ANOTHER STATISTIC

My lovely partner Derek passed away at home late on Saturday afternoon. He was only formally diagnosed with possible PSP in April of last year, having previously been diagnosed with stroke damage. He became bed bound from May and had declined quickly since then. He was 76. Our experience with this awful disease hasn't been good as I've battled against a brick wall with the medical profession all the way to get help for him. It has felt like a journey of isolation for me. My friends, district nurses and Derek's family have been there for him and me all the way, so a big thanks to them and also to everyone on this site, as in times of desperation this has been my only refuge. Also a big thank you to our local hospice who provided the help in the last few days of his life to make his passing a peaceful one. The only thing holding me together is the knowledge that he is now in a much better place without all the suffering. We all miss him terribly.

Take care everyone.

Love Jan

30 Replies

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  • Jan, I am so very sorry to hear this news. How unexpected as well as you were saying he has been stable recently My thoughts are with you and Derek's family. You have done a wonderful thing by caring for him to the end. It is a blessing to be relieved of the suffering of PSP, there is no doubt of that.

    Love

    Cate

    x

  • Thanks Cate, it was unexpected to me as well. He had improved a little since Christmas and was back at a stage where he would answer me if I spoke to him and amazingly, sometimes he would initiate conversation. He began interacting with his grand children again but one morning a couple of weeks ago he woke up and couldn't speak, only noises came out and couldn't swallow either - is that PSP or stroke as we all know PSP can mimic stroke? After that there was little hope and we made him as comfortable as we could.

    I wish you and your family well, let us know what April brings!

    Love Jan x

  • I am so sorry to hear about Derek. Everything you mentioned has happened to mum so I would say it is classic PSP.After a pleasant Christmas Mum woke up the day after Boxing day unable to move anything except her eyelids and although she picked up enough to eat she never got out of bed again and apart from an amazing day 3 weeks ago when she could talk all day in answer to comments she never spoke again after that day. Mum passed last Monday, 25th Feb. It was a merciful release, she was 77

  • I've been reading your blogs a while now and have thought how similar our experiences have been. I had to laugh at a blog you did the other day about the things you won't miss, I am with you every step of the way there. How are you doing? I am having a rubbish day, I keep going down the "what if" route which goes nowhere. Got the tissues out a lot today!!

  • I am up and down really. Because I went in every day I know I did my best for mum and it stops me feeling guilty but the loss attacks me when I least expect it. As all my spare time for the last 2 and a half years was with mum I have had to fill all the space. I have a very tidy house! The worst thing of the whole illness was when Mum couldn't speak at all anymore. The day before she went she was gazing at me and tears were falling from her eyes. She had her dark glasses on and the curtains were pulled so it wasn't the light causing it. Yes having to carry tissues with me as it's all so random. I am just so glad she is not suffering anymore. If you feel sad, think of the good times and I am sending some spare hugs for emergencies xxxxx

    Dianne

  • Hi jan im very sorry to hear about your sad loss of derek,it must ve been very difficult for you as you dont appear to have got the help you should have,my thoughts are with you at this s

    sad time.

    regards wendy

  • Thank you Wendy, am trying to put all the bad stuff behind me now.

    Kind regards

    Jan

  • so sorry for your loss, help was late coming to you, but good to know you had support towards the end

    kay x

  • Hello Kay,

    Thank you for your kind words.

    Please don't give up the CHC fight for Frank.

    Jan x

  • I AM SO SORRY NOT TO HAVE KNOWN YOU PRIOR TO DEREK'S PASSING BUT I WAS ONLY DXD IN NOVEMBER - SO ONLY CANE TO THIS SITE FAIRLY RECENTLY - YOU HAVE MY DEEPEST SYMPATHY - AND DO HOPE YOU CONTINUE TO POST

    LOVE AND KIND GOOD WISHES

    SHA XX

  • Hello Sha,

    I believe our problem stemmed from Derek being diagnosed in the advanced stages of PSP that we were always playing catch up with the Social Care team. When we needed help we needed it there and then as by the time the system reacted he was long past that particular "help".

    Good luck to you.

    Jan x

  • You are in our thoughts. x

  • Thank you, best wishes to you and your mum.

    Jan x

  • Hi Jan , my deepest sympathy to you on the loss of your beloved Derek , you and your family are in my thought's and prayers .... Love and hugs from Ireland . xxxx

  • Hi Aine,

    Thank you. No doubt you are still feeling the loss of your brother.

    Love and hugs to you in Ireland x

  • I am Jan, we were very close , at first when J.J. passed away , we felt such relief , but I miss him so so much as time goes on , But I feel him with me keeping me strong every day .. xxxx

  • Jan,

    I am so sorry to hear of your loss. It is very difficult for us to lose the one we love (as I did with my Dad in December) but for Derek and my Dad I believe they have finally found true peace.

    My thoughts and prayers are with you and family members. Please take care of yourself.

    Hugs

    DeeDee

  • Thank you very much DeeDee for your thoughts and prayers, you too must still be feeling the loss of your Dad.

    We'll keep them safe in our hearts.

    Jan x

  • Jan, I am so sorry for your loss. Yes, he is in a better place, but it doesn't make you miss him less. Take care and know that the rest of us will keep you in our hearts.

    Blessings,

    Rosemarie

  • Hi Rosemarie, thank you for this. I certainly won't miss making the endless stream of calls made on his behalf trying to get things in place for him. Keep up your strength and resolve in your battle.

    Jan x

  • Jan, Sorry to hear of your loss. It is difficult often to get the help or the answers that we caregivers need. Thank God for this site and others like it. Peace my friend.

    Jimbo

  • Hi Jimbo,

    Yes, thank God for this site. By the way, freezing gait was the first symptom Derek ever had in 2006 and it was quite a scary moment for me as we were walking in a wood, with no easy way out and a mile and a half from anywhere. A few years on this changed to freezing in doorways, etc. and by then we just took a deep breath, waited for a minute and tried again - it usually worked.

    Take care, Jan

  • Jay,

    I add my condolences to those of all the others who have posted here. Wishing you, your family and friends comfort and strength at this difficult time.

    h

  • Thank you and good luck with the bike ride, I will be looking to see how you and Kathy do.

    Best wishes

    Jan

  • Dear Jan,

    I'm so sorry to hear about Derek, at least he is at peace from this dreadful condition.

    I feel so sad for you having received little support just at a time when there are enough anxieties coping with psp without having to fight for assistance well.

    Take care and time for yourself.

    Peter3.

  • I am so sorry to hear of your Partner's passing. I was diagnosed 6 months ago. I empathize with your feelings of isolation; it is an isolating journey and is frustrating in itself it is that way. I am fortunate enough to have an excellent Neurologist so I feel extremely. It's the isolation I feel within my circle of friends and family that leaves me feeling like I keep hitting a brick wall. Can't decide if they're in selective denial, won't leave their narrow comfort zones, or just don't care.

    Derek was very blessed to have you as a dedicated, loving partner; never forget that for a second. Both of you will be in my thoughts and prayers for a long time to come.

    Respectfully,

    Judy Johnson

  • Hi Judy,

    I was sorry to read of your diagnosis some while ago. I wonder sometimes when family and friends look up PSP on line (as they usually do) their reaction is generally OMG! and take a step back, they pussy foot around you wondering how you are going to cope.

    I hate to think you are going through this journey without somone to be there with you.

    Kind regards and take care.

    Jan

  • Thanks, Jan, this is truly what's happening outside of my Neuro. I do 'muffle it' for lack of a better expression when it comes to my girls. Had the 1st serious talk shortly after my diagnosis; kept the info simple, have lots of functional years left, and promised them I'd do all I can to slow this down. But my symptoms are increasing & I can see their concern increasing, but keep assuring them the best I can, and to allow themselves to be fun, young adults the best the can.

    I do have my best friend, Connie, who has my power of attorney. Best friends since '83. Like I'm some people's rock, she's mine. Salt of the earth and not easily shook, tho I acknowledge to her I know this is hard on her tho she's reluctant to admit it. Unfortunately, she lives out of state but we talk often.

    You are so spot-on with the "OMG" reaction, then pussy-foot around it, waiting to see I how I deal with it...that way they won't have to, is the only conclusion I've come to. Seriously. People's comfort levels are so small.

    So over these last 6 months, I feel like I'm living on the outside looking in or vice versa. The silence is deafening. No one brings it up unless I do, then they look uncomfortable, and go "uh, uh" a lot. Frustrating. Don't ask questions. Just pretend it's not happening, tho a few of my symptoms have been quite noticeable at get-togethers. Just look past me, move around the room, etc.

    Now I'm not demonizing them, but I just don't get it. Or maybe the problem is I do. It's a big generalization, and unfair to some, but I think people have become more self-involved than ever, tend to numb their emotions, and have forgotten or never learned to extend themselves. Or, if they do feel poorly about me/my situation, are afraid to show their own vulnerability by expressing their emotions.

    But...then I end up asking myself why I'm spending good energy I could use taking better care of myself on trying to figure out why so much obvious indifference. Who's kookier?:):) Have to laugh at myself or I'll go nuts.

    On a final note...earlier this week...seriously...my Mother brought a newspaper article to my attention about a local (but big) company called Medtronics developing a new device (deep brain stimulation) for people with Parkinson's; she was trying to be helpful, which was nice, but...

    ...when I explained (again!) that I don't have the Parkinson's the were referring to, she said "Well, what the hell do you have?!". I have explained, explained, and re-explained what I have to her multiple times to her over the past 6 months. After the "OMG" initial reaction, she did seem interested and caring, so I've reinvented the wheel numerous times for her so she gets it; the difference between Parkinson's & Parkinson's Plus & PSP is a disorder under the Plus umbrella, and on and on it goes. She's 75 but does not have cognition problems. I've given her things to read. I don't know what else to do.

    So, hopefully for the last time by my choice, I patiently explained it to her again. I cannot keep doing this. Putting forth this continued effort to 'make' her understand, or anyone else for that matter. What finally did make some sense was when I talked to my Sister, and she told me "she just really doesn't want to deal with it." Okay; enough said.

    But, I'm getting really, really lonely and feel isolated. I've noticed at family gatherings to which I'm always invited a long with my girls, I haven't been. They're not oversights. And I'm not saying they're meant to be malicious either. It feels more a matter of "What I can't see, I can ignore. What I can't hear, I can ignore. And if I can ignore, I can't feel.".

    What hurts the worst, tho, is knowing my lovely young daughters are being disincluded by default. Life isn't fair, I know, but there's just no excuse for that.

    Sorry for going on and on as I have. Loneliess and isolation are as hard to deal with as the PSP. Yes, I'm in therapy, thank God for that. But she doesn't have any answers for peoples behaviors in situations like this other than they're scared or truly don't care. Not very comforting, but I guess that's the reality. At least in some cases.

  • Hi Judy,

    I know you'll be up now! I know the loneliness and isolation as a carer but it must be very difficult for you. Don't worry about "going on" that's just what this site is about.

    I wish you courage and fortitude on your journey.

    Take care of yourself!

    Jan

  • Thanks, Jan. Take good care of yourself as well.

    Judy

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