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Carers UK Forum • Caring for mother with Alzheimer's and I'm really struggling
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Caring for mother with Alzheimer's and I'm really struggling

Posted: Mon May 18, 2020 5:07 am
by Saffy
Hello. I am caring for my mother in my own home, she is 86 and has Alzheimers.
I am finding it really hard now and I'm struggling.

I brought my mum to stay with me about nine weeks ago.
Before then, we -my two grown-up children and I- had been settling her into her own home with carers going in four times a day. Having the carers going in was relatively new, as prior to that she had been living with her partner of 20 years, but it had become a safeguarding issue as we learned he was not looking after her and he was being physically and verbally abusive. She had initially stayed with me for a few weeks until her partner had left the home and the carers were in place.

I had found it hard then doing the continual care of my mother which had been suddenly thrust upon me, it wasn't something I was use to doing.
Being honest I must say that I was glad when everything was set up for her to be able to go back to her own home.
I stayed with her for a week or so to settle her in. However, the carers situation wasn't perfect and we found ourselves constantly correcting mistakes that were being made, ie medication missed, doors not being locked and general duties being forgotten, it was very worrying. We had to constantly monitor the situation with the carers and do so many things ourselves, what we thought would be easier with having carers attending was turning out not to be, and it had in fact become a full time job for us. Apparently this was due to 'teething problems' I was told by the care company manager.
It was also becoming apparent that my mother was not as able to manage during the times she was left alone in between carer visits, we had to keep a check on her and be on call in the evenings for the sensor alarms going off, which they frequently did.
During that time we became to realise that a care home was going to be the better option for my mother. We were just beginning to look into it when suddenly the coronavirus was upon us!

Because of the coronavirus and knowing the carers would be going into my mother as well as having seen numerous others before her, I took the decision to have her stay with me to protect not only her, but also myself and my children who would have been visiting. We could then all lockdown and stay safe.
Although it has never been easy, I was managing everything much better to begin with.

Nine weeks on and I am really struggling doing it all by myself. I do live with my 24 year old son but he has ME, and a hereditary connective tissue disorder, which I also have, and he manages his OCD.
He has helped me with some things on many occasion, and allowed me to have a rest from time to time which I am so grateful for, especially when I have been ill -which is often- and although I was coping well at first, as times gone on it has all become too much. All the washing, cooking, cleaning duties, as well as the care of my mother falls to me, and I am exhausted now.
It is very hard when I am ill and dealing with pain on a daily basis, having to continually push myself on, and now my mother is needing more and more care, I can barely catch my breath. She is not able to remember to do basic bathroom, toilet tasks. Its so sad, she is becoming more and more confused.

My mother is perfectly cared for, but I am physically and mentally struggling with doing it all, and I can no longer be entertainment officer as well as doing everything else which I feel guilty about, and for complaining and thinking about myself, but I'm just being honest. I know I need help now, but where can it come from?
We are on lockdown, we are all vulnerable, and I am shielding!

My mother is also waking at 3am most nights now with confusion. I calm her down and make sure that she is ok.
I'm unable to sleep again afterwards though, and so I'm shattered and running on empty the next day.

The lovely home we were hoping for her to go into before this lockdown is not accepting new clients in this current situation, would it even be safe if they were?
I hoped I could carry on doing the care until the virus had eased off and it was safer, but I don't know now if I can continue like this? I'm doing the best I can but its so very, very difficult because of my own health.
I would usually have to pace and manage, and without doing, my health is becoming worse.
I just don't know what to do?... I want to hold on to be able to get my mother into the best place like we were planning.
I don't want to fail, I don't want to let my mother down, or my family.....Its so hard.

Re: Caring for mother with Alzheimer's and I'm really struggling

Posted: Mon May 18, 2020 5:36 am
by Saffy
Thank you to everyone for reading my post, I'm sorry its long.
I'm grateful for any replies and to hear I'm not the only one going through this, which is what it feels like right now.
I wish you all the very best xxx

Re: Caring for mother with Alzheimer's and I'm really struggling

Posted: Mon May 18, 2020 3:43 pm
by Melly1
Hi Saffy,

oh yes, I understand the strain of caring for someone 24/7 under lock down and how draining and exhausting that is.

I can only see three solutions

- your Mum moves back to her place with either 4 care visits a day or with a live-in carer or

- your Mum moves to a care home that will accept her or

- You have outside help into your home (but this is risky as your are shielding) those supporting your Mum/coming into help with the household chores, would need to know you are shielding and follow the appropriate guidance for attending the home of someone who is shielding.

Typed out like that, I think option one is the best one, but that is only my opinion.

Melly1

Re: Caring for mother with Alzheimer's and I'm really struggling

Posted: Tue May 19, 2020 10:13 am
by Anne001
Hi Saffy,

This would be difficult under normal circumstances. I can only really see two options of support. Firstly, Social Services - are all care homes now refusing to accept new people in your area? They would be best placed to advise. Even if it were only for respite care, that may be a temporary solution. That of course will also depend on finances and who would pay for either respite care or a live-in carer. Secondly, your GP. Tell them how you are feeling and how your own health is suffering. Phone appointments in my own area are relatively easy to get. Would your mum's GP be able to provide a light sedative for your mum so that you could get some sleep?

Hugely difficult times for anyone caring. I too know how exhausting it can be. There will be an end to this particular circumstance and once your mum is settled into a nursing home, you will feel a bit better but of course no-one knows how long this will last.

Good luck, Anne

Re: Caring for mother with Alzheimer's and I'm really struggling

Posted: Tue May 19, 2020 10:31 am
by bowlingbun
As you have already found "a lovely care home" make it very clear that you want mum to go there, talk to the home, make all the preliminary arrangements, especially sorting out the money side of things. Label mum's clothes (unless the home have their own labelling system, write down a list of what she should take, etc. etc. so that as soon as possible, mum can go. Don't think you will contact them later only to find there are no vacancies as others have got there first!

Re: Caring for mother with Alzheimer's and I'm really struggling

Posted: Tue May 19, 2020 4:18 pm
by Ingrid Carers UK
Hi

Maybe have a look at our well being page Saffy, I've attached the link for you

https://www.carersuk.org/help-and-advic ... -wellbeing

It might also be worthwhile dropping into one of our share and learn and/or care for a cuppa. I've also attached the link for you, you will find more information on the sessions and how to join Saffy.

https://www.carersuk.org/help-and-advic ... ne-meetups

best wishes
Ingrid

Re: Caring for mother with Alzheimer's and I'm really struggling

Posted: Thu May 21, 2020 5:51 am
by Saffy
Thank you to everyone for taking the time and trouble to reply, I really appreciate it.
I'm sorry that I can't figure out how to reply to you individually, but please know that all your comments have been hugely helpful to me. Although I still don't know exactly what I am going to do for the best, I have started the ball rolling on the care home option and have spoken with the owner of what might be a suitable care home. It meets all the requirements and it is encouraging to know that all staff are wearing PPE, with visitors beginning to be allowed only in the garden while social distancing. I am going to visit- being kitted out with PPE- and will take it into consideration.
The other option might be to move my mother back to her home, I would stay with her and get the carers back in to help, providing they are following the safety guidelines for this time.
I am just operating day by day. I know I have to put a plan in place which is good for my mother, before I become totally burnt out. Thankfully some days are better than others, and after a nights sleep - which is rare- things never seem quite as bad, I then have some energy and mental clarity for what ever the day ahead may bring.
Thank you again. I hope you are all ok, and I sincerely wish you all the very best xxx