Care home visiting - so awful!

[AMBOG]

Went to see mum today. They brought us in - dad and I. Mum was asleep, as she is most of the time. We had a COVID test, they put up a screen, we put gloves on ( very difficult for dad) and plastic aprons. They wheeled mum over. She was barely awake, said she was hot, kept trying to get up and just said she wanted to go to bed and could we get anyone. (She has Parkinson’s dementia) We were there for 10 minutes and then left because she was tired. Dad cried because he forgets how bad she is and kept saying she’s not coming home and that was the worst visit. We went for a little walk and I took him home. At home he said is your mother upstairs and had completely forgotten visiting because he has dementia too. All in all an upsetting afternoon, which nobody got anything from and was a pain for the carers. What on earth is the answer?

I'm so sorry to hear this
I have recently started to visit my dad in a care home after 15 months of not going and while he is never upset the visits are excruciating and if I'm honest I'm doing them so that the home see him getting a visit and so that I have an answer when friends ask me how he is.
I hope he gets some benefit from them because I don't, I come away so sad for him and the position he is now in.
I don't have an answer for you except to say that hopefully there is in benefit to the visits but you have my heartfelt sympathy

There isn’t an answer. 💐and 🍷 is all I have.
Massive hugs.

Thank you for replying. We went at 2 o’clock today and he has just rung me twice in the space of 5 minutes to ask if we did. ( I have written it on 2 whiteboards for him). I feel like such a cow as I was quite short with him and he doesn’t deserve that as he is unfailingly polite and not difficult at all. It would be a completely different kettle of fish if mum was at home. I would have some serious ranting to do then. You really have to withdraw emotionally as it is so sad. The misery of living too long. Balzamico how long do your visits last?

Couldn’t just read and move on without replying that I feel for you, in what must be a really difficult situation for you all.

I work in dementia services but not as a carer and can well imagine how your visit went as it sounds quite typical. It must be awful now your df is heading down that route.
To be honest short visits are probably best for both sides and at least the carers can see you are making the effort to visit which also counts for a lot.
Have you tohught about a dementia day centre for your df?

Oh gosh, that sounds really hard Abd you are dealing with your dad too.

I think there must be lots of us going through this.
It totally is the misery of living too long. My mum has been in her lovely nursing home for nearly 5 1/2 years.

I am going to visit my mum next week and TBH, I feel just like @balzamico She has advanced dementia and is in a specialised wheelchair when she is up. Last time we saw her in person was also 15months ago and she was asleep and we couldn’t rouse her.
It’s a 400mile round trip too.

At least the care home is only 5 minutes drive away. 400 miles is so hard. Crimson thank you for the suggestion but I don’t think he would like a dementia centre. Most of the time when he is home he thinks mum is asleep upstairs and he must be thanking his lucky stars that he is getting so much time off. When mum was home he just ran round doing her bidding. He still doesn’t sit down just hovers.

This sounds so tough for you all. Is your dad OK to be home alone?

No suggestions, just empathy. Visiting was bad enough pre covid to relatives with dementia. It must be worse now.

I know how you feel, my lovely mum is in the advanced stages of dementia. I go once a week for half an hour but feel like a cow for not going more. It's hard because I'm a single working mum and don't have childcare options (my mum was my childcare) !! I know if my mum was in her right mind she would tell me not to go as she was so selfless. I can't not go, I just sit and hold her hand, take her flowers etc. She is usually asleep. Other family members don't go to see her despite many promises they will which niggles slightly but hey ho

Hercas dad is fine home alone. He has carers twice a day to make lunch and tea, I call in every day sometimes for just 5 minutes and he just follows the same routine he always did. He never leaves the house. He has a cleaner and a gardener. I am lucky they saved enough money to be able to afford the support they need. Lollipop I think it’s worse than death because they are there in body but not in any way like they were before. My mum would hate to know how she is now.

Might he be better in the care home with her? Sorry if that is a stupid idea.

So sorry for you all. I lost my DF in 2019 and DFIL 3 years before that. it was awful all round. The only reassurance I had was that they didn't feel the trauma we did. Dad was very absent for the last year & only briefly aware towards the end. He was mostly lost in the past. DFIL had some distressing moments of clarity but he didn't remember for long. Your poor Dad is probably feeling ok now, while you're still hurt and upset. You're right to keep up the visits though. I'm certain it makes an impression on care staff & perhaps your parents do have some awareness. The brain is a funny organ.

Big hugs to you

I think that we, as the able-brained, get far more upset about these situations than our relatives do.

Your previous mother might be upset at the idea she would one day be in a care home with dementia, but your current mother probably just wibbles along happily.

@AMBOG the thought of how he would feel if he had any awareness of how he is is the factor I find most distressing.
I live almost two hours away so it's a day's endeavour to go and see him, I was there over an hour the first time but only half an hour the second.
I wish I could go more often for much shorter time, I always take the dog with me and an old photo or two to talk about - he has virtually no speech now and I find it really hard to keep talking at him.
I have siblings who have yet to visit since lockdown eased.

I go to the care home every eight or nine days and drop off home baking and cakes and a letter. I actually only go inside and visit every other drop off and struggle with 20-25 minutes. I feel awful I can’t bring myself to do more. She reaches out for the cake packaging as she clearly recognises it as it’s been consistent over lock down but she never looks up at me.
The care home staff get looks and smiles and recognition from her. I don’t think I am jealous. I think I am accepting that they are her world now.
But it all sits rather uncomfortably with me and I feel after all these months apart I should do more.

@balzamico same with my sibling and niece and nephew they haven't been to seen her since she was poorly with Covid and they were so worried when she had it! Puzzling. The care home have allowed more than one visitor for ages now.

When you visit play music from their era. Music is one thing that rouses people. Perhaps that would be a way to find a connection?

I visit my mil who moved into residential care a month ago. She loves her new digs as wasn't coping before. The home, carers and friends she is making at her dining table have become her world very quickly, thank goodness. I'd hate her to be pining to be elsewhere. I visit for an hour but it feels a long hour, I'm going to make it short and sweet in future as I am sure she'd find it enough to see me for half an hour at a time.

I have just seen all these replies. It’s very comforting to know that other people are struggling with the same things. I think I could cope better if it was just mum as I have accepted that this is the way she is. I had no idea she had dementia when she was at home. ( she has only been in the home for a year) but when I look back at some of the rows I think of course she had dementia. She was really bad for the last few months, wailing all the time and abusing carers verbally as well as kicking out but they have changed her medication and she is calmer and less distressed if sleepy. We were visiting for half an hour at a time which was a struggle. Balzamico I don’t know how you managed a whole hour! Dad is the one who tears at the heart. He is so lost without mum and says he misses her, but I find him hard to chat to too. I don’t think we ever had a proper conversation in my whole life - not because he was an awful dad but because he is quite reserved and we children continued to be seen as children not adults. Now I am virtually his only companion and definitely don’t come up to scratch.

When I was visiting FIL I used to bring a newspaper & read out bits to him. That was great to pass the time & all he had to do was make ' 'hmm?'noises. Worked better than a book because it was more natural.

Notfinished that’s a good idea. Music is also a good idea as suggested by joystir. I think you are right Thursday that we get more upset. Dad is in his own little world at home in familiar surroundings. He doesn’t need a care home yet. He just potters around, occasionally writing cheques for charities - always a suitable amount about £20, he sometimes plays patience, sweeps the kitchen floor, makes his own breakfast. Fingers crossed that continues.

It sounds as if your df might be a candidate for supported living, his own little flat and the amount of care hours is determined by his needs.
Has your dm got a cd player in her room, you could take some suitable cd's in, if brave sing to her. Hand massage is good with some hand creams. Reminiscent books?
Make her a photo album, you can also get those specially printed in to books. Put some framed family photos in her room, but I imagine you have already done that.

Crimson lake thank you for the suggestions. I don’t think it would be a good idea to move dad he has his own routine which is dictated by familiarity and I think he would be upset and confused to be somewhere else. At the moment we can’t go in mums room but good suggestions for when we can. I have already made her a photo montage and an album but to be honest I think she has gone beyond that now,

Yes good luck to all of us.