Can anybody tell me how you no someone is in final stages of life

[82wendy]

Mother in law yesterday put to bed after lunch carers got her up at 11am today she was asleep so put her back to bed at 1pm today sleeping most of day and night now.

[goldcap]

Wendy, Is she sleeping with her mouth wide open like she is trying to get air?

[goldcap]

My mom did that at the very end-the last night of her life. She did not have PSP but in the end I do not think it makes a difference. The last week of her life she lost her appetite and stopped eating and then drinking. Hospice nurses told us not to force her to as she could aspirate fluid into her lungs. We syringed small amounts of water in her mouth. She drifted in and out of consciousness. She spoke of long gone relatives in the room and an angel that always stood behind me. She kept saying they were waiting on the other side for her. The day before she passed she woke up and seemed miraculously better. Wanted something to drink and took slurps of soup. And talked all day-about everything. It was a revelation. I have heard it is often like this. That right before they seem to have made a miraculous recovery. Then she was tired and wanted to sleep. Her breathing became so very labored-almost stuck in her chest-ragged. She had awoken once before saying."hospital". When we asked why she said,"hurt". I said if we can make it stop hurting do you still want to go? And she shook her head vehemently no. So we gave her small amounts of morphine this time like the hospice nurse told us to and her breathing became more even and shallow. We all gathered around her for hours-then eventually everyone went home. I was alone with her. I climbed into the hospital bed and curled up with her like I did as a child. I slept until my niece looked in on us. She was asleep in the other room and had just woke up feeling compelled (she said) to check on us. I said we we good, and satisfied she left the room. I stroked mamas forehead as she took a slow deep breath in and released it. I put my head down once more taking comfort in the rising and falling of her chest beneath me. I started to drift off as I felt her chest rise once more as she took a third long slow breath in -I waited for the release which never came. The room was overwarm and my eyes blurry-tears? I felt something/one wrap around me and then drift above. I felt I was as well. Then I felt present in my body and realized she was not there with me anymore. But it was not sad or anything. I can only describe it as feeling very comforted and surrounded by warmth and overwhelming love, and calm gratitude knowing she was not suffering anymore. I stayed that way for a little while not willing to let go of the feeling. It was that beautiful and amazing. And I knew then we had done the right thing bringing her home to be surrounded by family in her final days. There were no machines or last minute "heroics" to prolong the agony of a beautiful spirit confined to a body that did not serve her anymore. This is what I want for the PSP man I love. And I can only pray that it will be the same for him....and me.

[82wendy in reply to goldcap]

Thanks gold cap your description of your moms passing very similar to my moms and very sad but also comforting.Yes my mother in laws mouth is wide open when sleeping but breathing seems normal she is not talking but hasn't spoken or held a conversation for weeks which is the PSP.

[dragonladynaps in reply to goldcap]

Very beautiful. Very similar to my husband's passing. I wanted him to die at home not in some hospital. And that's what he wanted. He took one last look at me, took three breaths and passed.

[Hidden]

Mum's muscles all went stiff in the end -mostly the last week. You could feel the change when you touched her arms or hugged her. Finally in the last 3 days her throat and tongue muscles went stiff so she was no longer able to swallow anything at all. She slept a lot by then and she indicated that she wasn't actually even hungry before that happened. Apparently the brain prepares you at this point by removing the desire to eat and drink . Thinking of you x

[82wendy in reply to Hidden]

Thanks for that asked her today of she was hungry she hasn't eaten anything now for 48 hours she's not moving any part of her body she used to fiddle with her hands but she's stopped doing this over the last couple of days.

[goldcap in reply to Hidden]

d1, I so heartily agree with what you said about the brain preparing you at the right point by removing the desire to eat & drink. I did not know about the muscle rigidity in the end but it does make perfect sense. Thank you for sharing. JG

[JanStott in reply to Hidden]

sorry I've not been on for a while to help other people suffering with PSP but been busy as now my daughter needs me as she is very poorly with Epilepsy! Hope u r well xx

[jimandsharynp]

I've found that fatigue is a major, major, major part of PSP where my wife is concerned. I took her to a wedding for four hours and then next day I could hardly get her to stand so I could transport her from place to place in our home. Two days later she was back to the way she was before the wedding. My wife goes to bed at 9:30 and gets up about 9:30 or 10:00. She also takes a 2 to 2 1/2 hour nap from 2:00 to 4:00 or 4:30. Fatigue is something that isn't discussed much in relation to PSP. I guess because it's not a bad, terrible, symptom.

Don't know how you can tell end stage and personally we aren't worrying about that. We are living one day at a time. When the "end phase" comes we will worry about it then when told by a medical professional.

Jimbo

[jimandsharynp]

With my first wife Hospice put her on a cathter and IV tube for keeping her hydrated and comfortable. No feeding and she passed on within days. Hang in there and tell the person you love them a lot.

Jimbo

[goldcap]

Jimbo, you are right fatigue is not something that is discussed much in relation to PSP but it IS one of the very first tells, often overlooked, as it could be a symptom of just about anything. I think it is always present hovering in the background overshadowed by the more debilitating ones. Good for you for taking her to the Wedding! Keep up your wonderful caregiving, but I would not rely on the "medical professionals" to tell you anything. I think they are flying blind (as well) at this point in time. Trust your own gut instincts.

Best JG

[82wendy]

I would like to thank everyone for there responses mother in law been seen by gp and end of life nurse today both agree that she may not wake up again end of life package put in place at care home today everyone being caring and thoughtful.Family trying to cover at least 12 hours plus sat holding her hand she has not moved herself for two days seems to be moving her tongue oddly no responses from her today I hope her passing is peaceful.

[82wendy]

Hi all its with great sadness today that I have to post that my mother in law June lost herfight with this dreadful disease.She had been asleep for 10 days however, sad we all feel we are relieved her suffering is over I will continue to post to help others bless you dear June hope your in a better place.

[jillannf6 in reply to 82wendy]

hi wendy

sorry for my late reply to your post about june

lol jill

hugs and xxxxx

[goldcap]

Wendy, I a sorry for your loss. An expression I once heard,"Not gone, just gone on ahead". Even though it has been a few weeks I am sure you are still processing all of this. I am sure you are being a loving support to your husband. My prayers are with all of you. Peace, GC

[dragonladynaps]

My husband began having repeated aspiration pneumonias until he finally couldn't sustain a recoupment from them. He went into respiratory distress, breathing from his stomach, woke up the next day and couldn't balance himself even to sit up let alone try to walk with his parkinson walker, but he died several days later from the pneumonia.

[jillannf6]

hi wendy and dragonladynaps

so sorry to hear of your losses of your loved ones from this PSP

and although their suffering is over you still have 2 carry on along with the family

i shall en thinking of you and yours

lol Jill

hugs and xxxx