Feeling numb and guilty. When will this every end? Overwhelming and going through the motions. Charles gets tired and grouchy in the evening but only with me. During the day he tries to communicate with others but by the end of the day he says he doesn't want to. Wants quiet.
Unfortunately people visit and stop by, from Chaplain, nurse, volunteers, caregivers and family. I can't send them away but am taking the brunt of it all.
Need some advice here. I'm at a loss.
Cuttercat
I know it's lonely for you, but if he wants quiet in the evenings, give him quiet. Use the quiet time for yourself. Without guilt. Some days we all just go through the motions.
You must retain some of your own independence, and not feel guilty, there is always more than one victim in all this. Unfortunately, some parkinson's patients can only think of themselves, not the damage they do to the people closest to them. This is perfectly understandable,given the symptoms of this illness. Changing perceptions is almost impossible, good luck to you.
CC,
From all of the people stopping by, It sounds like you are getting assistance...Is he on hospice? we are now getting the very same type of people since being on this the last couple of weeks.
I feel that you are still not used to being home and not at work and if you just received hospice it can be very overwhelming....but they will work with you and give you a schedule that you can handle.... When you have sorted all of this out you may find more solace than guilt. If Charles is tired and grouchy , then leave him alone.....What's that phrase "you only hurt the one you love"? It may be very hard for him to not be able to say the things he wants to say to you so he gets mad ....and it comes out directed at you.....crap! I remember feeling very hurt when B first started "ignoring" me....he would not talk to me....he'd do his best to talk to others but not me.....then he'd do his best to talk to others clearly but to me it was like trying to decipher a drunken sailor....and now , he cannot talk to any of us... very limited forms of communication....though he's getting better with the letter board again....
Don't beat yourself up over the guilt, I thought it was the end a couple a weeks ago and was weirdly let down when it was not ....I felt guilt to be sure, I felt confused; I didn't want him to die, but I did expect it...Now we are back to one day at a time, with lots of people in and out and with him with much less quality of life but I am thankful for what we have.....
Take you a long walk....get away from PSP for awhile
HUGS
AVB
Yep, you said it. We are pretty much at the same stages you and I.
I did go to lunch with a friend yesterday and it felt strange to be normal for awhile.
It's tru you only hurt the one you love and when it's late in the day he's tired.
One day at a time, yes. I hear it all the time and I'm trying, trying.
Thanks!
Cuttercat
Sorry to hear but do understand your frustration. You must make the decisions to protect your health . I myself are very clear on the times when my guy is up to doing thing because if I don't I end up paying for it in so many ways. Unless all these people are willing to take over and give you a break you have to stand firm for you and your husband. Take care of yourself
Hope it helps
Dee on BC
Hi
I promise you this will pass, you reach acceptance , I think the whole process of this s**t is mourning so you visit anger, denial ,pain and finally this limbo prior to actual loss, I will be honest I want it to end as their suffering is immense but dread the day.
Get help my darling, I get away about every ten weeks, we have live in care then and I find that keeps me going.
Try to smile
Julie x
You said it prefectly! Limbo, yes that's it. And though I want him to not suffer I dread the day as well. One side wants to keep him with me, the other wants him to have peace. Aaach.
I smile alot, believe me and I try to cry alone so he won't hear or see me.
Thanks, Julie.
Cuttercat
Cuttercat the hospice have told me the reason our loved ones behave like this with us is because they can be 100% natural with us! But with others they try n put an act on.
I know it's bloody hard because we experience the same thing daily with Dad! It's a killer all round!
Hugs x
This behaviour is something that happens in life anyway, every one put on a brave face.I dont know how I will react when Ivor gets to that stage. Probably by ignoring him , and telling him to (kiss my a..e ) under my breath .something im good at had plenty of practice over the last sixty years...Brenda xx
Plus Cuttercat of course they want quiet, they are very ill. 😓
They must be so tired, angry, depressed and all the other shit emotions Psp brings! I know my Dad is all of these! X
I find the same thing with Chris.
Ignores me but has responded to others.
Also, when he gets tired he is really exhausted - can hardly move anything.
x
Hi Cuttercat, I see this with my mom and dad, he has had many strokes and depends on my mom daily. He is mobile but he can't speak and walks very slowly. He gets very upset with my mom, now does my mom treat him like a baby most days???? YES, to a fault. SO, like a child he reacts only to her. When we go by he is all smiles and hugs.
BUT, when my moms goes out to run errands, he is at the front door waiting for her like a lost puppy. When she had heart surgery (before his last stroke) and mom was in the hospital for a week, he could not take going so I did. He insisted I stop by every morning and he would have her meals, snacks and friut ready in containers for her. You see, my dad never enetered the kitchen, that was moms domain, he couldnt boil water, but when the fear of losing her was there he changed.
I dont mean to ramble on, what I mean to say is, take some time away find yourself and come back refreshed. Absence makes the heart grow fonder, and makes for a happy carer too
Hugs
Paola
It's tough isn't it Cuttercat, not having your spouse/partner chat with you makes you feel so lonely and when they do try it is so difficult to make sense of what they are saying. I have had different family visitors staying over and seeing to them and Ben has left me totally exhausted, poor Ben has suffered my short fuse today as I tidy up and change beds after 10 days of trying to entertain. My dear little grandchildren were here with their mum for 5 nights and they are really early risers and it full steam ahead until they go to bed at 7pm, it was so lovely to have them but I'm paying for it now. I'm feeling very lonely today after having folk around to chat to and share mealtimes. I hate this wretched disease more than I can say. Try to get some down time if possible, I know it's easier said than done.
Love Kate xx
In the same boat, truly. I love you for saying what I can't seem to.
Roller coaster and all Charles and I want is peace and time together.
Oh well.
Cuttercat
It's so weird Kb....no one has ever visited us nor have we been visitors. Now that the end is near, we have had visitors, both strangers and old friends, in our house to the point of exhaustion! Even my kids are constantly here. Now ask me if I would want the opposite and I'd say HECK NO! but it is tiring.....The key is not to worry too much about it all.....if they think the house needs cleaning , well step aside and let them! hahahah
Get some rest love your company
AVB
Hi CC, if possible, try and get people to say when they are coming, the professionals, I mean. Set up no-go times, to make sure he gets some sleep. Towards the end, I use to put Steves recliner chair back, put a blanket it over him, so he could sleep. Just like you would with a young baby.
Ditch the guilt!!!! Think how much you are doing for Charles instead. These are extremely trying times, make sure you get as much rest as possible. Try and find a counsellor, to take over your thoughts and fears. It certainly helped me through those hard days and is still helping now.
AND go out for lunch again with your friend as soon as you can. This "normal" feeling is essential to help you cope with caring for Charles.
Sending big hug and much love
Lots of love
Anne
Oh Heady, I was wishing you would answer and you did. I know it must be hard coming back here to all of us but I certainly do need your sage advice.
Family visit just ended and it was wonderful. Charles enjoyed it and did well today.He was happy to have them and the weather was glorious so we did sit outside. We just sat around the house talking softly and reminscing. It was so nice. Sad all around but good.
Quiet again tomorrow and looking forward to it. I'll take your advice and remember we are in this together, two not one.
Love to you!
Loesje
Guilt doesn't help either of you. It is merely an emotion motivation you to do all that you can and you probably already are. These deeply wired emotional responses can get in the way sometimes. So please look after yourself too!
Its damned tough!
I wish you and Charles the best that can be.
Warmly
Kevin
Hi Cuttercat. I feel the same as you, my husband is all nice and tries to chat to people that come by, then when I speak to him once everyone has gone, he either buts my head off, or just doesn't reply, but then later thanks me for all I do. Can be upsetting.
We are going for our 3 month neurologist appointment today so he is very stressed, as he doesn't like leaving home.
Take care love and hugs
H x
Hows it going Cuttercat?
I hope things have improved a little.
We're thinking of you
Warmly
Kevin
Doing better. Another stable period going downhill in stages, you know how that is. Many people kind and helpful but still having a difficult time handling.
Thank you for asking, Kevin, means a great deal to me.
Cuttercat
So glad its a bit better. We seem to go in cycles... Its good here too at the moment.
Yes, always the 'downhill in stages'.
Wishing you both the best
Kevin
I think its so easy to lose your sense of self. All the focus is on them. You're not only there for them. You matter too.
Its important to make personal space.
I know the aim but don't always manage it !
love, Jean x
But now it's another decline so I'll put life on hold for now. It's enough that I have friends who visit, it makes things a little easier. I look at the future when there will be time galore and I'll be lonely and sad. Either way it's a no win situation. This PSP is really .....Yuck.
Cuttercat
Please . I need help.
Not opened bowel for 2 weeks 
