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"You're just someone who's here all the time"

Dimpsy

Registered User
Sep 2, 2019
1,875
0
(This is my first thread; it's a bit long-winded, but please stick with it for my question at the end.)

That's what my lovely mum said to me on Tuesday.
Mum had been a bit cantankerous in the morning when I was trying to change her night pull-ups for day pull-ups and kept slapping my hand away when I tried to help.

Mum is the gentlest of souls, but like many people with dementia, the last year has been an ordeal for her and not being able to take her out to socialise or engage in normal activities, shopping, lunch out etc, has bought on a decline, more steeply in the last few weeks.

Her easy going nature has just vanished; if I say white, she'll say black. No amount of encouragement will entice her to go out for a walk, sometimes she won't eat a meal - her favourite cheesy mushroom omelette just left on the plate.

And she back chats something terrible - 'Mum, don't forget to clean your teeth' says I, ' I've already cleaned them' says she. 'No mum, your toothbrush is still on the side of the basin with toothpaste on it' says I. 'Well, that must be somebody else's, because I've cleaned mine' and so we go round in circles.

Is this the normal path of dementia? Some days she's so awkward I would swear blind she's just trying to wind me up, which brings me back to Tuesday.

So, we'd had a tussle over her knickers - and I won that one! Clean pull-ups on and she was settled with a cup of tea.
I asked her if she knew who I was and she said, " Oh, you're just someone who's here all the time". I told her my name and that I was her daughter and she replied "So what".

I've suspected for a while that she'd lost the link of who OH and I are, but I was a bit taken aback to hear it said out loud.

In a way, it's opened the door to moving mum into respite for a week or two.
Apart from a couple of over-nighters when one or other of our daughters Grandma sat, OH and I haven't had a break in the four years mum has been with us. We had a particularly difficult 2020 and now that mum needs care 24/7, we are feeling very frazzled. Our lives seem to revolve around mum and what she wants or needs and OH and I haven't felt like a couple for months and months. The things I do for mum now, I wouldn't expect my girls to do, so the only option is a care home stay.

I know it's silly, but I've been very against putting her into respite, thinking she would miss us, miss being with us, but now I'm not so sure she'll even notice. The lady who runs our Memory cafe said to me that everyone deserves a break, so I'm going to toughen up a bit and put us first - which brings me to my question.

There is a care home very close to where we live, who will have a respite room available in a week's time and OH and I are going for a look around on Sunday.
This respite malarkey is all new to us and we've got a heap of questions BUT the sticking point is mum will have to be isolated for two weeks.

Can I ask if anyone has put their loved one through a care home isolation period; if so, did it have any adverse effects?

Now that I've accepted mum going into temporary care, to hear that she'll be confined to her room is making me rethink the whole situation, and to be honest, that little glimmer of excitement of time alone as a twosome is being snuffed out. The only option I can think of is a three week stay, so she would have a week spent with other residents, doing activities or whatever. But would three weeks away make it harder for her to settle back at home?

We're in a bit of a quandary and would be ever so grateful to hear your opinions please.
 

Sarasa

Volunteer Host
Apr 13, 2018
3,724
0
Hi @DImpsey, I hope you weren't up at 2 in the morning looking after your mum, and that you managed to get back to sleep.
First of all have you checked to see if your mum has a UTI? It might explain why she's been a bit more difficult lately or the stroppiness could just be the progression of the dementia. My mother in law, who was always far more relaxed about her failing abilities than my mother has had her moments the last few months as her dementia worsens.
As for the home, don't feel guilty if move your mum to full time care is the best solution. She'll have a team of people to look after her, not just you and your husband and as restrictions relax (fingers crossed) you'll be able to visit frequently and even if you don't you'll still be caring for her, just in a different way. I was hoping that now more people have been vaccinated and tests are freely available that care homes would be starting to relax these rules. Even if they aren't I understand that most homes ensure residents in quarantine have lots of staff popping in to chat so they don't feel too alone. All things to discuss when you visit on Sunday.
I know you are thinking of this just being a few weeks respite, but I do think considering it a permanent move might be a good idea, it sounds like you and your husband are near burn out with caring for her. The other solution is having carers in, or if you already have those, upping the amount of time they come in.
I'm sure others will be along with their experiences of this very soon.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
74,394
0
Kent
Starting your own thread is a good idea @Dimpsy

Your title resonated with me .

When my mother was taken from her care home to hospital with mid-stage dementia with very limited language, she looked straight at me and said " You always find me"

Your mother knows you will always find her even if she isn`t able to realise it.

Please don`t hold back from residential care, whether it`s for respite or permanent. If your mum settles well in respite taking her home could unsettle her again and if you feel you or she is ready for residential care I suggest you take advantage of this time.

Of course when my mother went into care there was no thought of isolation so I`m unable to comment, other than to realise this is just one more difficulty in your path and I sympathise deeply.
 

Snuffette

Registered User
Jan 11, 2021
64
0
Hi Dimpsy, I could've been reading about my mum albeit she is already in a CH. We have to make some hard decisions, but this group is such a support and help, you are not alone!
 

marionq

Registered User
Apr 24, 2013
6,415
0
Scotland
When my SIL had a breakdown last year she was given respite in what was a terrific rush for her own protection. The first two weeks were in isolation which the home told me was difficult for most people but not for her. She had always wanted to be taken care of without responsibility for herself if possible so the care home worked well. The food is lovely, there is a lot going on, the staff are very engaged with clients. The 2 weeks have become a year during which she was diagnosed with cancer as well as her mild dementia. Respite for her was the right answer.
 

northumbrian_k

Registered User
Mar 2, 2017
1,527
0
Newcastle
Hi @Dimpsy It does seem hard when you do so much but seem totally unappreciated. But it is the fact that you are someone who is always there that makes you an easy target for your Mum's frustration.

A respite stay with a view to permanent residential care is something that you could seriously consider. That is how it went for my wife, although without the added complication of isolation because of Covid restrictions. I still remember my trepidation when I picked her up after the 1st short respite. I was prepared for all sorts of name-calling and anger but she was perfectly fine and had been throughout. It was almost as though I had only been away for a few minutes. This encouraged me to arrange further short respite stays and then a full time move to a care home.

Every person with dementia is different but, from my experience, respite can be the start of something better than just being the drudge who is always there. A little distance with care provided by others might be the start of a renewed relationship. There are no certainties but you'll never know without trying.
 
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Jaded'n'faded

Registered User
Jan 23, 2019
2,030
0
High Peak
Aaaah the back chat! My mother was an expert at the 'black is white/no I didn't/yes you did' thing. She reminded me of my son when he was young, the difference being that I could discipline him! When it's someone with dementia you have to grit your teeth, smile and be nice. I found it very hard - sometimes mum was a complete pain in the proverbial...

Good luck with the respite.
 

Dimpsy

Registered User
Sep 2, 2019
1,875
0
Hi @DImpsey, I hope you weren't up at 2 in the morning looking after your mum, and that you managed to get back to sleep.
First of all have you checked to see if your mum has a UTI? It might explain why she's been a bit more difficult lately or the stroppiness could just be the progression of the dementia. My mother in law, who was always far more relaxed about her failing abilities than my mother has had her moments the last few months as her dementia worsens.
As for the home, don't feel guilty if move your mum to full time care is the best solution. She'll have a team of people to look after her, not just you and your husband and as restrictions relax (fingers crossed) you'll be able to visit frequently and even if you don't you'll still be caring for her, just in a different way. I was hoping that now more people have been vaccinated and tests are freely available that care homes would be starting to relax these rules. Even if they aren't I understand that most homes ensure residents in quarantine have lots of staff popping in to chat so they don't feel too alone. All things to discuss when you visit on Sunday.
I know you are thinking of this just being a few weeks respite, but I do think considering it a permanent move might be a good idea, it sounds like you and your husband are near burn out with caring for her. The other solution is having carers in, or if you already have those, upping the amount of time they come in.
I'm sure others will be along with their experiences of this very soon.
Thank you for replying @Sarasa , and yes, I was up at 2 checking on mum. We check her a few times through the night, which probably accounts for my rubbish sleep pattern.
I decided to do something positive and start this thread.
It's strange you mentioning a UTI, mum's unusual behaviour made me wonder the same thing, she hasn't had a UTI with us, she's more prone to chest infections, anyway, about three weeks ago I took a sample up to the surgery and after it was dipped I had a phone call to say she definitely had an infection and the sample was being sent to the lab to grow. A few days later, the test was returned negative, so I assume she's all clear.
We had another Mexican standoff this morning over her pull-ups and cleaning teeth, but thankfully that got resolved before I left for work.
We have thought about carers, but mum gets up when she's ready and although I usually help her get undressed, she doesn't go to bed until she's ready, she wouldn't take kindly to being organised.

It's a huge weight off my shoulders to be able to share how we live, I've felt such a sense of betrayal even thinking about mum in a home, but am starting to think that her needs are way more than we can provide. She's in blooming good health whilst OH and I are just plain knackered! And while I love mum to pieces, these days I'm right off her. I've never felt that before and I don't want to feel like that now.
 

Dimpsy

Registered User
Sep 2, 2019
1,875
0
Starting your own thread is a good idea @Dimpsy

Your title resonated with me .

When my mother was taken from her care home to hospital with mid-stage dementia with very limited language, she looked straight at me and said " You always find me"

Your mother knows you will always find her even if she isn`t able to realise it.

Please don`t hold back from residential care, whether it`s for respite or permanent. If your mum settles well in respite taking her home could unsettle her again and if you feel you or she is ready for residential care I suggest you take advantage of this time.

Of course when my mother went into care there was no thought of isolation so I`m unable to comment, other than to realise this is just one more difficulty in your path and I sympathise deeply.
Hello @Grannie G, I think you're right, mum doesn't know me any more, but she's content with us. I've read about people wanting to go home, but we've never had that with mum (yet). She loses her way indoors all the time - we don't live in a castle, and since her admonishment to me, it's opened my eyes a little to the fact she may be further down the road of dementia than we had thought. I suppose as her needs have increased, we have just accepted the extra care we've had to do. It will be interesting to talk to the CH manager on Sunday.
 

Dimpsy

Registered User
Sep 2, 2019
1,875
0
Hi Dimpsy, I could've been reading about my mum albeit she is already in a CH. We have to make some hard decisions, but this group is such a support and help, you are not alone!
Thank you @Snuffette, it's such a relief to start writing a thread about mum, there's no one else I can talk to apart from my cousin who's father was put straight into care when he showed signs of dementia. This forum has helped with so many hurdles we've had to jump so far.
Did your mum settle in straight away?
 

Dimpsy

Registered User
Sep 2, 2019
1,875
0
When my SIL had a breakdown last year she was given respite in what was a terrific rush for her own protection. The first two weeks were in isolation which the home told me was difficult for most people but not for her. She had always wanted to be taken care of without responsibility for herself if possible so the care home worked well. The food is lovely, there is a lot going on, the staff are very engaged with clients. The 2 weeks have become a year during which she was diagnosed with cancer as well as her mild dementia. Respite for her was the right answer.
It has crossed my mind @marionq , that the isolation issue may not be such a problem as I'm imagining.
Mum has been profoundly deaf since the age of 7, and although very sociable, is happy to spend time reading and word searching or just sitting quietly. She's not overly keen on TV or radio,
I guess staff will come and go quite frequently, so she will see other people, but will they be wearing masks? She's been able to mostly avoid mask culture as she was shielded for so long, so it may be a worry for her.
 

Dimpsy

Registered User
Sep 2, 2019
1,875
0
Aaaah the back chat! My mother was an expert at the 'black is white/no I didn't/yes you did' thing. She reminded me of my son when he was young, the difference being that I could discipline him! When it's someone with dementia you have to grit your teeth, smile and be nice. I found it very hard - sometimes mum was a complete pain in the proverbial...

Good luck with the respite.
Honestly, some days I don't know whether to laugh or scream!

Do you want to sit in the garden mum? No.
From a woman born in August who's always loved being outdoors in the sunshine.

Are you ready for a walk? I don't do walks!
From a woman who has walked every day of her life - until now.

I'm a pretty patient person, but this stage is driving me nuts.
I might try a bit of reverse psychology, but alas, think it's probably a non-starter.
 

Snuffette

Registered User
Jan 11, 2021
64
0
Thank you @Snuffette, it's such a relief to start writing a thread about mum, there's no one else I can talk to apart from my cousin who's father was put straight into care when he showed signs of dementia. This forum has helped with so many hurdles we've had to jump so far.
Did your mum settle in straight away?
Morning Dimpsy :) Mum was a bit unsettled at first but then started to enjoy the activities and fuss over her. She hasn't been great in the last week but I think this is down to either a UTI (which they have now started anti-biotics for) or just a fast progression of the dementia. I do know, that although I still suffer greatly from waves of guilt, she is in the right environment, it would have been impossible for her to remain in her home and I could not have looked after her, it is a 24 hour care situation.
 

Dimpsy

Registered User
Sep 2, 2019
1,875
0
OH and I visited the care home this morning. Mum's room is very nice, on the first floor, overlooking the crazy golf, children's playground, tennis courts and the sea beyond, a road to see comings and goings, and the staff seem really nice. Only 15 max residents and it feels like being at home, not institutional in any way. The dining room is nice, the lounge and garden are nice, lots of shade and benches to sit and enjoy outside. The manager said they won't isolate mum beyond a couple of days as she's vaccinated, although we've got to do a flow test tomorrow - mum's seen me doing them for work, so it shouldn't be a problem. There was an outbreak of Covid in March this year, and most of the staff and residents caught it. Because everyone had been double jabbed, there were no serious cases, most people felt as if they'd caught no more than a heavy cold.

And I feel an absolute traitor. Mum's sat beside me now, with cake and tea and not a clue what we're planning for her.
It seems to be going at such a pace. Tomorrow, Monday, we're taking mum there for morning coffee and she's due to move in on Wednesday.
I've got to label her clothes and organise her bits and bobs.
I'm coping by thinking it's just for two weeks, although the home are ready to make it permanent.

I feel very much I'm letting mum down.
I said to OH I'm going to call into one of the local home care agencies to see if there's any way we could use carers for mum's personal care to take the pressure of me. I still don't see how it could work, but if it does, we could keep mum at home with us - after her two week 'holiday'.
Just call me Brutus.
 

Sarasa

Volunteer Host
Apr 13, 2018
3,724
0
That home seems lovely @Dimpsy. I'll see how you all feel after two weeks, but I hope your mum settles so well that she doesn't want to come back from her 'holiday'. You'll still be caring for her, just in a different way. What is the policy on visits and on taking your mum out for a drive or a coffee?
 

HardToLetGo

Registered User
Oct 10, 2020
40
0
OH and I visited the care home this morning. Mum's room is very nice, on the first floor, overlooking the crazy golf, children's playground, tennis courts and the sea beyond, a road to see comings and goings, and the staff seem really nice. Only 15 max residents and it feels like being at home, not institutional in any way. The dining room is nice, the lounge and garden are nice, lots of shade and benches to sit and enjoy outside. The manager said they won't isolate mum beyond a couple of days as she's vaccinated, although we've got to do a flow test tomorrow - mum's seen me doing them for work, so it shouldn't be a problem. There was an outbreak of Covid in March this year, and most of the staff and residents caught it. Because everyone had been double jabbed, there were no serious cases, most people felt as if they'd caught no more than a heavy cold.

And I feel an absolute traitor. Mum's sat beside me now, with cake and tea and not a clue what we're planning for her.
It seems to be going at such a pace. Tomorrow, Monday, we're taking mum there for morning coffee and she's due to move in on Wednesday.
I've got to label her clothes and organise her bits and bobs.
I'm coping by thinking it's just for two weeks, although the home are ready to make it permanent.

I feel very much I'm letting mum down.
I said to OH I'm going to call into one of the local home care agencies to see if there's any way we could use carers for mum's personal care to take the pressure of me. I still don't see how it could work, but if it does, we could keep mum at home with us - after her two week 'holiday'.
Just call me Brutus.
It sounds like you need a break especially if getting up through the night to help your Mum. Maybe have a few days rest and relaxation before thinking through any next steps.
 

Wishing20

Registered User
Feb 27, 2020
59
0
Thank you for replying @Sarasa , and yes, I was up at 2 checking on mum. We check her a few times through the night, which probably accounts for my rubbish sleep pattern.
I decided to do something positive and start this thread.
It's strange you mentioning a UTI, mum's unusual behaviour made me wonder the same thing, she hasn't had a UTI with us, she's more prone to chest infections, anyway, about three weeks ago I took a sample up to the surgery and after it was dipped I had a phone call to say she definitely had an infection and the sample was being sent to the lab to grow. A few days later, the test was returned negative, so I assume she's all clear.
We had another Mexican standoff this morning over her pull-ups and cleaning teeth, but thankfully that got resolved before I left for work.
We have thought about carers, but mum gets up when she's ready and although I usually help her get undressed, she doesn't go to bed until she's ready, she wouldn't take kindly to being organised.

It's a huge weight off my shoulders to be able to share how we live, I've felt such a sense of betrayal even thinking about mum in a home, but am starting to think that her needs are way more than we can provide. She's in blooming good health whilst OH and I are just plain knackered! And while I love mum to pieces, these days I'm right off her. I've never felt that before and I don't want to feel like that now.
My Mum started in Respite due to an emergency situation and never came out due to the Manager of the Care Home telling us how advanced her Dementia was. I question that now I‘m in the Care Home world, as this was a large home and a big business, at the end of the day they need to fill those rooms! If I could go back in time, I would definitely buy in at home care support, there comes a time when you need to be firm and look after yourself and this would be my first option. Obviously as the Dementia progresses and becomes unmanageable at home, then look at Care Homes. I just wish I had done this.
 

Banjomansmate

Registered User
Jan 13, 2019
3,088
0
Dorset
Just remember, if this is just a temporary holiday for Mum, and she comes back home with carers visiting, at a later date there might not be a place available at that home when you need one, or if there is it might not be in such a nice room!
 

AwayWithTheFairies

Registered User
Apr 21, 2021
140
0
It is very hard to see into the future isn’t it? This place sounds like a holiday now for everyone involved.

I am working hard to take a leaf out of the PWD book and live each day hour and moment in the present! Enjoy your respite and take a break from worrying.

Cheer up it may never happen! As the annoying passerby would say to my grumpy adolescent face.
 

northumbrian_k

Registered User
Mar 2, 2017
1,527
0
Newcastle
You are definitely not a traitor or letting your Mum down @Dimpsy. What you are doing is trying to find the best way of giving her the level of care that she deserves and needs. It is right to look at options but try to do so in a way that lets your head rule your heart. See how the period of respite goes. At the end of it you may have a clearer idea of what seems like the best way forward for all of you. Care at home is an option you can try but you need to consider whether this will be satisfactory and sustainable beyond the short term. If she seems to take to her holiday home the decision may be easier. Whatever you choose your Mum's needs will be uppermost.
 

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