Has anyone stopped visiting?

[Carolynlott]

My visits to my Mum make her very upset. They almost always have done – she has been in care for almost two years. She assumes when she sees me that I have come to take her home. She takes me by the hand and looks for the exit. I tell her she can’t go home because she isn’t well enough. She cries, and pleads some more, and then asks (quite logically for someone with advanced dementia) if she can come and live with me. I have to keep saying no. Invariably, even if she has been having a ‘good’ day, my visit makes her sad, upset, and angry. She has been through quite a few stages over the last two years – she did go through a phase of not knowing who I was, which was easier to take than this. Now she is recognising me again – and that in itself makes her cry – and wail “my lovely girl”.

Mum was transferred to a nursing home three weeks ago because the home where she was couldn’t meet her needs. Needless to say going home isn’t an option (she doesn’t have one anymore) and neither is living with me. This is tearing me apart but I am more concerned about the fact that my visits are doing Mum no good. Dad is downstairs in the same nursing home, so I will visit anyway (he doesn’t know who I am, which makes things a whole lot easier), but I don’t have to go upstairs to see Mum.

I just wonder if anyone has been in this situation and whether they stopped visiting for a time – and whether stopping visits for a while helped?
Best wishes, C

 

[GillyW]

Hi Carolyn, my Mum is in a home over 2 hours from where I live & for the last couple of years I have experienced the same thing it's truly hearbreaking. I absolutely dread going down as I never know what reception I am going to get. The last time she didn't really know me so not sure whether I'd left it too long between visits or her cataracts or dementia or both! It makes me feel so awful. I try & go every couple of months & last time took some little cakes as she loves anything sweet & although we can't have a conversation it did help with passing the time & distracted her enough not to talk about home.
I have only just found this site but already realise that my situation isn't unique & so many other people suffering in the same way. Good luck with whatever you decide, Gilly

 

[Christinec]

Hi Carolyn,
No definite answer but but I also wonder whether visiting Mum is actually good for her and I certainly do not think they are good for me. I suppose in your situation if the staff are saying that your visits only distress your Mum then it really would seem better to leave these at present. But as you and I know it is so hard with this illness to know what is for the best and everything keeps changing as well so maybe a very occasional visit would let you judge whether anything has changed.

My Mum does not seem to know me now but then she does ask me about her daughter so maybe she does at some level recognise me when I visit. As you say this is in some ways easier than the stage where she did know me and kept asking why she was in the home.

I think one of the reasons is I keep visiting because I do not want to live with the guilt of not visiting. How will this affect you? It sounds as though you are confident about the care your parents are getting. I know I also keep visiting to keep an eye on this for my Mum but you will be able to keep an eye on this when you are in seeing your Dad.
Often think when I answer posts I am of absolutely no help but wanted to pass on sympathy for your situation and support for whatever decision you make. Only those of us who go through this have any idea how difficult it is.
Best wishes.

 

[chucky]

Hello Carol, i havent stopped visiting my dad , hes been in a CH for 3 years, but i have cut it down to an hour once a week. I used to go every day but it was too much for him and me. Sometimes i feel guilty but i'm assured by the home that hes fine and doesnt fret or anything after a visit, truth be told he forgets ive been anyway. Hes never once asked where ive been or why havent i been more. In the beginning i couldnt understand that some of the other residents never got visitors and in my ignorance i did think it was terrible. Now that i'm in the same situation, i can see why. If youre struggling with the visits and your mum is getting distressed i would gradually reduce the time you spend with her. If shes getting too worked up about it, its not doing her or you any good. Try not to feel guilty about it, you should only do what youre comfortable with, not what you feel you should do, and if that means not visiting for a while so beit. It is clear you love your mum because if you didnt it wouldnt hurt so much. We all cope in different ways theres no right or wrong, its whats right for you that matters. Its your mum and nobody knows her like you do, go with your instinct it wont let you down.x

 

[lin1]

Hello C

This must be so distressing for you
You obviously dont want your mum upset

May I suggest instead of saying something like, you cant go home mum
say something like I will take you tomorrow, The doc says you need to stay till you get stronger. I dont know if this is inappropriate for your mum or even if it would help you.

My mum frequently wanted to go home and she was in her own home, it tears you apart doesnt it.

 

[lin1]

Hello again
Im putting a link that you might find helpful,and give you some ideas of easing the distress to you and your mum. apologies if you have seen it before, it may also help others reading who havent.

compassionate communication
http://forum.alzheimers.org.uk/showthread.php?t=30801

 

[scotm14]

Hi Carolyn, its a difficult call but you should speak to the nursers/carers etc and ask their advice. Have they said your mum gets over your visits quickly or do they leave her distressed for quite some time? My mum forgets quite quickly that anyone has been to see her so sometimes you think "whats the point" but then I remind myself that even if it is only for the moment its better I see her and just deal with whatever reaction I get good or bad.

Just remember whatever you do its always with your mums best interest at heart!!

M

 

[buster]

its a tricky decision ,at present mum is fine with me for the first 10 minutes,she will then stare at me and and tell me im an imposter,at this point she normally gets up and walks off,and i go home ,strangely last week one of the staff rang me saying mum would like to speak to you on the phone (something she hasnt done in last 5 months)the conversation started quite well , she asked me to bring in a few bits next visit,then she says "guess what that bloke who pretends to be you turned up today" ....my point is your going to feel a bit guilty for not visiting but then i think if its agitating her maybe best keep away for a bit or lessen the visits

 

[Canadian Joanne]

Carolyn,
When my mother was in a very difficult and angry phase, several times I didn't visit for a week or two. This back in the days when I was visiting at least three times a week.

Why not take a break from visiting for a week or two, explaining to the staff why you're doing so? Also, try keeping your visits short - perhaps you can visit with someone else to distract her.

May I suggest instead of saying something like, you cant go home mum say something like I will take you tomorrow, The doc says you need to stay till you get stronger.

Lin's suggestion is excellent as your answer won't be so final. Plus, you can shift the blame to the doctor.

 

[shauna]

When I visit my mum she also thinks im there to take her home and doesn.t want me to leave and clings on to my hand which makes me feel so awfull. Ive now got a new routine when i visit i stay with her till teatime 4.30 and then the carer takes her off in the wheelchair for her tea while i slip away.Its the only way i can leave but it means i cant kiss her goodbye and that breaks my heart.I asked the nurse today how mum reacts after i leave and she said she is fine after a few minutes. I only visit twice a week as i live an hours drive away.

Shauna

 

[Carolynlott]

Thanks for all your replies and advice. I usually only visit once a week now (although I have been going more often over the last three weeks to try and calm Mum down) and try to spend an hour with Mum and then an hour with Dad. I am going to talk to the staff this week before I go upstairs to see Mum and tell them that I feel I am only upsetting her making things worse and see what they say. I suppose I go out of guilt and to reassure myself they are "ok" although I am sure the staff would ring me if there were problems. Dad wouldn't realise if I went or not but I think he appreciates someone sitting with him and holding his hand. On good days he smiles and chuckles and even kisses my hand. I could try to play Mum's favourite DVD to distract her from thinking about going home but everything seems to frighten her now. I feel emabarrassed about Mum's behaviour at the moment and feel as if I should apologise all the time - I know she is irritating the other calmer residents, and she doesn't endear herself to the staff either right now, which is heartbreaking because my Mum used to be the loveliest, friendliest, kindest person you could ever meet. The thought of her being upstairs and not going to see her is so hard.
C

 

[Canadian Joanne]

I feel emabarrassed about Mum's behaviour at the moment and feel as if I should apologise all the time

I do understand about the embarrassment and shame. When my mother was hitting and punching people, I was so overcome with shame and humiliation. This simply was not my mother.

But you have to keep telling yourself, it's the disease, over and over. This is not your mother and it was not my mother.

 

[Carolynlott]

Really, it does help - it helps to know that there are other people who have gone through this, because most other residents in their nursing home don't seem half the trouble my Mum is (and my Dad used to be). I am so grateful to anyone who replies and just wish I could be as much help to other people.
C

 

[Christinec]

Carolynlott,
Well I think that you have helped by raising this. It has helped me to realise I am not the only person to question whether my visits are good for Mum as often I feel they may just remind her of what she has lost. I also visit weekly. Recently had the best visit I have had for many months. Mum looked well and although most of her conversation was muddled there were one or two bits that had some sense. But now Mum does not really know me it is easier to leave and I can remember how upsetting it was for both of us when she continually asked to be taken home.

I hope the staff can help you decide what course of action would be best and it would be so hard to go and know your Mum was close and not visit. I expect you have tried leaving at a time when staff can distract your Mum with a meal or a drink? One thing that worked for me was saying i had to and get my tea/ cook for the children or husband. Mum always seemed to see this as a good reason for me having to leave her. The other answer that worked was always to blame the Doctor who wanted her to stay until she was a little better. Also Mum seems happier to think she is in a hospital looked after by nurses.

Finally my Mum is still a quiet timid sole and there are some of the other residents who are quite different. Please try not to feel embarrassed for your Mum because I suspect that most visitors will feel nothing but sympathy for you and your Mum and the way this horrible illness has affected your family.

Best wishes

 

[susiewoo]

My Mum nearly always cries when I arrive. I think her emotions are mixed up and she cries when happy or sad. Thankfully she has never asked me to take her home.....how I would have coped with that I just don't know.It is a fact of this life that we feel guilty for visiting and then leaving them there/we feel guilty if we don't visit/we feel guilty just acknowledging how guilty we feel......no win situation. I dread going in sometimes and then have a great visit. Sometimes I can't drive away until getting the tears under control. Always better to go with someone. My lovely brother always makes Mum laugh and seems so relaxed. I watched her stroke his cheek on sunday and felt blessed to have witnessed her affection for her little boy.

 

[Carolynlott]

Compromise

Visited today. I sat downstairs with Dad and talked to the staff who said Mum (upstairs) has really good spells amongst the bad ones. One minute she hugs the staff and tells them she loves them and the next ... well her agitation takes over and she lashes out and screams. I decided I would go up and see how she was and would stay with her for as long as I was doing her any good. She was pretty agitated and just wanted to walk from room to lounge to corridor and back again, obviously searching for something but who knows what. Even her favourite music playing in her room didn't distract her. She began to get angry and one of the carers took her away.

I guess that's my compromise. I'll visit Dad, and then go up see how Mum is, and if she's in a good mood and I am making her happy I'll stay for an hour, and if not I won't stay. The staff are really good - they know exactly what the position is so are always there to intervene.
Best wishes to everyone, C

 

[cragmaid]

Well done Carolyn, this is a wise choice and I hope it can ease some of the pain of the past. Look after yourself. Maureen.x.