Struggling to deal with mum going to care home.

[Soulie]

Hi everyone, this is the first time I’ve been here. Firstly, I want to say I feel such empathy for everyone of you here.
I’ve been my mums full time carer for several years. I’ve watched as she’s slipped away from me, it’s like a constant cycle of bereavement. My sister would come and take mum out for a few hours 2-3 times a week and more recently she’s helped a bit more.
In the past few months she’s gone down hill swiftly, the dysphasia has become much worse, she becomes very restless and agitated at certain times, up and down at night, not knowing her surroundings etc.
Anyway, about 4 weeks ago it reached crisis point, I was exhausted because you can never have a proper sleep, it’s just dozing on and off, I was continually stressed and the only focus of my existence was looking after mum, one day her agitation was just so bad, she kept asking for my sister and trying to get out of the house and I couldn’t get her to calm down at all, and this sort of thing has been going on for several months at this point, this time it was so bad I had to get my sister to leave work early and come straight away, at this point mum’s crying as was I, usually I can stop myself but not this time.
A place came up in a care home much sooner than expected, we thought it would be about 4 months but they phoned and said they had a place available and she could move in on 30 December.
So she’s there now and I feel absolutely lost, I can’t bear the thought of her being frightened and wondering where me or my sister is. Just her being there and not with me that loves her and it doesn’t matter that logically I know it’s best for her. I thought I knew grief as I’ve had to face the person she was steadily disappear (it’s a strange thing, grieving for someone even as they stand in front of you) and I knew this would be hard but I had no idea it would be as bad as this. My sister and brother have gone in to see her every day and at the moment I can’t do it, the thought of going there is horrifying to me, thank god she’s not asking for me, she’s just been asking my brother and sister if I’m okay and they’ve said I’m fine and she’s happy with that.
My brother and sister don’t understand why I’m in such a state, I know it’s hard for them but they didn’t care for her 24/7 to the exclusion of everything else, they have families of their own. I’m just here now trying to remember the point of my life before mum.
I feel surrounded by pain and I can’t control it, I wish I could control it but I can’t, every time I get a grip of myself another wave of it will come over me. I know they are thinking I need to get a grip and if they can deal with it so should I but they aren’t feeling all the emotions that you have having cared for a loved one and finally having to let them go. My brother told me to “get my **** together” yesterday and when I tried to explain why I was in this state, I was told that I think everything’s about me. They just can’t imagine what it’s been like, they still had lives and their families while I did nothing but care for mum.
I could go on and on but this post is far too long already.
If anyone else is/has experienced similar I’d love to hear from you and obviously anyone else please do comment. I think I just want to know that my reaction is normal and that I’m not alone.

 

[Soulie]

Hi I really really feel for you this is my first time on here and we are in a very similar position just that my dad had carers going in and now they are unable to cope with the agression that comes out of the blue. Despite having carers our family have visited daily and we have tried and tried to keep dad at home but the care is now breaking down so there is only 1 choice which we have not wanted. It’s massive and we had similar issues when mum sadly went into care. At the end of the day you need to look after you I can’t believe I’m saying this because as a family we are all in bits. Take care and try not to feel guilty it’s easier said than done. You have to do what is best at the time.

 

[SofaSoGood]

Hi everyone, this is the first time I’ve been here. Firstly, I want to say I feel such empathy for everyone of you here.
I’ve been my mums full time carer for several years. I’ve watched as she’s slipped away from me, it’s like a constant cycle of bereavement. My sister would come and take mum out for a few hours 2-3 times a week and more recently she’s helped a bit more.
In the past few months she’s gone down hill swiftly, the dysphasia has become much worse, she becomes very restless and agitated at certain times, up and down at night, not knowing her surroundings etc.
Anyway, about 4 weeks ago it reached crisis point, I was exhausted because you can never have a proper sleep, it’s just dozing on and off, I was continually stressed and the only focus of my existence was looking after mum, one day her agitation was just so bad, she kept asking for my sister and trying to get out of the house and I couldn’t get her to calm down at all, and this sort of thing has been going on for several months at this point, this time it was so bad I had to get my sister to leave work early and come straight away, at this point mum’s crying as was I, usually I can stop myself but not this time.
A place came up in a care home much sooner than expected, we thought it would be about 4 months but they phoned and said they had a place available and she could move in on 30 December.
So she’s there now and I feel absolutely lost, I can’t bear the thought of her being frightened and wondering where me or my sister is. Just her being there and not with me that loves her and it doesn’t matter that logically I know it’s best for her. I thought I knew grief as I’ve had to face the person she was steadily disappear (it’s a strange thing, grieving for someone even as they stand in front of you) and I knew this would be hard but I had no idea it would be as bad as this. My sister and brother have gone in to see her every day and at the moment I can’t do it, the thought of going there is horrifying to me, thank god she’s not asking for me, she’s just been asking my brother and sister if I’m okay and they’ve said I’m fine and she’s happy with that.
My brother and sister don’t understand why I’m in such a state, I know it’s hard for them but they didn’t care for her 24/7 to the exclusion of everything else, they have families of their own. I’m just here now trying to remember the point of my life before mum.
I feel surrounded by pain and I can’t control it, I wish I could control it but I can’t, every time I get a grip of myself another wave of it will come over me. I know they are thinking I need to get a grip and if they can deal with it so should I but they aren’t feeling all the emotions that you have having cared for a loved one and finally having to let them go. My brother told me to “get my **** together” yesterday and when I tried to explain why I was in this state, I was told that I think everything’s about me. They just can’t imagine what it’s been like, they still had lives and their families while I did nothing but care for mum.
I could go on and on but this post is far too long already.
If anyone else is/has experienced similar I’d love to hear from you and obviously anyone else please do comment. I think I just want to know that my reaction is normal and that I’m not alone.

 

[SofaSoGood]

Believe me you aren’t alone. Far from it
I’ve been struggling with my Alzheimers father for a couple of years, or a bit more, plus my mother. She’s had 2 strokes and is physically incapable plus very very down because of Dad’s decline. They are both so miserable and negative, so unhappy and needy
I see my own life (& health) slipping away from me, and worry that by the time I’ve completed my “responsibilities” for my parents I will be in a bad state myself. I had hoped in my early 60s to have an interesting, relaxed and enjoyable life. Instead I’m stuck indoors in my parents’ house meeting their endlessly increasing needs with almost no respite or life of my own. I never planned or expected this, and yes I know many people are much worse off than I am ... but how have I ended up like this? What if I’d said 3 or 4 years ago that they’re be better off somewhere residential? I now feel that their lives would have been a bit worse but mine would have been HUGELY better. Why did I ever sign on for this?
But then I’m probably a horrible, selfish person

 

[Hil76]

Believe me you aren’t alone. Far from it
I’ve been struggling with my Alzheimers father for a couple of years, or a bit more, plus my mother. She’s had 2 strokes and is physically incapable plus very very down because of Dad’s decline. They are both so miserable and negative, so unhappy and needy
I see my own life (& health) slipping away from me, and worry that by the time I’ve completed my “responsibilities” for my parents I will be in a bad state myself. I had hoped in my early 60s to have an interesting, relaxed and enjoyable life. Instead I’m stuck indoors in my parents’ house meeting their endlessly increasing needs with almost no respite or life of my own. I never planned or expected this, and yes I know many people are much worse off than I am ... but how have I ended up like this? What if I’d said 3 or 4 years ago that they’re be better off somewhere residential? I now feel that their lives would have been a bit worse but mine would have been HUGELY better. Why did I ever sign on for this?
But then I’m probably a horrible, selfish person

@SofaSoGood, the very last thing you are is a horrible, selfish person, please don’t think that of yourself, what you are going through is incredibly difficult and you alone as both f/t carer to mum and dad are the only one apart from the rest of us that have done the same, are the alone one in your family that understands, every feeling you have is valid, acceptable and entirely normal, everyone going through the same will agree with me on this. It wasn’t my plan to give up years of my life to this or to be so devastated by it, your emotions are on a rollercoaster and will change from hour to hour, sometimes minute to minute. You are an incredible person to do this, never think otherwise. Going through this has taken strength I never knew I possessed, the same for all of us. You deserve a medal. I can’t stress enough that you most definitely are not selfish or horrible, you are quite clearly the complete opposite. Best wishes, feel free to PM me if you ever feel you wish to talk privately, I will always reply as soon as I can xx

 

[Hil76]

Hi I really really feel for you this is my first time on here and we are in a very similar position just that my dad had carers going in and now they are unable to cope with the agression that comes out of the blue. Despite having carers our family have visited daily and we have tried and tried to keep dad at home but the care is now breaking down so there is only 1 choice which we have not wanted. It’s massive and we had similar issues when mum sadly went into care. At the end of the day you need to look after you I can’t believe I’m saying this because as a family we are all in bits. Take care and try not to feel guilty it’s easier said than done. You have to do what is best at the time.

@Soulie Thank you, I’m grateful for your understanding, it helps more than you know. I’m so sorry for what you are having to go through xx

 

[Dimpsy]

Hello @SofaSoGood, you are NOT a horrible, selfish person, you ARE loving and sensitive and human, as much affected by the remorselessness of dementia as the PWD that you care for.
There are thousands of people like us, unnamed, unimportant, doing the best we can during the worst of times, providing comfort and belonging to the people we care for.
Outpouring your misery here can help, we all share your hopelessness and helplessness in the ongoing march of dementia, you are not alone.
xx

 

[Splashing About]

I see my own life (& health) slipping away from me, and worry that by the time I’ve completed my “responsibilities” for my parents I will be in a bad state myself. I had hoped in my early 60s to have an interesting, relaxed and enjoyable life. Instead I’m stuck indoors in my parents’ house meeting their endlessly increasing needs with almost no respite or life of my own. I never planned or expected this, and yes I know many people are much worse off than I am ... but how have I ended up like this? What if I’d said 3 or 4 years ago that they’re be better off somewhere residential? I now feel that their lives would have been a bit worse but mine would have been HUGELY better. Why did I ever sign on for this?
But then I’m probably a horrible, selfish person

NO you are not! You’ve given them a lot so far, sacrificed your life and are just expressing human needs

 

[Teddybear25]

Hi and welcome, i’ve only posted on hear once before so I’m a Newby too!
However I sympathise with you so very very much . I have been looking after my elderly mum (92yrs) for 10years when she was diagnosed with Alzheimer’s. She has lived with myself and my husband for the last 7 years. For the last 2 years things have become very difficult, with the last 9 months been virtually impossible, I have had minimal help from the gp’s but enormous help from the C P N s they have been my lifeline,however they are now out of ideas and medication to control mams very erratic behaviour and we are in the process of getting a place in a home. My emotions are on a roller coaster, like you my brother has instigated this along with my daughter as they are concerned for my mental wellbeing. When Mam is angry and sometimes hits out and “ won’t have me anywhere near her” I feel I can’t cope then in a couple of hours she’s hanging onto me crying and saying please never leave me and I feel so sorry for her I don’t feel I can go through with this. Mum I feel sometimes still has those lucid moments when I feel she’s aware of what the intention is. I’m an emotional wreck!!!!! I know deep down I can’t carry on with the sleep deprivation and the sheer physical effort of dealing with her through the night on my own as her mobility is now seriously affected (apart from when “paddy power” propels her) so please keep posting as I need to confirm to myself that I am doing the right thing and it will be better for mam in the long run. I feel so very anxious and guilty.!!!!

Hi @Wooden top, HIL76, Mitch60 & everyone else going through this- I sympathise with you all so much. It is such a hard time, caring for a parent and seeing them fall apart in front of you. I totally understand the sleep deprivation, we have a bed sensor for Mum and she often tries to get up 5 or 6 times a night but has no mobility & high risk of falls. It is difficult helping her to mobilise but try my best. It is absolutely exhausting, and then you have to function the next day as a carer after very little sleep. Having to say the same things over and over again is sending me a bit loopy too!! You feel so guilty when you get impatient with them too. This forum does help though to know others are experiencing the same thing. Such a feeling of dread at putting a parent in a care home and knowing life will never be the same

 

[Wooden top]

Hi @Wooden top, HIL76, Mitch60 & everyone else going through this- I sympathise with you all so much. It is such a hard time, caring for a parent and seeing them fall apart in front of you. I totally understand the sleep deprivation, we have a bed sensor for Mum and she often tries to get up 5 or 6 times a night but has no mobility & high risk of falls. It is difficult helping her to mobilise but try my best. It is absolutely exhausting, and then you have to function the next day as a carer after very little sleep. Having to say the same things over and over again is sending me a bit loopy too!! You feel so guilty when you get impatient with them too. This forum does help though to know others are experiencing the same thing. Such a feeling of dread at putting a parent in a care home and knowing life will never be the same

Hello everyone, thank you all so much for your support. It’s comforting in a very strange way that we’re all treading the same mountain!! I’m presently watching mum trying to eat her tea of blended casserole , she’s pushing it around the dish ,taking a spoon with nothing on it to her mouth and licking it ,if I try to help she takes a spoonful and drops it on the floor / table ,in her drink ,but refuses very angrily to allow me to help. Now torn up paper is added!!!! I’ve now removed this and she’s now angry as I haven’t given her chance to eat it. Sorry everyone, I know this is probably a bit graphic but I’m all out of ideas. Distraction is no longer possible. My patience I’ve managed to maintain all day is waning.
Thanks for listening.

 

[Wifenotcarer]

I think the language that is used i.e. 'putting him in a care home' has a lot to answer for. It is so reminiscent of having a beloved pet 'put down' or of the authorities putting someone in an asylum or the Poor House, like a punishment. I prefer to couch it in terms of ' finding a lovely care home nearby, where OH can be properly cared for and I and the family can visit as often as we want to.'

Perhaps this is because I suffered acute carer breakdown last January and had to fight tooth and nail to secure a placement for OH in the home of my (and his) choice. The struggle continued until the end of July, by which time I was on my knees. The home is within walking distance of our house, so I can easily visit, staying for a short while if he is grumpy or sleepy or all morning, joining in with the activities, when he is in a good mood, which is the norm. We were even able to bring him 'home' for a few hours on Christmas Day, When he started to yawn he was perfectly OK about going back to his room in the Care Home for a sleep.

I have truly become "Wife not Carer''. OH is much less anxious, angry and grumpy than he was at home. I usually get a hug and kiss when I visit. When I returned him after a visit to the farm shop for coffee and cake, he told the Carers that we "had been on a date". Coming up for 6 months now and I can't say I am happy, but I am content that I did the right thing for both of us and therefore feel no guilt.

 

[Peace lily]

Hi everyone, this is the first time I’ve been here. Firstly, I want to say I feel such empathy for everyone of you here.
I’ve been my mums full time carer for several years. I’ve watched as she’s slipped away from me, it’s like a constant cycle of bereavement. My sister would come and take mum out for a few hours 2-3 times a week and more recently she’s helped a bit more.
In the past few months she’s gone down hill swiftly, the dysphasia has become much worse, she becomes very restless and agitated at certain times, up and down at night, not knowing her surroundings etc.
Anyway, about 4 weeks ago it reached crisis point, I was exhausted because you can never have a proper sleep, it’s just dozing on and off, I was continually stressed and the only focus of my existence was looking after mum, one day her agitation was just so bad, she kept asking for my sister and trying to get out of the house and I couldn’t get her to calm down at all, and this sort of thing has been going on for several months at this point, this time it was so bad I had to get my sister to leave work early and come straight away, at this point mum’s crying as was I, usually I can stop myself but not this time.
A place came up in a care home much sooner than expected, we thought it would be about 4 months but they phoned and said they had a place available and she could move in on 30 December.
So she’s there now and I feel absolutely lost, I can’t bear the thought of her being frightened and wondering where me or my sister is. Just her being there and not with me that loves her and it doesn’t matter that logically I know it’s best for her. I thought I knew grief as I’ve had to face the person she was steadily disappear (it’s a strange thing, grieving for someone even as they stand in front of you) and I knew this would be hard but I had no idea it would be as bad as this. My sister and brother have gone in to see her every day and at the moment I can’t do it, the thought of going there is horrifying to me, thank god she’s not asking for me, she’s just been asking my brother and sister if I’m okay and they’ve said I’m fine and she’s happy with that.
My brother and sister don’t understand why I’m in such a state, I know it’s hard for them but they didn’t care for her 24/7 to the exclusion of everything else, they have families of their own. I’m just here now trying to remember the point of my life before mum.
I feel surrounded by pain and I can’t control it, I wish I could control it but I can’t, every time I get a grip of myself another wave of it will come over me. I know they are thinking I need to get a grip and if they can deal with it so should I but they aren’t feeling all the emotions that you have having cared for a loved one and finally having to let them go. My brother told me to “get my **** together” yesterday and when I tried to explain why I was in this state, I was told that I think everything’s about me. They just can’t imagine what it’s been like, they still had lives and their families while I did nothing but care for mum.
I could go on and on but this post is far too long already.
If anyone else is/has experienced similar I’d love to hear from you and obviously anyone else please do comment. I think I just want to know that my reaction is normal and that I’m not alone.

Hi there, I'm new to this forum and have only just read your post. Although my circumstances are different, there are many common threads that we share. I feel so much for you. It sounds like such a difficult situation. I posted this morning about a crisis that is happening regarding my dad at moment. I struggle to deal with that, never mind what you're going through. My brother has exactly the same attitude as your siblings. He seems to be able to live his life without anywhere or guilt. He says things like '**** hapens' and 'live your own life...don't feel guilty'. Easy said than done? What you are feeling is entirely normal. Don't beat yourself up or let others make you feel bad for being a kind and thoughtful person. If I were in your shoes (which I know I will and many of us in this forum will be), I know that I would feel exactly the same. Take good care of yourself. Hard I know.

 

[Mydarlingdaughter]

There are so many here who will understand what you are going through. What you describe when you think how your Mum must feel alone in the CH.
The feelings of guilt. My Mum got moved from a hospital ward to a CH and I did tell them that she would never agree to it. In fact I refused to be involved in their decisions because I had made my point and I had nothing further to add. However they made decisions based on Mums best interests and she did go to CH.
Over a year on and Mum is doing well, the dementia has not improved but she is physically healthier. Staff tell me that she is enjoying her food, they know her well and I do think they genuinely care about her. She has qualified people around 24/7 and now she is on constant supervision so never alone except when asleep in bed (a pressure mattress bed). Whatever she needs, they provide for her. In particular companionship.
I know for a fact Mum would not have lived had she not been admitted to the CH.