So devastatingly sad...how do I cope with Mum now?

[Jintyf]

Please can someone help me? I may ramble as I am so overwhelmed.
I have cared for my lovely Mum (84) for 5.5 years since my Dad died. She lived independently with me seeing her 5 days a week (and all weekend) and for many years we shared such good times together despite this awful illness. She started going to a fabulous day centre - latterly upped to 4 days per week where she loved to sing and dance. I took her out regularly to theatre and lunch. coffees etc.
Mum has Alzeheimers but is otherwise relatively fit.
In the last year however her Alzheimers took a real decline and she was wandering, hallucinating and had a number of visits to hospital with infections, accidents at home etc .
Most of all she seemed very scared to be left alone. Care package was upped to 3 visits per day but night time turned into day time and mum wasn't going to bed...just falling asleep in chair and calling me 3 sometimes 4 times in night. I work and have a family and was became so exhausted.
Over Christmas things got so much worse so I moved in with her as social services said they would try to find her a care place in the New Year if I could manage her over the holidays.
It got so bad on Saturday with the hallucinations I called NHS 245 and the doc gave antibiotics but said he expected this to be the illness rather than any underlying infection and coudl I hold on to Monday and call my GP. The weekend was awful...I love Mum so much and tried to keep her comfy (even took her into the bed with me to hold her). She kept asking is this my house, are you my daughter etc.
So GP (who is lovely) came yesterday mornign and she said mum needs 24 hour care now. She found a hospital place for Mum and we packed a bag.
Leaving her there was devastating for me. I feel so guilty. She doesn't want to be there and said she is going home so the doctor rang me and said they would need to section her for her own safety as she is nto safe at home. (Taking her in to my home is not an option and I dont think i could cope in any way with her behaviour much as I love her to bits. Hope that makes sense. I am going between guilt and relief that she is safe.
So I cvalled the hispital last night (they told me to clal at 7pm to see how she was settling\) but the didnt answer the phone from 7pm to 10pm I tried umpteen times.
Im going to visit today but not sure what I should say to her about being there. I told her yesterday she was going in so the docs could make sure her meds were right and they needed to do some tests. The fear on her face when I left her is haunting me. And I am so sad that she will never be back in her home of 60 years.
I need to pick up some things form her house today to take with me....so sad. I cant stop crying.
My husband says that I need to look after myself and that I am exhausted and I know that but what more can I do for Mum to help her in this stage and get her settled?
How can I make her happy again?

 

[Cat27]

You’ve done the right thing for your Mum. She’s safe & cared for which us important.
As for making her happy, that’s difficult as dementia is such a fluid disease.
I wish you strength.

 

[canary]

Hello @Jintyf and welcome to Talking Point.

It is not your fault, you have done nothing wrong, you could not have prevented these symptoms. It is the dementia.
Unfortunately your mum is at the stage when she no longer recognises her home (hence she was wandering) and needs someone to reassure her 24/7. This will take a whole team of people - you wont be able to do it by yourself.

I remember when my mum was at this stage - I think it was the worst time of her dementia. She wanted me to give up my job, leave my husband and move in with her - which I could not do. She too ended up in hospital and went from there to a dedicated dementia unit. I thought she would hate it as she always said she never wanted to go into a care home, but actually, after she settled, she thrived. She joined in the activities, made friends, became so much less anxious and became happy there (as much as the dementia would allow). Having a routine suited her and there was always someone around, day and night, to talk to, to reassure her and make her a cup of tea. Once she had settled (which took several weeks) I was able to take her out for lunch, to look round the shops or walks along the sea front. I still have good memories of her sitting on a bench on the prom, eating an ice-cream, watching the sea and laughing. She had 2 further good years in her unit before the inevitable decline and I will be forever grateful to her carers who looked after her right up until the end.

Im sorry for rambling, but what I am trying to say is that even though your mum wont be able to go home, that doesnt mean that your relationship is over. There will still be good times. You will get to know the carers, other residents and their families and I found they became like one big extended family. It may not be what you or your mum would have wanted, but it will be OK

 

[Slugsta]

Hi Jinty,

Poor you, you are utterly exhausted and that makes the heartbreak even harder to bear

You have done everything within your power to look after your mum yourself, but it sounds as if the time has come when the very best you can do for her is to let someone else take the 24/7 strain. That doesn't mean that you will no longer be her carer, just that you can also go back to being a daughter and. hopefully, be more able to enjoy the time you spend together.

Dementia is a vicious disease!

 

[duranie]

Hi, my mum has been in hospital for 2 weeks with a suspected infection. She has always lived alone with her dog and I saw her every day. For the last six months she has been getting more confused but still ok until this infection turned into delirium. She attacked doctors and nurses until they put her on some sort of anti physicotic. She is now medically fit but is seriously confused and we are waiting for her to be assessed. I don’t think she could go home but will have to wait and see. Any advice or experience would be great !

 

[Sandy7981]

My mum is 91 with dementia and still living at home alone. She has carers 4 times a day and I live opposite so am in and out of hers all day (I am here now)
Back in August she had a strange turn and I called paramedics - she was confused, mouth moving oddly? Couldn’t speak properly she was in hospital for a week and also was aggressive to nurses doctors etc and was suffering with delirium - she didn’t know where she was or her DOB. I even had a call from a doctor saying it’s unlikely she would come out of hospital - after 1 week she was back home! I am not sure how long she will remain at home as she is declining but for now we are managing - just take everyday as it comes unfortunately it’s all in the lap of the gods. Some days I don’t cope and can’t see mum staying at home another day - then she has a couple of good days and we carry on.

 

[Jintyf]

Thanks so much everyone for your help and advice.

I visited Mum yesterday and for the first hour she was upbeat, happy and telling me how nice everyone is. I was able to shower her and get her into clean clothes and put photos up so she has familiar things around her. I played her favourite music (she loves music and singing).
THEN after a while she said 'right let's go home now' and when I said she had to stay for a lttle while with the doctors and nurses she freaked out and became nasty and aggressive. Saying I had a cold heart and if I loved her I would not be doing this. If she wasn't coming with me she didn't want to see me I could just go now. The change was very sudden.
Thankfully I was able to stay calm (don't know how) and told her that I was sorry she felt that way but that she was safe and had to stay (she is sectioned) and that I love her very much and will see her tomorrow (today).
From what I can tell from other posts anger and aggression is quite common and it takes time to settle - sometimes weeks/months for the medical staff to sort out the ruight medication and dosage.
It's a huge adjustment for her (and I expect deep down she has some feeling of knowing what is happening to her and she is frightened beyond measure - after all its a strange environment and people) but to be honest for the first time in over 5 years I feel relieved that the pressure of having to cope and having to do 'the right thing for her' every day is gone.
The staff spoke to me and said Mums Alzheimers is pretty far advanced and that I have coped really really well and that they will look after her and I can visit as often as I want.
I am trying to see the aggression as the illness and not Mum. She is sick not nasty. Am trying to let go, let God. I can't control what is happening but I can try to control my responses. Thankfully I have a meditation practice which has helped me. cope with overwhelming emotions for many years.
Lets say what today brings - I am going to try as much as I can to respond kindly and not react to any behaviours.
I can just walk away and recentre. Before she went into care I couldn't do that as I was fully responsible. Now with the nursing staff we are sharing the load.
Wishing you peace with your decision knowing that she is safe and that in time experience from the others here tells that she will almost certainly settle.

Hello @Jintyf and welcome to Talking Point.

It is not your fault, you have done nothing wrong, you could not have prevented these symptoms. It is the dementia.
Unfortunately your mum is at the stage when she no longer recognises her home (hence she was wandering) and needs someone to reassure her 24/7. This will take a whole team of people - you wont be able to do it by yourself.

I remember when my mum was at this stage - I think it was the worst time of her dementia. She wanted me to give up my job, leave my husband and move in with her - which I could not do. She too ended up in hospital and went from there to a dedicated dementia unit. I thought she would hate it as she always said she never wanted to go into a care home, but actually, after she settled, she thrived. She joined in the activities, made friends, became so much less anxious and became happy there (as much as the dementia would allow). Having a routine suited her and there was always someone around, day and night, to talk to, to reassure her and make her a cup of tea. Once she had settled (which took several weeks) I was able to take her out for lunch, to look round the shops or walks along the sea front. I still have good memories of her sitting on a bench on the prom, eating an ice-cream, watching the sea and laughing. She had 2 further good years in her unit before the inevitable decline and I will be forever grateful to her carers who looked after her right up until the end.

Im sorry for rambling, but what I am trying to say is that even though your mum wont be able to go home, that doesnt mean that your relationship is over. There will still be good times. You will get to know the carers, other residents and their families and I found they became like one big extended family. It may not be what you or your mum would have wanted, but it will be OK

 

[Jintyf]

.

My mum is 91 with dementia and still living at home alone. She has carers 4 times a day and I live opposite so am in and out of hers all day (I am here now)
Back in August she had a strange turn and I called paramedics - she was confused, mouth moving oddly? Couldn’t speak properly she was in hospital for a week and also was aggressive to nurses doctors etc and was suffering with delirium - she didn’t know where she was or her DOB. I even had a call from a doctor saying it’s unlikely she would come out of hospital - after 1 week she was back home! I am not sure how long she will remain at home as she is declining but for now we are managing - just take everyday as it comes, unfortunately, it’s all in the lap of the gods. Some days I don’t cope and can’t see mum staying at home another day - then she has a couple of good days and we carry on.

Hi Sandy I really feel for you as I was Mums sole carer for 5.5 years (she was diagnosed 6 years ago) and her behaviour really deteriorated quite quickly.
Just a thought - have you asked the GP to get a CPN assessment for your Mum? Also perhaps start looking around at care homes to be prepared and know what the options are in your area?

 

[Jintyf]

Thanks so very much - your post really really helped me.

 

[Rosettastone57]

Thanks so much everyone for your help and advice.

I visited Mum yesterday and for the first hour she was upbeat, happy and telling me how nice everyone is. I was able to shower her and get her into clean clothes and put photos up so she has familiar things around her. I played her favourite music (she loves music and singing).
THEN after a while she said 'right let's go home now' and when I said she had to stay for a lttle while with the doctors and nurses she freaked out and became nasty and aggressive. Saying I had a cold heart and if I loved her I would not be doing this. If she wasn't coming with me she didn't want to see me I could just go now. The change was very sudden.
Thankfully I was able to stay calm (don't know how) and told her that I was sorry she felt that way but that she was safe and had to stay (she is sectioned) and that I love her very much and will see her tomorrow (today).
From what I can tell from other posts anger and aggression is quite common and it takes time to settle - sometimes weeks/months for the medical staff to sort out the ruight medication and dosage.
It's a huge adjustment for her (and I expect deep down she has some feeling of knowing what is happening to her and she is frightened beyond measure - after all its a strange environment and people) but to be honest for the first time in over 5 years I feel relieved that the pressure of having to cope and having to do 'the right thing for her' every day is gone.
The staff spoke to me and said Mums Alzheimers is pretty far advanced and that I have coped really really well and that they will look after her and I can visit as often as I want.
I am trying to see the aggression as the illness and not Mum. She is sick not nasty. Am trying to let go, let God. I can't control what is happening but I can try to control my responses. Thankfully I have a meditation practice which has helped me. cope with overwhelming emotions for many years.
Lets say what today brings - I am going to try as much as I can to respond kindly and not react to any behaviours.
I can just walk away and recentre. Before she went into care I couldn't do that as I was fully responsible. Now with the nursing staff we are sharing the load.
Wishing you peace with your decision knowing that she is safe and that in time experience from the others here tells that she will almost certainly settle.

You have done the right thing. My MIL was at home with carers until Aug when she fell ,went into hospital and then went into a care home . The tipping point for me was she no longer remembered where the toilet was in her own home. When in the care home she was always asking to go home. We just told her when she could walk a bit better she would go home. Needless to say she never did

 

[Francy]

Please can someone help me? I may ramble as I am so overwhelmed.
I have cared for my lovely Mum (84) for 5.5 years since my Dad died. She lived independently with me seeing her 5 days a week (and all weekend) and for many years we shared such good times together despite this awful illness. She started going to a fabulous day centre - latterly upped to 4 days per week where she loved to sing and dance. I took her out regularly to theatre and lunch. coffees etc.
Mum has Alzeheimers but is otherwise relatively fit.
In the last year however her Alzheimers took a real decline and she was wandering, hallucinating and had a number of visits to hospital with infections, accidents at home etc .
Most of all she seemed very scared to be left alone. Care package was upped to 3 visits per day but night time turned into day time and mum wasn't going to bed...just falling asleep in chair and calling me 3 sometimes 4 times in night. I work and have a family and was became so exhausted.
Over Christmas things got so much worse so I moved in with her as social services said they would try to find her a care place in the New Year if I could manage her over the holidays.
It got so bad on Saturday with the hallucinations I called NHS 245 and the doc gave antibiotics but said he expected this to be the illness rather than any underlying infection and coudl I hold on to Monday and call my GP. The weekend was awful...I love Mum so much and tried to keep her comfy (even took her into the bed with me to hold her). She kept asking is this my house, are you my daughter etc.
So GP (who is lovely) came yesterday mornign and she said mum needs 24 hour care now. She found a hospital place for Mum and we packed a bag.
Leaving her there was devastating for me. I feel so guilty. She doesn't want to be there and said she is going home so the doctor rang me and said they would need to section her for her own safety as she is nto safe at home. (Taking her in to my home is not an option and I dont think i could cope in any way with her behaviour much as I love her to bits. Hope that makes sense. I am going between guilt and relief that she is safe.
So I cvalled the hispital last night (they told me to clal at 7pm to see how she was settling\) but the didnt answer the phone from 7pm to 10pm I tried umpteen times.
Im going to visit today but not sure what I should say to her about being there. I told her yesterday she was going in so the docs could make sure her meds were right and they needed to do some tests. The fear on her face when I left her is haunting me. And I am so sad that she will never be back in her home of 60 years.
I need to pick up some things form her house today to take with me....so sad. I cant stop crying.
My husband says that I need to look after myself and that I am exhausted and I know that but what more can I do for Mum to help her in this stage and get her settled?
How can I make her happy again?

OMG, I really feel your pain. This has been the most difficult decision for you to make. I believe you have done the best possible thing for your lovely mum, there really was no choice, please be kind to yourself as this was a true act of love. XXXX Francy

 

[May30]

Please can someone help me? I may ramble as I am so overwhelmed.
I have cared for my lovely Mum (84) for 5.5 years since my Dad died. She lived independently with me seeing her 5 days a week (and all weekend) and for many years we shared such good times together despite this awful illness. She started going to a fabulous day centre - latterly upped to 4 days per week where she loved to sing and dance. I took her out regularly to theatre and lunch. coffees etc.
Mum has Alzeheimers but is otherwise relatively fit.
In the last year however her Alzheimers took a real decline and she was wandering, hallucinating and had a number of visits to hospital with infections, accidents at home etc .
Most of all she seemed very scared to be left alone. Care package was upped to 3 visits per day but night time turned into day time and mum wasn't going to bed...just falling asleep in chair and calling me 3 sometimes 4 times in night. I work and have a family and was became so exhausted.
Over Christmas things got so much worse so I moved in with her as social services said they would try to find her a care place in the New Year if I could manage her over the holidays.
It got so bad on Saturday with the hallucinations I called NHS 245 and the doc gave antibiotics but said he expected this to be the illness rather than any underlying infection and coudl I hold on to Monday and call my GP. The weekend was awful...I love Mum so much and tried to keep her comfy (even took her into the bed with me to hold her). She kept asking is this my house, are you my daughter etc.
So GP (who is lovely) came yesterday mornign and she said mum needs 24 hour care now. She found a hospital place for Mum and we packed a bag.
Leaving her there was devastating for me. I feel so guilty. She doesn't want to be there and said she is going home so the doctor rang me and said they would need to section her for her own safety as she is nto safe at home. (Taking her in to my home is not an option and I dont think i could cope in any way with her behaviour much as I love her to bits. Hope that makes sense. I am going between guilt and relief that she is safe.
So I cvalled the hispital last night (they told me to clal at 7pm to see how she was settling\) but the didnt answer the phone from 7pm to 10pm I tried umpteen times.
Im going to visit today but not sure what I should say to her about being there. I told her yesterday she was going in so the docs could make sure her meds were right and they needed to do some tests. The fear on her face when I left her is haunting me. And I am so sad that she will never be back in her home of 60 years.
I need to pick up some things form her house today to take with me....so sad. I cant stop crying.
My husband says that I need to look after myself and that I am exhausted and I know that but what more can I do for Mum to help her in this stage and get her settled?
How can I make her happy again?

I'm going through the same thing with my dad. My mum was looking after him at home with my support but he began refusing personal care and it ended up taking over my life and my mum couldn't cope anymore. He ended up in hospital with an infection and they're now looking for a care home placement for him. I've tried to spend every day at the hospital but feel so helpless because I can't do anything to make him better. He's incontinent and fights the nurses every time they try to change him. I'm trying to hold on to the nice things that I can do with him like puzzles and things but am coming to terms with the fact that I can't give him the care that he needs anymore. But it's an emotional roller-coaster and I cry a lot. It's really helped me to ring the Dementia UK or Alzheimers Society helplines to talk to people who understand and to offload. They have given me a lot of reassurance over the last few weeks x

 

[Jintyf]

OMG, I really feel your pain. This has been the most difficult decision for you to make. I believe you have done the best possible thing for your lovely mum, there really was no choice, please be kind to yourself as this was a true act of love. XXXX Francy

Thank you so much x

 

[Jintyf]

I'm going through the same thing with my dad. My mum was looking after him at home with my support but he began refusing personal care and it ended up taking over my life and my mum couldn't cope anymore. He ended up in hospital with an infection and they're now looking for a care home placement for him. I've tried to spend every day at the hospital but feel so helpless because I can't do anything to make him better. He's incontinent and fights the nurses every time they try to change him. I'm trying to hold on to the nice things that I can do with him like puzzles and things but am coming to terms with the fact that I can't give him the care that he needs anymore. But it's an emotional roller-coaster and I cry a lot. It's really helped me to ring the Dementia UK or Alzheimers Society helplines to talk to people who understand and to offload. They have given me a lot of reassurance over the last few weeks x

Hi May
Sounds like we are in a very similar position right now. It can feel overwhelming, can't it?
I'm trying so hard to keep thinking that all I did before was keeping Mum independent for longer than she would have been without me there and that now she is safe with professionals who can care for her. And its the same for you as I'm sure yoru Mum wouldn't have coped for as long without you there.
Reading experienced members saying that it takes time for them to settle helps too. This is a transitional stage for us all.
Last night Mum was given some meds to calm her and she slept right through and although she started the evening wandering, they were able to settle her easily. As far as I can tell, the hospital will be sorting out the right dosages for her to keep her less anxious but at the same time enjoying as much as she can of the life she has left. I certainly don't want her like a zombie!
Thinking of you and sending a huge hug.

 

[Jintyf]

You have done the right thing. My MIL was at home with carers until Aug when she fell ,went into hospital and then went into a care home . The tipping point for me was she no longer remembered where the toilet was in her own home. When in the care home she was always asking to go home. We just told her when she could walk a bit better she would go home. Needless to say she never did

Thank you.

 

[Portia100874]

Know exactly how you feel. My darling mum has been in a care home for 18 months. I feel so guilty but know she is in the right place and is safe.