So Confused

[bgentges]

On Wed, it was noted that dad had not had any urine for nearly 48 hours, so they strait cathed him to drain the bladder. On Thursday morning, he had not produced any output, they put in a more permanent cath. Still not results so they assumed the cath was clogged so they flushed and recathed. Thursday morning nursing staff reported dad ate his breakfast, however at lunch he was not responding to mom to give him drink, nor when the nurse attempted to give him is meds. Mom noticed his breathing seemed labored so they took him back to the room, that's when things went crazy. His pulse was low,his O2 was low, his fever and BP was high. He was placed on oxygen and given an IV and started on an antibiotic assuming he had an infection. Even with the IV, dad was still not producing any output and by Friday evening the lab results confirmed what we already knew, the kidneys were not functioning. Hospice nurse gave us the news that she believed he was "actively transitioning" and did not expect him to make it thru the weekend. Dad looked terrible, eyes cloudy and glassed over, face swollen, not responding and he was retaining fluid. We stopped the IV as there was input and no output, we ceased the antibiotics as there was no infection. Called in our priest to give an annotating.

To make a long story short. After calling everyone to let them know so they could come by tell stories and say there final goodbyes. Monday morning, dad had output, his eyes are clear, his body no longer looked as swollen. He ate a little for the first since Thursday morning and took sips of water. We took him out of bed for the first time and sat outside where he seemed to be fine without need of oxygen. Hospice told us this is normal and is most likely the uptick before the end. Over night dad continued to take in sips of water, he is attempting to communicate (although cannot understand anything, which he was extremely difficult before). Hospice nurse is very surprised and unsure what to think. She will not confirm or deny that he may be "end of life".

We are prepared for the suffering to end. We have been praying for a peaceful death for a very long time as PSP has take everything from dad and his quality of life is no longer there. Now what?? What do we do? Do we continue to stay with dad 24 hours? Before Thursday, someone was with dad from mid morning to when he went to bed, however we did not stay over night. Of course when thought the end was near we took turns staying with him over night so he would not be alone "just in case". We are so confused and emotionally drained, unsure what to do.

[Hidden]

This disease is physically and emotionally draining for everyone involved. To be so close then have him recover. Who knows what is next. The roller coaster ride is not over. Please stay seated.

[doglington]

It's a nightmare. Thinking of you at this testing time.

Love Jean xx

[Yvonneandgeorge in reply to doglington]

Your post made me so sad, PSP is such a horrible illness, thinking of you all. Yvonne xxxxx

[Dadshelper]

Sounds like you are doing what anyone would. Will hospice let someone of their staff stay overnight with instructions to call if there is any degrade?

Ron

[bgentges in reply to Dadshelper]

Dad is in a nursing home, they have instructions to call with any changes. we have been staying overnight since Thursday when things took a “bad” turn. Now that he is seems to be doing better we are attempting to decide if we need to stay overnight or go back to the mid morning to bed time.

[rriddle]

What a rollercoaster ride. If this is your father's time, I hope his passing is peaceful.

[bgentges in reply to rriddle]

Definitely.

[Spiralsparkle]

Wow that does sound confusing and traumatic to witness.

Your Dad sounds like a fighter.

Go with what your gut instinct tells you to do.

Some people die when family step out side who have been there 24/7. Others hold on until family arrive.

It sounds like he is being cared for appropriately.

Enjoy this period of him improving.

I would be exactly the same though & wondering what to do for the best & what the hell is going on after preparing for the end.

Massive hugs

[AJK2001]

Thinking of you. Can the Nursing home provide someone to sit with him, or is there a sitter service (Marie Curie nurses or similar) that would help? You all need some rest.

[bgentges in reply to AJK2001]

I’m sure there is a service that would stay with dad, however, we would prefer to be with him if the is near rather than a stranger. Fortunately I have 3 sisters, we each stay every 4th night; We just wonder if it’s necessary. If he is recovering back to “normal” then we can go back to the old routine. unsure what to do, as we don’t want dad feel we abandoned him when the end comes.

[Marie_14]

This is pretty much what happened to my husband. It took 3 weeks for it all to end. We were so concerned that he would be left alone that we did a rota to ensure there was always someone with him. During the day there were two of us. Night time it was either me or my son who stayed. I have never been so tired in all my life but I am so glad we did it. Had we not then we wouldn't have realised he was struggling the night before he died. Because we were there we were able to get him help. Neither would I have been there early the next morning when he died.

Incidentally, his kidneys gave up and they did something to help as his body was swollen. I have no idea what they did but it worked and the fluid drained out. That was a shock as we weren't expecting it. Get something to sleep on though. It won't be good sleep but better than nothing.

Good luck to you all. This is so hard.

Marie x

[bgentges in reply to Marie_14]

Thank you Marie, its good to hear that others have gone thru similar situations. If you don't mind me asking, when you say "his kidneys gave up and they did something to help as his body was swollen" did his kidneys start functioning again. They have not given dad anything to "kick start" the kidneys or relieve the fluid retention\swelling, however after almost 5 day of no output and no indication of an infection, dad kidneys started functioning again as he now has output.

We understand that he could be having a end of life "rally" however what we don't understand the organs that were not functioning, suddenly start functioning. In all our searching, we cannot find where this happens. Everything else we are seeing fits a rally except for the kidneys.

I have 3 sisters so we take turns staying the night, we each only need to stay every 4th night, mom is with him during the day and people pop in an out. We all have jobs so taking off an unknown number of days is not easily worked out as we know we will need that time eventually. We do not want mom to stay until the end is imminent as we want her to get her rest and take care of her health when the end does come its going to be a very difficult and tiring time.

[Marie_14 in reply to bgentges]

No my husbands's kidneys never were normal after that. He passed urine but not on a normal basis. His fingers and hands were so swollen that one of the nurses looked very worried and they removed the water from his body. I was a bit shocked so didn't know what was going on. Panic set in I suppose.

Your Dad has done well if his kidneys are functioning again. Don't be surprised if it all goes pear shaped again though.

Take care.

Marie x

[Tttp]

At times near the end it’s like a rollercoaster, praying your dad has a peaceful passing, so hard on the family, take care your in my thoughts and prayers. Nettie

[bgentges in reply to Tttp]

Thankyou. The whole process has been a roller-coaster ride seems like the bumps are coming faster and more often now

[Cazash]

Hi.

We’ve just been where you are and lost dad over the weekend

My advice just run with your gut feeling.

Our Dad was at home til the end so a bit easier but we arranged for a Marie curie nurse to night sit and made a point of always saying our goodbyes each time we left ‘just in case’ it was the last time

Dad was heavily morphine so not really aware of us but it sat much better with us to know he was watched and we would be called if needed.

You guys also need to look after yourselves don’t forget that.

This is a really tough bit with PSP as it did the same to us and dad had a ‘better’ spell before the end.

My heart goes out to you. We’ve walked this road and it’s not easy. Be strong and go with your gut. Say goodbye each and every time just in case !!

Caz

If tears were diamonds we would al be rich beyond our wildest dreams. My thoughts are with you. 💕