How often do you visit?

[Chook]

I'm putting this out there because I'm sure I'm not the only one. I find a lot of your stories of care touching, heart warming and emotional but I also find they put me to shame.

I cared for mum the best I could for a year before she had to go into a care home. I am a mother with young children and it wasn't possible. I feel guilty about this every day.

When she first moved into the home I visited most days, then it tailed off to be 3 times a week. Mum has now moved into the stage of not knowing who I am and sleeps a lot. I find it so difficult visiting her. I don't get anything from her. My loving, bubbly, jovial mum isn't really there any more. She's been replaced by a body in a bed who doesn't resemble my mum at all. She doesn't seem to get anything from my visits either.

I visit her once a week now but even then I don't want to. I have to force myself to visit her. Every time I go I'm left feeling traumatised. I feel so guilty but it is so hard. How often do other people visit their loved ones in a nursing home? I rarely see other visitors at mum's place.

Chook x

 

[cragmaid]

Dementia put Mum in the position of needing 24/7 residential care. She would, I'm sure, be the first to say "Never feel guilty, you did your best for so long" She is cared for and comfortable now. She feels no pain or anger toward you. It doesn't matter how often others go or went to visit their PWD. It is what makes you feel comfortable and if that's once a week, once a month or twice a year..... then that is right.
keep a good relationship with her carers and the Management Team so that they tell you if you are needed or if her care plan needs changing.... but otherwise....send the Guilt Monster Packing.xx

 

[Shedrech]

hello Chook
the guilt is our reaction to a situation we cannot control, and a reaction to feeling emotions we're socialised into believing are unacceptable - somehow, we feel we 'should' be able to do something - when dementia arrives, we can do nothing more than support
and you have done that, and still are
how often to visit - whenever you feel is right for you in your own individual circumstances - my guess is that your mum would understand, be proud of how much you have given to her and want you to lavish that same care on her grandchildren, since she now is unable to show her love for them
dad is still able to interact with me; I visit 3-4 times a week, and don't always feel able to go that 4th time so I allow myself time off, and I take holidays now, too - I know the staff take care of him and will contact me if I'm needed; no doubt you have that reassurance also
not every resident in dad's home has visitors; some have none at all (NOT a criticism, just an observation; I don't know everyone's personal situation) - the staff care for them all the same, so I know that it's not a case of only looking out for the residents who have visitors to check on them
go when it's right for you - call the staff to keep up to date - spend time with your mum's grandchildren and on yourself; she'd be happy to know you're doing that
best wishes

 

[blueboy]

I know exactly how you feel Chook. Mum went into care 10 months ago and I was visiting every 2nd day. Now she is like your Mum - doesn't know me, doesn't speak or smile - and it upsets me so much. I, too, dread going to see her but still go about 3 times a week. However, when her Mum was in the same situation 30 years ago, Mum only saw her once a week. Maybe I should cut down my visits - I know she is very well cared for and the Mum I once knew has gone.

 

[love.dad.but..]

The visiting balance is so individual. I visit Dad every other day and although he is declining and probably thinks I am staff I feel I can still add to his days however this may and probably will change. My children are grown up your mum would be saying to you...I am safe and cared for because you care, put yourself and my grandchildren first....we can't change what this illness does to the pwd or the impact it has on closest loved ones but we all know we have done our very best. My two sisters live some distance away, one visits every 4 months one has gone from visiting every 2 months to hardly at all now. It would not be how I would be but the point is....it is not up to me and we all cope in different ways so that is absolutely fine. Visit when you feel you want to, don't be regulated by guilt or how often, just let it work for you and your family. It is a shame there aren't other visitors when you go, it is true some residents in dads care home never have visitors but I find when dad is sleeping other visitors who I have got to know well lift my mood and I theirs! Conversation and laughter about anything other than dementia when we visit helps.

 

[stanleypj]

I understand your feelings entirely Chook. When someone is pretty unresponsive and in our case, you don't quite know what you're going to find (because the 'care' is not always what it should be) it's very difficult sometimes - I have very mixed feelings on my way there and on the way back.

But in our case, I cannot be at all sure that sufficient effort is being made with regard to food and fluids so I go in the afternoon and give Sue her tea. Usually it's possible to get a decent amount consumed and I feel it was worth the visit just for that. So, between us, (me, a carer who used to help me look after Sue and is devoted to her, a family friend, and Sue's very busy daughter) we ensure that at least one of us goes in every day. I have so far been doing 5 or 6 visits a week but I wouldn't be able to do it if I was working of course. If I had more confidence in the home I might go less often.

But everyone's situation is different and I agree that no-one should feel guilty about the number of times they visit.

 

[oilovlam]

I suppose how often you visit depends on what one gets out of it. If one is getting upset by the visit then it is only natural to take a step back. If the PWD isn't deriving any benefit then that would be another reason to reduce the visits. As long as know they are safe and being looked after, that is what matters.

Sounds like you have done your fair share and you are preparing for life to continue.

My life is centred around my mum. When she does go then I will have to start my life again. I know it will be a shock.

 

[Soobee]

I used to try to go twice a week. It often became once a week but then I would feel so guilty I would force myself to go in. It was easier some times than others, it depended on how mum was that day, and how much I felt I connected with her.

Most of the time I wasn't sure whether the visits were positive for her or not, so I found it quite emotionally draining, but I kept trying different things to make a connection. The best day in her last few months was when I asked her which colour Jelly Baby she wanted and she clearly said "red!"

 

[MeganCat]

I go twice a week, mum doesnt appear to know who i am or even recognise that im there for most of the visit. I work full time, so thats about right for me - when she was mobile and knew who i was i would go at the weekend also and take her out.

She talks incessantly but you cant make sense of her words, many are made up and you cant tell what shes saying. APART FROM last thursday .... She said ' i love you' then immediately went back to incomprehensible natter. !!!!! Made my year!

 

[lemonjuice]

I started off visitin twice a week originally but since my mother has deteriorated visit only once a month. She doesn't benefit from my visits. Often sleeps through them and if she is awake, cannot squeeze my hand or talk or most days even turn her eyes in response.

I haven't had any response for the past two years (though occasionally the morning carers say they get some response) and I just find the whole visit so distressing and my mother no longer benefits in any way from my presence. It's the carers she sees regularly who have become her 'new family'. Yet I still come home distressed, and for several days afterwards, so for my own mental health have cut down my visits.

I even asked the other day if there was a certain time of day which was better and the reply was, "Not really, you just have to be lucky enough to catch 'the window'."

 

[missmole]

There is so much guilt attached to this isn't there?! I am currently feeling very resentful at how often I am visiting my mum - 5 times last week and the week before. She is still just about managing at her home (with my help) but I am looking to get live in care because it is currently impossible for me to have a life or get anything done! I know that I can't carry on with this and feel really bad and selfish when I read what sacrifices other people are making. In your case, you have a young family and I really believe their needs (and yours) must come first. If you can stick to once a week then at least you can keep a check on things at the care home and make sure your mum continues to be well cared for. But if you can't always do that, don't beat yourself up about it. Easier said than done I know.

 

[Georgina63]

Too often, not often enough...I don't think there is a right or wrong answer, just what feels right for each of us. When my folks moved into their care home last year, i visited 3-4 times a week. Now I visit 2-3. I feel guilty when it's only 2 and sometimes I don't want to go. I know they are well cared for, visits are sometimes difficult and I feel I'm not adding a great deal, then as today, someone will say something like 'your Dad lights up when he sees you'...... I'm not sure whether that makes me feel better or worse! Sorry, I'm not being much help am I?! Georgina X

 

[onlyme1]

Hi chook, my mum and dad are in a good CH together, been there 3 yrs. I spend every Sunday aft with them, also meet them at singing for the brain each wed. my kids are grown up so I've just built it into my routine. Sometimes mum will say 'I thought Lindy Lou might come today but she must be too busy'. As others say, your mum would love to know you're putting your children first. She's safe and well cared for so be kind to yourself. Bless you. X

 

[oilovlam]

Bookcase analogy - especially at the end of the video - may provide a reason (or not) to visit:

http://dementiapartnerships.com/resource/dementia-friends-bookcase-analogy/

 

[LadyA]

I used to visit my husband at least every other day. But I was fortunate in that his nursing home was only about 15-20 minutes away, and was literally on my way to just about everywhere else I went! So, many days, if I was on my way home from somewhere, I would pop in even for ten minutes. In fact, he became so used to me popping in and out, that he thought I lived there, and was just busy elsewhere in the building when I wasn't actually with him - and I encouraged that. He asked one day "Where are you when I can't see you?" and I just said "Oh, I'm usually around somewhere. There's a lot to do!" (holding up a laundry bag). and he said "Yes, I know - you are very busy." But he was quite content, feeling that I was around somewhere nearby.

 

[MeganCat]

Thats a great video oilovlam
Thanks for posting, i had seen it before but its good to revisit it and refocus

 

[Ritajb*]

Hi chook
I am in the exact position as you! When mum first went into the care home me and my sister made sure one of us visited everyday! My brother also travels up from London sometimes just for the day! Mum has now really declined and I feel like I don't want to go. Like you it's so upsetting as she makes no conversation and I just sit there. She never had painted nails but some time back decided she wanted the painting. I spend an hour sometimes doing them for her without a word. The home she is in is lovely with lovely staff. We are happy with her care and now have dropped our visits to 2 a week. We go together though now to be company for each other. Don't feel bad I don't think your mum will know and if she was anything like mine was years ago she would be horrified at how things are. I remember her saying if I get that I don't know what I'm doing give me some tablets! It's the most cruelest disease to have to endure! My thoughts are with you! Xx