I've come to dread visiting Mum in CH

rajahh

Registered User
Aug 29, 2008
2,794
Hertfordshire
Helen that is why I posted my reply, to try to help those who feel they are letting their loved ones down by having them in a home. They feel they could take away this confusion and sadness if they were back in their own home. Sadly this is not the case at all.

Possibly my problem is aggravated by the fact it is a second marriage so his memory now rarely incliudes me even though we have been married over 24 years.

LAst night I went to bed at 12.30.a.m. to find him wide awake in a wet bed, somehow he had turned the pad round so the absorbent side was facing outwards so of course it had leaked everywhere.

I washed him, changed him, changed the bed, and as he was getting back into bed he said I expect your shift has ended already hasn't it. what you are doing now is beyond the call of duty!!!!

So no recognition of me as his wife at all.

The hardest thing for me is that I dare not kiss him goodnight or at anytime as I never know who he thinks I am.

So for those of you visiting loved ones in CHs please do not berate yourselves, You know they are in safehands, and you still care for them and visit , and for some of you , there is also the knowledge that they really know you too

Jeannette
 

marsaday

Registered User
Mar 2, 2012
541
Ah Jeanette you are truly in a very sad place. I salute you. I don't think I could do it for my husband and we have discussed these matters.

You reminded me of that woman in the Louis Theroux docu about dementia care in the states. One youngish man, had struck up a relationship with another woman in the home, even though his wife still visited. He just didn;t recognise her as such any more. The three of them even went out to lunch together and he sat holding the other woman's hand. So sad. But I think the wife had decided she could take no more and that he was happy in the home with the other woman and she was going to end visiting altogether and get on with her own life.

What will be your breaking point? I don't mean to sound as if I'm the 'put them in the home' camp but how long can you continue in your current role? Do you intend to go on 'til the end? As A wife who is not recognised, and I know there are lots of you I'm simply curious as to how you keep going!
M
 

Chemmy

Registered User
Nov 7, 2011
7,591
Yorkshire
Hi Jeanette


I posted my reply, to try to help those who feel they are letting their loved ones down by having them in a home. They feel they could take away this confusion and sadness if they were back in their own home. Sadly this is not the case at all.
I would nominate that as one of TP's "stick it on your fridge" quotes
 

rajahh

Registered User
Aug 29, 2008
2,794
Hertfordshire
I seem to have taken over the thread a bit and am worried about that but I will answer you marsaday

I am not sure I have a breaking point. I can still remember how I felt when we first were in love, I can remember the phone calls we had while we were getting to know eachother 500 miles apart ( I met him when I was a volunteer in a disabled holiday home , he was a volunteer too) .

I can remember and that stops me from reaching this breaking point.

However my husband also has prostate cancer and the decision has been made by me but through my knowledge of him , not to have treatment. He is not expected to be alive by the end of the year, and I plan to nurse him at home with help from Macmillan nurses who are " onboard" now and visiting. He still manages a walk most days and is inno pain, so I suppose that is also something which stops me reaching this breaking point.

Jeannette
 

dottyd

Registered User
Jan 22, 2011
1,064
n.e.
I do so feel for you - my mother was the same for ages and my stomach would be in knots every time I went - I had to psych myself up to go and it's so horrible to dread visiting your own mother.

Like with you and yours, the mere idea of distraction was a joke - it used to make me give a hollow laugh when people suggested it, as if I was too daft to think of anything so simple.

I found the only things I could do were a) reassure as far as possible, and b) fib, endlessly, mostly when I was leaving. I would give umpteen different reasons why I had to nip off (to the shops before they close, to the dry cleaners before they close, to the station/airport to pick up OH, you name it) - 'But I'll be back very soon.' Because her short-term memory was so bad these would generally work - she'd have forgotten after a few minutes that I was there at all.

Eventually, when she kept on and on about wanting to leave the (very good) CH, 'I hate it here' - I said over and over that I was looking for a nice little flat for her, just down the road from me. In fact I was going to look on the internet the minute I got home, and as soon as I found a nice one we'd go and have a look together. OK, not nice, but it was the only way to pacify her at the time. (she had been an inveterate 'mover' anyway)

Now and then she'd say, 'Can't I come home with you?' - which of course made me feel absolutely dreadful, but TBH living with us had always been a no-no since much as I love her she was never the easiest person even before she had AD. Again it was a case of any excuse - 'Well, not just now - I've got to go straight to X or Y - or 'I had to come on the bus, the car's being serviced', you name it.

Apparently she was more or less OK when I wasn't there - I'm not saying she was actually happy, but then she hadn't been happy at home either - (she had never been what I'd call a naturally happy person - so often worried or upset about something that was so often all in her own head) but I seemed to be the trigger for all this every time I turned up. Her eyes would light up - 'Oh, have you come to take me home?' -and of course my heart would sink.

After 5 and a half years in the CH her eyes no longer light up - more likely she doesn't respond at all or else thinks I'm her sister (the one she never got on with!) And like you, I can't help wishing her pitiful existence won't last much longer.

Anyway, all the best - you are far from alone in all this.
Witzend I totally resonate with you mam only been there 4 months
 

marsaday

Registered User
Mar 2, 2012
541
That's understandable Jeanette as you may not have long left with him. As I've said before it's a totally different and more difficult situation when it's a partner-with a parent you still have your own family/partner at the end of it.

Back to reno now and the visiting of care homes. I'm off to visit Mum and dreading it!
 

at wits end

Registered User
Nov 9, 2012
753
East Anglia
Jeanette you are a godsend to TP, and to your lovely hubby obviously. As awful as it sounds I suppose you can see an end in sight.

I wonder sometimes how long my gran has left, she is 99, but wouldnt surprise me if she made oldest woman ! A family saying was always 'creaking gates last the longest'.

And i think the snow over the weekend wsill keep me away from the CH for a few days!
 

DesperateD

Registered User
Sep 9, 2012
23
I just wanted to say how much comfort (perversely I fear :eek:) that I have gained from reading this thread...

So much has happened since I first posted on this site, I wouldn't know where to begin, but hopefully one day (if I ever recover my own sanity!) I want to share my story, which is pretty horrific thanks to an utterly useless Social Services & CMHT (hopefully that is about to be confirmed by the Parliamentary & Health, and Local Ombudsmen)...... anyway...

My 99 year old Nan has been in 'emergency respite' for the last 3 weeks in a CH near to my home in Hertfordshire (not her 'local' area). It has been agreed that she can stay for at least another 3 weeks whilst her 'best interests' are discussed.

The last 3 weeks have been traumatic, as I am tortured because I dont know if I am doing the right thing for her, I cry all the time and feel like I am putting her through her worst nightmare, she always said she would kill herself rather than go into a CH...

I am not particuarly impressed with the CH (but have never had previous experience) they assure me she is fine and happy when I am not there, but my Nan has always been a 'conformist' and will play along incase they are 'horrible to me if I dont'- she cried buckets when I took her back after a nice day with me today, and begged me not to leave her there, "I'll sleep on the floor, I wont take up any space"... "I always made room for you when you needed"... the staff at the CH have even said that she is 'emotionally blackmailing' me but I know deep down she is so unhappy there, she made it to 98 living independantly (God knows how :eek:) and is finding it impossible to be surrounded by so many people (a lot of whom are further down the road with their illness)

Anyway, without droning on..... just wanted to say that I feel a lot better knowing I am not alone, it has helped me not to take it so personally having read this thread.

Thank you, and God Bless everyone who is suffering directly, and indirectly with this hideous illness :(
X
 
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Margaret W

Registered User
Apr 28, 2007
3,725
North Derbyshire
I wish you'd all been around when I was going through this four years ago. I was a really noddy, didn't get any of it right.

Good luck to you all, you are lovely people.

Love

Margaret
 

at wits end

Registered User
Nov 9, 2012
753
East Anglia
Golly Desperate D sounds like we have the same Nan!

Yesterday I visited her and she said she was leaving with me and my hubby and we just had to say when we were ready to go. When i explained that she wasnt she went very grumpy and said I should just dump her in town and she'd find a shed to sleep in. ANd if we had to drive past a river she would throw herself in it.

I know it's partly the AD and I know she would rather be 'home' but she talks about where she lived during the war as her home, and she really cant be left alone anymore. Then she found a comb in her bag, started combing her hair and then forgot what she was doing and the comb stayed put in her hair.....made me giggle which made it all seem a bit less sad.

I managed to distract her with a walk down to the day room and a member of staff asked if she would like to help her later with the menus which fortunately made her forget the going home issue for now.

Wish i had the answer to all this, think i'll phone her named nurse today for a chat about it all.
 

Chemmy

Registered User
Nov 7, 2011
7,591
Yorkshire
Hello DesparateD

Funnily enough, I suspect most people like your Nan wouldn't bat an eyelid if they were told they were in hospital for six weeks. In a communal ward, one bed that's too high to get in and out of, one chair at the side, one little locker, no privacy, no space for visitors, communal bathrooms, hospital food ...I could go on.

I accept that hardly anyone would voluntarily opt for a move to a CH but it does have a particular stigma attached to those in your nan's generation. It may well be that she is reacting to that as much as the place itself. If she has dementia, her reasoning processes will not be functioning.

Obviously we don't know the details but she must be in emergency respite for a good reason; presumably she is unable to go back to independent living. Her needs have to be met. Her wants are another matter when they adversely impinge on the rest of the family. They have a say in all of this too...and the right to refuse to do any physical caring, whether your nan likes it or not.

What are the longer term plans? Keeping her in a CH near you? If so, I'd start checking out the others asap so you have something to compare the current one with.
 

suzieglue

Registered User
Jan 21, 2013
1
So Sad

I've just read some of the comments on here regarding visiting a close relative in a CH, my Dad was taken into care last December after breaking his hip falling at home. He was in the late stages of dementia and I must admit to feeling a little relieved for Mum that she wouldn't be responsible for his day to day care any longer. On the whole we all felt very guilty as we had always said to Dad that he would always be cared for at home, but at the end of the day it was the hospital that said that they wouldn't release him to go back home. I don't Dad really wasn't aware that he was in care, as he had spent the previous 8 weeks in hospital having his hip op. Its was very scary how quickly Dad got used to his new surroundings, it was as if home didn't exist any longer. We all visited as often as we could, Mum every day, us kids every week. Dads face always lit up when I walked through the door, says out loud "Hello chick", but our visiting time together was always one sided, me making polite conversation, Dad just nodding. He had got that he was unable to hold a conversation and it was difficult to know just how much he was understanding. I think leaving was always harder for me than Dad, I hated leaving him there, he was just more interested in the forthcoming meal :) On the odd occasion a glimpse of Dad would come through and he would hold onto my hand tightly as if to say don't leave yet.
I agree it is the hardest thing in the world to have one of your parents in this situation, but it has made me very sad to read some relatives writing that they hope that their parent doesn't spend another year this way. My Dad died 5 months ago :'( and although people have said it is probably best, I would give so much just to visit Dad once more and see his face lit up when I walk in.
You truly don't know what you have until its no longer there. x
 

Chemmy

Registered User
Nov 7, 2011
7,591
Yorkshire
Hello Suzie

Welcome to Talking Point. So sorry to hear about your dad.

It's lovely that your last memories of your dad are ones of him smiling at you as you walked in. I'm sure you will treasure those.

My mum passed away on Christmas Eve and I guess she was much further down the road than your dad (stage 7e out of 7f). She was propped in a chair, unable to move or hold her head unsupported, unable to communicate, and in the last couple of months bearly able to raise a smile. Sad as I was to lose her, I wouldn't have wanted her to endure another day. ..and I'm pretty sure neither would she.

I guess those who hope for a speedy end are just hoping to spare their loved one from the further distress that they know lies ahead.
 

CollegeGirl

Registered User
Jan 19, 2011
9,524
North East England
... also for my exit strategy!! I have considered at times just telling Mum that I am popping downstairs/to the loo/to the car for a minute (at which she is always fine) and then leaving without saying goodbye.
There's your answer, I believe, for your exit strategy, at least. This is what I do when I've visited my mam in respite, and she's always been fine. I don't leave her on her own, I ask someone to come and sit with her, or distract her for a moment, or I take her to a lounge with other people in and the tv on, etc. I'm told that afterwards there's no problem. Within a few minutes she's forgotten that I've been there. My dad on the other hand drags it out and it's distressing for both of them. Try it and see whether it works - you can always change your strategy if it doesn't!

With regards to the conversation while you're there - perhaps you will just have to resign yourself to the boring repetition of reassuring her over and over again about the same things. Maybe that's the limit of her conversation these days. Maybe if you just resign yourself to it, it might be easier to bear. I can't really think of much else other than what you're already doing - unless ... could you try reading to her? taking in some music to play and sing along to? getting the others to join in a sing-a-long, a game of dominoes, I-spy? a simple question and answer game of reminiscence, or something like that? Involving other residents/carers might take the pressure off you to have a proper conversation. Apologies if these suggestions are not suitable!

Good luck, I think you're doing all the right things.

Edited - sorry, realised afterwards that most of these suggestions have already been mentioned, plus better ones! Didn't realise the thread had turned direction - serve me right for not reading the other replies before posting! Hope things have improved for you x
 
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DesperateD

Registered User
Sep 9, 2012
23
@ at wits end - I am sorry but I did have a little chuckle when I read what your Nan had said about sleeping in the shed :eek: our 99 year old Nan's sound like they were born under the same stars!! God Bless 'em....

Joking aside, I have been tormented since yesterday, luckily I have the help of a lovely support worker from the Alzheimer's society, she is an angel to me right now, I had to write to the manager of the CH today due to quite a few things I am unhappy with, I would not consider the one she is in long term, other professionals agree it is not the 'right one' for my Nan... my support worker assures me that Nan will not suffer any long term damage by staying there short time - my big concern is that she is surrounded by people so much further down the road with their illness and it really disturbs Nan, her memory is really bad, and she does hallucinate at night a lot, she is totally living in the past, but physically she is quite unbelievable for her age, and at times totally lucid.

To answer Chemmy Social Services want my Nan to go into 'extra care housing', I am going to view the complex next week (it is near to her home - about 30 odd miles from me, I am her only carer no other family members are involved!) apart from the journey every week, which I can easily live with, I am not convinced ECH will meet her needs, but I will explore it because I know she wants to live 'independantly' (but she has been assessed as not having 'mental capacity to decide on residence') I think the fact that she told the consultant psychiatrist that she pays her rent with the money she earns by babysitting every saturday night had something to do with his conclusions.... and yet Social Services are going to conduct another asessment to see if she has 'mental capacity to sign a tenancy agreement' :confused: I could say so much about the 'contradictions' between SS and CMHT but I dont think it would be appreciated here :eek:

I think I would like her to be in a CH near me, but it would need to be the 'right one', I hope I have found one and I am truly hoping that a vacancy will be coming up soon, I know there will be similiar problems to that which I am encountering BUT I think this other CH will be far more attentive to her needs.

It has been such a long road, and continues to be fraught with difficulties..... I am off to try and engage a more worthwhile solicitor tomorrow!!

As I say, one day I intend to share my story - it really is quite unbelievable!!

I find this place such a comfort, I am sorry I stayed away for so long, but I have been having my own breakdown :(

Love & Blessings to everyone. X
 

Chemmy

Registered User
Nov 7, 2011
7,591
Yorkshire
DesperateD

You seem to have your sensible head screwed on :D

It's good to explore all the options. I was eventually offered an assisted living place for Mum but it was clear that this would only be a short term fix and I wasn't convinced she'd be able to form new friendships with the other residents, so I turned it down and we went straight for the CH option.

If you find the right place, she should settle and then there won't be the trauma of another move.
 

DesperateD

Registered User
Sep 9, 2012
23
DesperateD

You seem to have your sensible head screwed on :D

It's good to explore all the options. I was eventually offered an assisted living place for Mum but it was clear that this would only be a short term fix and I wasn't convinced she'd be able to form new friendships with the other residents, so I turned it down and we went straight for the CH option.

If you find the right place, she should settle and then there won't be the trauma of another move.
Hi Chemmy :) "sensible head" :D I wish!! I do accept I am operating from a very 'emotonal' place right now...

I went to see a new solicitor today (wants to help but needs to be satisfied that I have just cause to complain about the previous one..... so frustrating!) Anyway, he was dismayed that SS want to carry out a mental capacity test to determine if Nan can sign an ECH tenancy (baring in mind she is deemed unable to make a decision on residence) I will explore the option but I am not convinced at all.

I also went to my own GP today and amongst other things, asked her advice on CH's in the area, she winced when I told her the one my Nan is in and suggested another I might go and look at (but someone else has strongly advised me against that one :confused:) ... it's all so stressful :(

Thank you boudicca :) I will PM you. x