I can’t take anymore

[AprilCamper]

I have been the person my mum relies on her everything for years, even before her alzhiemers diagnoses. I was getting to the end of my capabilities just over a month ago and then she had a seizure and was been in hospital for a month. She was discharged on Monday back to home where she lives alone (Her choice). We discussed over the phone while she was in hospital that as I cannot be the only person she has to help her she would have some
Nice ladies coming in three times a day to give her medication and for company, she agreed, but within 5 mins has forgotten again. I understand how confused she must be with getting used to being back home and also having ladies come in which before she didn’t want ( because I have dropped everything to help her and my whole Life for the last 6/7 years has been planned about what she needs). The problem I am having is that just before bed she is phoning me up and either getting really cross with me for having her “watched” or last night phoning about 20 times and hanging up on me or laughing then hanging up. I haven’t slept properly for three nights and and feeling physically nauseous all the time. I have been crying on and off for three days with the stress, and just don’t know what to do. The care supervisor has been lovely and they have changed the length of visit and time to see if that helps and also listened to my meltdown last night. My mum’s mobility is good but her cognition is worse, without someone with her she doesn’t know what to do and then phones me to ask what she should be doing.
I really can’t see a way forward at the moment as when the carers are with her she tells them she has enjoyed their company and when are they coming back, then five minutes later (evening visit for tablets and company) she is phoning me saying she is useless and we’d be better off with her dead, and that we want her out of the way.
I didn’t go to see her yesterday as I was so upset, my husband went instead, but I don’t want her to think she’s been abandoned by me either.
She is getting up and showered before they come in the morning. We are moving the evening call forward to 6 today as she doesn’t like to get ready for bed while they are there. Also if I get calls tonight at least it will be earlier and I might get some sleep!
I will put on my happy face and go to visit this morning and then this afternoon to help get dinner ready in the hope that the more normal routine between carer visits might reassure her?
I am very much running on empty now and can’t see a way out.

 

[Jessbow]

Take a step back, for the sake of your own sanity.

What are the carers actually doing - get them to make her dinner .

I know its hard, but what would happen if you didnt answer the phone?

She sounds as though she needs full time care really

 

[AprilCamper]

Take a step back, for the sake of your own sanity.

What are the carers actually doing - get them to make her dinner .

I know its hard, but what would happen if you didnt answer the phone?

She sounds as though she needs full time care really

 

[AprilCamper]

She has always said that she does want to be “put in a home”
The carers are doing medication and supporting her to do her breakfast and cook her lunch. She just needs reassurance while preparing it, but often ends up saying “I’m a stupid old woman and do everything wrong”
I go and help get the evening meal then they come for company in the evening.
But although she doesn’t want anyone in her home, she then phones to ask if I’m coming or what should she be doing.
If I am there we have a good time and enjoy walking around her garden etc

 

[Sarasa]

Hi @AprilCamper and welcome to Dementia Taking Point. You'll get lots of support and advice here. It's good that your mum is happy with the carers when they are there, even if she has forgotten that after they've gone.
Like @Jessbow I think it may be time to consider a care home. I know that is something people often want to avoid, but the fact your mother seems to have accepted carers is a good indication that she will probably settle in well. This site www.carehome.co.uk is a good place to start your search. If you scroll down to the bottom there is lots of information about funding etc. You could try some respite first. I know things are tricky due to covid, but care homes do seem to be opening up and it's worth a shot to see how it goes.
I recognise the feelings of upset. When my mother was still at home I dreaded each phone call as I didn't know whether she'd be phoning with a crisis or just a chat. I lived too far away to be there quickly if there was a problem and in the end there were so many of those a care home was the only option.

 

[Bunpoots]

Welcome from me too @AprilCamper

I remember being where you are with my dad. He’d accepted carers, which helped a lot, but I still saw him everyday and, although we mostly had a pleasant time, I felt that my life was no longer my own - I had to run everyday around my dad’s routine. Lack of sleep made matter worse.

I’m afraid that ultimately the only solution will be full-time care. It doesn’t have to be permanent yet - you could try some respite? I’ve seen people sell respite to their PWD as a holiday and some carehomes are like hotels. It would give you a break and your mum might enjoy it. I know it’s difficult now with covid but when things start to get back to some sort of normality you might be able to have a look round a few homes and find somewhere suitable.

 

[canary]

Many people with dementia unfortunately develop a fear of being on their own, but forget this when someone is with them and insist that they are perfectly fine on their own. They get to the stage of needing someone with them every waking minute to reassure and direct them, or they get incredibly anxious and fearful. This is impossibly hard for the carer.

My mum got like this and although she also said that she never wanted to be "put in a home", eventually there was no choice. She surprised me, though, by thriving there. She made friends, joined in the activities and was happy. She once said to me - "they all love me in here" and she was right, they did..

If you find the right care home it can actually be a very positive thing, so dont automatically discount it.

 

[nae sporran]

Hullo @AprilCamper, I'm having to think seriously about stepping back and using respite myself. Sorry, no advice to offer, but this forum will help and support you through it.

 

[Rosettastone57]

She has always said that she does want to be “put in a home”
The carers are doing medication and supporting her to do her breakfast and cook her lunch. She just needs reassurance while preparing it, but often ends up saying “I’m a stupid old woman and do everything wrong”
I go and help get the evening meal then they come for company in the evening.
But although she doesn’t want anyone in her home, she then phones to ask if I’m coming or what should she be doing.
If I am there we have a good time and enjoy walking around her garden etc

There comes a point where the person with dementia's needs become so great that they outweigh what they or family members want to happen. You have now reached that point. Your mum needs 24/7 supervision, which means inevitably a care home . I'm sure that's not what you want to hear . But seriously for your own sanity, consider this option

 

[MaNaAk]

Take a step back, for the sake of your own sanity.

What are the carers actually doing - get them to make her dinner .

I know its hard, but what would happen if you didnt answer the phone?

She sounds as though she needs full time care really

I agree with @Jessbow and I think that now is the time to start looking at care homes or at least try respite to see how she gets on. When the time you will have to tell a few love lies and make out that she is going on holiday. When I was in your situation I was worried about putting dad into respite care at first but then I was pleasantly surprised and a couple of weeks after respite he back to the home for full time care.

Please keep posting as we can give you lots of advice about this.

MaNaAk

 

[AprilCamper]

I am going to phone the GP tomorrow and ask for help. The hospital suggested some tablets to help with anxiety and mood change first then maybe respite. If she hadn’t agreed to the care package while she was in hospital I would have sent her for respite, but she seemed to accept the idea when we spoke about it every day for a week before she was discharged. She keeps forgetting she was in hospital so can’t make out why they are coming in and why she needs help. Also the face masks are really stressing her out.

 

[AprilCamper]

Many people with dementia unfortunately develop a fear of being on their own, but forget this when someone is with them and insist that they are perfectly fine on their own. They get to the stage of needing someone with them every waking minute to reassure and direct them, or they get incredibly anxious and fearful. This is impossibly hard for the carer.

My mum got like this and although she also said that she never wanted to be "put in a home", eventually there was no choice. She surprised me, though, by thriving there. She made friends, joined in the activities and was happy. She once said to me - "they all love me in here" and she was right, they did..

If you find the right care home it can actually be a very positive thing, so dont automatically discount it.

Thank you for this positive post. Today’s visit has confirmed that she needs more care than the hospital initially thought. Obviously when she was in hospital there was someone around all the time and now she is home, the time alone is causing her distress. I have contacted a care home near us that looks somewhere she could settle and enjoy time together. They are showing me around (after a covid test) tomorrow and say they can move fairly quickly to admit her if we decide to go ahead.
they have some staff that have been there more than 10 years and activities still happening in the home despite Covid also for the future they have nursing provision. So now just praying that if this is the right thing we can sort it quickly and ensure she doesn’t spend too long at her home alone getting anxious. The sister on the ward she was discharged from also suggested calling her GP to ask about anxiety medication and to let them how bad it has been.

 

[AprilCamper]

Following on from my last post, my mum phoned at 2.30 saying help
Me please, I don’t know what to do. She had got up, Showered and dressed and then realised it was the wrong time. We have come to sit with her until the morning and she is now resting in a chair. I will phone the card home first things and ask if they have an emergency admissions option as I don’t want to have to send her back to hospital but she cannot be on her own now. She would rather go and stay somewhere for some extra help than have carers come in at home but don’t know how soon we can get this arranged. The card home said they have availability so hope they could do an emergency admission of some sort?.

 

[Banjomansmate]

Hopefully you can grab this opportunity to get your Mum the support she needs as getting a dementia patient to agree to move into residential care is often the hardest thing. Good luck!

 

[AprilCamper]

At the moment she would to respite rather than hospital of carers in her home. So just praying that they can admit her as soon as possible

 

[Sarasa]

@AprilCamper, that care home seems good. I hope they can provide you with some emergency respite. It sounds as though with company your mum will thrive, in the way she did when she was in hospital.
{{{hugs}}} to you both at this tough time.

 

[AprilCamper]

@AprilCamper, that care home seems good. I hope they can provide you with some emergency respite. It sounds as though with company your mum will thrive, in the way she did when she was in hospital.
{{{hugs}}} to you both at this tough time.

Thank you. I’m waiting for the care home manager to call me back at the mo. In the meantime the carers agency have pencilled on a live in carer if needed from lunchtime today while we sort out the respite .

 

[AprilCamper]

So

I agree with @Jessbow and I think that now is the time to start looking at care homes or at least try respite to see how she gets on. When the time you will have to tell a few love lies and make out that she is going on holiday. When I was in your situation I was worried about putting dad into respite care at first but then I was pleasantly surprised and a couple of weeks after respite he back to the home for full time care.

Please keep posting as we can give you lots of advice about this.

MaNaAk

Thank you. I’m waiting for the care home manager to call me back at the mo. In the meantime the carers agency have pencilled on a live in carer if needed from lunchtime today while we sort out the respite .

So my mum was admitted to emergency respite care on Monday 26th April. By the time we arrived (having had company all day while I sorted it out) she said “I don’t need to be here, you are putting me in prison!”
Then by some miracle, after a couple of hours of her protesting and me becoming more worked up, she suddenly said “ well
You’d better leave me here for two weeks then”!
I left her with the carers who took her up to her room (which has a lovely view of the gardens) and then proceeded to have a breakdown in the reception area myself, couldn’t stop crying. Years of stress all flooding out! The staff were amazing and by the time I had finishend completing the paperwork they said she was having pizza and chips.
I have had to step back to give her the best chance to settle , and for
My health as well. I had ME for 14 year when I was a teenager.
They have sent photos of her smiling and happy and say she has made two good friends and enjoying singing with everyone. Even told one of them that she liked it there and would be haoiyntoSo today I will be contacting the manager to arrange for her to stay long term. It is obvious that she needs the constant company and they will be able to deal with her as the altzhiemers progresses.
I have agreed with them that she will need at least a month before I have direct contact, to give her the best chance of settling in and not wanting to come home. They will update me whenever I contact them. They said that if she asks to call
Me, by the time they have “gone for a phone and my number” she has moved onto another activity and has forgotten, so I feel Happy that she is now living in the moment and not worrying that she isn’t hearing from me.
It was a trauma and crisis situation, so at the moment I’m making sure that I don’t drown in paperwork and stress and having time outside with my husband ( visiting national trust gardens)
My Admiral Nurse has been a great support and this group helped a lot when I was struggling “out of hours”.
Thank you for all the advice. And big hugs to everyone dealing with this difficult journey.

 

[MaNaAk]

Dear @AprilCamper,

This is good to hear but now you need to look after yourself so take things slowly and try to relax. Enjoy those National Trust visits.

MaNaAk

 

[Sarasa]

Hi @AprilCamper, that is brilliant news. It sounds exactly what your mum needs. She'll be far less anxious with lots of people around her and things going on. The staff at mum's home had to sit me down for a cup of coffee and a chat a few times as mum took a while to settle and I was so worried that she would end up going home and the whole cycle of her not coping and me trying to patch things up would start again.
Not visiting for a month sounds a good idea. When you do go, don't say goodbye, just say you're off to the loo or disappear when your mum goes to lunch. Saying goodbye would always get my mum saying she'd come with me, and then getting upset when I said she couldn't.