Oh god yes, all of this. I feel as though it is a discussion I wish were had before you leave the hospital.
It's in everyone's best interests that the carer doesn't collapse under the weight of it all, but sometimes you're in such an intense mode of care that there isn't time to even stop and think about what you need to be able to articulate or organise it. A breakdown like this would have been so helpful.
A good friend went through this with her husband at home. It meant a lot to her to have friends come by to give her a breather and to hang out with them when she was able to take him out. What we think of as a small act of kindness can be really huge for the receiver.
Janice, your words touched me. I lost my husband in 2020 to Alzheimer’s. He too was in memory care and died during Covid. Because he was on hospice the last weeks of his life I was able to be there. I moved him from the first facility, due to a combination of factors, and he never really enjoyed the new place even though it was bright and beautiful and the people were nicer, because his death came on very quickly just two months later. I know exactly what you’re talking about. I’m involved with the Alzheimer’s Support Network in Naples, Florida that helped me tremendously, which is a small nonprofit founded over 40 years ago by a family whose lives were touched by dementia, and there were no support groups or anything for them here. As a therapist, I see couples where one of them has dementia, and I’m grateful that my own painful experience and my recovery from it largely, has helped me help them. I wish you all the best in your new life Giving to others and making sure you give to yourself.
This is so true. I am afflicted with many illnesses have spent too much time in hospitals. I tell nurses, what one thing did you do for yourself today? They usually say nothing, so I tell them to do that.
Right now I see my husband looking so tired, two of his grown sons from his first marriage have health problems and he’s always caretaking all of us, making sure we have all the supplements he thinks will help, and making sure we’re using the “near infrared pads” he bought, which have benefits apparently, and he bought a soft-sided hyperbaric oxygen chamber for all of us to use. But I worry about his worrying. 😘
I found self-care to be one of the most difficult parts. When all my attention was focused on seeing she was comfortable, calm and loved, it was not easy to look in my own direction. As you know.
All of it true. My brother-in-law has advancing Parkinson’s. My sister has finally reached out and can manage to have rotating in-home helpers. Got her physical, mental and emotional “time off”. I live 400 miles away and am 75 myself so I regret not getting there often enough. Last time we did nothing much but SHE didn’t have to drive, I made sure she got to Mass. Small stuff matters.
I volunteer with caregivers and dementia patients at our local memory cafe. It’s always rewarding to see people connect, to listen as caregivers support each other, and facilitators encouraging patients to do crafts, games, dance and sing. Thanks for bringing the need for care to light here, Janice! The caregivers need us too! 😊🩷
As someone who cares for a loved one, you have needs that, for various reasons, are often overlooked.
Janice, your posts have such good information and kindness - I am saving them all for "someday" when I may need them!
Oh god yes, all of this. I feel as though it is a discussion I wish were had before you leave the hospital.
It's in everyone's best interests that the carer doesn't collapse under the weight of it all, but sometimes you're in such an intense mode of care that there isn't time to even stop and think about what you need to be able to articulate or organise it. A breakdown like this would have been so helpful.
A good friend went through this with her husband at home. It meant a lot to her to have friends come by to give her a breather and to hang out with them when she was able to take him out. What we think of as a small act of kindness can be really huge for the receiver.
Janice, your words touched me. I lost my husband in 2020 to Alzheimer’s. He too was in memory care and died during Covid. Because he was on hospice the last weeks of his life I was able to be there. I moved him from the first facility, due to a combination of factors, and he never really enjoyed the new place even though it was bright and beautiful and the people were nicer, because his death came on very quickly just two months later. I know exactly what you’re talking about. I’m involved with the Alzheimer’s Support Network in Naples, Florida that helped me tremendously, which is a small nonprofit founded over 40 years ago by a family whose lives were touched by dementia, and there were no support groups or anything for them here. As a therapist, I see couples where one of them has dementia, and I’m grateful that my own painful experience and my recovery from it largely, has helped me help them. I wish you all the best in your new life Giving to others and making sure you give to yourself.
This is so true. I am afflicted with many illnesses have spent too much time in hospitals. I tell nurses, what one thing did you do for yourself today? They usually say nothing, so I tell them to do that.
Right now I see my husband looking so tired, two of his grown sons from his first marriage have health problems and he’s always caretaking all of us, making sure we have all the supplements he thinks will help, and making sure we’re using the “near infrared pads” he bought, which have benefits apparently, and he bought a soft-sided hyperbaric oxygen chamber for all of us to use. But I worry about his worrying. 😘
I found self-care to be one of the most difficult parts. When all my attention was focused on seeing she was comfortable, calm and loved, it was not easy to look in my own direction. As you know.
So wise!
You give such great information!
I can only imagine how that felt for you being alone during the pandemic and not being given updates.
All of it true. My brother-in-law has advancing Parkinson’s. My sister has finally reached out and can manage to have rotating in-home helpers. Got her physical, mental and emotional “time off”. I live 400 miles away and am 75 myself so I regret not getting there often enough. Last time we did nothing much but SHE didn’t have to drive, I made sure she got to Mass. Small stuff matters.
Thank you-
I volunteer with caregivers and dementia patients at our local memory cafe. It’s always rewarding to see people connect, to listen as caregivers support each other, and facilitators encouraging patients to do crafts, games, dance and sing. Thanks for bringing the need for care to light here, Janice! The caregivers need us too! 😊🩷
The racoon in leather made me smile. Thanks. It's been a long day.