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So, six weeks now in care home and as from one week ago, he is Permanent. Do I want him back? No, NO, No. Although he will not remember how it ended,

SandyRose

Registered User
Mar 9, 2020
59
I do, it was a very bad time. I cannot forget how we ended. Saw him through the window of the care home a couple of days ago with my daughter. She had seen him the day before and it was all quite emotional. When I saw him, I may as well not have been there, no real recognition, not even for our dog wich we took with us, Eventually he wandered of with out a backward glance. WhenI do eventually see him face to face - what will I see? The person from 6 weeks ago, so hostile and agressive, and so totally gone mentally? Until I actually see him, I don't know.
 

Sarasa

Registered User
Apr 13, 2018
1,388
Hi @SandyRose, I’m glad your husband has settled in the care home , but it must be tough not to get a response. What did your daughter think when she visited?
Things are very strange at the moment with care homes not allowing proper visits, but when they do I hope you and your husband rebuild some sort of relationship. Don’t forget to look after you, you sound a bit down about it all.
 

marionq

Registered User
Apr 24, 2013
6,102
Scotland
An overpowering sense of sadness mixed with relief. Only someone who has stood in your shoes could know how that feels. We feel for you. Look after your yourself now that there is time to do that. Best wishes.
 

Hazara8

Registered User
Apr 6, 2015
428
I do, it was a very bad time. I cannot forget how we ended. Saw him through the window of the care home a couple of days ago with my daughter. She had seen him the day before and it was all quite emotional. When I saw him, I may as well not have been there, no real recognition, not even for our dog wich we took with us, Eventually he wandered of with out a backward glance. WhenI do eventually see him face to face - what will I see? The person from 6 weeks ago, so hostile and agressive, and so totally gone mentally? Until I actually see him, I don't know.
There has been much talk of late about Care Homes in relation to this new and challenging virus. The "distancing " for those visiting loved ones is yet an added factor, compounding what has existed for a very long time - that state of helplessness which seems to come about once a loved one has entered the Care Home, permanently. I was told by one with profound experience in managing dementia, that three months was the template for an individual " settling" into the Home environment. And then you have this 'new' relationship - of you being at home, with the one who was once a part of daily life, a member of the household, a continuous element in day to day living and so on - of "separation ", probably for the very first time. In most cases this separation has come about because there was no choice, none at all. Not just forgetfulness, nor a general need for 'personal care'. Not anything to do with inconvenience, nor a commitment to one who no longer is capable of independent living at all - but moreso the often ' silent trauma' which can be not just a daily challenge, but sometimes an hourly nightmare. Tantrums, aggression, accusations , anger at meal times, refusal of food, refusal of medication, incontinence, perpetual dialogue so often of a ' delirious ' nature. Shouting screaming...... but also tears and sobbing. All in all, like a stranger in your midst, an incomer bearing the exact look and countenance of the loved one you have known so well and who is now ' lost 'somewhere in that same body and soul. This and this " reality" NOT imagined ( all the talk and explanation cannot even touch that reality) is the catalyst, the choice less instigator of the move into Care. This alone is hugely stressful, as has been often cited, a kind of "bereavement ". And because there exists this separation, the loved housed in a strange place, with new people, uncertain or confused or afraid or whatever and you in a perpetual state of wondering what is happening, are they wondering where they are? Are they afraid? Are they safe? Do they think l have abandoned them? Why can't l be there to hold them, assure them? At the same time l could not bear going through all this again. Every day and night filled with anxiety, every day and night one endless battle with both physical and mental ups and downs, every day and night a confined and perpetual state of despair and heartbreak. Exaggerated? I think you will know the answer as well as anyone.

So, perhaps if one can, you try not to dwell on the " what ifs" throughout your day. Make the visits a " here and now " event. Don't hope nor expect anything, because disappointment can be harsh and debilitating. Dementia is an immense affliction, for the one living it certainly. For those of us who play the role of carer, whether spouse, partner, kith or kin, that immensity is
life-changing and can break hearts without question. Alas, the term " love" has been misused down the years so much that it can sound trite in respect of all of this. But true " love" recognises truth. It seeks no reward, it embraces all things and it enfolds that very person who once rejected your care, who flung food across the room, who seemed openly hostile to who you really were and who behaved in a manner befitting someone who was seemingly insane - it enfolds them because it negates the disease with all its mischievous and tragic presentations, it is immune to pain....yes, and even death. The one who resides still within that cocoon of a neurological mysterious world we term dementia, is still there. We know this. We have seen this. I have witnessed this. And despite everything, there can be joy in the seeing of this. Joy being an expression of love.

With warmest wishes
 

wanderer22

New member
Jan 15, 2020
8
There has been much talk of late about Care Homes in relation to this new and challenging virus. The "distancing " for those visiting loved ones is yet an added factor, compounding what has existed for a very long time - that state of helplessness which seems to come about once a loved one has entered the Care Home, permanently. I was told by one with profound experience in managing dementia, that three months was the template for an individual " settling" into the Home environment. And then you have this 'new' relationship - of you being at home, with the one who was once a part of daily life, a member of the household, a continuous element in day to day living and so on - of "separation ", probably for the very first time. In most cases this separation has come about because there was no choice, none at all. Not just forgetfulness, nor a general need for 'personal care'. Not anything to do with inconvenience, nor a commitment to one who no longer is capable of independent living at all - but moreso the often ' silent trauma' which can be not just a daily challenge, but sometimes an hourly nightmare. Tantrums, aggression, accusations , anger at meal times, refusal of food, refusal of medication, incontinence, perpetual dialogue so often of a ' delirious ' nature. Shouting screaming...... but also tears and sobbing. All in all, like a stranger in your midst, an incomer bearing the exact look and countenance of the loved one you have known so well and who is now ' lost 'somewhere in that same body and soul. This and this " reality" NOT imagined ( all the talk and explanation cannot even touch that reality) is the catalyst, the choice less instigator of the move into Care. This alone is hugely stressful, as has been often cited, a kind of "bereavement ". And because there exists this separation, the loved housed in a strange place, with new people, uncertain or confused or afraid or whatever and you in a perpetual state of wondering what is happening, are they wondering where they are? Are they afraid? Are they safe? Do they think l have abandoned them? Why can't l be there to hold them, assure them? At the same time l could not bear going through all this again. Every day and night filled with anxiety, every day and night one endless battle with both physical and mental ups and downs, every day and night a confined and perpetual state of despair and heartbreak. Exaggerated? I think you will know the answer as well as anyone.

So, perhaps if one can, you try not to dwell on the " what ifs" throughout your day. Make the visits a " here and now " event. Don't hope nor expect anything, because disappointment can be harsh and debilitating. Dementia is an immense affliction, for the one living it certainly. For those of us who play the role of carer, whether spouse, partner, kith or kin, that immensity is
life-changing and can break hearts without question. Alas, the term " love" has been misused down the years so much that it can sound trite in respect of all of this. But true " love" recognises truth. It seeks no reward, it embraces all things and it enfolds that very person who once rejected your care, who flung food across the room, who seemed openly hostile to who you really were and who behaved in a manner befitting someone who was seemingly insane - it enfolds them because it negates the disease with all its mischievous and tragic presentations, it is immune to pain....yes, and even death. The one who resides still within that cocoon of a neurological mysterious world we term dementia, is still there. We know this. We have seen this. I have witnessed this. And despite everything, there can be joy in the seeing of this. Joy being an expression of love.

With warmest wishes
Thank you for saying so beautifully everything I don't even understand myself, but know to be true
 

White Rose

Registered User
Nov 4, 2018
627
And because there exists this separation, the loved housed in a strange place, with new people, uncertain or confused or afraid or whatever and you in a perpetual state of wondering what is happening, are they wondering where they are? Are they afraid? Are they safe? Do they think l have abandoned them?
@Hazara8 you write with such understanding of the disease and it's affect on the person living it and on their carer. The selected sentences particularly resonated with me because my partner is in respite for two weeks and those are exactly the same questions I'm asking myself! I can't seem to enjoy the time to myself for being worried about him. How I'll ever be able to put him into a care home permanently I don't know!