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Libbybookworm

Registered User
Apr 6, 2018
82
0
I've looked after my husband on my own without a break for the past eight years, but recently arranged a week's respite care for last week so that I could attend a family birthday weekend 150 miles away. It took much persuasion by Social Services but he finally agreed to go. On the day he was fine up until the point he entered his room, when it started going pearshaped. He lay on the bed, glaring up at the ceiling, refusing to speak or to go back downstairs to the communal areas and gardens. After about half an hour I eventually had no option but to leave, with staff assuring me that he would be fine. I phoned several times over the next few days and a neighbour visited; all reported that he was okay.

I went to pick him up at the end of his stay and he burst into tears as soon as he saw me, cried all the way home and for the past three days has been following me around, crying, wanting constant cuddles and reassurance that I will never send him there again. He refers to it as prison. He appears to have gone further downhill in that week; he had reached the point of being unable to perform any of his personal care but now he's more unsteady on his feet and is having difficulty drinking and feeding himself. He used to go out for a walk but is refusing to do that now. I've taken to hiding in my bedroom occasionally but he then keeps knocking on the door.

I feel as though this is payback for even thinking about respite and wonder whether I will ever again have the opportunity to have some time to myself. I am his sole carer, with no family living nearby and no friends who would be able to offer any assistance. We did try having a three hour weekly respite session late last year, but that only lasted a couple of weeks as OH refused to let him in our home and walked out when I overruled him.

Where do I go from here?
 

Lawson58

Registered User
Aug 1, 2014
2,833
0
Victoria, Australia
A friend’s mum constantly refers to her nursing home as a prison and after years of being a resident still blames her family for putting her there and still says she wants to go home.

Your husband has been so dependent on you for such a long time that his need to have you there constantly is understandable. The fear that you had abandoned him was no doubt quite frightening for him.

I can remember after my daughter then about eight years old had a hospital stay, she was exactly the same. needing mum to reassure her. I suspect that your husband is experiencing a similar emotion.

Hopefully, he will settle soon but perhaps this is a signal that his dementia is worsening. And I hope that you had some well earned rest and that it helps you to look after yourself as well as him.
 

Pots and Pans

Registered User
Jan 13, 2020
272
0
He may settle again as the change in routine has thrown him into a spin. First change going into respite and, actually, home again is another change. I recently booked a week live-in respite when I was having 2 nights away so here with carer first two days to get routine with her working as I did it. First night away tricky but he then settled. Perhaps if you need another break, consider this? Live-in respite rather than away? And if you can find a carer who would do a day a week with you so a familiar face this could work well. You do need the breaks or you will end up crumbling - you care better if you have done me time. For me ( like yourself, no family to help nor friends willing to do much) activity groups through Alzheimer's support plus a carer one day a week have been a lifesaver over the past year. ( Sadly my OH's needs now too severe for him to stay at home any longer but we did get this extra year by getting help ). A point about carer help... your husband might accept a female carer more easily. Mine did. Can be introduced too as someone to help you with a bit of cleaning or similar too while you pop out? Do hope you can resolve this, but don't feel guilty for wanting to do something normal yourself. Eight years is a long time. Good luck!
 

Libbybookworm

Registered User
Apr 6, 2018
82
0
You MUST consider your own needs too.

For someone 8 yearsinto dementia, he sounds quite 'aware'.
He was first diagnosed with early onset Alzheimer's eight years ago but was displaying symptoms two years before that, at the age of 56. He does seem quite aware, but I'm not sure how many others are attuned to his awareness. I can understand his mumblings and respond, mostly correctly, if not he'll say "No, no, no". I must admit, I didn't think we'd still be going through this eight years down the line, but every case is different and I think early onset can go on a lot longer.
 

Libbybookworm

Registered User
Apr 6, 2018
82
0
A friend’s mum constantly refers to her nursing home as a prison and after years of being a resident still blames her family for putting her there and still says she wants to go home.

Your husband has been so dependent on you for such a long time that his need to have you there constantly is understandable. The fear that you had abandoned him was no doubt quite frightening for him.

I can remember after my daughter then about eight years old had a hospital stay, she was exactly the same. needing mum to reassure her. I suspect that your husband is experiencing a similar emotion.

Hopefully, he will settle soon but perhaps this is a signal that his dementia is worsening. And I hope that you had some well earned rest and that it helps you to look after yourself as well as him.
Thank you so much for your reassurance. My immediate reaction was that I couldn't contemplate another respite, but after a couple of days of being followed around constantly and disturbed nights I've realised that it will have to happen to preserve my sanity.
 

Libbybookworm

Registered User
Apr 6, 2018
82
0
He may settle again as the change in routine has thrown him into a spin. First change going into respite and, actually, home again is another change. I recently booked a week live-in respite when I was having 2 nights away so here with carer first two days to get routine with her working as I did it. First night away tricky but he then settled. Perhaps if you need another break, consider this? Live-in respite rather than away? And if you can find a carer who would do a day a week with you so a familiar face this could work well. You do need the breaks or you will end up crumbling - you care better if you have done me time. For me ( like yourself, no family to help nor friends willing to do much) activity groups through Alzheimer's support plus a carer one day a week have been a lifesaver over the past year. ( Sadly my OH's needs now too severe for him to stay at home any longer but we did get this extra year by getting help ). A point about carer help... your husband might accept a female carer more easily. Mine did. Can be introduced too as someone to help you with a bit of cleaning or similar too while you pop out? Do hope you can resolve this, but don't feel guilty for wanting to do something normal yourself. Eight years is a long time. Good luck!
Thanks for your suggestions. They are certainly worth bearing in mind, especially the female carer. I had thought a man would be ideal but that didn't work at all. I'm not sure whether there are live carers in our area but I'll start investigating. Onwards and upwards.