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?

Visits are restricted at the moment due to national residential covid visiting rules. Have you thought about asking the home if you can do video calls as well- you could go to dads and support him to make them and arrange for care staff member to hold their phone/ tablet the other end and support mum to join in / relay chat to her - then you could chat or just see and watch mum for a bit. It might be less upsetting.

Right now you can't touch or hug your loved ones even on visits. Hopefully restrictions will be lifted at some point in next few months- it is so hard.

Three teen. Thank you for the suggestion but we used to have video calls when she first went in and they were awful. She can’t hear and we ended up just looking at her. Visits, though bad are much better. We went again today and were outside. It was bad but not as bad as last week. By the time I got dad home he was asking if she was asleep upstairs.

I guess AMBOG you are dealing with two frail parents and so you possibly have double the angst.
For a variety of reasons our meeting was distinctively different today.
We were outside in the car park with DM in her wheelchair, my DD and the dog. She was feet away from parked cars and the dog trying to eat her cake crumbs off her lap made for a whole different vibe.

She still didn’t look directly at us but we know she got some sort of stimulus from a new environment

Mum 5 net yes we were outside this time and it was better. Maybe when everything is a bit normal again we can take her for a little ride in a wheelchair. It might be too painful though as she really suffers from back pain. Anyway it’s over for the week so don’t have to worry until next week.

How about a bit of music from the iPod and those golf ball size speakers on your visit? With your dad is it possible to take photos and print them out same day at a nearby Boots and stick them up with date attached on a calendar so your Dad can see?

I think it is best to take the pressure off on these visits, almost expect nothing but if you talk to each other and not just to your mother it can make for a nice atmosphere, she can pick up on the tone and flavour, whereas to be cajoled - don't get me wrong it would be easy to fall into that, anyone would - but it may feel odd for her after this time.

And yes any chance of getting out of that place for a bit I'd seize with both hands.

The music is a good idea. Chatting to dad is not really viable as he really doesn’t have anything much to say anymore now that he can’t remember anything. I can always bring someone else along if we are outside. I’m off duty anyway this weekend as I’m away and my brother is up. Hurray!

Our music repertoire is the same every time... John Paul Young Love is in the air ; Vicky Carr It must be him and anything by ABBA ....

Does your Mum like dogs or cats? I have read recently that stuffed lifelike pets can comfort someone with dementia. They even have some that respond. It sounds childish but it clearly helps some people.

OP

We've been wondering about a talking photo album. We thought maybe different relatives or friends could all record themselves saying "Hello grandma this was taken on holiday in Wrexham/at our wedding/at Christmas in 2012. It was a very hot day, and we all paddled in the river. You were wearing a pink dress. Lots of love, X".

No idea if it would help though, it's a talking point I suppose, and hearing different people's voices might be good (she can't manage phone calls any more).

Talking through a screen and with masks on is hopeless too. I'm glad we can go outside now, although the not allowed to touch isn't really going very well — she's always been a hugger, and doesn't understand why we can't and gets upset if you try to fend her off.

I'm glad we can go outside now, although the not allowed to touch isn't really going very well Our nursing home says " Personal contact must be kept to a minimum to prevent the risk of infection. You will be able to hold your relatives hand however."

I'm also allowed to see him in his room, so I can kneel on the floor about 1m in front of him and look up into his face and make eye contact - it's a lot easier. No more supervised visits either.

So it looks like the implementation of rules is down to care home discretion - I'm wondering whether it's possible to negotiate something that works for you.

We are allowed into the room and we always take a selection of food to tempt her. Yoghurts, trifles, desserts, wet moist items which we feed her, we take our own spoon and soft fruit. There is a fridge in the room which we stock up. We leave a newspaper and take a different photo each time to talk about. We brush her hair and put it into a bun so she feels more human and hair brushing is a relaxing stimulus.Try an occasional face mask, file her nails and apply clear nail polish. Moisturiser her hands and legs if dry. Again massaging her hands is good. Ensure the info they hold about her is correct. My friend is a vegetarian and they insist on serving meat despite both hospitals being given the info weeks months ago. Check her clothes are hers are clean and named. Check her spectacles are hers. Check her toiletries.

DM has been in a nursing home for over 4 years. She cant speak or eat and is paralysed following a massive stroke. I visit every 10 days or so for an hour and give her a mini facial or a manicure whilst we listen to CDs or watch her fave film on dvd , or do a video call with other family members so she can see their faces and hear their news. Otherwise it's just me talking to her as she can't reply. Some closr family and longstanding friends have struggle with how she is now and havent visited for years. Thankfully the carers and a couple of the other residents really make the effort with her and brighten her day.

So sorry @AMBOG, this sounds really tough going. Thank you for starting this thread - it's very supportive and people have posted some really good ideas for visits. My mum is in a nursing home after a huge stroke and has lost all movement in one side so is wheelchair/bed bound but can talk and is sometimes quite lucid, although more often she is confused, asking when her mum and dad are coming to take her home, thinking she is at work or even at a party. Like a PP I often take sweet puddings from M&S (her swallowing is not very good) or a small bunch of flowers or a copy of Hello! - she likes to see pics of The Queen, Duke and Duchess of Cambridge etc, while I read it aloud. I brush her hair, rub in nice smelling Body Shop face cream and lip salve and sometimes even tackle her facial hair. My mum was always interested in her appearance and finds all these grooming related tasks very soothing - I've noticed she's often at her most lucid when I'm rubbing in cream. Like your mum, she often complains about being hot in bed and I spray Deep Freeze on her arthritic knees and Body Shop cooling Peppermint Foot Spray on her feet. I sometimes FaceTime my daughters so they can say hello. Agree a change of scene always makes the visit easier – now the weather is better we are going in the care home garden and I drone on about flowers, birds etc. Will they give you a cup of tea in the care home? Maybe your dad might like having a cuppa and piece of cake or a biscuit by the bed with your mum even if she is fast asleep, making the visit into more of an occasion for him?Ultimately it's all very sad and nowadays, after many years of grieving, I am so glad that my beloved dad died suddenly and unexpectedly without developing any of the cruel illnesses of old age. Anyway, I hope you have a lovely weekend away and a bit of a break.

Not looking to rain on anyone's parade but the whole food thing - well done, beware of swallowing hazard - so avoid nuts or grains or even bits of fruit in yoghurt if you're not careful. Why? Any swallow hazard can be escalated by cynical care home managers into a 'choking' hazard which means you can be barred, if those are the types you are dealing with.

Fork mashable is the best.

Thank you all and whiskey I had a lovely weekend. Every one’s suggestions are brilliant and you are all so kind. Some are not possible at the moment because we have to be outside in a basically the car park. I hate to admit it as well but I don’t like touching my mum or dad. They were never affectionate and that is catching. Every time I go I think I must cut mum’s facial hair. I sometimes make her almond tarts which she always liked. When more becomes possible I might gird my loins and take in some hand cream and maybe do her hair and see how that goes. Also will definitely try music when we can get into her room.

I think if her facial hair doesn't bother her, don't worry about it. It can't be nice for you but I don't actually think it looks that bad when it's grown a bit, better than stubble.

We used to wax Mum's face, but give her a secret paracetamol before hand to reduce pain and inflammation and keep it secret - also avoid the lips or be v careful with that area or the care home can use it against you.

I know what you mean about the hugging thing.

Also, ffs give her a drink - not alcohol but Lipton's Peach Tea I recommend. They never give enough to drink in care homes.

For those of you tackling facial hair I recommend the dermablade, it's painless and very quick.

@AMBOG I'm so sorry you have an enormous amount on your plate, it must be so hard. I'm dreading the stage of my parents needing care as I am hundreds of miles away from them.

I'm sure you already have this side of things sorted but I just wanted to ask if you have power of attorney in place for your Dad. My Grandpa in the earlier stages of dementia, bought about twenty custom made work shirts (he used to work at Barclays Bank) - the were probably about £100 each. My friend's Grandpa bought a very expensive fish steamer, he didn't eat fish. We looked after an elderly aunt who never did anything odd with money but conversely my great Uncle took to hiding cash all over his house, and I mean all over the place, under rugs, in food storage, every time my mum found some he denied it was his!
Anyway, just a thought.

I love the idea of music, I read a book recently where dementia patients gained an enormous amount of comfort from listening to familiar music.

Again, I am so sorry that you are having to watch your parents fade away, I am sure that they are, even if not consciously, drawing comfort from your visits

@PermanentTempary I suppose you are right if it doesn’t bother her just leave it. It’s like buying clothes for her. I can’t bear to buy things that I know she wouldn’t like but I have to try and find garments that are easy to get on as she fights while being dressed. Sillawithans thank you for the dream blade recommendation. Maybe I will wait until we are out of the car park visiting.
Hellhasno I have POA money for both thank goodness. Dad is really sensible with money all he does is right cheques for charities for about £20.00, when the begging letters come. He doesn’t even post them - I do that. I am on holiday at the moment and my brother is there. It’s so lovely not having to think of anything except what to do every day. I am worried though as my brother leaves on Friday and dad will be on his own until Wednesday. He has carers twice a day and some friends will keep an eye as well so it will be ok. When I look at what so many on this board are going through and how awful it was a year ago when my mum was home I’m very grateful I only have dad to look after who is so biddable and used to being bossed around by my mum so is never demanding or difficult.

Ambog we did an outside bench on Tuesday at 12 noon which is a time we have never done before and she was a different person. She actually looked at us smiled and gestured. Too early is not good as she would prefer to be in her bed. After lunch she is asleep or too tired to be bothered. Maybe we have found the secret.
I also just hand her fairy cakes one after the other so she had a positive activity. They look like the same ones she made us when she was in her mid-late 30s. Anyway, it was a lovely visit all things considered, definitely best one in 18 months. Good for your DF being so biddable. He's a hero. Be kind to you.

I find it's really only bearable visiting my mother if I can take her out, even if it's just a walk around the local area with her in a wheelchair. Otherwise trying to make conversation is hopeless - she struggles to hear me, she really doesn't process anything when she can hear me, she's constantly asking the same questions and making the same complaints. And there's this odd thing where she will reach a point when she clearly expects me to go and starts saying things like "You'll need to get on, won't you?", but if I start making a move she'll start asking what she's supposed to do, rejecting every suggestion I make, and complaining she has nothing to do and is so bored.

I increasingly feel that medical science doesn't necessarily do the elderly any favours. It would be so much more beneficial to focus on dementia rather than keeping people alive for an utterly miserable existence.

@Sillawithans

For those of you tackling facial hair I recommend the dermablade, it's painless and very quick.

I don't know about this at all - it doesn't lead to stubble then?

Cygne I am going to gird my loins and take her out next time. She was ok last time I visited well batty ok. She seemed to make more sense although she was saying she used to be a prostitute . She asked dad what was his favourite moment in his life and he said meeting her, which she laughed a lot at a real false comedy laugh. I cut the hairs on her face and she seemed grateful. I am worried the wheelchair will be painful for her going over bumps in the pavement but we will try it. There is a park over the road . She also sometimes tries to escape from her chair so it could be fun and games. I will enlist my husband and we will see how it goes.