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Should I let go?

Helly68

Registered User
Mar 12, 2018
775
0
I apologise for calling you by the wrong name, Helly68. I'm not as technologically proficient as I should be!!
No problem, it took me ages to work out how to tag people. It sounds as though, if your children can visit going forward, that might be a good first step.
 

blackmortimer

Registered User
Jan 2, 2021
92
0
When I started this thread I was in a conflicted state. Communication with my wife had been (and still is) difficult for all the familiar reasons. I wondered whether I should stand back be less proactive, let my children take more of the strain and turn my mind to other things. All of which I still feel.

However, I have come to realise, after reading responses on this and other threads, that there are probably two kinds of "letting go":-

1. Letting go the carer's function. Accepting that I could no longer do everything even if I were allowed and that the nursing home are looking after Margaret better than I ever could. And more so as her condition deteriorates. That kind of letting go I must accept.

2. Letting go the most important person in my life. i realise now how absolutely impossible that would be. Even after lockdown is lifted I don't want to go out and meet other people, join a club, find new interests - the sort of things that well-meaning people tend to say and one knows they really do mean it - but the very thought is a kind of betrayal. Margaret must be at the centre of everything but in a different way. I must let the carers care, not interfere, accept that they are the professionals, but I must be here with everything as she likes it just in case one day she rings me and recognises me. It almost certainly won't happen but the very thought can keep me centred.

Meanwhile, I realise how many of you out there are suffering the same day to day traumas as I did and worse. So if I can offer any support to anyone I will try and do that. It's the only way to keep Margaret alive and as she was in my heart. Sorry if I'm being uncomfortably sentimental but that's how I've been feeling this last day or two. Hope you'll forgive me.
 

Sarasa

Volunteer Host
Apr 13, 2018
2,794
0
@blackmortimer, I think what you have written is very wise. I think some people think that when your loved one moves into care that's it, you cease to love them or care about them. The whole phrase 'putting someone in a home' really grates on me, as it implies you are just washing your hands of them.
Instead you let others do the day to day care, but you are still there in whatever way you can be. It's all so difficult due to the covid regulations, but those should ease over the next few months. Before lock-down I spent some very happy times in mum's care home, getting involved in activities and getting to know the staff and other residents.
It is mum's home in the best sense of the word. Not the home she would have wanted, but the home she really needs.
I hope you and Margaret get to share some good times again, even if they are not what you would have envisaged a few years ago.
 

blackmortimer

Registered User
Jan 2, 2021
92
0
@blackmortimer, I think what you have written is very wise. I think some people think that when your loved one moves into care that's it, you cease to love them or care about them. The whole phrase 'putting someone in a home' really grates on me, as it implies you are just washing your hands of them.
Instead you let others do the day to day care, but you are still there in whatever way you can be. It's all so difficult due to the covid regulations, but those should ease over the next few months. Before lock-down I spent some very happy times in mum's care home, getting involved in activities and getting to know the staff and other residents.
It is mum's home in the best sense of the word. Not the home she would have wanted, but the home she really needs.
I hope you and Margaret get to share some good times again, even if they are not what you would have envisaged a few years ago.
Thanks for that @Sarasa . Just glad that someone understands!
 

marionq

Registered User
Apr 24, 2013
6,294
0
Scotland
We learn something every day on here. As has been said we are hoping that more visits to care homes will soon be possible and the dilemma will be who is to have that access. Shortly after my husband died from Alzheimer’s his sister had to go into a home and I had to step up to arrange her affairs. Despite having no legal rights I am constantly asked to be involved in decision making because no one else is willing to do so.

This brings me to the visiting dilemma. One niece and one second cousin are the only blood relatives who have visited in the last year and I would like that to continue. I will continue with paper work etc when asked - although I would rather not. I want to step away completely from visiting but again will do whatever she needs if asked. In normal times I would have been happy to call in occasionally but don’t want to commit to being a designated visitor. I can see that this may well be a common problem for families.
 

DennyD

Registered User
Dec 6, 2016
181
0
Porthcawl, South Wales
I must let the carers care, not interfere, accept that they are the professionals, but I must be here with everything as she likes it just in case one day she rings me and recognises me. It almost certainly won't happen but the very thought can keep me centred.
This I find the hardest. Especially more so during the COVID restrictions. I am grateful I am able to visit, but the PPE, mask, 2 meter distance etc, have I feel devastated the connection we had. He now turns to the carers for assistance, not me, I find this very difficult to deal with and 'to let go'. He has been vaccinated, I have had my first jab, why can I not hold his hand, sit close to talk to him, so he can hear my voice. 'Letting go' is hard enough, coming to terms with the decision to move our loved one into permanent care, having to deal with the emotions it brings. I know and understand the circumstances that COVID has brought, but it has been enforced letting go.
 

DennyD

Registered User
Dec 6, 2016
181
0
Porthcawl, South Wales
We learn something every day on here. As has been said we are hoping that more visits to care homes will soon be possible and the dilemma will be who is to have that access. Shortly after my husband died from Alzheimer’s his sister had to go into a home and I had to step up to arrange her affairs. Despite having no legal rights I am constantly asked to be involved in decision making because no one else is willing to do so.

This brings me to the visiting dilemma. One niece and one second cousin are the only blood relatives who have visited in the last year and I would like that to continue. I will continue with paper work etc when asked - although I would rather not. I want to step away completely from visiting but again will do whatever she needs if asked. In normal times I would have been happy to call in occasionally but don’t want to commit to being a designated visitor. I can see that this may well be a common problem for families.
A tough situation to find yourself in. It is feels like the connection is being stretched/prolonged whereas you probably have a need to be allowed to step back.
 

blackmortimer

Registered User
Jan 2, 2021
92
0
A tough situation to find yourself in. It is feels like the connection is being stretched/prolonged whereas you probably have a need to be allowed to step back.
I think you have to allow yourself to step back @DennyD . I found it incredibly difficult when Margaret first went into hospital. Fortunately she was quick;y transferred to an adult mental care unit within the campus of the hospital but operating independently. The staff there were amazing so caring patient and professional. At first when Covid first allowed it in I think July I tried to go at least 3 times a week, possibly more. Sometimes it was successful. sometimes not. And I still felt it was all down to me - if she was being difficult or didn't want to see anyone it must be my fault. Fortunately the Sister in charge of the unit took the time to talk to me about it. She half-persuaded me that none of this was my fault; if she didn't want to see me it was not me but the dementia. Still I had to keep on going, trying to pretend that it was down to me. But I did slowly learn that at a certain stage you have to leave it to the professionals. They will call you if necessary; they will keep you up to date. So you have to let go of the caring. It's no longer down to you. But you don't (probably can't) let go of the real person underneath the dementia. I need to hang on to that like grim death. I'm nor going to "move on" "reinvent myself" "find other interests" (all things that have been said to me by well-meaning people). I'm going to let the carers do the hands on stuff bur I still care and shall try to do that by carrying on as far as I can with life before it all happened and take comfort in that. And I think it may be starting to work - we'll have to see.

God bless.
 

DennyD

Registered User
Dec 6, 2016
181
0
Porthcawl, South Wales
I think you have to allow yourself to step back @DennyD . I found it incredibly difficult when Margaret first went into hospital. Fortunately she was quick;y transferred to an adult mental care unit within the campus of the hospital but operating independently. The staff there were amazing so caring patient and professional. At first when Covid first allowed it in I think July I tried to go at least 3 times a week, possibly more. Sometimes it was successful. sometimes not. And I still felt it was all down to me - if she was being difficult or didn't want to see anyone it must be my fault. Fortunately the Sister in charge of the unit took the time to talk to me about it. She half-persuaded me that none of this was my fault; if she didn't want to see me it was not me but the dementia. Still I had to keep on going, trying to pretend that it was down to me. But I did slowly learn that at a certain stage you have to leave it to the professionals. They will call you if necessary; they will keep you up to date. So you have to let go of the caring. It's no longer down to you. But you don't (probably can't) let go of the real person underneath the dementia. I need to hang on to that like grim death. I'm nor going to "move on" "reinvent myself" "find other interests" (all things that have been said to me by well-meaning people). I'm going to let the carers do the hands on stuff bur I still care and shall try to do that by carrying on as far as I can with life before it all happened and take comfort in that. And I think it may be starting to work - we'll have to see.

God bless.
Thank you blackmortimer.

Went for a walk yesterday and noticed many daisies, but no dandelions. I was looking for one as yesterday morning I came across a strange/funny little poem

I have lost my smile,
but don't worry.
The dandelion has it.


If you've lost your smile and yet are still capable of seeing that the dandelion is keeping it for you, there is hope. Simply reading it made me smile. I can recall seeing many dandelions last year, so does that mean many more smiles to come?
 

blackmortimer

Registered User
Jan 2, 2021
92
0
Thank you blackmortimer.

Went for a walk yesterday and noticed many daisies, but no dandelions. I was looking for one as yesterday morning I came across a strange/funny little poem

I have lost my smile,
but don't worry.
The dandelion has it.


If you've lost your smile and yet are still capable of seeing that the dandelion is keeping it for you, there is hope. Simply reading it made me smile. I can recall seeing many dandelions last year, so does that mean many more smiles to come?
I'm sure there will be @DennyD . Try stepping back and looking forward to the dandelions. They'll soon be here.

God bless.
 

blackmortimer

Registered User
Jan 2, 2021
92
0
Today Margaret's deputyship order came from the Court of Protection. Yet another milestone in the tragic journey of dementia. At least we now have power to deal with her affairs but I feel an overwhelming sadness that some kind of point of no return has been reached. Over the past six months (that's how long it's been since we first approached the solicitors) I've had from time to delve into Margaret's personal papers and every time it was heart breaking, always something to recall happier times, every bank statement even a sort of diary of what she was doing when she still could . Dementia is truly cruel.

My daughter has at last been able to arrange a close visit next week so we shall get a better idea of exactly how Margaret is faring and what her surroundings are like. Fortunately my daughter's in my "bubble" (or is it vice versa) and so she can visit me as well. So there's some light amid the gloom.

God bless
 

blackmortimer

Registered User
Jan 2, 2021
92
0
My daughter visited Margaret as arranged then came on to see me. The news isn't good. She found Margaret sitting in a corridor apparently oblivious to who my daughter was and not recognising my name or the name of any family members. She seemed good physically and my daughter was quite happy that she is being well cared for which is obviously a consolation but the total lack of recognition suggests the dementia is progressing as I was warned - but didn't really want to accept. I had hoped she would hang on to some vestige of connection to the world outside her head but, sadly, it appears I was deluding myself. I feel sad - or should I say desolate - but strangely comforted that Margaret is not apparently in pain or distress. It's as though she's left us for another world into where we can't go but can only hope is some kind of home for Margaret. I wonder if any of you out there recognise the situation.
 

Triffid

Registered User
Oct 4, 2020
42
0
Thank you blackmortimer.

Went for a walk yesterday and noticed many daisies, but no dandelions. I was looking for one as yesterday morning I came across a strange/funny little poem

I have lost my smile,
but don't worry.
The dandelion has it.


If you've lost your smile and yet are still capable of seeing that the dandelion is keeping it for you, there is hope. Simply reading it made me smile. I can recall seeing many dandelions last year, so does that mean many more smiles to come?
Love that poem. Just what I needed to hear.
We have carers looking after dad now and he is generally ok and happy most of the time. But I worry and stress all,the time
wish I had a carer!
 

DennyD

Registered User
Dec 6, 2016
181
0
Porthcawl, South Wales
Love that poem. Just what I needed to hear.
We have carers looking after dad now and he is generally ok and happy most of the time. But I worry and stress all,the time
wish I had a carer!
Dandelions are appearing! Go have a chat with them.
Every time I see one I think of that little poem and a feel a smile appearing.
 
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lemonbalm

Registered User
May 21, 2018
1,379
0
Hello @blackmortimer

I just read your post about your daughter's visit and wanted to share something with you:

I visited my mum on Wednesday. It's the first time I have seen her since she was ill with Covid and I knew to expect some changes but I was still shocked. Mum was like a ghost of herself, an empty shell. There was no flicker of recognition, no flicker of anything, in fact I am not sure she even knew I was there. She was unable to speak, just giving little moans with a blank stare. A carer and I tried to take her out in the wheelchair for a walk as planned but she was obviously unhappy and I asked that she be taken back in. I must admit I had a bit of a cry when I got home.

I was persuaded to try again yesterday by the carer and was astonished to get a small smile from mum, she said my name, we took her out for a short walk and she even managed a bit of conversation. She had probably 15 minutes of enjoyment from the walk. I thought I had lost her on Wednesday but at least part of her was back yesterday. I don't want to give you false hope but I never cease to be amazed at the changes that mum seems to go through from day to day.
 

blackmortimer

Registered User
Jan 2, 2021
92
0
Hello @blackmortimer

I just read your post about your daughter's visit and wanted to share something with you:

I visited my mum on Wednesday. It's the first time I have seen her since she was ill with Covid and I knew to expect some changes but I was still shocked. Mum was like a ghost of herself, an empty shell. There was no flicker of recognition, no flicker of anything, in fact I am not sure she even knew I was there. She was unable to speak, just giving little moans with a blank stare. A carer and I tried to take her out in the wheelchair for a walk as planned but she was obviously unhappy and I asked that she be taken back in. I must admit I had a bit of a cry when I got home.

I was persuaded to try again yesterday by the carer and was astonished to get a small smile from mum, she said my name, we took her out for a short walk and she even managed a bit of conversation. She had probably 15 minutes of enjoyment from the walk. I thought I had lost her on Wednesday but at least part of her was back yesterday. I don't want to give you false hope but I never cease to be amazed at the changes that mum seems to go through from day to day.
Thank you for that note of encouragement @lemonbalm. We must keep hope alive.

God bless