My 96 year old mum is in a nursing home where she has been for 18 months. The dementia has progressed to the point that she has no memory although she is sometimes aware that we are there. She became immobile a year ago and was wanting to retreat to bed most days over the last 6 months or so. Then After a stroke in early June this year she couldnt be moved from her bed. At that time she was unconscious and didnt eat or drink for a few days. We thought were going to lose her and then she came round and even started eating very small amounts of food occasionally. She is asleep most of the time now and it is almost impossible to engage with her now. This week she has not been eating because it has been so difficult to rouse her and when she is spoon fed she is coughing or falls asleep again before having enough. The nursing staff and carers are very good but noone can say how long she can last in this state. They are amazed that she is still with us . She is so frail and looks skeletal and continuing to lose weight but seems to have a strong heart. It is so awful to see mum disintegrating so slowly . I cannot visit every day( but do weekly and my brother is just round the corner from her) as I am at a distance. Is anyone else out there at this very same stage ? How do you cope? I feel it will be a blessing when she is released .
Struggling with the end stage of parent's dementia
- Thread starter Cata
- Start date
My dad was at end of life, 10 hour round trip to visit him.
Due to the wise words and advice I’d read here I knew that each visit may be the last, so each time, with dad mostly asleep I told him everything I wanted to say, how much I loved him, and it was all right for him to leave.
I wasn’t there when he died, but I feel no guilt, I’d said goodbye.
The last time I saw him it totally reminded me of him dozing off at his home, hand clutching the tv remote. God help anyone that tried to sneak it away from him, zero to 100% in a heartbeat, no one changed his TV.
Due to the wise words and advice I’d read here I knew that each visit may be the last, so each time, with dad mostly asleep I told him everything I wanted to say, how much I loved him, and it was all right for him to leave.
I wasn’t there when he died, but I feel no guilt, I’d said goodbye.
The last time I saw him it totally reminded me of him dozing off at his home, hand clutching the tv remote. God help anyone that tried to sneak it away from him, zero to 100% in a heartbeat, no one changed his TV.
My mum is in end stages. My sister lives close by to her care facility but I'm in another city with small kids and I don't drive. I feel intense fear before visiting as I don't know how I will find her physically -- it's almost 3 a.m. here and I know I'm awake from the stress. My sister is not coping well and I will try to visit more often but the latest is that mum is having difficulty swallowing and I couldn't bear to see this. My husband says I won't have to watch her struggling and eating but I just -- what helps is seeing her. My imagination is worse than what I find. Even if she is thinner and her mouth gaping open, being close brings us both comfort I think. It's very hard being at a distance. I send you much love and courage xxx
Welcome to Talking Point @Franker.
I hope it will bring you some comfort to know all of us who have had people in residential care understand your fears before visiting and our imagination is often worse than the reality.
I hope your mum seems pain free and comfortable. Appearance , especially at this stage, is of secondary importance.
I hope it will bring you some comfort to know all of us who have had people in residential care understand your fears before visiting and our imagination is often worse than the reality.
I hope your mum seems pain free and comfortable. Appearance , especially at this stage, is of secondary importance.
I am so glad to hear that I am not the only one who is frightened before each visit to see OH in his care home. I was feeling very guilty about this. He has deteriorated a great deal over the last months and some days I find my visits very upsetting. Usually manage to hide it until I am in the car going home. I must admit last week one day I couldn’t find the courage to go in and was racked with guilt about it. I read an article which said that even if you got no response it had been proven that they still got pleasure from your visits through touch and your voice so the next day my visit was easier.
From my experience on Talking Point, I find more tears have been shed in cars on the way home than anyone would believe.
My dad stopped walking right after his birthday, speech is inaudible and sleeps 90% of the time. Unfortunately, I can’t show to many tears-the only “man” present. The last time I dropped a silent single tear, the response I got from my mother, who didn’t mean it was, “are you crying?” In disgust. This journey has been so lonely. No men around that have given time outside my pastor. However, I had to ask for that and it consisted of conversation about my wife who didn’t want to be in my presence. In fact she could not understand why I wasn’t emotional for her after my dad grabbed her sexually one day. He hadn’t behaved that way in over 20 years of our marriage. It would have been a thing for me if he knew who we were and hadn’t done the same to 5 plus other women including his wife-my mom, nurses, daughter and granddaughter. But for her it was different, it was “triggering”. There was plenty of bizarre behavior and everyone else was kind, understanding and didn’t break stride caring for him. Anyway, my dad has been given “weeks to days” to live. I’m not ready for him to go, but I’m ready for him to stop suffering to. The man doesn’t eat anything to sustain him and is thirsty. He can’t swallow very well. I’m grieving. My mom more than I. How dabilitating it would be for me if it were not for Faith in Jesus Christ. I pray that I am able to be a stable presence for other men. What a lonely road we walk, particularly absent of brothers in the family. Lord have mercy.
Dad opened his eyes barely for about 5 minutes today. He is totally void of words. There isn’t even the incoherent mumbles anymore. He coughs when we move him to clean him. He isn’t eating anymore. Sucks big time. Just thought I’d get these thoughts outside of myself.
