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Struggling with Visits - Carers UK Forum

Struggling with Visits

For issues specific to caring for someone with dementia.
I'm feeling very low tonight, after visiting Dad today. Visits are difficult for so many reasons.... Dad's deafness means that everything has to be shouted, whilst his dementia means he often misses the point anyway. His hearing aids are often broken/missing (one is currently broken) and his eyesight has worsened, which doesn't help matters. (However, the optician has asked the GP to refer him to the eye hospital for cataract surgery on one eye, so hopefully that will benefit him.) He is very frail and can barely walk with his frame now, so I worry that he'll be in a wheelchair quite soon.

I took him to the pub for a meal and a pint. He seemed to enjoy it, but found conversation difficult (maybe too much background noise as it was busy there today). Then we went to the sea shore and had an ice cream. I was with him for 3 hours and found myself sneakily checking the time, as it dragged so slowly, then feeling guilty as I know how bored he gets and how he likes to get out of the care home. I wish I had lots of exciting news to tell him, or an endless supply of jokes to keep him amused, but I'm not sure he'd get the point of them now. I wish there were other people visiting him regularly, so I didn't have to go... at all! That sounds awful, but although I feel a lot of pity for him, sometimes I think I'm the last person he needs as we were never close.

I came home and told my husband all about it, and ended up getting a bit tearful as I'm finding the visits harder each time I see him. Husband got a bit annoyed as he's heard it all before and gets frustrated that I can't stop fretting about my elderly parents and their various health issues. He's had enough of hearing me ramble on about it all. I feel very alone sometimes, weighed down by the sadness of what my parents have become, and anxious about how much worse things will get. After husband went to bed I indulged in my own addiction - food. I've consumed twice my normal calorie intake today - all very productive, not! So annoyed at myself, and feeling such a wimp for being so badly affected by visiting Dad. So, this is a complete whinge really, but I don't have anyone in real life who understands how I feel at the moment. Thanks for reading, if you made it this far.
I too find visiting mum difficult too. I want her to have the best life possible, but even the best nursing home in the area doesn't have a magic wand to make her pain free and able to walk. I hate the "half life" mum exists in, and the knowledge that it can never get better, only worse and worse until the end, is hard to live with.
Oh my dear SW, I haven't posted for ages but to regularly pop on just for the comfort of knowing that I'm not in this boat alone and your posting has really touched a nerve.
I have spent the last 11 (now into the twelfth) years looking after my parents, we lost Dad July 2013 after 10 years post brain bleed and that was really hard work, he had to be wheeled and transferred everywhere and often needed cleaning up but it didn't leave him mentally scarred at all, just physically. However, during that period Mum developed Vascular Dementia so now the caring role is still in place but now for Mum not Dad. Give me the bottom wiping any day this memory stuff really gets me down and like yours my husband gets quite frustrated, I'm lucky he doesn't show it in temper but simply switches off when I get upset or need a whine and this too leaved me feeling really isolated. We have had a dreadful week with Mum she has a UTI and that has made the confusion worse than normal and I, in her head, have turned into the devil incarnate, I find this very difficult to cope with. I have two very broad shoulders and one has a little man saying "just ignore her she really can't help it" and the other has a little man saying " why on earth have you sacrificed everything for this" . I know I am going to get some responses that say I shouldn't have to do it but in reality I do this because I truly love my Mum but by God on bad days in really isn't easy. I can fully understand both of your comments (yours and BB's) about not wanting to visit , I guess we want that magic wand that will make them better and it simply doesn't exist and in reality we know that - so frustrating but you're not entirely alone other like me truly know how you feel xxxxxxxx
bowlingbun wrote:I too find visiting mum difficult too... I hate the "half life" mum exists in, and the knowledge that it can never get better, only worse and worse until the end, is hard to live with.
BB that's exactly it. We understand the reality but it's so hard to accept. I find myself constantly searching for solutions to problems, even though most of them can't be solved. I probably waste far too much time and mental energy worrying about the things I can't fix/change, instead of just being content with the small things I can do for my parents.

Thanks to both of you for your replies, it helps to know that others understand. I only managed to get 3 hours' sleep last night but I've had a better day today. I finished sorting the paperwork for Dad's funding application and did a little shopping for Mum before making a short visit to her this afternoon. I noticed Mum's nails were getting ragged again so gave them a quick trim and made her a hot drink before leaving her in the hands of the agency carer. Mum is content in her own way and Dad says the care home staff look after him well so those thoughts are what I need to keep in my head. I think I need to keep my visits to both of them quite brief... an hour or two, rather than 3 or 4 hours, is much more tolerable. I also need to find a hobby/interest to give me some light relief, then I might not dwell on the negative stuff so much.
Just wanted to send hugs to all. Yes, I find my weekends to keep mum occupied is difficult. And of course the knowledge that it will only get worse.

She-Wolf, on a practical note can you take old photos in to show dad? Maybe prompt some memories? Also, do you have an Ipad or similar? I have had some success with this to distract mum; in her case three minute videos on You-tube of babies / kittens etc make her smile and she doesn't need to follow a story or hear anything. Even You've Been Framed goes down well. I hate it but that's another story ....
When Mum first took up residence in the Care Home and every time she was in hospital I felt it was necessary (not the right word but can't think of another !) to spend at least half a day, every day with her.

I soon realised that it wasn't 'necessary' as she couldn't remember me being there anyway :( I found it was much more productive if I visited for a much shorter time - say 1 - 2 hours every other day and took her out for lunch or afternoon tea once or twice a week. The shorter time spent visiting meant that I wasn't continually searching for things to talk about and the outings (although planned in advance) gave her a nice 'surprise' :)
Funny you should mention that, Susie. As usual, I have been at mums all weekend and, as is my habit, I have phoned her at lunchtime from work to check all is OK. She has asked if I have given up visiting as she has not seen me for weeks :( . I am now wondering if I should change our routine, ie visit her twice over the weekend but vary the times and duration so that she has "something to look forward to"? Added benefit is I would get some time in my own house. Up until now, I have tried to keep her to a routine but now she has no concept of time or visits at all ... Any views?
to be honest Anne whatever you do, no matter how often or how little you visit it probably won't make any difference.

The problem is that "out of sight, out of mind" - within minutes of you walking out that door she will have forgotten you were there :( So whether you increase or cut back on your visits it won't make any difference to her - the only difference is that you will feel 'guilty' that either you're not spending enough time with her or resentful that you're spending too much time with her - it's a no-win situation :(

I had it all the time with Mum and I lived with her 24/7/365 for three years !
Thanks, Susie. Yup, guilty AND resentful just about sums it up ....

Sorry, She-Wolf, did not mean to hijack your post
I do think 'getting them out' really helps. It helps to 'amuse' them, and it certainly helps pass the time one spends with them. I do appreciate, though, that my MIL is nowhere near as 'far gone' (to be highly non-clinical about whatever her mental capacities are now!) as sadly many other carees here, so perhaps my experiences aren't applicable when a caree is definitely 'in dementia'. (I hate saying 'demented' as an adjective or description - somehow it makes them seem like they are raging around tearing their hair out!). I also appreciate that perhaps not everyone here has easy access to a car or wheelchair to accommodate their caree (and, too, that the price of petrol is an inhibitor).

But I do think that the 'toddler' analogy is helpful, because it helps you to think 'OK, if this person were 3/4 years old, would they want to sit around with me and talk, or would they want to be out and about, seeing the world, having things to stimulate their vision passing by them? Well, if so, then so they would when they are in 'second childhood'.'

Getting 'out and about' also has the benefit of being, I've found, easier on me, as well. Driving gives me 'something to do' and, too, I enjoy the views as well (again, I know I'm lucky having pretty countryside nearby). What one has to blank is a sense of 'utter pointlessness!'. I've driven 'aimlessly' for over and hour, through little villages and along country lanes etc etc, and part of me has thought 'Oh, for Heaven's sake, this is absolutely absurd! What a complete waste of time!' BUT I have to think of it differently, as taking MIL for a 'land cruise' and that the drive IS the entertainment and the outing for her - and the purpose of the exercise. Then, after the drive, taking them back is, I've found, easier, as it is the 'natural ending' of the outing, and I can say goodbye perhaps less guiltily than if she had been with me having tea/supper.