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And so it goes on...

Duggies-girl

Registered User
Sep 6, 2017
1,884
So sorry @Grahamstown this sounds just like dad. I am glad that you have district nurses to help and your daughter sounds lovely. My husband and I slept in the same room as dad during his last 10 days or so. I could not leave him alone while he was like he was.

Will be thinking of you tonight.
 

Grahamstown

Registered User
Jan 12, 2018
1,682
80
East of England
With you so much in thoughts, Grahamstown. You are the expert in his condition and in the man himself of course. I think sometimes the reality is too painful to accept, hence the belief that he can be brought round to eating and drinking. You are doing the real love and care, keeping him comfortable and beloved in your presence. with love, Kindred
Thank you Geraldine for your compassion and wisdom. I think of you often during these weeks and we can take strength from each other. I am fairly certain that I should transfer him to nursing care now, and your example helps as you took so much positive from having to do the same for your husband. Today the nursing home are coming to see him and only then can I decide. The District Nurse said that he needs either that or the hospice now but if he stayed at home, a hospital bed and hospice at home would be the way. These difficult decisions never end but one thing is certain, he is now needing end of life care. Thinking of us all struggling with the disease such as you @canary or its aftermath @Duggies-girl and so many others, at this moment in time, like your dear self. Such a wonderful community of caring people. What a vale of tears!
 

Grannie G

Volunteer Moderator
Apr 3, 2006
71,353
Kent
I feel so emotional reading your posts @Grahamstown. It brings back my memories as if it was yesterday.

The watching and waiting and trying to accept the inevitable are all too much to ask of you and yet you must.
 

Grahamstown

Registered User
Jan 12, 2018
1,682
80
East of England
Just popped in to check on you, quiet presence and love to you both. Xxx
How wonderful, and welcome because the deputy manager of the care home where he had two respite stays last year came to assess him for their nursing care floor. She arrived flustered and distracted because she had trouble finding the apartment, she was unfriendly and emotionally cold, and when discussing afterwards she said that she was concerned that transferring him would stress him so much that he would deteriorate and even die and she would feel guilty. There is more but that’s enough. I sometimes wonder what training these people have. So we acted and have a hospital bed and commode coming tomorrow. We already have the anticipatory meds which he needed last night but not today, and we have nursing equipment of various sorts and will regroup. A great friend asked me how I had got on and when she heard she said they had the same experience with that care home and wouldn’t use it. Her father is in a care home which she couldn’t recommend highly enough and who deliver end of life care. When she called me to say that after much consideration they would take him and could meet his needs, I told her that I had completely lost confidence and repeated back to her what she had said. The HR person at the home called me and she is so nice and I told her too. In the midst of all this my husband lies weakening by the day, sleeping and having sips of water, watching TV and dozing. I am shocked because I really thought that it would be a straightforward matter but no. As we all know, transferring your person to a care home is not a solution, just a different kind of problem. I did think that having all this expertise from all the people on the forums gives power to your elbow. I never thought I would be writing a bureaucratic saga at a time like this but once you butt up against the real world it’s a shock.
 

canary

Registered User
Feb 25, 2014
12,607
South coast
Im so sorry to hear about the deputy managers cold and unfeeling manner. You really dont need that at this time.
Try and get as much help as you can - I believe that you should be eligible for some overnight carers too, but I dont know the details
((((((((((((((((((((((((((((((((((((((hugs)))))))))))))))))))))))))))))))))
 

Grahamstown

Registered User
Jan 12, 2018
1,682
80
East of England
Im so sorry to hear about the deputy managers cold and unfeeling manner. You really dont need that at this time.
Try and get as much help as you can - I believe that you should be eligible for some overnight carers too, but I dont know the details
((((((((((((((((((((((((((((((((((((((hugs)))))))))))))))))))))))))))))))))
You are right and it’s the palliative care team overnight sitting service. We have the number to call. The other thing she seemed fixated on and many others too, is thickening stuff. That’s all very well for earlier cases and other conditions but totally inappropriate for someone at this stage of the disease. I have read an article which says that the effectiveness of this is dubious and it does not prevent aspiration completely and not even a lot. My daughter and I think that she usually assessed dementia patients who are ambulant and a certain amount self helping and not people who are so advanced. She did say that she didn’t have people admitted from home to nursing care very often if ever, they usually were transferred from hospital. To be honest I am glad to see him comfortable at home gently fading away.
 

AliceA

Registered User
May 27, 2016
2,825
Just use your gut feeling on this, it is all about how you feel because after a long marriage you know how the man who has become the other part of you feels.
A friend died at home under similar circumstances, but she had a team of hospice nurses and two senior nurses in her own family who supported her and her grieving husband.
It was a 'good' death in the most loving way.
The right home should provide that.
It is very sad that we have to teach the 'professionals' sometimes.
We have use two homes for respite, I have always asked about end of life care. Watching them carefully as they are often off guard, I feel any place who can not see what a privilege it is to care for someone passing from life, it not the place to care for the people we care for so greatly who have not reached that stage.
You have and are doing so wonderfully well, you are inspiring. It is hard and will be hard, the cost of truly loving is. My heart weeps for you. My head says you are strong, somehow we are given extra strength when needed.

My love and prayer. Xxxx
 

DesperateofDevon

Registered User
Jul 7, 2019
2,675
@Grahamstown oh my lovelies, sending you copious amounts of love at this sad time of transition. Hospice care would be my choice in your position. Honestly whatever choice you make for your loved one is a heartbreaker no matter what.
(((((((((((Hugs)))))))))))))
You are all in my thoughts
Xxxxxxx
 

Grahamstown

Registered User
Jan 12, 2018
1,682
80
East of England
My dear husband died peacefully at home in the early hours of this morning after the disease raced through his system in the course of the past few days. Nobody really understood how severely ill he was because even to the end he had courtesy and smiled. He was poorly yesterday and feverish in the evening and I didn’t think he could live much longer and nor did he. Dear people thank you so much for all your support during this terrible time. I am sure that I shall need TP in the weeks to come because the aftermath is all part of this. Now this part of the disease has ended and I have lost my partner of nearly 55 years.
 

Izzy

Volunteer Moderator
Aug 31, 2003
62,075
69
Dundee
Oh I’m so very sorry to hear that @Grahamstown. I’m glad your husband is at peace but understand how you must be feeling. Talking Point will continue to be a support for you in the days and weeks to come.

Wishing you strength.
 

DesperateofDevon

Registered User
Jul 7, 2019
2,675
Oh my lovely I’m so sorry for your loss & so relieved that your lovely husband is no longer ravaged by this disease.
I hope you find some solace & comfort in the loving 55 years you spent together
Sending you love & light
Xxxxxxx
 

kindred

Registered User
Apr 8, 2018
2,427
My dear husband died peacefully at home in the early hours of this morning after the disease raced through his system in the course of the past few days. Nobody really understood how severely ill he was because even to the end he had courtesy and smiled. He was poorly yesterday and feverish in the evening and I didn’t think he could live much longer and nor did he. Dear people thank you so much for all your support during this terrible time. I am sure that I shall need TP in the weeks to come because the aftermath is all part of this. Now this part of the disease has ended and I have lost my partner of nearly 55 years.
All my thoughts and love, Geraldinexx