Which part was the worst?

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Which part was the worst?

Postby pwruth » Mon Apr 13, 2009 7:02 am

Two weeks ago tonight my Mum and I slept in hospital next to my Dad. I lay awake and listened to the sound of the pneumonia that was going to take him at last. He had tried to eat dinner of hospital chocolate pudding and his swallowing had finally failed completely. He struggled and it all came back out. He died the next day "peacefully" when Mum, my sisters and I briefly left the room for the nurses to turn him. In all of his illness Dad only spent 2 of his last 3 weeks in hospital as Mum was a wonderful carer, and did her very best assisted by my sisters and I, and our husbands. My dad has 7 grandchildren, 6 of them are 3 and under and only ever knew a Poppy who struggled to walk, talk, eat etc. The eldest is 13 and has watched and understood while his Poppy's body disentegrated but his mind stayed sharp. There are so many sad memories of the last few years but I think the worst for me is that I couldn't understand what my Dad was trying to say- not the little things, or the big important things, especially at the end. I felt like I was the worst in my family at deciphering and while I would stand there trying to understand my stomach would tie up in knots and I would panic at how awful it was for him. I am so sorry Dad that you worked so hard on your speech exercises and I was still so hopeless at understanding you. But I loved you with all my heart the whole time! Dad's speech pathologist was really proud of his efforts to do the exercises and said that it really made a difference to how long he was able to communicate with us and continue swallowing. 3 nights before he died, Dad and I were having a "goodbye" talk and I really only got 1 phrase of what he was telling me.
Although I'm sure the meaning was in his poor eyes, I so wish I could have heard it properly. So for me I think that will take the longest time to get over, especially as Dad was one of those "strike up a conversation with a perfect stranger" kind of people and before PSP we could never shut him up. One other difficult aspect was our feeling of isolation within our city having only heard of one other sufferer on the Gold Coast. You are all so far away, but as I read your posts you feel so close because the things you all say are like a checklist of our experiences. I hope some of you might reply to me as I think it would also really help my Mum not to feel so alone in this time of post PSP adjustment.
PS My Dad Ron was 64...
Daughter of Ron, diagnosed PSP Feb 2007,
passed away 31/3/09
Posts: 4
Joined: Mon Apr 13, 2009 5:47 am
Location: Gold Coast,Australia

Postby eplowman » Mon Apr 13, 2009 8:54 am


It was hard watching my Rose lose control of her limbs and body, to see the impairment of short-term memory and ability to do math and "figure out" things, and it was harder yet to watch her lose her vision. But the worst hit PSP inflicted was loss of verbal communication. She and I both agreed on that (her with hand signals in response to my question). So sad.

Yes, concentrate on your mom's needs, and in that way healing will come sooner to you both, I think.

All the best,

ed p.
|My wife of 56 years was Rose b. 1930, dx 1999, symptoms from 1997; d. 06/21/08; PSP-rs autopsy confirmed.
Posts: 3659
Joined: Tue May 10, 2005 10:22 pm
Location: USA (Northern Va.)

Postby Robin » Mon Apr 13, 2009 11:26 am


My condolences on the loss of your dear father. He sounds like the sort of person who didn't care that you couldn't understand him but focused on what was important -- that you spent time with him and loved him.

Perhaps you and your mother can get some counseling. Grieving is a challenging process. There's such pain! But things do get better...eventually.

Many in our support group have read "Finding Meaning with Charles" after their loved ones died. They say it has helped them grieve. You might find that book. Author is Janet Edmunson.

There are a few other Aussies who are members here. (I think one is from Brisbane, so that's not too far from you.) And I know there are some Aussies on the Yahoo!Group PSPinformation as well.

Posts: 3845
Joined: Fri Feb 20, 2004 2:32 am
Location: USA - Northern CA

Postby Crazy Mary » Fri Apr 17, 2009 10:27 pm

pwruth,I am sorry for your loss. Your Father was ten years older than my husband Bruce who also had the gift of gab. It was hard for him and those who cared and came to see him who couldn't understand him. I was always trying my best to translate and I am sure that I got it wrong sometimes. But you know I think toward the end even though he couldn't speak he knew that we did all we could to understand the things he wanted and that was what was important,that and his knowing how much we loved him.
They say it gets easier. Somedays are I guess but not a minute goes by that I don't think about Bruce. It's an adjustment that I guess we have to go through. You go from every waking hour caring for your loved one to suddenly not. So then what do we do? Some can get help from groups I'm sure. Keeping busy helps,but I think that knowing that our loved one is no longer suffering from this horrible disease is a relief. Knowing that they are with the Lord and for me imagining Bruce playing his guitar or sitting down to a fried chicken dinner laughing and telling his jokes as he did before he was ill. That helps.
I still miss him terribly as I am sure others do their loved ones but we are left behind to go on for a reason. I think my children and his and our grandchildren are my reason. I myself would have thought that the older grandchildren would have had a harder time with his not being with us. But I think they understood and he had been sick for a long time. It is our youngest granddaughter who has asked about her Pepop being with Jesus. She has continually asked about his wedding ring which I wear around my neck. We got our rings from a friend and he was able to find a ring exactly like ours it was small but not quit small enough for her. So I put it on a chain and she now wears it and seemed satisfied that she has a ring like Pepops.
Rally around each other and your Mother now is when she needs you most. Myself I wanted to be the strong one but I think the kids know how hard this has been for me. Their being around or calling and my spending time with them and the grandchildren is helping. I don't know where I'd be right now without them. Time Faith Love and Family that is how we get through I think.
wife of Bruce 54 years old diag.2003 symptoms since 2001. Freed of PSP on Aug. 19th 2008
Crazy Mary
Posts: 1239
Joined: Tue Mar 28, 2006 5:40 am
Location: USA

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