Yesterday my mum went into a care home.......

[TrustDonna]

She’s been in hospital for 2 weeks after falling down the stairs. This was the first time she’s had to go to hospital because of her/as a result of her Alzheimer’s and on day 2 in there the doctors asked what we were doing to get her home?
Apparently, it’s not the done thing that after the very first hospitalisation the family don’t take their loved one home..............

We/I have cared for my mum non stop for the last 7 years, since I took her to the doctors because I saw something wrong, everyone else in the family told me she was fine. The last 3 years I’ve worked from home, only 2 mins from my mum and dad and able to jump at every call for help which resulted in me seeing them at least once a day ?
3 years ago my 2 brothers both realised how bad mum was, 1 stepped up to join me in caring, 1 stepped back and denied it was real. Together we have worked tirelessly to keep her safe, going from aids around the house to remind her to do things at the start, to dressing, washing, changing pads, feeding, persuading, conning her, tricking her, talking nonsense with her because it makes her smile and feel safe, replying to her questions about how my parents are when she doesn’t know who I am, listening to her tell strangers from social services that her friends are looking after her because her family are busy. Fitting child locks to every cupboard and draw after finding her trying to eat cleaning tablets thinking they are sweets, having to keep the doors locked all the time because there’s only so many times a day you can call your brother out of work because mums gone missing again, putting cctv up at the doors after chasing around the estate for hours after she’d wander off, adding one to the living room so we could see how bad her sleep cycle was that night and watching her go from making drinks and food for herself and putting the tv on, to coming down undressed, not knowing to turn the light on so she’d sit in the dark, in silence because the tv is no longer important. Being up all night and only having the can of drink left out for her by my dad, to not really knowing how to open it. Then watching back to see her wondering around the house, opening doors trying to find something familiar that she could get her bearing with, to waking constantly through the night to check the cameras to ensure she’s safe and ok.
Pushing my own mental health problems aside and just popping more pills to try and function like a normal person so that I can look after my mum because she is the most important person in my life - my husband understands my priority.

.............so when the doctors and physio suggested that it's not the normal thing to send someone to a nursing home after the first visit to the hospital (because they may believe we just can’t be bothered to look after her) and us telling them that we can no longer keep her safe at home and she needs professional care. To her spending 2 weeks in hospital to be assessed and suddenly they are telling us they have a place in a specialist dementia care home 30 mins from where we live, because they’ve twigged that she is the most important person in our lives and we’ve come to the end of our ability to care for her, telling us that it’s very unusual to see a person so advanced still being cared for at home.

so yesterday I packed my mums clothes into shopping bags, took nic nacs from her bedroom, photos from the walls of her home for the last 43 years and delivered them to the nursing home to be taken off me at the door. Because of the world we now live in I have no idea what her new bedroom looks like, we’ve not set foot in the home to see what it’s like, how the staff interact with the users, I was unable to set up her room like home in the hope she would feel recognition in her belongings. But worse is the fact that I’m unable to see her, one member only of the family can visit her, once a week, for 15 minutes in the garden and we’ve agreed that my dad should be that person.
I feel so utterly heartbroken it’s like she has died. I cried all the way home, cried myself to sleep on the sofa, cried myself to sleep once I took myself upstairs, woke up and started crying this morning. This pain is unbearable and we’ve caused it, if we’d just planned a bit more we could have looked after her a bit longer at home I’m sure! But what am I meant to do with myself now? My whole routine is looking after my beautiful mum and now she’s not there ??

 

[Izzy]

Oh @TrustDonna what a poignant post. Your love for your mum shines through the post and you have clearly given her the best care possible over the years.

I’m glad you’ve decided to share here and I hope that has brought a little comfort. Wishing you strength,

 

[canary]

Hello @TrustDonna and welcome to DTP

Read back what you have written

suddenly they are telling us they have a place in a specialist dementia care home 30 mins from where we live, because they’ve twigged that she is the most important person in our lives and we’ve come to the end of our ability to care for her, telling us that it’s very unusual to see a person so advanced still being cared for at home.

Whe someone moves into a care home it is a huge milestone the is impossible to ignore, shouting out exactly how much she has deteriorated. In the face of this overwhelming emotion it is easy to think that if only you had done this, or planned better for that, then it wouldnt have happened. But the truth is that dementia is not fixable. We are constantly trying to rewind the years to get them to be like they used to be (or at least not to deteriorate further), but its like holding back the tide - whatever you do the waves will be lapping round your ankles. Its the same with dementia - you cant stop it, you cant fix it and eventually it will break through and there is nothing you can do to prevent it.

Read that bit again

it’s very unusual to see a person so advanced still being cared for at home.

You have done well, very well indeed, but its now time for her to be looked after 24/7 by a whole team of people working in shifts. I know its hard at the moment, with the restrictions due to covid, but they wont last forever.
My mum thrived in her care home, she was no longer anxious because she didnt know what she was meant to be doing, she was no longer afraid of being on her own (because she never was) and she benefited from regular meals and medications. I became her daughter again and stopped pulling my hair out with worry.

It will take you a while to adjust too. Deep down you know that she will be better there, but it takes a while for your heart to agree. You are grieving now, the size of your mums loss to dementia is plain now. It is indeed like she has died, but it will get better.

 

[MaNaAk]

Dear Donna,

You have done all you could and you have done your parents proud. You and your brothers are going to have to look out for your dad now and remember we all know what you're going through.

Also once lockdown eases you will see your mum in the home.

MaNaAk

 

[Hazara8]

She’s been in hospital for 2 weeks after falling down the stairs. This was the first time she’s had to go to hospital because of her/as a result of her Alzheimer’s and on day 2 in there the doctors asked what we were doing to get her home?
Apparently, it’s not the done thing that after the very first hospitalisation the family don’t take their loved one home..............

We/I have cared for my mum non stop for the last 7 years, since I took her to the doctors because I saw something wrong, everyone else in the family told me she was fine. The last 3 years I’ve worked from home, only 2 mins from my mum and dad and able to jump at every call for help which resulted in me seeing them at least once a day ?
3 years ago my 2 brothers both realised how bad mum was, 1 stepped up to join me in caring, 1 stepped back and denied it was real. Together we have worked tirelessly to keep her safe, going from aids around the house to remind her to do things at the start, to dressing, washing, changing pads, feeding, persuading, conning her, tricking her, talking nonsense with her because it makes her smile and feel safe, replying to her questions about how my parents are when she doesn’t know who I am, listening to her tell strangers from social services that her friends are looking after her because her family are busy. Fitting child locks to every cupboard and draw after finding her trying to eat cleaning tablets thinking they are sweets, having to keep the doors locked all the time because there’s only so many times a day you can call your brother out of work because mums gone missing again, putting cctv up at the doors after chasing around the estate for hours after she’d wander off, adding one to the living room so we could see how bad her sleep cycle was that night and watching her go from making drinks and food for herself and putting the tv on, to coming down undressed, not knowing to turn the light on so she’d sit in the dark, in silence because the tv is no longer important. Being up all night and only having the can of drink left out for her by my dad, to not really knowing how to open it. Then watching back to see her wondering around the house, opening doors trying to find something familiar that she could get her bearing with, to waking constantly through the night to check the cameras to ensure she’s safe and ok.
Pushing my own mental health problems aside and just popping more pills to try and function like a normal person so that I can look after my mum because she is the most important person in my life - my husband understands my priority.

.............so when the doctors and physio suggested that it's not the normal thing to send someone to a nursing home after the first visit to the hospital (because they may believe we just can’t be bothered to look after her) and us telling them that we can no longer keep her safe at home and she needs professional care. To her spending 2 weeks in hospital to be assessed and suddenly they are telling us they have a place in a specialist dementia care home 30 mins from where we live, because they’ve twigged that she is the most important person in our lives and we’ve come to the end of our ability to care for her, telling us that it’s very unusual to see a person so advanced still being cared for at home.

so yesterday I packed my mums clothes into shopping bags, took nic nacs from her bedroom, photos from the walls of her home for the last 43 years and delivered them to the nursing home to be taken off me at the door. Because of the world we now live in I have no idea what her new bedroom looks like, we’ve not set foot in the home to see what it’s like, how the staff interact with the users, I was unable to set up her room like home in the hope she would feel recognition in her belongings. But worse is the fact that I’m unable to see her, one member only of the family can visit her, once a week, for 15 minutes in the garden and we’ve agreed that my dad should be that person.
I feel so utterly heartbroken it’s like she has died. I cried all the way home, cried myself to sleep on the sofa, cried myself to sleep once I took myself upstairs, woke up and started crying this morning. This pain is unbearable and we’ve caused it, if we’d just planned a bit more we could have looked after her a bit longer at home I’m sure! But what am I meant to do with myself now? My whole routine is looking after my beautiful mum and now she’s not there ??

That feeling of abandonment is understood completely. And the physical transition to a Home, a strange unfamiliar place adds to that sense of having somehow failed and thus a raw inner "guilt" eats at the heart.

It is clear that you have devoted yourself to the welfare of your mother beyond all reason and because dementia makes the rules, you have no choice other than a frankly desperate and potentially self destructive scenario which aids and abets no one. Unfortunately l know that to be true. The Covid-19 has most certainly added cruelly to all of this. I have profound sympathy for all those who are subject to the current restrictions because we all know that touch and the instinctive embrace is a imperative with dementia.

However hard this seems ( and this person can testify to the sheer depths of despair and heartbreak which can be felt) you acknowledge the " best interests" of your mother in respect of the transition. Yes, one always feels that one can do more, can carry on, can cope etc., But it is a fantasy. In a good Home which has properly trained staff who truly understand the nature of dementia and who prioritise the " person " over and beyond just ' care', I.e. termed "person centred " -- then you should discover that this has been a prudent and wise move and that utter initial despair and the shedding of tears, abates.

Sometimes it can help to treat each day as it comes and not dwell on " ifs and buts". Not easy. But a mind filled with sorrow can distort reality, when in fact the reality is devoid of it.

 

[Jaded'n'faded]

I agree with MaNaAk - it's time to look after your dad now. Everything you are feeling, he will be feeling too and probably more. If you support him you're doing everything you can.

 

[TrustDonna]

Thank you all for your kind words of understanding ? I don’t want to talk to my family about how desperate I feel because they are looking to me as the oldest for strength and guidance.
I know we’ve done the best thing for mum in the long term and all these feelings are about me and how I’m going to cope going forward, the fact that I’m going to have to carry on without my mum by my side is breaking me ?
I’d convinced myself that I’d said goodbye to her a long time ago so that I could care for her without getting upset, so I really wasn’t prepared for this outcry of emotions. I really did think I was in control.
Thank you again for your support xx
Donna

 

[Firecatcher]

I think you and your brother have done an absolutely amazing job to care for your Mum for this length of time and I’m absolutely full of admiration for people who make massive sacrifices and no doubt lose healthy years of their own lives in doing so. I’m horrified at the pressure families are out under to manage things and think this is fundamentally wrong. I hope your Mum settles soon and the home allow you to visit.