• We're currently experiencing technical issues with our newsletter software, so our Dementia Talking Point monthly updates have been put on hold for now. We hope to restart the newsletter soon.

    Find out more >here<.

Mum with dementia just gone into care home

Sarah1208

Registered User
Jun 22, 2020
90
So glad I stumbled on this website...3 weeks ago my 84 year old mum went into a care home. I had to drop her at the gate due to Covid restrictions. I have not seen her room or hugged her since that day. I am an only child and cared for her in her own home with the help of carers four times a day. As mums dementia got worse she was forgetting to drink and had several UTIs and was very frightened and unhappy. She left the tap on and flooded the house. She rang me 20 times a day and no matter how often I went to the house it was never enough. The carers kept calling me as she only wanted me. I work full time, have a husband and 2 grown up children. She had lived in the house 53 years and begged me not to make her leave.
I expected it to be hard, but I wasn’t prepared for how I am feeling. She cries when I ring her in the home and I have been allowed to visit in the garden this week from 2 metres but she is deaf so can’t hear me so she just cries. She doesn’t know why I have “put her in there” she thinks she was fine at home.
I’m in bits, it was consuming me before but this is just awful. When I call the home they tell me she is ok but she is troubled by some of the aggressive patients so sits in her room some days. However she is eating and drinking and sleeping well. And they are good people.
I just want to drive there and scoop her up and bring her home but I know it can’t happen. I just hope someone can tell me it might get slightly easier.
 

Lorna44

Registered User
Jul 16, 2016
198
Surrey
Hello there, I'm sorry that you've had such a hard time, although it's the most difficult thing we do as carers, its becomes the best for our loved ones..... You didn't 'put' your mum in there, the illness did.
It took my mum a good 2 months to settle at her nursing home, and often seeing me was a trigger for her. I always went in with a smile on my face, no matter how I felt, was bright and breezy. If she became too upset, I didn't say goodbye, just said I was nipping to the loo. Sometimes I was only there 10 minutes and then I was on my way home. I also used a lot of love lies, water leak at her house, didn't bring the car, boiler broken as reasons she couldn't go home.
It will get easier, and although she tells you she hates it she will start to settle. I sometimes watched my mum when she didn't know I was there, she joined in and was laughing and joking. As soon as she saw me she was a different person all negative and angry.
Mum being in the nursing home allowed me to be her daughter again, to have that (mostly!) quality time with her for those last few years.
Big hugs to you xxx
 

Sugarloaf

New member
Jun 23, 2020
7
I can really empathise with you . My mum had moderate to advanced Alzheimer's and broke her hip just as she had gone into respite when lock down came in. She spent 3 weeks in hospital after surgery , and without proper discussion , was placed in a nursing home , she has been there since 9th April . Before the fall she could use the toilet , a knife and fork and the telephone she lived a lovely extra care housing flat. I was her main carer and she had good support , hard for me but I did not mind. Since being in the home her condition has escalated and she is helpless. She should have had physio post surgery but had none due to covid. She now has to be hoisted to sit in a chair she is terrified of the hoist. I have been totally distraught and traumatised and as you say just wanting to rescue her, I know the home have not been able to keep the fluids up as I did and her dehydration is a constant worry. However we were able to see her from the garden and i got her to drink from there she is also deaf . I was allowed in when they thought it was end of life , she picked up again and was in the day room and I heard her laughing ! I managed to get a package of care to possibly take her home , but beginning to realise i would have no life and my family would also get stressed with me stressed ! After 3 months of no sleep and crying all the time , I am beginning to adjust and find myself thinking of things I can do to support her in the nursing home. I sense that restrictions will ease and proper visits may hopefully resume. I have a lot of guilt about not going into lockdown with her in her flat , but I know I would have gone mad , and she still might have fallen and broken her hip . Its not ideal but knowing at night she has care is a relief and I think I am starting to feel better , it comes in waves like grief, but yes it is getting easier.
We will come out the other side !
 

Sarah1208

Registered User
Jun 22, 2020
90
Thank you so much for taking the time to reply. I can’t tell you how much it helps knowing people understand. I have amazing family and friends but they can’t understand why I’m not feeling relief that she is now being looked after in a care home rather than me doing everything. Take some time for yourself now they say. If only it were that easy. I am definitely going to be able to take some comfort from reading other posts, it’s like therapy...and considering my GP has told me there is a 5 month wait to speak to a counsellor about what I’m going through I really am grateful I found you all!!
 

Grannie G

Volunteer Moderator
Apr 3, 2006
71,827
Kent
Hello @Sarah1208

It might help to bear in mind today is the best your mother will ever be and even now needs more help and support than you are able to give her as a single carer. It`s all about meeting her needs and as her illness progresses even further, which it will do, she will need all the expertise of a team of carers to keep her as well as possible.

The settling in period is quite painful for both of you but it will pass. I`ve experienced it with my mother and my husband and read about it time and again on the forum.

Your common sense tells you, with the best will in the world, it has to be. It`s the sadness of dementia.
 

JGDMG

Registered User
May 5, 2020
47
So glad I stumbled on this website...3 weeks ago my 84 year old mum went into a care home. I had to drop her at the gate due to Covid restrictions. I have not seen her room or hugged her since that day. I am an only child and cared for her in her own home with the help of carers four times a day. As mums dementia got worse she was forgetting to drink and had several UTIs and was very frightened and unhappy. She left the tap on and flooded the house. She rang me 20 times a day and no matter how often I went to the house it was never enough. The carers kept calling me as she only wanted me. I work full time, have a husband and 2 grown up children. She had lived in the house 53 years and begged me not to make her leave.
I expected it to be hard, but I wasn’t prepared for how I am feeling. She cries when I ring her in the home and I have been allowed to visit in the garden this week from 2 metres but she is deaf so can’t hear me so she just cries. She doesn’t know why I have “put her in there” she thinks she was fine at home.
I’m in bits, it was consuming me before but this is just awful. When I call the home they tell me she is ok but she is troubled by some of the aggressive patients so sits in her room some days. However she is eating and drinking and sleeping well. And they are good people.
I just want to drive there and scoop her up and bring her home but I know it can’t happen. I just hope someone can tell me it might get slightly easier.
Hi Sarah
You poor thing. So many of us know what this feels like. Your situation is very similar to mine. I must admit though I did resent the time and effort that caring took. I wished I didn't have to do it, but I did it and tried to do it well with a good heart. So I had expected some relief and time for me, when she went in. You say you weren't prepared for how you are feeling. That's me! I have been in shock to be honest about how it feels. I've been reading and found out that this is very common. It is grief and a big loss. But you don't get sympathy or understanding, and of course there's the uneasy feeling that you shouldn't have done it. I too have felt that I should just go and 'scoop her up' and bring her home, and if it wasn't for family reminding me, and telling me there is no option now, I would have. The most helpful thing I found was someone told me that with dementia unless there is a crisis of some kind, there never seems to be the right time to use residential care. Carers, often daughters, just carry on with it, and as the condition gets worse and worse they just carry on, because they see it every day. Stepping back, and looking at my mothers behaviour when she was at home, in the cold light of day helped me to realise just how extreme it was. At the time I just accepted it and made allowances. Dare I say, the covid restrictions may actually be helping a bit, because the break has to be made. If you could go in and hug her, you would end up scooping her up. This incredibly difficult situation might speed up the time it takes for her to settle. You say that they are good people, so they will be doing their best for your mum, as you have, by recognising her care needs now are better met in her new home.
 

jellybaby999

Registered User
Jul 4, 2014
2
Oxted, Surrey
Hello, I’m new to this forum and have been caring for my Mum who lives with us for the past 3 years but in a separate annexe. She’s done really well seeing as she was diagnosed almost 10 years ago at 80. I’m just about to find a care home for her as I’m now struggling to cope. She does not accept new people at all well so it’s made it hard to have carers involved. She went into a care home for respite a couple of years ago and really became aggressive verbally and threw things around in her room and tried to barricade herself in her room etc refusing to eat and drink as well so I swore I would never do that again. This time though is going to be permanent and I’m wondering if there is some medication that may help my mum through the process. Does anybody have any experiences with that?
 

Helly68

Registered User
Mar 12, 2018
713
@jellybaby999 wlecome to DTP.
I suggest from what you say about your mother's previous experience of respite is, when you are thinking of moving her, speak to the GP, preferably the mental health team and the home manager about this behaviour.
Hopefully the GP and mental health team may be able to suggest medication or other treatment that may calm her and it may be good to start this before the move.
We were open with my mother's home that she has bipolar disorder (well managed) as well as mixed dementia. We discussed how this had manifested previously as we wanted to be sure they could cope. They have, very well. You could also ask them what kind of behaviour they would not be able to deal with. Though this seems like tempting fate, it can be better to ensure that the home has an EMI or dementia unit, experienced at coping with aggressive behaviour, rather than having to make another move if the home chosen does not have this facility.
As Mummy's dementia continues, her behaviour, especially around personal care, is still very ASBO. We have tried various strategies and drugs, with some success. The staff are very patient with her.

I hope you find something that helps for your Mum.
 

lemonbalm

Registered User
May 21, 2018
597
Hello, I’m new to this forum and have been caring for my Mum who lives with us for the past 3 years but in a separate annexe. She’s done really well seeing as she was diagnosed almost 10 years ago at 80. I’m just about to find a care home for her as I’m now struggling to cope. She does not accept new people at all well so it’s made it hard to have carers involved. She went into a care home for respite a couple of years ago and really became aggressive verbally and threw things around in her room and tried to barricade herself in her room etc refusing to eat and drink as well so I swore I would never do that again. This time though is going to be permanent and I’m wondering if there is some medication that may help my mum through the process. Does anybody have any experiences with that?
My mum's behaviour can be extremely challenging. I had to move her from the first care-home, as they were not able to cope, and she is now in a small specialist dementia care-home. They have worked hard in conjunction with the GP and community psychiatric nurse to tweak her medication and are able to deal with mum when she becomes agitated. As @Helly68 says, it might be best to look for a care home which can deal with difficult behaviors. Care-homes often use short term medication to help calm new residents if they are distressed. It can be a very stressful time, so keep posting for support and advice. I know that my mum is unusual (she always has been) and that many people do settle into care-homes pretty quickly, so don't assume that your mum won't!
 

lemonbalm

Registered User
May 21, 2018
597
Thank you so much for taking the time to reply. I can’t tell you how much it helps knowing people understand. I have amazing family and friends but they can’t understand why I’m not feeling relief that she is now being looked after in a care home rather than me doing everything. Take some time for yourself now they say. If only it were that easy. I am definitely going to be able to take some comfort from reading other posts, it’s like therapy...and considering my GP has told me there is a 5 month wait to speak to a counsellor about what I’m going through I really am grateful I found you all!!
People just don't "get it" if they haven't been through it. My mum's been in care for 3 years now, after my looking after her for 2, but she is still on my mind all the time. We don't stop caring!
 

Sarah1208

Registered User
Jun 22, 2020
90
Hi Sarah
You poor thing. So many of us know what this feels like. Your situation is very similar to mine. I must admit though I did resent the time and effort that caring took. I wished I didn't have to do it, but I did it and tried to do it well with a good heart. So I had expected some relief and time for me, when she went in. You say you weren't prepared for how you are feeling. That's me! I have been in shock to be honest about how it feels. I've been reading and found out that this is very common. It is grief and a big loss. But you don't get sympathy or understanding, and of course there's the uneasy feeling that you shouldn't have done it. I too have felt that I should just go and 'scoop her up' and bring her home, and if it wasn't for family reminding me, and telling me there is no option now, I would have. The most helpful thing I found was someone told me that with dementia unless there is a crisis of some kind, there never seems to be the right time to use residential care. Carers, often daughters, just carry on with it, and as the condition gets worse and worse they just carry on, because they see it every day. Stepping back, and looking at my mothers behaviour when she was at home, in the cold light of day helped me to realise just how extreme it was. At the time I just accepted it and made allowances. Dare I say, the covid restrictions may actually be helping a bit, because the break has to be made. If you could go in and hug her, you would end up scooping her up. This incredibly difficult situation might speed up the time it takes for her to settle. You say that they are good people, so they will be doing their best for your mum, as you have, by recognising her care needs now are better met in her new home.
Thanks so much for replying. I can’t tell you how helpful it is to hear what I’m feeling is normal. I had tried to prepare myself for this awful time but it hit me so hard. You really do have a point that Covid may have helped make the break. I would probably have been calling in every day had there been no visiting restrictions and that may not have helped. What’s nagging at me is that at the beginning of lockdown I had to make the choice between moving in with her and taking unpaid leave for 12 weeks or stopping going in the house to care for her and leaving it to the care agency. They said it had to be them or me. I am a key worker so the risk was just too high. Her lack of contact with me and other friends calling in definitely progressed her anxiety and dementia and I’m fighting with the feeling that I made the wrong call. My worry was if I moved in what would moving out look like or would I end up giving up work and my life to care for her full time. Not sure that will ever sit right with me.
 

JGDMG

Registered User
May 5, 2020
47
Thanks so much for replying. I can’t tell you how helpful it is to hear what I’m feeling is normal. I had tried to prepare myself for this awful time but it hit me so hard. You really do have a point that Covid may have helped make the break. I would probably have been calling in every day had there been no visiting restrictions and that may not have helped. What’s nagging at me is that at the beginning of lockdown I had to make the choice between moving in with her and taking unpaid leave for 12 weeks or stopping going in the house to care for her and leaving it to the care agency. They said it had to be them or me. I am a key worker so the risk was just too high. Her lack of contact with me and other friends calling in definitely progressed her anxiety and dementia and I’m fighting with the feeling that I made the wrong call. My worry was if I moved in what would moving out look like or would I end up giving up work and my life to care for her full time. Not sure that will ever sit right with me.
I know what you mean. I was in a similar situation at the beginning of Covid and in about roughly 2 hours I made a decision that would have a big, huge impact on everyone's lives. You did that as well. You faced the challenge and took on the responsibility of making the decision. Don't forget you did that! In making the decision you used all of your love for your mother and family, all of your knowledge of your mums situation, all of your awareness of the practical difficulties, and you made the decision and acted upon it. You even considered what the situation would be like when you moved out months later. The highest paid business men and women in the country seldom have to, in a flash, consider everything, and make a decision. The board would help them, different members would take responsibility for different bits. You did it all! What maybe doesn't sit well with you is that you included yourself in that huge decision. What would be best for you came into it, and I think this sometimes feels wrong to us. When I feel that way I remember that my mum, my mum as she always was, would definitely not have wanted me to turn into someone who had no regard for myself, and didn't include my own needs in any decisions. How would your mum, before dementia, have reacted to thought of you giving up your life, your work, your family, and your sanity probably. Best Wishes
 

Sarah1208

Registered User
Jun 22, 2020
90
I know what you mean. I was in a similar situation at the beginning of Covid and in about roughly 2 hours I made a decision that would have a big, huge impact on everyone's lives. You did that as well. You faced the challenge and took on the responsibility of making the decision. Don't forget you did that! In making the decision you used all of your love for your mother and family, all of your knowledge of your mums situation, all of your awareness of the practical difficulties, and you made the decision and acted upon it. You even considered what the situation would be like when you moved out months later. The highest paid business men and women in the country seldom have to, in a flash, consider everything, and make a decision. The board would help them, different members would take responsibility for different bits. You did it all! What maybe doesn't sit well with you is that you included yourself in that huge decision. What would be best for you came into it, and I think this sometimes feels wrong to us. When I feel that way I remember that my mum, my mum as she always was, would definitely not have wanted me to turn into someone who had no regard for myself, and didn't include my own needs in any decisions. How would your mum, before dementia, have reacted to thought of you giving up your life, your work, your family, and your sanity probably. Best Wishes
Thanks so much for that, you are quite right except for decades now I feel mum has resented my life, my husband, own house, 2 kids, friends, holiday ( even though we took her most times) ....she has always been on her own, never a partner, my father never around ( I was the result of an affair with a married man), very few friends, little money and an elderly mother to care for until she died. I think it’s those things that stopped me moving in with her, she chose her life. And now I hate myself for it. I’ve booked some counselling today through my employment benefits. I think I have a few demons to talk through.
 

canary

Registered User
Feb 25, 2014
13,434
South coast
My worry was if I moved in what would moving out look like or would I end up giving up work and my life to care for her full time.
I actually think this would be quite likely. Caring sort of creeps up on you and most carers slide into it by default. Also, if you are there, Social Services just assume that you will carry on.

Easy in, not so easy out.

Personally, I think you have made the right choice.
Counselling can be very helpful.
 

Graybiker

Registered User
Oct 3, 2017
217
County Durham
Not during covid, but, when mam first went in the home, she spent most of the time in her room. But the staff were very persistent at encouraging her out & within a few months she said to me that she had never had so many friends & was joining in enthusiastically with everything. Much happier than when at home.

Hang in there, there is hope & when we saw mam happy & enjoying life again the guilt receded.

Take care
X
 

Sarah1208

Registered User
Jun 22, 2020
90
Not during covid, but, when mam first went in the home, she spent most of the time in her room. But the staff were very persistent at encouraging her out & within a few months she said to me that she had never had so many friends & was joining in enthusiastically with everything. Much happier than when at home.

Hang in there, there is hope & when we saw mam happy & enjoying life again the guilt receded.

Take care
X
Thanks so much for that. That’s exactly what I am hoping for and the staff seem to be doing just that. It great that she is eating and drinking etc but I also want her to have a little bit of happiness too.
 

JGDMG

Registered User
May 5, 2020
47
Thanks so much for that, you are quite right except for decades now I feel mum has resented my life, my husband, own house, 2 kids, friends, holiday ( even though we took her most times) ....she has always been on her own, never a partner, my father never around ( I was the result of an affair with a married man), very few friends, little money and an elderly mother to care for until she died. I think it’s those things that stopped me moving in with her, she chose her life. And now I hate myself for it. I’ve booked some counselling today through my employment benefits. I think I have a few demons to talk through.
I hope you find the counselling helpful. Best wishes
 

canary

Registered User
Feb 25, 2014
13,434
South coast
I also want her to have a little bit of happiness too.
Its still early days @Sarah1208 - it takes time for them to settle, often a few months. Also, you dont know what she is like when you are not there. Seeing or hearing a relative (especially the main carer) will often trigger the "want to go home" loop when often they are not like that the rest of the time. If you were able to visit normally I would suggest that you see what she is like when she doesnt realise that you are there. Many people on the forum (myself included) have found that they are laughing and chatting before they see their visitor, but as soon as they see them everything changes. Then, two minutes after their visitor has gone, they are back to laughing and chatting again!!!
 

Sarah1208

Registered User
Jun 22, 2020
90
Its still early days @Sarah1208 - it takes time for them to settle, often a few months. Also, you dont know what she is like when you are not there. Seeing or hearing a relative (especially the main carer) will often trigger the "want to go home" loop when often they are not like that the rest of the time. If you were able to visit normally I would suggest that you see what she is like when she doesnt realise that you are there. Many people on the forum (myself included) have found that they are laughing and chatting before they see their visitor, but as soon as they see them everything changes. Then, two minutes after their visitor has gone, they are back to laughing and chatting again!!!
Thank you for taking the time to reply. I am sure you are right. As the carer is taking her back in from the garden I can already hear her having a bit of banter with her....but I am still the bad guy who put her in there. And it really hurts!! When we can visit properly inside and take her out for walks I’m sure it will be easier. Take care.
 

Forum statistics

Threads
116,167
Messages
1,699,040
Members
66,986
Latest member
hjc1972