Respite-peace of mind

[None the Wiser]

I found myself writing this in my diary this morning. My husband went into respite care two days ago:

‘How do you decide what is in the best interests of someone that doesn’t understand what is going on? Someone who is Stage 6 of the seven stages of Alzheimer’s model.

How do you decide whether respite is the best thing when you can’t visit, and haven’t been able to view the respite placement in advance because of COVID?

If you do decide on residential respite how do you decide how long for? Is it better that they are in for a short time so that they can make the transition back home reasonably easily? Or should they stay for longer to enable them to settle. What do you define as settled when the person you care for isn’t settled at home, doesn’t recognise his house as home, and doesn’t recognise me as his wife?

How do you, as a carer, find ‘peace’ and relax when they’re in a respite home?’

I’d love to hear your views. I’m really struggling with whether I’ve done the right thing. My husband hasn’t slept and hasn’t engaged with others yet. I fear I have exacerbated his confusion and anxiety, and wonder if I should just go and get him and bring him back home. He went into respite because my energy levels are depleted and he seems to need to be ‘entertained’ the entire time. I thought he’d enjoy having others around. I’m feeling more worried and ‘down’ now than I did before he went in.

 

[Vic10]

Hi None the Wiser, what a difficult time. I’m in the same position my OH also went into respite care 2 days ago, partly for me and to enable him to be assessed and have physio to get him back on his feet. I can’t find peace either, I can’t stop rushing around and I can’t decide if I’ve done the right thing or what plans to make for the future. My OH is maybe at a different stage, he is very sleepy and talks very little, the only way I can judge how he is is to look at his eyes but, like you, I can’t see him.
My only comfort is he seems to be getting much better, more professional care than I could offer at home and I do wonder even though he seems to live in his own little world now in an environment where there are other people he may be stimulated to engage more.
I pray for the strength, and peace of mind to make the right decision and for you too. Stay strong. x

 

[None the Wiser]

Hi None the Wiser, what a difficult time. I’m in the same position my OH also went into respite care 2 days ago, partly for me and to enable him to be assessed and have physio to get him back on his feet. I can’t find peace either, I can’t stop rushing around and I can’t decide if I’ve done the right thing or what plans to make for the future. My OH is maybe at a different stage, he is very sleepy and talks very little, the only way I can judge how he is is to look at his eyes but, like you, I can’t see him.
My only comfort is he seems to be getting much better, more professional care than I could offer at home and I do wonder even though he seems to live in his own little world now in an environment where there are other people he may be stimulated to engage more.
I pray for the strength, and peace of mind to make the right decision and for you too. Stay strong. x

Strange thing @Vic10 its just really good to hear that someone else is having the same thoughts. Thanks for taking the time to reply. I do sometimes think that I’m the one going ‘mad’! I desperately wanted the break before my husband went in, but now I just can’t settle thinking I’ve made the wrong decision. Hope you stay strong too. Xx

 

[Vic10]

Strange thing @Vic10 its just really good to hear that someone else is having the same thoughts. Thanks for taking the time to reply. I do sometimes think that I’m the one going ‘mad’! I desperately wanted the break before my husband went in, but now I just can’t settle thinking I’ve made the wrong decision. Hope you stay strong too. Xx

Hi None the Wiser, I’ve been to visit today, my OH is in a ground floor room and I can see him through the window. The staff were brilliant they turned his bed round so his face was right by the window and I could tell they were telling him I was there, I had to take my mask off so he would recognise me, eventually he smiled and waved to me...do you know he looked bright and clean shaven and he smiled...course I cried. I asked the staff if the bed was still available at the end of the fortnight, they said it was his for as long as he needs it. Maybe, just maybe they can look after him better than me. This is the hardest decision of my life.

 

[kindred]

Hi None the Wiser, I’ve been to visit today, my OH is in a ground floor room and I can see him through the window. The staff were brilliant they turned his bed round so his face was right by the window and I could tell they were telling him I was there, I had to take my mask off so he would recognise me, eventually he smiled and waved to me...do you know he looked bright and clean shaven and he smiled...course I cried. I asked the staff if the bed was still available at the end of the fortnight, they said it was his for as long as he needs it. Maybe, just maybe they can look after him better than me. This is the hardest decision of my life.

Oh I do so understand. He sounds so well looked after. My husband was fantastically well cared for by a nursing home that put its arms around both of us, My husband used to often say, I am so happy here! Good food, company, lovely carers, music. I am so glad I found the home. I hope this works out well for you. Warmest, Kindred

 

[None the Wiser]

Hi None the Wiser, I’ve been to visit today, my OH is in a ground floor room and I can see him through the window. The staff were brilliant they turned his bed round so his face was right by the window and I could tell they were telling him I was there, I had to take my mask off so he would recognise me, eventually he smiled and waved to me...do you know he looked bright and clean shaven and he smiled...course I cried. I asked the staff if the bed was still available at the end of the fortnight, they said it was his for as long as he needs it. Maybe, just maybe they can look after him better than me. This is the hardest decision of my life.

So glad that you’ve managed a visit, albeit through a window, and now feel more confident that your husband is in the right place. I wish I could do the same. I feel sure that if I were to my husband wouldn’t recognise me, and/or it would make him even more confused and anxious.
The decision about whether this should be a move to permanent care is so very tricky. Many people say that you know when the time is right....... but I’m not sure if I will. Like you, I just want my husband to be well looked after, relaxed and comfortable. He has too long been anxious and seemingly unhappy at home. Warm hugs to you for a good weekend. X

 

[Lirene]

Your loved ones are being cared for and looked after by a team, not just one absolutely exhausted carer who has been there 24/7 for months even years. They have been used to 1 to 1 care from us when all we want to do is sit and cry with the sheer frustration of it all. These teams of brilliant carers will care and do care, they are very kind and always go the extra mile for our loved ones. Please try and take this opportunity to try and rest and hopefully ease your mind a little. Let the ‘team’ take over, even for a short while - all will be well.
My prayers are for you and everyone xx

 

[None the Wiser]

@Lirene thankyou. Of course you’re right. I should be both thankful and relieved that my husband is being looked after by a team that aren’t physically and emotionally exhausted as I am, and aren’t resentful of their role. Logically it’s far better for him, and if he had some other disease I think I could stop these feelings that I am experiencing ( exacerbated by not having seen inside the home, or met the staff).
I will try to let go and trust that I haven’t added to his anxiety and confusion by sending him off to somewhere he doesn’t know. It’s hard though!