Here we go again

[bgentges]

Hospice nurse stopped by yesterday, told mom that dad has some mottling in his knees, the nurse wanted to let the family know the end was near, could be days, weeks, maybe month but the end is near. We have been told the end very close before, yet dad is still here.

Something doesn't make since, "mottling if the skin in the knees", I thought, mottling usually started in the extremities like the feet. I was there last night, his knees looked fine, according to my sister, they were better when he laid down. I have doubts its mottling, instead bad circulation or discoloration at the time due to it being chilly. She is more experienced in this, I just have doubts

Don't get me wrong, Dad has declined drastically in the past 6 weeks or so. Eating very little, lost lots of weight and doesn't react to people, or enjoy joke\funny stories any longer (really miss him laughing, he hasn't been able to talk in years, but until recently would still laugh). We can see that dad is probably not going to be around much longer and is declining at an extremely rapid rate. Its not that I don't agree with the Hospice nurse the end is near, I don't believe the "clues" she is picking up on. In the past month we have all "felt" dad slipping away. Not sure how to explain the feeling other than he is fading \ disappearing before our eyes. We can feel him slowly leaving us

[AliBee1]

Hi. I know how sad you must be feeling so sending lots of love and big hugs to you and your family. I would not worry too much about 'clues'. You all know him much better than anyone else and you already know that he is slipping away from you slowly. Just keep including him in conversations and telling him funny things as he is probably still able to understand in his head even if he cannot react. My husband had CBD and was unable to swallow or talk for his last 6 days but the day before he died I told him that I had to comb his eyebrows and beard as his favourite carer was coming to see him. No response at all but when I stepped back and said 'Oh well you now look like a handsome chap again' he gave me a small grin and gently nodded his head. I realised that he was still aware and that was special. Thinking of you all. Love AliBee

[bgentges in reply to AliBee1]

Your are correct, we know him best and the clues are not important. It bothered me because it upset mom. I know the nurse is doing her job by informing us with what her experience tells her about what she is seeing. Although mom (we all) see dad is fading away, and we are at peace with the inevitable, it becomes a reality when you hear it from "the expert".

[AliBee1 in reply to bgentges]

How long is a piece of string? Even the 'experts' do not always know. They cann't as everyone is different. Big hug to your Mum at this time. My heart is with you all. AliBee

[rriddle]

Can you speak with the hospice nurse and/or social worker about your concerns?

[bgentges in reply to rriddle]

Not sure what to talk to them about. The Hospice Nurse comes during the day, usually mom is the one there, occasionally my sister who works part time is there when Hospice is there. Since being on hospice, this is the 3rd time we have been told, the end is near due to something they observed. Twice dad has defied expectations. What make this one different is we actually "feel" the end is near, before we were told. Hospice confirming what we already knew just makes it more real. We know the nurse is doing her job and must to tell us what her observation and experience tells her, it upsets mom each time. Who knows dad may defy expectations again, he likes to keep everyone guessing :-). He has always been a joker and prankster.

[rriddle in reply to bgentges]

You could ask, "Why do you think this is mottling? I have my doubts."

Or, you could say, "You've given us two false alarms already. This is very upsetting to our mother and therefore to our family. Unless you are 100% sure -- and we don't see how that can ever be -- please do not tell us that you think the end is near."

I don't think hospice is required to tell you anything, if you don't want to hear it from them.

If this is your father's time, I hope his passing is peaceful.

RobinR

[bgentges in reply to rriddle]

I believe they have been sure each time, dad has defied the odds. They did point out what they thought was mottling to mom and my sister, my sister did say there was discoloring in his knees, however, by the time I got there after work, his knees looked fine (I just didn't realize mottling would start in the knees, thought it started in the extremities) . I know determining end of life is not an exact science. We have questioned them each time and do explain why. Nurse and Dr have been surprised each time dad pulls thru. My fathers family are long living. My grandmother passed away at 98, had one of the shorter lives. Most others on my dad side of the family, lived to be over 100. Very good genes. My siblings and mom have somewhat of a medical backgrounds I think that combined with one of use nearly constantly by dad side, quick to react, has assisted in prolonging the inevitable. We have questioned if we are selfish in being diligent and almost "forcing" dad to continue suffering longer than necessary. Lately, when he does eat\drink, it takes hours to get a pudding cup and few ounces of water down dad. Staff at the assistant care center would never have that kind of time to devote to a single resident, we can. That, along with other things, is probably why dad has defied what experience tells the Hospice Nurse.

1st time - Dad kidneys had shutdown for 5 days, Breathing was erratic, BP & O2 dropped, fever. Hospice believed his body was shutting down. Diagnosis, not make it thru the weekend.

2nd time - Dad had gotten pneumonia along with amount of decline from 1st diagnosis of end of life, it didn't seemed far fetched to believe the end was near. Diagnosis maybe a few weeks.

3rd time - They saw what they believed was mottling. Along with dad's drastic declined since 2nd diagnosis of end of life, no appetite, weight loss, and change in interest, his BP is low, it once again seems possible. I think they have learned not to put a time frame as they say maybe days, weeks or even a month or more.

Dad would have thought it funny that they are having such a difficult time with him. He was a prankster.