Had enough

[alopecia]

Hi all I'm new here but not new to Dementia world, this is due to my step dad, he is so very important to me, he started to become immobile 22 weeks ago and been in and out of hospital consecutive ever since, sadly the hardest thing was finding the nursing home, this was 4 weeks ago. He has only spent 9 days there always in and out of hospital, as a family we spend from 3-7pm every day in the hospital, 30 miles one way , it's so draining and as you all understand It's not understandable. We went in walking, and now hoisted, in a full wrap around pad and can barely communicate nice things. Obviously palliative care, today I've had to speak to the nurse in charge about how we say enough is enough We do have a DNR in place ,but what else can we do, he is suffering and half the weight he was last year. For his own good today the family( mum) decided ok enough! Sadly I have a good understanding of how Dementia, end of life and palliative is due to being a team manager for a care company, this I feel makes it harder for me, work is work but when it's your family? Wow it's something different. I don't know what I want from anyone just anything in way as support or maybe advice to discuss what TLC at the home would mean.. Thanks in advance x

 

[marionq]

I hope your title is not due to your hair falling out over worry about this horrible illness. It wouldn't surprise me though because the stress is huge for many people. When your stepdad is finally released from this torment you will be able to see things more clearly and perhaps come back and give some of us your advice .

Good wishes at this difficult time.

 

[alopecia]

marionq, ty for replying, alopecia is a name I used because it would not take my name it's already been used,

 

[jjude]

Hi. My heart goes out to you and I can only tell you my experience. Dad was at home until two days before Christmas when we couldn't rouse him and the doctors receptionist told Mam the doctor wouldn't come out and she took it upon herself to call an ambulance. They came and said he had to be admitted as he was showing signs of infection. He went in walking (only just) and eating well. He came round in the ambulance on the way to hospital but they admitted him anyway. On the second night he looked my brother right in the eye and asked him to look after the family. This was said very lucidly as he knew. He ended up in the dementia unit. He lost the ability to walk, wouldn't open his eyes and we fed him every meal which was puréed. I went every night and sang to him and held his hand. The doctor suggested that he only had a few weeks left and that it wasn't feasible to take hi home.. It was on,y when one of the nurses told me that putting him into a nursing home could be a positive that I started to feel she may be right. She said "the nurses and carers could do the nursing and we could do the loving. He was transferred to a home where he spent the last two weeks of
his life. He was very peaceful in the time that he was there. I won't go into detail and died three weeks ago very peacefully with the family there. We were assisted by a beautiful nurse throughout. In all the time he was there I took that nurses words literally and spent every day just loving him and telling him how much we all loved him and we were all strong and able to cope with life without him. I told him his work was done and how proud we were of him. Sorry if I am rambling but it is the first time I have really spoke about
it. I honestly believe I helped prepare him for his death which in turn was very gentle and peaceful. I don't know if this helps but I hope you find peace. Big hugs xxx

 

[CJinUSA]

Hi all I'm new here but not new to Dementia world, this is due to my step dad, he is so very important to me, he started to become immobile 22 weeks ago and been in and out of hospital consecutive ever since, sadly the hardest thing was finding the nursing home, this was 4 weeks ago. He has only spent 9 days there always in and out of hospital, as a family we spend from 3-7pm every day in the hospital, 30 miles one way , it's so draining and as you all understand It's not understandable. We went in walking, and now hoisted, in a full wrap around pad and can barely communicate nice things. Obviously palliative care, today I've had to speak to the nurse in charge about how we say enough is enough We do have a DNR in place ,but what else can we do, he is suffering and half the weight he was last year. For his own good today the family( mum) decided ok enough! Sadly I have a good understanding of how Dementia, end of life and palliative is due to being a team manager for a care company, this I feel makes it harder for me, work is work but when it's your family? Wow it's something different. I don't know what I want from anyone just anything in way as support or maybe advice to discuss what TLC at the home would mean.. Thanks in advance x

Hello. My mother lived with me for nine years, in my home, and she died here. She became non-ambulatory, thus relying on us for everything (all personal care, etc.) from last Sept til her death in February. The weekend she became immobile, I kept asking her if she wanted to go to the hospital, and she said No. So we entered hospice care at that point.

As for her last weeks, she picked up a respiratory infection that made her increasingly weaker, and so we had to start the palliative route. She never wanted to be institutionalized. I felt it best for her that she die as she wished, at our home.

I don't know if it helps to hear this. You are right: it's quite different when it's your mother. I have sat vigil for friends' parents and even for my mother-in-law, but it felt very different with my mother.

My heart goes out to you, and I send you all strength possible for what lies ahead.