Your tips: helping to prepare someone to move into a care home

[HarrietD]

Hi everyone,

Our Alzheimer's Society magazine Dementia together includes real-life experiences with every issue, and they'd like to hear from you.

This time, the question they're asking is:

What advice do you have for someone who's helping a person with dementia prepare to move into a care home?

Imagine someone reading the magazine is struggling with this. What would you tell them about:

• Making decisions over what the person with dementia takes with them?
• Dealing with feelings of guilt?
• Getting help with adjusting once the person has moved into care?

Please add your comments below, and they may be featured in the next issue of the magazine.

Thanks

 

[JudyS]

My mum was diagnosed with Alzheimer's just over two years ago and has deteriorated tremendously in the last nine months. Three years ago when she was still driving (she is now 94) she agreed to go for a trial couple of nights at a very nice country house care home close to me. She lasted less than a day and she checked herself out and drove back to her flat, saying that they were all gaga and she was not ready for that yet!

Back in August last year I took her to have a look at a very nice new care home which has a separate dementia unit for when the time comes that she needs to be in a secure place. I was due to have a hip replacement and suggested that she might like to spend a couple of weeks there while I was unable to drive etc - the place is like a luxury hotel, not cheap but just the sort of place that Mum likes. She flatly refused to go, saying that she did not want to move from her flat and she would not even go for a short "holiday".

Fast forward to six weeks ago, Mum had a fall in her flat and hit her head, as a result of which she had to come to stay with me for a week and had two further falls, the last one necessitated a trip to A & E where she was seen by the frailty team who felt that she needed to be in a care home for respite for a couple of weeks. She was discharged to the same new care home for a two week respite, which was extended for a further two weeks and has now been extended for a further month with her agreement. My feeling is that she probably will not return to her flat but we are taking things a week at a time and hoping that she will agree to stay permanently as at the moment she has capacity to decide where she wants to live. She says that she is very happy there and is being well looked after, her room is lovely, the bed is very comfortable and the staff are lovely. She says that she feels safe there and the interesting thing is that since the first week she has not mentioned going back to her flat. Her short term memory has deteriorated to the point that she cannot remember things that happened yesterday, today or even an hour ago and frequently has no idea who she has just been talking to on the phone. We are hoping that she will forget about "home" and will agree to make the move permanent so fingers crossed! The worst thing is not being able to see her as when she was in her flat I visited several times a week but as she seems quite happy at the moment I do not feel guilty - I know she is in the best place for her even though she was so resistant to the idea - her safety and wellbeing is paramount.

 

[skaface]

My mother was diagnosed with Alzheimer's in 2013 and by 2016 she was having carers go in three times daily. She was also having a lot of falls and the memory clinic said it was time for her to go into residential care.

I was dreading this, as I knew she would get upset, or angry, but in the event it was straightforward. I found a home that was happy to take her and on the day they came out to assess her they offered her a 'taster day' where she would have a bath (she had stopped washing altogether by then and, frankly, stank) do her hair and feed her (she was more or less living on ready meals microwaved by the carers from the agency). To my surprise mum accepted this and on the day in question the home arranged transport for her (because she was immobile).

At the end of that day I went to visit and much to my relief mum said 'I like it here, can I stay?' to which I answered 'Of course you can!'

 

[HarrietD]

Thank you so much @JudyS and @skaface for taking the time to share your experiences It's much appreciated.

 

[MaNaAk]

Dad had a couple of day visits before going into the care home for respite where he settled very well. When he went for his respite I just said that we were going to that nice place again. We arrived just as they were about to have an activity which was good timing and dad's things were already there and unpacked. I disappeared discreetly and there was no a peep from anyone until the home phoned to ask whether he could eat fish and chips. His respite lasted two weeks and he went in permanently two weeks later. I felt a mixture of grief and relief at the same time and I kept telling myself that I could do no more for him.

MaNaAk

 

[Andy69]

Dad had a couple of day visits before going into the care home for respite where he settled very well. When he went for his respite I just said that we were going to that nice place again. We arrived just as they were about to have an activity which was good timing and dad's things were already there and unpacked. I disappeared discreetly and there was no a peep from anyone until the home phoned to ask whether he could eat fish and chips. His respite lasted two weeks and he went in permanently two weeks later. I felt a mixture of grief and relief at the same time and I kept telling myself that I could do no more for him.

MaNaAk

Hi there.I had to put my dad into a home a couple of weeks ago.After one week he had deteriorated so much that last Monday we sadly lost him.It was a huge relief as he was going down hill daily and the fact he hasn't spent years in a home being false fed and cleaned is a real blessing as he would have hated that.I miss him with all my heart but at 87 i think he did well and luckily never suffered for long.

 

[MaNaAk]

Dear @Andy69,

I'm sorry to hear about your dad but you did your best and you should be proud.

Hugs

MaNaAk

 

[HarrietD]

Thanks so much @MaNaAk and @Andy69 for sharing. Many people talk about feeling a mixture of grief and relief, and this is completely normal. We appreciate everyone who's commented on this thread so far for being open and honest about your experiences.

 

[PalSal]

Be sure that you check what the night staffing is in your care home.
I found the night staff so reduced the transition required the administration of too many drugs at night to cope with his nocturnal activities. 3 members of staff for 114 residents from 9PM to 5 Am. It was a shock but appears to be the standard here. It is unacceptable and I am pushing for change.

 

[HarrietD]

Thank you very much @PalSal, this is helpful.

 

[nestle]

In the early stages of my partners dementia he was open to talking about the need at some point to move to residential care, so in the early days I involved him in decisions so I knew that when the time came he wanted to be located close to his children. By the time that happened his capacity to make decisions was rather more foggy but he had some lucidity about what was happening still.
I was able with the help of family set up his room beforehand while his family looked after him . Then on the night before at the request of his children I explained to him what was happening the next day. He expressed surprise but not objection. I found it, and still do deeply traumatic. That night I laid next to him in bed for the last time being careful to remember the feel of his body next to mine.
On the day, I waited for him inside the room whilst his family brought him in to me so I was there ready to greet him.
I would say it took a couple of weeks for him to settle but the carers soon won his trust. We made sure some one visited him every day . Despite him being 120 miles away I visited every week staying over one or two nights with the family. His children were able to enjoy quality time with him .
Of course the pandemic has changed all that.
19 months on his LBD has progressed and has need to transfer to a new carer home that can better meet his needs, but with easy access to a garden , a higher staffing ratio day and night I am optimistic that his wellbeing and quality of life will improve.
I managed his move in the following way which you can see in another of my threads.
On the day I arranged for a small amount of personal effects and clothing to be ready in reception to put in the car without him seeing, then they brought him to me , fortunately he recognised me. I told him we were going out for a cup tea . We went to the new place and I said , 'lets go in here for cup tea ' which we did in his new bedroom. I showed him the view of the lovely garden through the window and he said 'he'd forgotten about that@ . He's not seen grass and trees for months. As all was calm , I then explained to him that this was his new home and that the children had decided it was time he had an upgrade. He did not bat an eyelid . I cared for his needs all day while the new carers popped in to say hello. I put him to bed in the evening and said good night see you tomorrow.
Apparently he slept well , accepted his care the next morning , ate all his breakfast and lunch the next day , something he had been struggling to do in the previous home.
The next afternoon I returned with all his clothing and personal items and while he was asleep unpacked.
When he woke up I spent some time with him in his room , played some music and read to him.
I reminded acknowledged that he had been having a miserable time but this was his new place now, he didn't have to go back to the old place and that things could only get better. He has an enormous language difficulty but I had the sense that he concurred with what I was saying.
I said goodbye to him as he was about to have his tea and said I would see him as soon as he could but his children would see him soon. He seemed to accept this.
The care home have shown great compassion in allowing me this time and his children to have 2 visits per week for the next 2 weeks .
Since then I have heard that he is sleeping well and settling well .

 

[HarrietD]

Thank you so much for taking the time to share this @nestle. I'm glad to hear that your partner has been sleeping and settling well recently.

 

[margherita]

How do you think I can prepare my husband if he forgets anything within a minute?
Despite his poor memory and nonexistent reasoning, it is not easy " to take him in"
I thought I could stay in the care home with him on the first days...as if we were on holiday in a hotel.

 

[HarrietD]

@margherita, I'm so sorry. I can imagine how difficult it must be. Thank you for sharing.

 

[JohnGroban]

Mine is a bit different, but I think share it might help some.

In our case the process from starting dealing with dementia to moving into a care home happened in less than ... 10 hours.
My grandma of 95 started one afternoon to forget who my parents are (a few days after she broke her hand) and during the night she became very violent towards them, so we need an ambulance to calm her down and while she was sleeping I had just a few hours to find a home care to take her and then see what actually is wrong with her.
So, since that moment 5 months passed. She's been diagnosed with dementia, but we had to learn from zero how to cope with this.
So

• Making decisions over what the person with dementia takes with them?

It really depends on the place you take them, what is allowed and what isn't. In my case, a few clothes and pictures will help.

• Dealing with feelings of guilt?

I've never imagined in my life I would take her to a home care. I was against it all my life, but 5 months passed since we are in this situation and I can say we were blessed to find a fantastic place where the staff is really kind and she is well taken care of. As much as I wanted and hoped, we cannot take care of her (the family). We are not prepared and will ultimately destroy our mind and health. Guilt is there, but there isn't a better thing you can do.

• Getting help with adjusting once the person has moved into care?

You try to keep your mind and life occupied. My routine is going to her place and take care of the flowers. Try to find something that he/she loved and do it.

And don't keep the pain inside. Talk to people.

 

[HarrietD]

Thanks so much @JohnGroban for sharing your experiences and insights. I'm sure they will be really helpful.

I'm glad you've found a place for your grandma where she is well taken care of. You're absolutely right - it's really important to talk to people about how you're feeling.

 

[Graybiker]

Try respite. My main take from it.

mam had dementia for over 10 years, dad, in his 80’s, struggled. Mam went for respite in 2 very different care homes. One very modern, excellent room facilities, very large. The other much smaller, a converted & extended old house.
when it came time to choose a permanent home for her, we chose the latter. It was a better fit for her & gave excellent care. I believe the care is the 1st priority.

we didn’t tell mam she was going there permanently, told her it was for ‘recuperation’ again. Consequently we took few personal things. She also would pack & hide anything important to her. (Did this at home too), so no point in taking too much. Having said that, her room was bright, comfortable & cheerful. It was difficult to start with & got to a point where dad wanted to bring her home again, but convinced him that was not really an option.
after a couple of months she started mixing more with other residents & taking part in activities. She was a very social person & ended up very happy there. A particular high point for me was when she told me ‘I’ve never had so many friends’.

don’t think mam ever realised she was in a home, she thought she was on holiday in a hotel. If you asked her how long she’d been there she’d tell you ‘about 2 weeks’. She was there for 2 years.

an important note. We were told from the start, this was mam’s home now & to treat it as such. We did & were welcomed at any time. Mam & dad had pizza night on a Saturday. Told staff & they said no reason to stop. We‘d order a pizza to be delivered there, take dad down, staff had a small table set in conservatory. They enjoyed pizza & a glass of wine, just as they normally did.
we realised, it’s not the end of the world. Mam had the 24 hour care she needed, but we could still enjoy spending lots of time with her. Family & most importantly dad are still now convinced it was the best decision we made. It’s awful at the time, but it can mean life for all is easier & happier.

 

[Susan11]

Try respite. My main take from it.

mam had dementia for over 10 years, dad, in his 80’s, struggled. Mam went for respite in 2 very different care homes. One very modern, excellent room facilities, very large. The other much smaller, a converted & extended old house.
when it came time to choose a permanent home for her, we chose the latter. It was a better fit for her & gave excellent care. I believe the care is the 1st priority.

we didn’t tell mam she was going there permanently, told her it was for ‘recuperation’ again. Consequently we took few personal things. She also would pack & hide anything important to her. (Did this at home too), so no point in taking too much. Having said that, her room was bright, comfortable & cheerful. It was difficult to start with & got to a point where dad wanted to bring her home again, but convinced him that was not really an option.
after a couple of months she started mixing more with other residents & taking part in activities. She was a very social person & ended up very happy there. A particular high point for me was when she told me ‘I’ve never had so many friends’.

don’t think mam ever realised she was in a home, she thought she was on holiday in a hotel. If you asked her how long she’d been there she’d tell you ‘about 2 weeks’. She was there for 2 years.

an important note. We were told from the start, this was mam’s home now & to treat it as such. We did & were welcomed at any time. Mam & dad had pizza night on a Saturday. Told staff & they said no reason to stop. We‘d order a pizza to be delivered there, take dad down, staff had a small table set in conservatory. They enjoyed pizza & a glass of wine, just as they normally did.
we realised, it’s not the end of the world. Mam had the 24 hour care she needed, but we could still enjoy spending lots of time with her. Family & most importantly dad are still now convinced it was the best decision we made. It’s awful at the time, but it can mean life for all is easier & happier.

What a brilliant Care Home. We found a nice one for Mum too. We were lucky. We had to find one at short notice. When we visited the one we chose we could hear laughing when we walked up the path. I thought that was so positive as a lot of the ones we looked at were very quiet.

 

[HarrietD]

Thanks so much @Graybiker and @Susan11 for sharing.

 

[She-Luna]

My Mum went into a care home last December, and it was a very quick process, she was unsafe in her flat. As she's self-funding it was all sorted pronto. Luckily, perhaps, I had already visited the home she went into 3 years previously, when we were looking for respite for her after a hip replacement. She ended up going for respite to a different home which was run by the same company, and it was very good.

She had a massive deterioration last year and her last few weeks at her flat were awful. Regards preparation, her main concern was company, so explaining to her that she was going somewhere where there were always people around to talk to, where she wouldn't have to worry about cooking or anything 'domestic' seemed to reassure her. We sent her TV over, plus some family photos. As she had an obsession with money (i.e. needing cash to pay for things) and would look in her (empty) purse and get upset several times a day, we put a few coins in her purse, removed all bank cards etc. and left her with just a small handbag and said purse. I also put a little notecard in her purse telling her not to worry about anything, and we loved her.