Mum moved into a care home on Wednesday

[Cocoloco]

my mum moved into her care home on Wednesday evening after being discharged from hospital after a 2 week stay.Whilst in hospital once she was passed as medically fit she underwent an assessment which came back as having no capacity.
We went to the home the afternoon of her discharge getting her room ready, photos flowers etc and unpacked her clothes. We had been informed she would be discharged after lunch . After waiting some hours she hadn't arrived and after phoning the hospital they didn't have any idea when she would have the transport tables etc. So we had no choice but to leave. Phone call from the home at 7.45 pm saying she had arrived and all was well. They recommended that we didn't visit until Saturday just phone.
Phoned on Thursday morning and they reported all was well, I had arranged for her to have her hair washed and styled , she has always enjoyed that. The CH sent me a photo after having her hair done and updated me thoughout the day and all seamed to be going swimmingly.
I decided to visit on Friday morning as I knew I needed to pick up her washing, things were arranged quickly so no name labels in her clothes . When I entered mums room she had completely packed all her belongings including taking the photos off the wall . She said. She doesn't like the place and insisted that I had come to take her . I told her no she has to stay and lied by saying until her skin was better. She didn't seem upset when I said no but didn't understand.
I know she is in the best place and needs the care I can no longer provide or arrange to have in her home anymore. I have LPOA for health and finances . Her packing up her room has had a real affect on me I feel really sad and thinking have let her down. I am going to the CH tomorrow to take the clothes and put labels on the others that are there. The CH manager has advised after tomorrow I don't visit for at least a week for her to settle in. I don't know if this is right or wrong and whatever I do it will only make matters worse
Any advice would be gratefully received, sorry for going on

 

[MaNaAk]

my mum moved into her care home on Wednesday evening after being discharged from hospital after a 2 week stay.Whilst in hospital once she was passed as medically fit she underwent an assessment which came back as having no capacity.
We went to the home the afternoon of her discharge getting her room ready, photos flowers etc and unpacked her clothes. We had been informed she would be discharged after lunch . After waiting some hours she hadn't arrived and after phoning the hospital they didn't have any idea when she would have the transport tables etc. So we had no choice but to leave. Phone call from the home at 7.45 pm saying she had arrived and all was well. They recommended that we didn't visit until Saturday just phone.
Phoned on Thursday morning and they reported all was well, I had arranged for her to have her hair washed and styled , she has always enjoyed that. The CH sent me a photo after having her hair done and updated me thoughout the day and all seamed to be going swimmingly.
I decided to visit on Friday morning as I knew I needed to pick up her washing, things were arranged quickly so no name labels in her clothes . When I entered mums room she had completely packed all her belongings including taking the photos off the wall . She said. She doesn't like the place and insisted that I had come to take her . I told her no she has to stay and lied by saying until her skin was better. She didn't seem upset when I said no but didn't understand.
I know she is in the best place and needs the care I can no longer provide or arrange to have in her home anymore. I have LPOA for health and finances . Her packing up her room has had a real affect on me I feel really sad and thinking have let her down. I am going to the CH tomorrow to take the clothes and put labels on the others that are there. The CH manager has advised after tomorrow I don't visit for at least a week for her to settle in. I don't know if this is right or wrong and whatever I do it will only make matters worse
Any advice would be gratefully received, sorry for going on

Dear Coco,

I know how you feel dad had two weeks respite care in his care home before he went in permanently. I felt a bit sad with this but when he came out he had another fall and I put him in there permanently I realise that the feelings I had after having put him in permanently were similar to grieving but then I told myself I couldn't do anymore.

You have done your best and you should be proud of yourself. I was told not to visit dad during his two week respite so my invisibles had to step up and I was advised to do the same when he went in permanently. This worked on both occasions and after the respite it looked as if he didn't want to leave! He was also rather confused when we got home as he thought he had acquired an enormous house by the sea! You should follow the homes advice and your mum will settle.

MaNaAk

 

[marionq]

@Cocoloco my husband used to pack up
His things when he was in his own home! Don’t take it it so much to heart although I know I did too. It will pass and she will settle down. Give her a chance. The home is right to ask you not to visit too often at first. She needs to create new patterns in her life.

 

[Cocoloco]

Thanks so much for your reassurance it does help. I just feel sick . I had in my head that once the time came for her to go into a CH I would feel at ease as its been a real struggle for the past 5 months as she has got worse daily . However I still don't feel at ease just wish the knot in my stomach would go away

 

[MaNaAk]

Thanks so much for your reassurance it does help. I just feel sick . I had in my head that once the time came for her to go into a CH I would feel at ease as its been a real struggle for the past 5 months as she has got worse daily . However I still don't feel at ease just wish the knot in my stomach would go away

Dear Coco,

You have to give yourself time to get adjust as well! It is difficult I know because I've been there since dad moved to the home I've had to adjust to going from a full time carer back to my role as a Piano and Violin teacher and realising I have very little work due to spending time caring for dad. At one time I ended up with shingles and it is only now that I feel I am turning a corner with my profession.

MaNaAk

 

[Amy in the US]

I think we do lose sight (especially if the move into a care home happens quickly, or there has been illness, an accident, a hospital stay, or something of that sort) that moving into a care home is a huge adjustment not just for the person with dementia, but also for the family and carers. We also need time to get used to it!

I don't know that this will make you feel better, but the packing up possessions is a common behaviour with dementia and even people living in their own homes of many years, will pack their belongings and want to "to home." It is NOT a reflection on you or because of something you have done or not done, it's the disease.

I didn't visit my mother for about two months (yes, not a typo, months) after she moved into her care home. I was a trigger for her anger and anxiety and so I stayed away. I rang the home often for updates and my husband visited. When I did begin to visit, I had to keep the visits short, be very careful about my nonverbal cues as well as conversation, not go alone at first, and only visit with her in the public areas. Gradually that all got better and despite my fears, my mother settled into the care home well and quickly. It can work out!

Don't underestimate the magnitude of the change for you as well as for your mother! And do talk to staff and get their reports and feedback about how things are. My mother's reports were unreliable, if you know what I mean!!

Very best wishes to you.

 

[Sirena]

You have done your absolute best for your mother and I agree with the others, you need to give her time to settle, she's only been there a few days. I know that some care homes suggest you don't visit for a fortnight. My mother's CH did not give any advice and left it to me, but I did something similar to you. I saw her on the day she moved there, and then saw her the following day to take her additional clothes/belongings. I then didn't see her for over a week because she needed time to adapt to her new surroundings and people, and adjust to having new carers.

Your mum sounds like she is doing really well. My mother was very bewildered by the move to begin with and she didn't sleep for 3 nights which added to her confusion. But about six weeks later, she greeted me with the words "I love it here", and a year on she seems happy.

 

[canary]

If your mum still has her cases and bags at the care home get someone to remove them as they will be a likely trigger for her packing. Even so, until they settle the packing obsession can be very strong - mum used to nick the plastic bags out of bins and use them to pack or even just roll stuff up in her coat and cardis!! It really is not a reflection on you, its very common.

I would follow the advice from the care home - it seems counter intuitive because you would think that seeing family would reassure them and make settling in easier, but actually the opposite is true. If family is there they turn to them and do not learn to go to the carers, so they dont settle so well. It will also take time for you to adjust too.

My mum (for all the initial packing) settled in well and thrived in her care home.

 

[Cocoloco]

Thank you all for responding I am very grateful and it really helps to learn from others experiences. I had to go back to the CH today as they needed a copy of LPOA and I had got medicine from the GP yesterday that needed taking.
I had removed all bags etc when I first set up her room but she found carrier bags from somewhere to pack her things in the first instance . Today she had packed photos and CDs in the bag lining the waste bin . Nothing more was packed I don't know if this is because she had nothing else to use to put her things in.
My brother came with me today and she came running to the door tells NH him she loved it here. Makes me feel as if I am making it up . However this soon changed when for the first time since going into hospital she asked when she was going home . I explained again that she couldn't go home because of her skin condition. After some time she said to my brother "well it looks like I have to stay here then" . We both said yes that's right .
She doesn't seem to be in distress we all had a cup of tea, I discussed with the staff what she has been like and they gave every reassurance. We then
left and I will go again on Wednesday or Thursday and hope she is settling.
Again many thanks for your replies

 

[Canadian Joanne]

@Cocoloco my mother packed up every day for 6 weeks. We removed all carrier bags, luggage etc and yes, she also used the bags lining the bins. I would go in, unpack her and say not today. It will pass.

 

[Amy in the US]

My mother mostly doesn't pack her things, although there is lots of moving them around, but she does nick the bin liners! There are generally lots of them in her top dresser drawer. I just give them back to the staff from time to time. It seems to be like her toilet roll and Kleenex obsession. Sometimes I have found entire rolls of bin liners and I wonder if she takes them off the housekeeping cart.

 

[duranie]

My mum moved into a CH yesterday from a spell in hospital. She had a delirium and her az deteriorated. She was assessed as not being fit to live alone and that she needed residential care. She was fine in the assessment unit but me and my sister went today because there was some belongings left behind and she was vile to me ! She kept accusing us of lying and that she wasn’t happy that all her clothes and things were there. It was as if she was having a lucid day and was angry at me for putting her there. She always said she didn’t want to go in a home. I had to leave and just don’t want to go back as I can’t face her anger. I feel sick with the thought of seeing her again. Is this normal?

 

[Rosettastone57]

My mum moved into a CH yesterday from a spell in hospital. She had a delirium and her az deteriorated. She was assessed as not being fit to live alone and that she needed residential care. She was fine in the assessment unit but me and my sister went today because there was some belongings left behind and she was vile to me ! She kept accusing us of lying and that she wasn’t happy that all her clothes and things were there. It was as if she was having a lucid day and was angry at me for putting her there. She always said she didn’t want to go in a home. I had to leave and just don’t want to go back as I can’t face her anger. I feel sick with the thought of seeing her again. Is this normal?

My mother-in-law went to care last summer after a crisis situation after a short spell in hospital . She has severe mixed dementia at the time she went in she could barely recognise us. What you're describing sadly is very common my mother-in-law was told that she had to be there to convalesce before she could return home. The reality was that she was never going to return home. It took my mother-in-law several weeks to settle down and she was always telling us that she wanted to go home we kept our visits to an absolute minimum. We never visited more than once a week and then we timed it so that we could always come just before dinner or tea and then we would leave. The aggression the abuse towards us the accusations of lying,we were quite used to before she went into a home . These continued when she was in the care home and to be frank we just ignored it

 

[Amy in the US]

Hi, @duranie. I'm sorry to hear about your mother. Delirium is not uncommon with dementia patients and it can bring about huge changes in ability and behaviour.

Yes, the behaviour that you describe is something that happens with dementia patients. In fact, my mother did exactly the same thing that you describe. In fact, you could have written my experience for me. I know that's not of practical help, but sometimes it's reassuring to know that yes, something is because of the dementia and also that yes, other people have seen that, too.

In my case, my mother went to A&E after a wandering episode (early morning, below freezing temperatures, not adequately dressed, injured, found by a Good Samaritan). After being assessed in A&E she was sectioned (US version) and transferred to a secure unit for assessment and treatment. She spent about ten days there and was deemed not able to live alone and needing 24/7 supervision and medication supervision and other things, and went directly to a care home.

The day she was in A&E and transferred to the secure unit, she was unwell (bruised, ill from a cocktail of medicines she had been self dosing with, sleep deprived, malnourished, hallucinating and delusional) and barely knew she was in hospital being assessed.

The next day, her first day being sectioned, she was lucid and knew EXACTLY what was going on and was absolutely vile to me, like a snake spitting venom. I had locked her up without permission, I had dumped her there, I wanted to get my hands on her money and house, I was a terrible daughter, she knew just what I had done and she was going to get me for it, it went on and on. As they got her health under control and her medications straightened out, plus food and sleep, she improved and didn't show that behaviour again, until we moved her to the care home.

Long story, but we had to drive her to the care home and when we arrived there, she put on a BAFTA and Oscar worthy performance. The nurse who was there said she has never seen anything like it, that a person with dementia that advanced usually can't deliver that sort of passive-aggressive, angry/sad kind of speech. I have mostly blocked it from memory but it was uncomfortable, to say the least.

After that, I didn't visit my mother for about two months, yes, not a typo, months. Then I started short visits, always in public areas (because she would get vile if in private but not in public), with my husband whenever possible (she was only vile with no witnesses), and I would leave the minute the accusations started. I had "dumped" her in the care home, I was living in her house, I was stealing her things, I had stolen her money, I just wanted her money and she was going to call the police and call her lawyer and lock me up and...you get the idea. Of course she wasn't capable of any of those things, but she was capable of a lot of vitriol.

Eventually this all passed. Some of it was getting her meds adjusted, some of it was her getting adjusted to the care home--where she thrived, by the way, and was much happier than she had been in her own home. Some of it was her dementia advancing, some of it was me carefully managing my visits and learning how, and how not, to behave and talk, but eventually I stopped being a trigger for her.

So I can understand that you want to avoid her, not only because you may trigger these outbursts which aren't good for her or you, but also because the nastiness is horrid and distressing. Plus I imagine you have been stressed by her in general, for some time, and then again recently with her hospital stay and move. I won't judge you if you stay away for a couple of days or weeks or months; do what you need to do.

I was guided by the staff at the care home. I kept in touch by phone and did not consider coming to visit until the nurses told me she had stopped saying nasty things about me to them. This gave me a way to start building relationships with the staff even though I wasn't visiting, and we did take whatever supplies and things my mother needed to her (my OH would deliver them as she liked him, or I would leave them at the front desk).

I would also observe her from where she couldn't see me. She would happily be playing a game or talking with other residents or having her meal, until she would see me, and either turn into something from a horror movie, or try to get me alone in her room "for a little talk."

I am sorry for the long-winded story about me, but hope something in there helps you or gives you hope or just lets you know you are not the only one to have experienced this. Please feel free to ask questions. Nothing about this disease is easy and I am sorry.

Wishing you and your family all the best.

 

[duranie]

My mother-in-law went to care last summer after a crisis situation after a short spell in hospital . She has severe mixed dementia at the time she went in she could barely recognise us. What you're describing sadly is very common my mother-in-law was told that she had to be there to convalesce before she could return home. The reality was that she was never going to return home. It took my mother-in-law several weeks to settle down and she was always telling us that she wanted to go home we kept our visits to an absolute minimum. We never visited more than once a week and then we timed it so that we could always come just before dinner or tea and then we would leave. The aggression the abuse towards us the accusations of lying,we were quite used to before she went into a home . These continued when she was in the care home and to be frank we just ignored it

Thank you for your reply, I have been sitting here reading other experiences and feel a lot better as I’m not alone. I will try to keep you all updated x

 

[duranie]

Hi, @duranie. I'm sorry to hear about your mother. Delirium is not uncommon with dementia patients and it can bring about huge changes in ability and behaviour.

Yes, the behaviour that you describe is something that happens with dementia patients. In fact, my mother did exactly the same thing that you describe. In fact, you could have written my experience for me. I know that's not of practical help, but sometimes it's reassuring to know that yes, something is because of the dementia and also that yes, other people have seen that, too.

In my case, my mother went to A&E after a wandering episode (early morning, below freezing temperatures, not adequately dressed, injured, found by a Good Samaritan). After being assessed in A&E she was sectioned (US version) and transferred to a secure unit for assessment and treatment. She spent about ten days there and was deemed not able to live alone and needing 24/7 supervision and medication supervision and other things, and went directly to a care home.

The day she was in A&E and transferred to the secure unit, she was unwell (bruised, ill from a cocktail of medicines she had been self dosing with, sleep deprived, malnourished, hallucinating and delusional) and barely knew she was in hospital being assessed.

The next day, her first day being sectioned, she was lucid and knew EXACTLY what was going on and was absolutely vile to me, like a snake spitting venom. I had locked her up without permission, I had dumped her there, I wanted to get my hands on her money and house, I was a terrible daughter, she knew just what I had done and she was going to get me for it, it went on and on. As they got her health under control and her medications straightened out, plus food and sleep, she improved and didn't show that behaviour again, until we moved her to the care home.

Long story, but we had to drive her to the care home and when we arrived there, she put on a BAFTA and Oscar worthy performance. The nurse who was there said she has never seen anything like it, that a person with dementia that advanced usually can't deliver that sort of passive-aggressive, angry/sad kind of speech. I have mostly blocked it from memory but it was uncomfortable, to say the least.

After that, I didn't visit my mother for about two months, yes, not a typo, months. Then I started short visits, always in public areas (because she would get vile if in private but not in public), with my husband whenever possible (she was only vile with no witnesses), and I would leave the minute the accusations started. I had "dumped" her in the care home, I was living in her house, I was stealing her things, I had stolen her money, I just wanted her money and she was going to call the police and call her lawyer and lock me up and...you get the idea. Of course she wasn't capable of any of those things, but she was capable of a lot of vitriol.

Eventually this all passed. Some of it was getting her meds adjusted, some of it was her getting adjusted to the care home--where she thrived, by the way, and was much happier than she had been in her own home. Some of it was her dementia advancing, some of it was me carefully managing my visits and learning how, and how not, to behave and talk, but eventually I stopped being a trigger for her.

So I can understand that you want to avoid her, not only because you may trigger these outbursts which aren't good for her or you, but also because the nastiness is horrid and distressing. Plus I imagine you have been stressed by her in general, for some time, and then again recently with her hospital stay and move. I won't judge you if you stay away for a couple of days or weeks or months; do what you need to do.

I was guided by the staff at the care home. I kept in touch by phone and did not consider coming to visit until the nurses told me she had stopped saying nasty things about me to them. This gave me a way to start building relationships with the staff even though I wasn't visiting, and we did take whatever supplies and things my mother needed to her (my OH would deliver them as she liked him, or I would leave them at the front desk).

I would also observe her from where she couldn't see me. She would happily be playing a game or talking with other residents or having her meal, until she would see me, and either turn into something from a horror movie, or try to get me alone in her room "for a little talk."

I am sorry for the long-winded story about me, but hope something in there helps you or gives you hope or just lets you know you are not the only one to have experienced this. Please feel free to ask questions. Nothing about this disease is easy and I am sorry.

Wishing you and your family all the best.

You’ve been so helpful I can’t thank you enough to know I’m not alone x I will try to keep you all updated xx

 

[Amy in the US]

@duranie, I'm sure I speak for everyone here when I say you are most welcome, and very welcome here on Talking Point. TP is always open so you can stop in any time you like.

Besides TP, I have a local carers support group I attend and I have also gotten some support from events organized by my local chapter of the Alzheimer's Society. It can be both helpful and reassuring to be in a room with other carers. Perhaps you would consider a local support group or carers cafe or similar, in your area?

 

[duranie]

@duranie, I'm sure I speak for everyone here when I say you are most welcome, and very welcome here on Talking Point. TP is always open so you can stop in any time you like.

Besides TP, I have a local carers support group I attend and I have also gotten some support from events organized by my local chapter of the Alzheimer's Society. It can be both helpful and reassuring to be in a room with other carers. Perhaps you would consider a local support group or carers cafe or similar, in your area?

Thanks , yes we have them but I look after my husband also who has narcolepsy and find little time! But I will try to contact someone x

 

[Amy in the US]

Oh, that's a lot for you to manage, duranie.

 

[Cocoloco]

Thank you all once again for sharing your experiences it does help and makes you feel less alone in this journey.
Mum has been in the CH now for 6 days, the packing has stopped to be replaced by having her coat on and bag in hand sitting by the door exist all day. She has started to get up at 5am each day and after support with dressing just sits by the exist. Its heartbreaking to see.
I discussed yesterday with the CH the sort of things she enjoyed and they will try to involve her in the planned activities, so fingers crossed. I am pleased to report that the entertainment worker took my mum to the shops today in a wheelchair. I was delighted when I phoned and they told me this as I am sure my mum would have enjoyed that and also the CH are really trying to both engage and distract her.