How do you know if they are in the end stage? My husband is now holding his right arm across his body real stiff. He also is not talking at all now and seems to be very cranky.
Just wondering what the last stage is like, hope it doesn’t up set anyone.
Hi Penny,It really is a question of 'How long is a piece of string!' Nobody is the same!
I took notes of hubby's small changes in demeanor, longer than usual afternoon naps, little spaced out events, changes to ability to sit straight, hold a spoon, drink liquid, any little change. It began to form a pattern, and in his case it showed a fast downward curve.
If you do this you may find there is a timeline pattern which will vary in its descent. It does not give you any greater indication, tho, as to when!
If you can put aside your tiredness and frustration, try to do so - and give love and care to that grumpy man and try and show you understand what is happening to him, and that you still love who he is.
Maybe try and broach the subject of his dying and that you will be there all the way. Once you are both on the same page, then it will make communication and acceptance so much easier.
If you can help him to a peaceful self, then he may become more accepting ( if ever that is possible!) of his state of health, and diminish the obvious anger and frustration at what is happening to him.
Bring family in to see him in small doses so he is not worn out; introduce calm into his surroundings, music if he likes it; make sure you have 'timeout' for you and that he is well cared for by others he is comfortable with.
Make him feel loved. Keep him at home, if possible. That way, how and when he is cared for is still under your control.
I still can't answer your question! It will take patience and love on your part, and you will both get to that end point eventually. Or it may be a sudden event - pneumonia caused by poor swallow reflex, sudden heart failure - nothing can prepare you.
You only have to read the life events here to understand how variable it can be. Your doctor is trying to prepare you, but even he doesn't know how long that will take.
Make your peace with your loved one, and we will all be there to support you however long that journey takes.
Big hug
Jen XXX
Thank you so much, this was beautiful and I could tell it came from your heart.
Hello thereI think Jen has summed it up pretty well. Everyone is different with different timescales.
My Chris fought off several chest infections/aspiration pneumonia events, was up in his chair one day and took to his bed the next and didn't get up again. That was about two weeks before the end. We had tremendous support from our wonderful GP, lovely District Nurses and brilliant carers. He wasn't expected to make Christmas 2019 but died the day after Boxing day.
Thinking of you at this time, keep on keeping on.
Anne
Like what was mentioned everyone is different that's why it's so hard to know where our loved ones are in this disease. I found alot of changes in my loved ones behavior came from she knew she lost control to beat this disease. So I believe it's the fear that sets up in their brian. So we had a long conversation about how she deserves to be at peace with what is going on. I explained instead of living in fear let's live in the moment. And it's important to let them know we will be there to the end. Talking about the highlights of life with them helps sooth them. I also explained we will all face death one day and who knows when that one day will be. Also to reinsurer them we will be ok when their time on earth is done. So basically lots of reinsurance from the ones they love. My loved one has been in this angry rage for a few months now every little thing will trigger her. This is the most difficult stage in my opinion. I just finally looked at her when she was being so evil and said you know what no matter how well you are taking care of we can't stop the train. And reminded her how hard we have fought with her for answers/cures. She is starting to settle down but it's been a though road for sure. Good luck and just breathe.
Nearing end stage?
End stage of PSP
We are at \"that\" stage 😢
The End
Last stages
