’t drinking so she doesn’t need toilet, won’t use commode that I got in kitchen as she forgets it’s there. Often only eats meal I do at night and perhaps a slice of toast for breakfast. Over last few weeks she sat without fire on because she couldn’t put it on or frightened she couldn’t turn it off. She leaves messages on my home phone while I am at work, sometimes more than 20 in an hour or two, but says she doesn’t. I know she needs to be in a care home but I have to admit part of the reason is I want my life back. My husband has had to take up all the slack at our home and even my teenage son is “suffering” due to my short temper and worrying. She is miserable at her own home, lonely because she won’t have anyone in and all her friends have died -she only had one friend because she keeps everyone at a distance. She wouldn’t move to bungalow or flat when she had chance and now that ship has sailed. She wouldn’t have stairlift or carers and occ. therapist says too far gone now. Every time the phone rings at home or at work my heart sinks in case it is her or about her.

Sorry for long post, I know she needs to be in carehome but I still think how much of this is to benefit me rather than her. ☹️

 

[EagleOwl]

Thank you so much for your post Jojo444!

You just helped me confirm my decision made on way to visit my mother at the hospital yesterday. Sounds we've both come to the same sad conclusion.... I totally understand what you're describing and there comes a point when our loved ones can't cope on their own anymore despite all the support available or accepted.

I wish you all the very best with everything- this forum is incredibly knowledgeable supportive and helpful where sometimes the "experts" aren't!

 

[Jojo4444]

No problem @EagleOwl

Sad as it is, hearing others go through the same thing gives us all a bit of strength and direction.
I’ve just returned from an hour with mum that was sheer torture because I’ve “put her away”. She thinks she can cope and has been managing fine when she has not left the house except for docs and hospital in 18 months. She even claimed to do her own shopping and when I said no I do it then it was explained to me that the reason she doesn’t do it is because I’ve taken over! I still can’t win an argument with her, never could.

 

[Monkstone]

I have been living with & looking after 86year old mum who has now moderate AZ. She thinks her mother died last week and it's been distressing for her. She's wondering when the funeral will be and how her father is. They died 20 years & 33 years respectively ago.
My life has been on hold for 18 months and I feel getting nearer to making the decision for mum to move to the home where she's been having respite care. She was fine in there & was ok when she came out. She wants to go back home constantly, a place she left almost 50 years ago.
The guilt monster is easing and for all the difficulties that life has become for us both , I know I will miss her. I can't seem to let go of being the carer even though I know I need to move back to my own home and get a life back. I try to tell myself that I'm not putting the mum of old in a home but the mum with a disease that's made her loose any independence for her to take care of herself. The evenings are hard as I'm trying to relax while she's sundowning so it's all getting harder. I do wonder the effects of a normal person living the life of AZ through the person suffering. Maybe I'm tired tonight but found this forum so helpful as I know I'm not alone and maybe mum would benefit from full time care, which she needs, from a team of people rather than just me. I will still be her carer but nothing like what I'm dong now.
My siblings come & go, they all live away & support me completely and that its my decision to move mum as I'm the one whose life is most affected.
Mum has respite in a fortnight for 4 nights and I'm going to my own home which is nearby. I'm hoping that I can perhaps think better in the space and decide what is best for mum and me. She goes to day care twice a week which is good for her and me but moving her to a home is something else. This is the hardest decision I have ever had to make.

 

[Jojo4444]

It must be so hard for you. I don’t live with mum so it was never 24/7 for me. Take dare.

 

[Jojo4444]

It must be so hard for you. I don’t live with mum so it was never 24/7 for me. Take dare.

CARE!

 

[Monkstone]

Thank you!
It's hard for all of us Carers and that's why this site is such a support. We all understand how this makes us feel and helps us make decisions.
I look forward to future posts to see how you are getting on.
Take care.