Mum just went into a care home - new territory for both of us

[Alloway]

The moment finally arrived this week and my Mum moved in to a care home 3 days ago. Until fairly recently she'd been implacably opposed to ever moving to "one of those places" but was managing well enough living on her own for this to be unnecessary. After several recent emergencies and a general decline in her congitive ability we decided the time was right at least for a trial stay.

Amazingly Mum was happy to go along with the idea of trying a short break in the home. We used several arguments as well:-

• it's just down the road from us, so we can see you every day,
• our neighbour had stayed there and said it was just like a hotel,
• the food in the restaurant is great and you won't have the hassle of shopping and cooking yourself

I planned the details of the move meticulously and everything went like clockwork on the admission day - too well really. Mum was all packed and ready to go when I arrived at her house to collect her, the CH was well organised and professional when she arrived and Mum seemed happy and at ease. She was clearly having one of her better days and I was filled with doubt that maybe we had acted too quickly.

Day 2 however was a different story. I was informed that Mum had spent the first night wandering around and was up till 4am (a more extreme version of nightime activity we'd seen before when she visited relatives). I went over to the CH in the afternoon and she was very pleased to see me, standing there in hr coat and gloves - she had convinced herself she'd been there already for the full duration of her break and I was there to take her home! Not upset or anything, but very confused and more typical of her behaviour these days, confusing where people live and who their kids, partners are, sundowning etc. With help from the CH staff we managed to distract her and get her settled before I left (without her of course).

I was planning to visit Mum again today and maybe take her out for a short walk, visit to a cafe. But the CH manager tactfully suggested this is not a good idea until Mum is more settled, and I guess she's right.

I feel tortured and exhausted putting my dear Mum through this and I am still unsure about whether it will work longer-term (at the moment this is just a 2-week try-out with options to extend). However, the alternative of her continuing to live alone, 1 hour from the nearest relative in a big crumbling house, plagued by rogue traders and not eating/medicating properly, losing things all the time - is no longer a viable option.

Is there anything else I can do to reassure Mum, should I continue to visit each day or is this making things worse? Anyone out there with similar experiences please help!

 

[Chemmy]

However, the alternative of her continuing to live alone, 1 hour from the nearest relative in a big crumbling house, plagued by rogue traders and not eating/medicating properly, losing things all the time - is no longer a viable option.

1. Print your words above out and stick them on your fridge. There's your answer to the long-term scenario

2. Take the advice of the CH staff and wait until they suggest you go in again / take her out.

3. Stop fretting - she's safe and cared for.

4. It's called respite for a reason, so go and do something nice for yourself

As for the hat and coat - my mum wore hers all the time for the first six months.

 

[AnnieS]

Chemmy is absolutely right. She is safe, warm and looked after. She will be confused, as she has dementia. Your instincts are right - she needs to be there. Go and do something nice for yourself!

 

[Alloway]

Thanks for the reassuring comments. I did go in today and had lunch with her at the CH restaurant. This was an interesting experience in good and bad ways. The good news is that she ate her whole 2-course lunch without complaint (I thought it was pretty good too!). This is encouraging as she normally has little interest in food ad has lost a stone in weight since a year ago.

On the other hand I had a good chance to look at the other residents, many of whom seemed in quite a bad way and all looked very fed up and institutionalised. It certainly seemed more like that than the initial visit I made to the CH some weeks ago. That aspect does bother me a lot, that Mum will decline if she is surrounded by othrs worse than herself and doesn't get enough contact/stimulation from the outside world. She can't stay with us, but I do still have some thoughts that maybe some form of heavily sheltered housing near us might be a alternatie if the CH trial doesn't work out.

 

[Onlyme]

I have had meals in the NH with Mum and found the trick is to get a table on your own and sit with your back to others who are worse off than your relative. This way you can block out what you don't want to face and concentrate on your Mum. As time goes by you will be able to cope but at the moment its probably a good idea to cut yourself off while you both adjust. Mum is now on a table of similar stages and they will all chat to each other. Some have a higher level of dementia, some are more deaf so it leads to some highly amusing conversations but it keeps them communicating.

Give the home a chance, it may be that people take the more able out for meals at the weekend so you might not be seeing a true picture.

 

[bets daughter]

Hang in there i know its very hard , you will go through different thoughts maybe Mum could manage at home or assisted living or may it is in the right place i did all this you swing from one to another depending on how the visit was ect and how you feel .I am sure in time you will know its the best place in the home , how ever difficult it is for you all , look forward to hearing all is improving kind regards Margaret

 

[Alloway]

Panic phone call

Situation just got worse. I had a call rom the CH in the past hour. Mum very upset and demanding to speak to me. They put her on the phone and she insisted in very clear terms that I come and take her home or she will get a taxi. I was taken aback as I thought the CH people were trained to avoid this scenario by distracting her (though I know legally they have no power to detain someone against her will). I said I could not get her today (true as I am out for the rest of the day). Phoned back in 15 mins and they now have her calmed down and flower arranging in the garden. This incident has given me a further jolt - it's so frustrating that she is clearly failing at home on her own (on my other threads you ca see the sort of thing I'm talking about), yet she has enough awareness and strength of will to see through my deception in putting her in the CH and will fight me all the way!

 

[Chemmy]

If it were me, I'd stay away for the next couple/few days. If you had a bad cold or an upset tummy you wouldn't go and see her. She'll cope. She might be unhappy sometimes right now, but sure as eggs is eggs, she'll have forgotten all about this next week.

Maybe it was your visit at lunchtime that unsettled her. She might even be picking up on your anxiety. You did absolutely the right thing by fobbing her off in the short term on the phone , but it's far too soon to be making judgements.

Don't panic. Give it time.

 

[Aquamanda]

Your situation sounds exactly what I have been going through.
Basically my mother could not cope at home but had a phobia re care homes. She finally asked herself to try a wonderful home very close to us and we spent ages setting it all up, and she was very excited about it.
The deal was it was initially a one month trial.
The next morning she rang me, really angry, demanding to go home, she hated it there etc etc. I was dreading visiting her but when I got there she was in a much better mood.
I honestly never thought she would settle even though the CH said she would. We had weeks of her trying to get them to book her a taxi to go home, packing her clothes, taking pictures off the walls and packing them etc. Unbelievably stressful.
That lasted for about 2 months. She has now been there over 3 months and is really starting to settle. She is much calmer, has made friends, joins in the activities, praises the CH. However, she still talks about going home but not in a forceful way any more.
My advice would be to stick with it. The CH said nearly every resident starts off like that but they do settle eventually. Also, I would advise not to take her out - always go in to see her and make it short but regular visits. If she gets agitated about going home don't get in an argument or try to reason with her. Ignore it or change the subject. As time goes by, set little goals, e.g. well you will be here for a little while because remember we are having lunch here together next week etc etc.
Good luck!

 

[Alloway]

An update two weeks in

Well Mum's been in the Care Home for 2 weeks now and it's turning out to be a real roller-coaster experience. On the postivie side, we had a really good day on Mother's Day, with Mum coming out of the CH for the first time to enjoy a pub lunch, which all went very well and no problems with her returning to her "hotel" (as she refers to it). I visited yesterday but Mum had once again packed all her belongings in bags and was ready to leave. She kept asking me "how long do I have to stay here" and "I want to go back home". I used the recommended techniques of changing the subject, but it's so hard and I hate myself for lying to her like this. I felt really bad when I left her yesterday and can barely work for thinking about this situation. Whoever called this sort of arrangement "respite" care was clearly living on a different planet from me!

She is not sleeping well and is proving very resistant to changing her clothes and washing her hair. I think the staff are having a tough time with her although there are no reports of her being aggressive. We've signed up for a further 2-week trial period at the end of which we need to make the bid decision about signing a permanent contract.

 

[Lucy Lastic]

I feel for you and these experiences sound very familiar. My Mum has been in a care home for 3 weeks now and I have some good visits and some not so good. The dreaded question of "can I go home now?" is very difficult to respond to. I have managed to change the subject, but my last visit ended quite badly with Mum getting really angry and insisting that she was going home. She was very tired at the time and actually fell asleep in the middle of her remonstrations, so I sneaked out, leaving her with the care worker.

I had taken her out the evening before to the local theatre and we did not get back until 11pm. I wonder if this (her first outing in months) had unsettled her? Such a shame as she had a lovely time - it was South Pacific and she knew most of the songs.
I had asked the advice of the care home before taking her out and they said she would be fine, but I guess you never know.

We just have to play it by ear I suppose. Someone should compile a list of responses to the "I want to go home" scenario. We could do with tried and tested tactics!

Take care.

 

[mpierce96]

Sympathy

The moment finally arrived this week and my Mum moved in to a care home 3 days ago. Until fairly recently she'd been implacably opposed to ever moving to "one of those places" but was managing well enough living on her own for this to be unnecessary. After several recent emergencies and a general decline in her congitive ability we decided the time was right at least for a trial stay.

Amazingly Mum was happy to go along with the idea of trying a short break in the home. We used several arguments as well:-

• it's just down the road from us, so we can see you every day,
• our neighbour had stayed there and said it was just like a hotel,
• the food in the restaurant is great and you won't have the hassle of shopping and cooking yourself

I planned the details of the move meticulously and everything went like clockwork on the admission day - too well really. Mum was all packed and ready to go when I arrived at her house to collect her, the CH was well organised and professional when she arrived and Mum seemed happy and at ease. She was clearly having one of her better days and I was filled with doubt that maybe we had acted too quickly.

Day 2 however was a different story. I was informed that Mum had spent the first night wandering around and was up till 4am (a more extreme version of nightime activity we'd seen before when she visited relatives). I went over to the CH in the afternoon and she was very pleased to see me, standing there in hr coat and gloves - she had convinced herself she'd been there already for the full duration of her break and I was there to take her home! Not upset or anything, but very confused and more typical of her behaviour these days, confusing where people live and who their kids, partners are, sundowning etc. With help from the CH staff we managed to distract her and get her settled before I left (without her of course).

I was planning to visit Mum again today and maybe take her out for a short walk, visit to a cafe. But the CH manager tactfully suggested this is not a good idea until Mum is more settled, and I guess she's right.

I feel tortured and exhausted putting my dear Mum through this and I am still unsure about whether it will work longer-term (at the moment this is just a 2-week try-out with options to extend). However, the alternative of her continuing to live alone, 1 hour from the nearest relative in a big crumbling house, plagued by rogue traders and not eating/medicating properly, losing things all the time - is no longer a viable option.

Is there anything else I can do to reassure Mum, should I continue to visit each day or is this making things worse? Anyone out there with similar experiences please help!

We are about to choose a care home for Dad - 3 hours away at present. I would be interested to know what advice the care home gives on your support and visiting. Have they recommended structured visiting? My best wishes to you both.

 

[Alloway]

mpierce - the CH Mum is in encourages visiting at any time without any need for appointment. Usually when I arrive I get a quick status report before I go in as to Mum's mood and any issues they've had since the last visit. I've no idea what "structured visiting" means I'm afraid (still learning )

 

[Chemmy]

mpierce - the CH Mum is in encourages visiting at any time without any need for appointment. Usually when I arrive I get a quick status report before I go in as to Mum's mood and any issues they've had since the last visit. I've no idea what "structured visiting" means I'm afraid (still learning )

I hardly ever let the staff know when I'm visiting (I live 130mls away). I prefer to be able to drop in unannounced and I stay several hours as this gives me an opportunity to get an impromptu snapshot of Mum's care, without them being forewarned. I didn't even make an initial appointment for the first viewing and was welcomed in with open arms - that in itself told me a lot about the place.

However, I would take advice about how soon/often you should visit initially (I was advised to leave it for three weeks) and also when they felt it was OK to take her out. Perhaps they need to properly forget their old life before you risk giving them a reminder of what it was like? They might not remember the specifics, but I wonder if they remember the associated feelings.

 

[FifiMo]

One thing that you could consider doing is varying the time that you visit hyour mum. If it is in the afternoon for example, it could be the start of her sundowning and that is why you consider it is a rollercoaster that she is on. With regards to packing up and going home, in my mother's care home many of the residents do this on a daily basis - not because they don't like the place, but because of the sundowning. What you have to do is consider the overall effect of her being where she is. She is safe and cared for and eating well. Another thing to consider is that she is up most of the night - how would she cope with this if she was at home - what if she went out and wandered during the night etc etc. In my mother's care home for example, they don't stress about folks being up at night, some people wander around, some like the company and sit with the staff and have a cuppa and a natter. Their approach is that it is their home and provided there is no risk, they are free to do what they want.

With regards to the bathing and hair washing etc. Is this an activity that you could maybe do with her when you visit - like a pamper day sort of thing? Take in some smellies etc for the bath/shower. You say you took her out the other day, how about considering taking her for a shampoo and set every other week, as a treat? Does the home have a hairdressers? My mother's home does shampoo and sets in their mini hairdressing salon - doesn't cost much - and my mother thinks she's been out for the day because it is in another part of the building. If this fails, then maybe tell her you're coming to take her out for lunch tomorrow and that she needs to be showered and nicely dressed as you've found a nice place that you want her to see. You could perhaps go through her wardrobe with her and choose an outfit for her to wear - that kind of thing, and set it all out for the next day?

Can I also reassure you when you worry about others in the home being worse than your mum is. Whilst you might think this is a bad thing, you often find that those who are not so far down the dementia route, they get more interaction and one on one attention from the staff. Others might be more in need of nursing/personal needs type attention, but your mum probably enjoys the attention that she gets from them. Also, don't forget the other relatives that visit. My mother knows them all and they all make a fuss of her and are more than happy for her to join their company whilst they're there. It was her birthday recently and we were amazed at the number of people that she knew and who knew her. It was a good job we took in an abundance of cupcakes as there wouldn't have been enough to go round otherwise !

So, on a larger scales, your mum seems to be in a good place. She is well looked after; she is nearer you so you can visit more often and spend quality time with her rather than taking care of things for her; she is eating well which is a sign of contentment; she is still able to get out and about with you and enjoy your company. All round it seems like a win-win situation to me!

Hope this helps,

Fiona

 

[Chemmy]

Can I also reassure you when you worry about others in the home being worse than your mum is. Whilst you might think this is a bad thing, you often find that those who are not so far down the dementia route, they get more interaction and one on one attention from the staff. Others might be more in need of nursing/personal needs type attention, but your mum probably enjoys the attention that she gets from them. Also, don't forget the other relatives that visit.

My mum was pretty active when she first went in - kept her hat and coat on for the first six months - and was always walking the corridors, but seven years on, she is one of the poor old dears you see slumped to one side, inactive in her chair.

This is not, however, because she is bored or ignored and shouldn't be taken as a sign of poor quality care. She is at Stage 7: Very severe cognitive decline In the final stage of this disease, individuals lose the ability to respond to their environment, to carry on a conversation and, eventually, to control movement.... .....They may also lose the ability to smile, to sit without support and to hold their heads up. ...

Sad, but inevitable, if their bodies keep going that long. So if, when you visit your mum, you can also spare a few kind words to someone else's mum or dad, you really will have made a difference to someone else's day too. Last time I was down, I just sat and held my mum's hand and the hand of the lovely lady sitting next to her. She's been in even longer than my mum and they tend to sit together like a pair of bookends Being rewarded with a smile (for neither of them have lost that ability...yet) made my day. But whilst sitting there holding their hands, I take the opportunity to chat to the other residents - those like your mum - so one visitor can provide a lot of stimulation to several people with just a little extra effort.

 

[Alloway]

Thanks for all the advice.