I've come to dread visiting Mum in CH

reno

Registered User
Feb 28, 2011
103
She's been there for a year. The home and staff are really nice, but Mum never has any idea where she is or what's going on. Memory now reduced to about 10 mins (VascD). Every time I visit she spends most of the visit/conversation repeatedly asking me where she is and why, what will happen when I leave, where she will have her dinner, how she will know when it's bed time, where she will sleep. Around and around, as if it's only me who can reassure her on these things. I reply patiently to each question, try so hard to steer the conversation away, bring in photos and try to use them to spark discussion about the past. Works for a few minutes and then she drifts away from the topic and we're back onto Where do I sleep? and Where did I wake up this morning etc etc.
I am so sad for her to be reduced to this and to be in such a state of confusion, but I'm also now starting to dread visiting and having this whole routine of the same questions and reassurance for the whole visit, same word-for-word each time.
The worst is when I get up to leave. We may, if I'm lucky, have actually got onto some form of conversation that makes her feel content, but when I have to say that I'm going her face falls, there's a mild panic and off we go again on reassuring her where she is and that there are people there especially to look after her. I have to time my visits now to allow a good 20 mins of this after I say goodbye. She is also now starting to lose inhibitions. Before, while in her right mind, Mum would be very kind and considerate always. Now I'm starting to get 'Why are you leaving me here?" "It's not right to leave me alone" "Why can't I come and sleep with you" and, best of all, "I could sleep in your car. I'd rather do that than stay here":(
Taking Mum out is also now largely starting to be irrelevant, seeming now to add more to her confusion. I took her to the garden centre yesterday, accompanied her to the loo and I could tell she was quite panicked about being in a strange loo. I have really started to query if she gets any benefit from going out now, but it does at least break the repetitive conversation a bit. Maybe it's for my benefit ...
Yesterday was sad and difficult, and at the moment I feel I can't drag myself there again for a a good while. I don't visit all that often - once in the week and once at the weekend.
So any advice or practical help very welcome, esp for getting the conversation away from her worries into something that she might enjoy talking about, 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. I have no idea whatsoever if she would be upset or if she would forget within 5 mins that I had been there at all (there's the rub ...)
Feeling so down about it. I have given a hearty prayer to God this Christmas/New Year that mum should not have to endure another year like this last
 

benny

Registered User
Dec 7, 2009
290
Central Coast NSW
It does get you down!

I really do feel for you, it's heart breaking to just have to say it once, let alone repetitively! My mum has been since last October and it doesnt get any easier, I visit every day, but my mum is a little bit the opposite where there isnt much conversation as she cant get her words right and nothing makes sense and she cant make sense of what anyone says so its just daunting trying to think up all the questions that she can just nod or shake her head or otherwise just agree with tne mumbo jumbo or sit there in silence, It's awful, I really do feel for you! Maybe time yes for some little white lies! Cheers Robyn
 

Witzend

Registered User
Aug 29, 2007
4,291
SW London
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.
 
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gringo

Registered User
Feb 1, 2012
1,189
UK.
Hello reno,
I understand you so well. I was advised to visit less often, that’s not easy either. It does get a little easier, either that or you get accustomed to the endless repetition and take it in your stride. One thing I found worked sometimes was taking in an ipad with all our photos on it. Doesn’t always work though. You just have to keep at it. Leaving is always the worst and I always make sure there is a member of staff close by, in case it gets too difficult.
But you aren’t alone, as I’ve found out from TP. many go through this and worse. What I dread is the stage that Witzend mentions, where there’s no response or recognition.
You can only do your best.
 

Chemmy

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

I never found my mum was very interested in photos. Let's face it, if you can't remember who the people are, it must be very difficult, especially if the person sitting with you is trying to engage you in reminiscing.

My most successful visits were when I took in an activity. Initially that could be a very simple board game like dominos (number or colour) or snakes and ladders/ludo and then later on I took in a doll so she could brush it's hair or a whiteboard and felt tips which I used to draw funny doodles on. Simple jigsaws, balloons to hit/throw, simple musical instruments (kiddies section at Asda!) All these were things she could relate to in the 'now' as she could see them right in front of her - there was no need to try and remember anything.
 

marsaday

Registered User
Mar 2, 2012
541
Hi reno,

I'm in the same boat as yourself and the others. We can only hope, as Witzend pointed out that - this too shall pass. I see my Mum about twice a week and I think that's plenty. I'm thinking of trying to cut down once a week as the dread is so much.

I arrived the other day and she was in foul form. Not even a hello. As soon as I got in the door she launched into - I'm not staying here another minute-I'm sick of this place and those wee ladies- Nobody wants me .....My stomach sank and I had to bite my tongue. One day, while out, I retaliated to her complaining and we both arrived back at the door crying-how embarrassing is that!

No more retaliations for me. It only upset me and her both and I felt guilty that I should have known better than to argue with a poor demented old woman. But I thought I could MAKE her understand how much I had done for her and why she was in this situation-pointless!

I always take her out somewhere as I feel it benefits us both-ie the distraction of a drive in the car, a walk or a cafe is much easier than just sitting somewhere where they are clearly unhappy. This particular day I dreaded returning (as usual) but she had forgotten whatever it was that had upset her and went back in ok-well apart from the usual minor complaints.

I think it's worth persevering with the outings as long as you can at least until the toilet situation becomes too much-We're getting to that stage also.

M
 

reno

Registered User
Feb 28, 2011
103
Thanks so much for these replies. I am taking a break this week and not going to go in to CH until next Sunday, prob. Just to let my emotions settle. I know we are in the same boat and you have given some good suggestions. A good idea to take some practical little thing in to do, rather than the endless photos, although Mum still has some insight and would probably still, at this stage, object to being given something 'childish' to do (tho' I've seen photos of her at the home doing various crafts which I'm sure she would have poo-pooed earlier).

But you have made me realise that I should try to make the most of this stage where she still recognises the family and she can still (if we get onto the right topic of conversation) chat briefly and laugh at things. I do so hope that she is 'taken' before she reaches the stage of non-communication, but we cannot control such things ...
 

Witzend

Registered User
Aug 29, 2007
4,291
SW London
I always take her out somewhere as I feel it benefits us both-ie the distraction of a drive in the car, a walk or a cafe is much easier than just sitting somewhere where they are clearly unhappy.

M
I do agree with taking out - I would always do so when possible, i.e. warm enough since she hated even a short walk to the car in cold or wind and walking any distance wasn't on. It was far easier than sitting inside - would drive to a local lovely view armed with thermos of tea and Mr Kipling lemon slices! She would enjoy it.
But around a year ago even that wasn't on any more because of decreasing mobility + she would fret endlessly about 'getting back' - not to the CH, often couldn't say for what, though once or twice it was evidently to 'the children', i.e. my younger siblings when they were very small. I would soothe that they were fine, my elder sister was looking after them, but of course nothing stopped the poor old thing fretting. :(

Like others, I found photos very little use - strange, since previously she'd been the sort of person who loved them.
 

marsaday

Registered User
Mar 2, 2012
541
I forgot to add that with my FIL-much further down line than Mum-we always lied when we left him at care home.(He's now at stage where doesn't want to come out.)It was simply the only way to get away. My Mum though has a bit more awareness and I'm not yet at the stage of saying-'just popping to the loo' and then disappearing. I have considered disappearing while she's in the loo though-anything to avoid the awful parting!

Good luck.
M
 

marsaday

Registered User
Mar 2, 2012
541
I also like chemmy's idea of balloons and was just thinking has anyone ever tried bubbles? They were always a winner with the kids.
 

reno

Registered User
Feb 28, 2011
103
"+ she would fret endlessly about 'getting back' - not to the CH, often couldn't say for what"

Yes, this is exactly the thing. She worries about 'getting back' from wherever we are, what's going to happen to her when she's back, where she's going to sleep. Doesn't seem to happen so much when we stay in the CH. I think, deep in her subconscious, the CH is probably familiar to her on some level, whereas a 'change of scene', which well-meaning people tell you will do wonders for her, can cause mild panic
 

Chemmy

Registered User
Nov 7, 2011
7,591
Yorkshire
I stopped taking Mum out once toileting became an issue - but started again when she permanently wore pads and we could go in a wheelchair rather than the car. I found I could chat about whatever we were passing and she seemed quite content to sit there looking around.

That was great for couple of summers, although she did look odd dressed in padded jacket, hat, scarf, mittens and sunglasses even when it was quite warm outside. I took her out for a couple of hours one mild November day - and she was slightly sunburnt on one side of her face by the time we got up to town :eek: I was mortified...so don't forget the sunblock too.
 

jeany123

Registered User
Mar 24, 2012
19,036
70
Durham
I stopped taking Mum out once toileting became an issue - but started again when she permanently wore pads and we could go in a wheelchair rather than the car. I found I could chat about whatever we were passing and she seemed quite content to sit there looking around.

That was great for couple of summers, although she did look odd dressed in padded jacket, hat, scarf, mittens and sunglasses even when it was quite warm outside. I took her out for a couple of hours one mild November day - and she was slightly sunburnt on one side of her face by the time we got up to town :eek: I was mortified...so don't forget the sunblock too.
I always keep a facial sun stick in the bag on Allens wheelchair when we go out
 
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AnneD

Registered User
Dec 3, 2012
77
Derbyshire
Listening to all the posts on this were so familiar.

Mum follows the same pattern - only she hates the care home because they are mocking her, putting her on tv., etc., etc., We have the same conversations every time I visit. I go 2 or 3 times a week and, like many others,dread going in and wondering how she will be.

If she is fairly good we tend to do Arrow-words together - I ask the clues and she gives the answer - I am lucky that she can still know the answers. A good idea is to take domino's - thanks for that suggestion!

I would love to take her out but don't have the confidence to take her on my own - she is obsessed with going to the toilet.

I too hope Mum is taken away before she gets to the stage of not recognising me or the family.

Thanks to all that post on TP - it is wonderful to know others are in the same boat!

AnneD
 

Butter

Registered User
Jan 19, 2012
6,738
NeverNeverLand
Yes I dreaded every visit every day until my mother died. I am afraid she fought to leave all the time. I have few words of comfort I'm afraid. She fought to die, as her great escape, and I was able to make that better by insisting she have full pain relief . If I had known then what I know now, I could have had her made even more comfortable for her last couple of days.

Some people do become reconciled to their carehomes, fortunately.
 

rajahh

Registered User
Aug 29, 2008
2,794
Hertfordshire
I have a similar conversation with my husband but he is still living at home.

He doesn't always recognise me, and I dread bed time now as we always have the same.

Do I have to go upstairs to get my things ( we live in a bungalow, and have never lived in a house with stairs)

Where is my bed,

Where are you sleeping

Do you work all night

How much do you get paid forlooking after us all ( he thinks we share the house with at least 20 other people).

This is every night, with added extras.

Then once he is in bed it is

Wjat kind of a day have you had,
I respond and then say back what kind of a day have you had to him

He always replies funny kind of day can't remember doing anything

I often come out of the bedroom in tears.

This confusion is heartbreaking and it is hard to go on reassuring all the time, but it is all we can do.

I think the difficulty you have when you say you are going might be solved by using the excuse that someone else has suggested, saying you need the loo, and that you can't use hers if she has ensuite but must use the visitors one.

Then just go.

Life is hard

Jeannette
 

gringo

Registered User
Feb 1, 2012
1,189
UK.
Jeannette,
I have just read your post in tears. Here am I making a fuss over the problems I have for just a few hours in the day, and you deal with it 24/7. If there is a heaven, there will be special corner there for you where there will be no problems.
I wish you peace and the strength to continue.
Mike.
 

The DIL

Registered User
Dec 9, 2011
67
we start ever visit the same way when we visit MIL. She has all her clothes out of the wardrope because "they" have told her she has to be out of this place by 8.00am in the morning!!. We end each visit the same way, with see you tomorrow and the reply is always, well will probably not be here, hopefully I won't wake up!!
 

at wits end

Registered User
Nov 9, 2012
753
East Anglia
we start ever visit the same way when we visit MIL. She has all her clothes out of the wardrope because "they" have told her she has to be out of this place by 8.00am in the morning!!. We end each visit the same way, with see you tomorrow and the reply is always, well will probably not be here, hopefully I won't wake up!!
golly that sounds familiar. gran has packed everything she could into one shopping bag which she would not leave behind in case they moved her. Then at the weekend she had visitors and they left a carrier bag behind...fatal! that is now packed too!

she wont let me unpack, in case they move her! Yesterday I said i'll see you at the weekend and she replied well i'm moving out of here on Thursday. I just said oh are you? i'll look into that....

I hate it, she hates the lack of privacy in the CH but although she wont admit it you can tell she loves the company. Guess you cant have it both ways!

Bit then I read Jeanette's post and I realise these issues wouldnt go away even if i found her the place she says she wants or take her back to the home she cant remember.

Horrible disease!
 

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