Refusal to attend day care centre

[Jann]

Hello,

I'm so pleased to have found this site and only wish I had done so ages ago.
Having read many of the posts here, I feel there is such a fantastic support network for advice and guidance from everyone.

My mother who is now 74, was diagnosed with dementia around 3 years ago and my father (76) is now her carer. As they live in the Isle of Man, my sister and I can't help them as much as we'd like, due to distance (and extortionate travel fares to get there!) We do call most evenings to provide some verbal support and see them as often as we are able.

Mum is not yet in the later stages but as Dad is now her carer and has taken over most of her roles in the house, we have discussed the importance that he receive some respite - even albeit for a few hours a week. He is in good health but we worry that it will be eventually be affected by the pressures of looking after Mum.

They have been visited by a nurse on a couple of occasions and though Mum, in his presence, was very accommodating and said she was happy to go to the day care centre, when she did so, she decided at some point before Dad had arrived to collect her, that she wanted to go home. She was told she couldn't and was not too pleased to be told this. She wasn't openly rude as she's always been a very caring and sensitive person, though her moods with this condition, as I'm sure you are familiar with, are ever changing. It was when Dad collected her that she gave him a real ear bashing and she has refused to go again ever since. He thus finds the idea of pursuing another visit a very worrying one with the stress it involves (with them both) in arranging it.

Mum did say to me the evening of the day she had been at the centre that she had really enjoyed helping the people there - helping to feed them, talking to them and giving the nurses a hand but it was being told she couldn't go home which made her feel angry.

She used to be a nurse and I thought that by gently mentioning her nursing background and saying the nurses would have been very pleased to have had her there to help, it may have coaxed her into returning there again. We haven't pushed this line of pursuation any further as Dad is sure she will refuse once a date is set.

My aunties and uncles often arrange to take Mum out in order to give Dad a break. At the time of arranging it, she is openly happy to go but when the date arrives, she will refuse point blank to go and Dad feels hugely embarrassed by having to call them to say it's off. I have said that as they are aware of her condition, they will understand and indeed they do but it still causes great concern for Dad.

I'm sure that you will be all too familiar with this and wondered whether any of you had any advice to offer as to how we can persuade Mum to go to the day care centre without causing too much grief all round. We, of course, feel very guilty by having to even consider this but my worry is for Dad especially, as he so needs to have a little time to himself. Mum is scared that it will mean, "being put away", as he has said on occasion, once these visits begin. It must be so very frightening for her. It is also so awful that we have this dreadful dilemma to deal with.

Is there any way we can get her to go of her own free will without having to force her, which none of us want at all?

Thanks for reading,
Jann

 

[Margarita]

Hi welcome to TP Jann

This may be of no help ,but hear go & am sure other on TP well have better advice

All I can say yes its is very stress full for your dad arranging & getting your mum to day centre , & from personnel experience you really have to persevere , even if your mum give your dad an ear bashing, because your mum will get use to going your dad really got to tell your mum that he needs time out for himself , could you tell your mum that or would your mum get upset ?or if he does not want to say that ,he can use a littlie while lie & say that he has an appointment on those days that your mum go to day centre.

 

[Michael E]

Jann hi,,

If you find the answer let me know - please....

I'm sure that you will be all too familiar with this and wondered whether any of you had any advice to offer as to how we can persuade Mum to go to the day care centre without causing too much grief all round.

I have tried so hard to get my wife to go and have now just accepted it is not going to happen... From what I have read on this forum there are some patients who will go to day centres - respite and there are others (possibly the majority??) who will not... Monique says 'Why the hell do I want to spend time with a lot of old loonies'?

No answer to that really.... I have compensated with having a very nice young professional carer come in 2 afternoons a week for 4 hours - I just escape saying I am going to the shops and will be back in half an hour or similar... Wild horse would not drag Monique to the 'meetings' and as for respite? Well not tried it yet and resorted to becoming ill myself and going to hospital to get some 'freedom@.

Good luck with it - and your dad

Michael

 

[Jann]

Thank you for your replies, Margarita and Michael.

I think my Dad telling Mum honestly he needs some time to himself may well upset my Mum but saying he has an appointment may be worth a try - though she may well say she's happy being left on her own at home while he goes out.

Although she's okay being left at home for short periods, it may defeat the object of persuading her to go to the day centre now and then. I'll mention it to my Dad though.

Your care person coming into the house, Michael, also sounds a good idea. This would then free Dad to make some time to himself. How do you go about arranging for someone to come to the house on a regular basis? And what if Mum isn't comfortable with a stranger in her home? Sorry, another question and a potential dilemma once more.

Thanks once again for your advice.
I'll be in touch and should anyone else have any other suggestions or have managed to successfully place their loved one in a day centre without a problem, please do let me know.

 

[Michael E]

Clearly the day centre is the best solution if you can persuade her...

I live in France and here there are several organisations that supply 'qualified carers' to come in and 'Monique Sit'.... I am pretty sure the same sort of thing in the UK but somebody else will have to tell you how..... it certainly works well for me but the 4 hours vanish before I can turn round..
Love
Michael

 

[Libby]

Hi Jann

I too have only recently found this site and quite frankly I've been amazed at the effect it has had on me. I do feel a lot calmer about the whole Mum situation, knowing that I can actually relate here to people in exactly the same situation.

We never actually realised how much Dad had to contend with looking after Mum. It was only when he had to go into a hospice that it dawned on us all. At the time we weren't sure if he would come out, but he was a battler and did make it back home. But they did ask that he go back in once a week to have a break from Mum, and the Social Worker actually came and took Mum to a day care centre. My Mum sounds a lot like yours - very accomodating in front of other people (I mean not sons/daughters/husband) but then when she was home said she would never go again. Social Services also arranged for somone to come in and help at meal times, but Mum was always so angry about this, even though she wouldn't do anything for Dad. This is a woman who was always cooking and having friends and family over, who now, wouldn't even cook for her husband! She would never accept that Dad was seriously ill.

Anway, I digress - in her eyes, there is absolutley nothing wrong with her, so why on earth would she want to go to a day care centre! If you could arrange for someone from Social Services to see her and try and get some kind of rapport with her, they might then be able to take her, and tell her they'll pick her up to take her home after a couple of hours. As for a Care perosn coming into the home, again, they would need to strike up some kind of rapport with her. Mum always thought that anyone strange coming into the house were out to rob her!

I do hope you find a solution - it must be terribly difficult when you're so far away. You can only do what you can.

Take Care

Libs

 

[Jann]

Thanks Michael and Libs.

Michael - I will talk to my Father and see what may be possible to be arranged for a care person to come in. He has mentioned having a 'cleaner' in as his friend (a fellow carer) has a lovely lady who comes in to help alleviate the ever-increasing chores he has to undertake, though I don't believe she is from social services.
At least, it will give him some free time and Mum is often - as she always was - very sociable when she feels secure.

Libs, thank you for your input.
Yes, you're right, my Mother sounds very much like yours - always the hostess and always cooking, rushing around, helping and looking after the family, as well as extended family, friends and lovingly adopted strays(!) She has admitted to me that she feels very degraded (and how very heartbreaking it is to hear as well as it being so exceptionally frightening and difficult for her) by the knowledge that she says in her own words, "I'm losing my mind" and, "I truly hope you never get this terrible thing". I do understand why she hates the very idea that people know she has dementia.

We are a very close family - even though we live far apart - and I suppose I can at least be thankful that most of the time, she can be honest with me on the phone about her feelings. BUT she wants to retain her dignity - and I guess we all would want the same but it's so hard to be honest with her (as she and I have always been) and to be able to say I think Dad needs a break with causing her offence.

I believe we, within our family, are all watching our words; never knowing quite how or what to say to each other that we never before had a problem with.

 

[Norman]

Hi Jan
Have you had Social services make assessments for Mum and Dad as a carer?
This is an entitlement.
Read this advice sheet
http://www.alzheimers.org.uk/After_diagnosis/Getting_support/info_communityassessment.htm
Contact SS and that should help you find carers who will provde a sitting service.
I have 12 weekly hours provided for myself,the carer is entitled to be able to have free time, and follow some interest of their own.
Also 14 hours personal care for my wife. Which we use as we wish.
Hope this helps,come back if you need more advice
Norman

 

[jeannette]

Day Centre refusal

Dear Jann,

I knew the minute it was suggested that my mother would absolutely loathe the day centre. She's never been naturally sociable, had a social life while my father was still alive - he died over thirty years ago - and since then it's all been through me and my sister, but mostly me. Anyway, the social worker told me about a really good centre in our area and I didn't want to refuse even though I knew what would happen. I'd love to have been wrong, but she hated it. I was advised to stay for a little while, then leave her for a couple of hours. When I returned after an hour and a half, I was told she was joining in a music appreciation session, and I was so pleased, but then I peeped in through a window and saw that she'd refused to take her coat off and was sitting like a stone among all the others. The minute she saw I was there it was get me out of here and daggers at me - "take me home and then I never want to see you or speak to you again ever". The usual.

I tried one more time on a day when the electricity was being cut off in her building for essential repairs. This time I didn't even make it out of the door. I popped into the loo, and when I came out she was glued to the door, pleading with me and weeping and begging me to take her home. In fact, I was asked to take her home because it was upsetting the others.

These things are simply not for everyone. I won't try again - but if there's ever a situation where I have no choice, and if the centre will let her try again, at least I'd know she was safe.

You're not alone, as you'll have gathered. And at least your mother was polite to people. Mine - who never minded giving me a seriously bad time about anything she disapproved of - was always very polite to others. Not sociable, but had great social skills. One of the many things that have disappeared. She would hate that so much if she realized. Thank God she does not.

I wish you all the very best and all the luck you can get.

Jeannette

 

[Canadian Joanne]

Jann,
You say your aunties & uncles often arrange to take your mum to give your dad a bit of rest but she often refuses. How about they simply come over to "visit" & your dad could nip off for an afternoon? Go to a movie, have a meal, a walk, a drink? It may not be exactly what he wanted but it would at least be a bit of a rest, not having to look after your mum for a few hours.
Joanne

 

[Jann]

Once again, thank you all for your advice and support.

Norman - I believe Dad is in the process of seeking an Attendance Allowance. I assume this isn't to do with having someone in. I haven't as yet, read the text link you have given me but will do so after writing this. Thanks.

Jeannette - I'm sorry to hear how upsetting it has been for you and Mum with her going to a day centre. I think my Mum is likely to react in the same way; crying and pleading to go home. Maybe this isn't the solution for her and Dad, as it seems many have experienced difficulties and if it were to upset Mum so much, we wouldn't be prepared to continue with it.

Joanne - My aunties and uncles often visit and they also all go out for lunches together on a regular basis which is a break in routine for both Dad and Mum.
Dad popping out while they're at the house though would not work very well as Mum would immediately wonder where he was. As it isn't the norm for him to go out when they have visitors, she'd be confused and possibly even angry. To her it would seem he was being unsociable and rude.

As a couple they have always done most things together. Maybe it is because of this, that makes it all the more difficult for Dad to go out on his own too much.
Mum does have a very close friend who 'sits' with her when Dad goes out each Tuesday for a couple of hours with his brother. Of course, she isn't aware that she is being 'sat' and enjoys her company very much but Dad, though really appreciating the huge support this friend gives (she takes her out shopping on occasion too), doesn't want to burden her with asking too much. It's also the same with our relatives.

 

[Amy]

Hiya Jann,
I think the thing is gradual change.

Dad popping out while they're at the house though would not work very well as Mum would immediately wonder where he was. As it isn't the norm for him to go out when they have visitors, she'd be confused and possibly even angry. To her it would seem he was being unsociable and rude.

Dad could just pop into the garden, then it could be 5 minutes to get something from the shop, then a dental appointment. Build up in your mum's head, that it is normal for dad to pop out when family are there.
Carers can be introduced in the same way, popping in for a couple of hours whilst dad is there, so mum becomes familiar with them, then dad beginning to pop out. Your mum will adapt.
Another thought I had, just because day centre may not be the answer at present, don't write it off for the future. As the disease progresses different things become appropriate.
Best wishes, Amy

 

[Jann]

I think the thing is gradual change. Dad could just pop into the garden, then it could be 5 minutes to get something from the shop, then a dental appointment. Build up in your mum's head, that it is normal for dad to pop out when family are there.

Thanks for the sound advice, Amy.
This sounds like a great way to gently introduce a change in routine without the fear of upsetting Mum.

I have already mentioned your suggestions to Dad earlier on the phone and he is going to try it out. Will let you know how it goes.
Thanks once again and have a good weekend.
Jan

 

[Lynne]

Hi Jann

My aunties and uncles often arrange to take Mum out in order to give Dad a break. At the time of arranging it, she is openly happy to go but when the date arrives, she will refuse point blank to go. Is there any way we can get her to go of her own free will without having to force her, which none of us want at all?

I don't know how practical this may be (distances involved etc.) but would it be worth a try for your aunt/uncle to come round to call (by arrangement with your Dad) to have a cup of tea/a look at the garden/show you some photos/any other old excuse you can think up,
and suggest there & then a trip out to the local garden centre/whatever for an hour or so, to introduce her gradually to going out with or without him.

My own mother has got to the stage of worrying away at anything new until she is really anxious. However, presented with "let's go to ... for ...." as a spur-of-the-moment offer, she will often say yes rather than no. She has a Memory Clinic Assessment appointment on the 31st which I am not going to tell her about until 2 hours before the appointment time!

My mother is also an ex nurse. I don't think I would 'recommend' her to anyone on that basis! Nursing care these days doesn't measure up to her standards (when Matron ruled the wards with a rod of iron & whiplash tongue). I have to say I tend to agree with her, although I do appreciate that today's nurses have many duties which her generation didn't have. No computer records to up-date or time & motion studies to complete in Mum's nursing days, but much more hands-on patient care and attention to basic hygiene!

Best wishes