Three weeks on

[vannesser]

Oh out hospital 17 June .still not standing up been in chair by hoist
Cares coming 4 times a day.going ok

Oh had a bad week this week .
Sunday going on all day abought going home wonting a race or ambulance to take him he telling me I don’t care a-bought him and others do meaning cares.he was like this at 8 when they came shouting he don’t live here and all I do is lit to him I Brock down one of the cares came telling me to go along with it I said it’s been the same thing all day and how can I go along with it as the people he needs to see are all dead.
He fell sleep when they left
Things calmed down a bit may be down to fact he slept a lot

Then for some reason got up at 4 yesterday morning telling me to get outhouse as he don’t won’t me
Calling me a lot of names as nice as pie when cares came then telling me he was going out with one of them as he didn't no me and was I jelly .and asked when I finished work I can go .this hit me like a tone of bricks as the day be-for he was saying he loved me and had always wonted me from the first time he saw me (I don’t think he relives it was over 40 years ago as if our kids ring or daughter comes in some times he don’t remember there names )
He sad on like this all the time till cares came a gain and he shouted to me as I was in kitchen his girlfriend is here and did I know her .
I told 1 of them he on a-bought her .
She said to him you got your wife girlfriend and another lady in one room .not allowed .he told her I was going home soon she said she was 2 and that was that.he dident speak rest of day and fell a sleep at 8 last night cares think it might have been with him being tired .u
I hope so but it really hurt
As he as told me to go before and he devours me then he ok but to say he can’t remember marrying me shocked me

 

[canary]

Im so sorry @vannesser - that sounds tough.

I guess he had gone in his mind back to a time when people who are now dead, were alive and before he met you. He probably thinks that he is much younger than he really is too. Its hard to take all the abuse, even when you know that its the dementia.

(((((((((((((((((((((((((((hugs)))))))))))))))

 

[Hazara8]

Oh out hospital 17 June .still not standing up been in chair by hoist
Cares coming 4 times a day.going ok

Oh had a bad week this week .
Sunday going on all day abought going home wonting a race or ambulance to take him he telling me I don’t care a-bought him and others do meaning cares.he was like this at 8 when they came shouting he don’t live here and all I do is lit to him I Brock down one of the cares came telling me to go along with it I said it’s been the same thing all day and how can I go along with it as the people he needs to see are all dead.
He fell sleep when they left
Things calmed down a bit may be down to fact he slept a lot

Then for some reason got up at 4 yesterday morning telling me to get outhouse as he don’t won’t me
Calling me a lot of names as nice as pie when cares came then telling me he was going out with one of them as he didn't no me and was I jelly .and asked when I finished work I can go .this hit me like a tone of bricks as the day be-for he was saying he loved me and had always wonted me from the first time he saw me (I don’t think he relives it was over 40 years ago as if our kids ring or daughter comes in some times he don’t remember there names )
He sad on like this all the time till cares came a gain and he shouted to me as I was in kitchen his girlfriend is here and did I know her .
I told 1 of them he on a-bought her .
She said to him you got your wife girlfriend and another lady in one room .not allowed .he told her I was going home soon she said she was 2 and that was that.he dident speak rest of day and fell a sleep at 8 last night cares think it might have been with him being tired .u
I hope so but it really hurt
As he as told me to go before and he devours me then he ok but to say he can’t remember marrying me shocked me

Your post conveys much that is familiar to many who are living with the reality of dementia in a loved one. In fact there are numerous accounts, all different, all personal and all very very real for the recipient in question, whereby "care" becomes a completely different challenge owing to the ' alienation' factor which this disease can promote. We are social beings and the isolation now being felt amongst communities worldwide owing to this current pandemic brings with it certain unexplored territories which are now debated at varying levels. For we that have engaged with the dementia journey such isolation is nothing new and in fact remains for the most part an area which cannot truly be understood unless one is living with it. The day to day apprehension and deeply felt anxiety over what will be a reaction to a word or gesture or simply asking about a choice of beverage, or the unexpected outburst or cutting remark - difficult so often to equate with the disease alone - and the unending physical caring tasks which for many are simply beyond the telling of, because they defy even the most receptive imagination - all of this and more is the lot of one who is living alongside the one who is afflicted with dementia. We see and hear much about the trauma of an unexpected cancer diagnosis and most of us have direct association with that disease in its varied presentations in both family and friends, or indeed personally. Yet dementia receives it seems to me, a rather tentative approach owing to the fact that the general view focuses on the practicable aspects the management of same and the whole necessary application of Care at the various stages and progression of the disease. All of which matters. But its the minutiae which requires profound investigation and awareness and a fundamentally developed awareness. By this l mean a true and meaningful perception of what it is like to witness someone whom you know intimately and lovingly, to transgress unwittingly, to become abrasive to act as if you were a stranger in their midst and to show little if any remorse when the tears flow. Sometimes it is nigh on impossible to believe that it is the dementia imposter alone who behaves in this way, because it presents so convincingly and devoid of emotion. Yet it IS the disease and dementia is the culprit. One has seen this to be the case over and over again, both personally and when observing in a Care facility. This does not make it any easier when confrontation or open hostility meets you head on and resembles authenticity in the moment. Nor when a life history appears to melt away before your eyes along with the laughter and affection that went with it. The normality of everyday living fragments into a nether world of unpredictable outcome coupled to mundane and necessary routine. All of this contained within the familiarity of a home which once seemed so secure, safe and potentially everlasting. And now there exist two " realities". Yours, with all the angst and despair hinging on expectation for things improving and that of the loved one, who's "reality" is as fundamentally real to them as the rising sun is to the rest of us.

It is too simplistic to say " go with it " when your heart is breaking. Yet you cannot confront dementia or challenge it because that exacerbates it. So we know that behind that mask of behaviour and indifference resides the "actual" person. Humanity is too ancient and vast in essence for this not to be so. Therefore we relate to the " actual " at all times, despite the dementia interloper making our life hell. We cherish that fleeting smile or expression of affection when it comes and when aggression reigns or cold heartedness is conveyed when goodwill is given, we accept it as the imposter it is and try not to allow it to become personal. A huge ask and yet perhaps the only way ahead . One would have to be superhuman to survive a perpetual physical beating. Yet the mental beating is as real in its severity and outcome with dementia if it goes unchecked. One day the story will be told and society, hopefully, will relate to dementia with as much attention as to a pandemic.

I can remember very clearly during one of the worst moments caring for my late mother, who had vascular dementia and Alzheimer's combined, that if armed terrorists had come knocking at the door l would not have cared one jot. That sounds almost trite. But having lived those almost unbearable moments when everything you hold dear is torn from your grasp and your very heart, l do not retract one word. Dementia is very real and l hear a thousand voices crying out to be heard. Those voices can be heard willingly and with open arms here, on Talking Point.