Being dead and dying before you're dead

I may sound very horrible today because I am just so sad and mad. My sister would rather talk to a Stephen minister than to me. My sister has nothing to say to me. But she loves her weekly appointment when the Stephen minister comes in and closes the bedroom door so they can talk privately. (A Stephen minister is a Chrisian layperson trained to provide spiritual care and support to a person in distress such as illness, grief, and other terrible things.) I am outside the room, cooking dinner in the kitchen. I don't have my sister anymore as a person who is at all there for me. She has no idea of who I am or what I feel. She doesn't seem to care about anyone except how they will meet her needs. I know it's the disease. Grief is a disease too. Can't there be understanding for me also? We can't just watch a movie together or banter wittily back and forth or dream big dreams or play Scrabble. We can't say what we think or wish or are mad about or happy about. On some level does the Stephen minister get to do that? I am jealous of the Stephen minister. She says to me what a lovely person my sister is. The Stephen minister doesn't even really know her--just the shell or just the core? She never knew her healthy. Maybe she sees the essence of my sister. I have dreamed the essence of my healthy sister at night a few times. Those are wonderful moments. I cannot for the life of me imagine her dreaming the essence of me. Does the person with PSP lose the ability to be tender to a loved one? Or express appreciation or fondness?

26 Replies

  • Yes, I'm afraid that's exactly what PSP does. I'm so sorry for your sadness. 🌸

  • I'm so sorry you're having such a sh**ty day. This disease is horrible and our loved ones are gone long before they pass. Yes, you are grieving. Each time a little part of your sister disappears, you grieve some more.

    This disease does tend to make the individual more self absorbed. My husband can watch me carrying a large load and working and he will still ask me to get him something or do something, Right Now. It's difficult but don't take it personally. You are there every day, every minute. The minister is occasionally so more of a novelty. It's difficult but you are doing a great job.

  • Thank you, PSPWife. It has just been such a hard day. Tomorrow has to be better because I can't imagine my body can produce any more tears.

  • I am sorry, but yes PSP does seem to make the sufferer oblivious to their main Carer. My husband had smiles, hugs for everyone, bar me, even in his last couple of days, it was others that got a smile.

    Of course it broke my heart, but on the other hand, I was grateful to anybody and everyone, that made, how ever small, his life seems that little bit better.

    If your sister is getting comfort from this minister, so be it, at least she is some reassurance from someone. I know you would prefer it to be you, wouldn't we all. This is one huge reason, every Carer should take a step back occassionally, let others take the brunt of the caring. We all need to resume our proper roles, husband, wife, son, daughter, sister or brother, so our loved ones can recognise who we are, not the tired, frustrated, heartbroken Carer, that they see every day.

    Perhaps you should spend sometime talking to someone else as well. I did, it definitely helped.

    Lots of love


  • Thank you, Heady. I have been going strong for several weeks now, handling most things well, and today I just crashed. It just suddenly struck me wrong. My sister had no response to some exciting news I shared. As if she didn't care at all. Then lots of memories and hurts flooded into me and I cried and cried. I do have a therapist and a support group for caregivers. I do have a good friend I'll see on Tuesday for breakfast. Her husband had Parkinson's for 11 years or so. She is very compassionate and knowledgeable. He died four years ago.

  • The apparent indifference is one of the most difficult things to handle.

    My husband does have times when he is able to tell me he loves me but is often silent and apathetic. The loss of comradeship is very hard to bear.

    love from Jean xx

  • I am so sorry for what your going through, maybe your sister doesn\t want to burden you with she is feeling.

    Sounds like you were very close before PSP ruined that.

    How about talking to the Steven minister and telling him how you feel, if she is open to what he says he could be able to relay that message to her. Or talk to him about what your feeling, you are absolutely right, greif is a disease and can lead to other things if not addessed.

    Take care of YOU



  • Thank you, Paola. Maybe I need a Stephen minister for me?

  • That's a very good question... it sounds like apathy.t I don't think that there is a yes or no answer. Like so many other things with PSP not everyone shares the same experience. I know that there are some days where I really don't give a damn (DGAD) and it doesn't bother me at all !!! That's not fair to my wife or family, friends and PSW as I know that they only have my welfare in mind. I guess you would be correct in saying this is one of those DGAD days.

  • To answer your last two questions, the answer has to be yes!

    As my mother deteriorated she became accusatory and down right mean to me. She would talk to others and be nice to them but wouldn't talk to me. As her carer, I know more of what is going on than she will admit to. She doesn't understand everything and I'm not sure if it's denial or spite. It's almost like she is turning into a child with her actions.

    The one thing I do know is this is my mother and in my heart I know she does not mean to do these insensitive things to me. I really didn't understand this until I started reading the posts of others in this community. I started realizing it's the disease and not intentional.

    I get angry too because I have lost someone I talked to that completely understood me. Now I have to rely on my husband, friends and this community. This experience has changed me and I have learned to reach down into my heart for strength and pray for patience.

    I always remind myself - It can only be worse for her knowing her destiny.

  • Thank you, Ysanty.

  • That is very tough to see someone you love completely ignore you, and turn to a "stranger".

    This disease can be heartless and cruel. Maybe it's time for your own Stephen Minister. We too have them in our church, so i'm well acquainted with them. It might be helpful for you to have someone to talk with too. The time you sister is talking with her SM, do something just for you. Go outside, read a few pages of a book, anything to take advantage of the time you don't have to be available. Just remember it's not the SM that's taking your time with your sister, it's the disease. None of this is easy. You'll be in my prayers.


  • Thank you, LynnO. I am not the 24-hours care person though. I am there to cook dinner on Thursdays (other people come other days). I live just 10 blocks away from my sis. Her husband is at home with her evenings and at night. She wears a Lifeline around her neck. I stop by to check on her and visit with my niece and nephew. I chat with my sister through facebook private chat frequently though she doesn't say much at all in reply to me and never initiates any conversation unless it's for me to do something for her. I stop in to see how she's doing. Or I drive her to an appointment.

    I was doing so well emotionally for weeks and so was disappointed in myself for crashing so badly yesterday. I guess I'm being too hard on myself. Thank you for praying for me. I will pray for you, too.

  • Yes, i think you're being to hard on yourself, but we all do that too. It sound like your sister has a wonderful support group. And you all are so lucky to have each other. I hope you all can continue to support each other in caring for your sister. Thank you for your prayers too!

  • In response to the question posed at the end of your post, as a PSP sufferer, albeit not as badly affected (yet) as are so many whose careers posr on this site, I would say that, initially, the diagnosis, or rather my reaction to it brought out the most selfish aspects of my chatacter and I thought only of myself and my distress and needs, nowadays, having accepted the position so that my main concern is the effect all this has on my husband who is 7 years older than I am. He does everything he can to help me, to think of things we can do together and who will listen to me when I get very down, so much so that he doesn't arrange to go out without me until he is sure that I am perfectly happy with everything I,am likely to need close by. Initially this really annoyed me and I made that clear (!) but have come to realise that this is the only way he can cope with what is happening to me and I now appreciate all that he is and does.

    I have been helped so much by reading the posts of those on this site who are caring for partners and relatives whose condition are so much more advanced than mine. To read about the effects of the burdens you all carry made me think about your side of this dratted illness and I admire you all so much!!

    THANK YOU !!!!!

  • Patienan,

    You sound like a very selfless person. My husband is in the advanced stages of PSP. He is always oblivious to what I am doing and demands that I do three things at once! He can be critical of my efforts. However, he is still loving and kind. He often thanks me for the care I give him and tells me how much he loves me.

    I have a feeling that your heart is similar to his. Stay strong. Who knows, maybe there will be a scientific breakthrough soon and you will not have to experience what our family members are currently facing.

    I admire you for your courage. As hard as it is to care for someone with PSP, I certainly wouldn't trade places with anyone else with this disease. You are the true heroes who make the very best of a horrible situation.

  • They are the same people even though they don't always show it it's not their fault , if it's at all possible I love my husband more and more each day with very little feedback.

  • Cabbagecottage, that's one of the sweetest things I've heard in a long time, the last half of what you said. I feel the same about my dad. I always knew he was brave and strong. I always knew I loved him but being one of his caretakers these last 17 months has made me realize all those feelings have only increased. I'd like to tell him that but I'd cry so hard and that would upset him more than help him. I don't think I could say it to him without the tears, such a wimp. Anyway, keeping you in my prayers as I do all of us dealing with the monster psp.

  • thank you .. . Do tell him one day when you feel up to it .... one day u might regret you hadn't .

    We are not usually over soppy .. Lol. .. But when my mum had a stroke I use to say to her I a. So sorry mum I do love you but I can't fix this fix this for you .

    It use to be my little joke if something went wrong or was needed would tell her don't worry mum I'll fix it . Came the day though when I couldn't

  • Thank you Cabbage! I hope that I do tell him some things as you said. I'm sure I'll regret it if I don't. You sound like a super wonderful daughter. Your parents raised you well.

  • It's psp. It's not your dear sister. Remember her when she wasn't afflicted with this dreadful disease, what you shared together, the laughs and fun times. She can't help it. Many of us are in the same boat and it is distressing. Our loved one is there physically but that's all. Be strong. God bless you both. Marie

  • Thank you, Marie. I appreciate your saying "It's not your dear sister." My "dear sister." If only I could keep that phrase in my mind all the time about her. Sometimes when I'm with her though I really want to talk to the OLD dear sister. Not this NEW one. I have to say "dear." That's an important concept, I think.

  • Apathy does seem to be a common thread with PSP. My father-in-law was so blessed that my mother-in-law was there for him every day...even when she had to move him to a care center. She was there every day, for most of the day. She made sure he had every comfort he could have and knew she loved him. In return, he ignored her, told her to 'get out', accused her of having an affair....I could go on and on. Until the last month or so, when he didn't even respond to her at all. These are behaviors she NEVER saw during their 47 years of marriage, and it tore her apart. When I, or others, came to visit, we didn't get much negativity. But, she sure did. We tried to remind her that this isn't really him at all, but the disease. She understood this on some level, but words still hurt. He passed away on Sunday. It will take some time to move past the last few years, and remember him for who he really was. But, time is a healer. I am so sorry that you are losing your sister. I like the idea of a Stephen Minister for you, too. Maybe she is putting some work into her faith now, as part of her understanding of this disease.

  • Yep


  • I really feel for you. I know that my mum lost her empathy for us, her family. Before PSP she was so understanding and the person I went to with my problems, but as PSP got worse Mum lost her ability to listen. The disease takes over, it's incredibly hard to see someone personality change so much. The only thing I can say is don t forget it's the disease. It's important that you have some support, who is your Stephen minister? We all need someone to talk to, especially with this disease. Have you thought about counselling? I think you would find it very helpful. Best wishes to you and your sister.

  • I think my Dad went through a phase in his psp progression when he wasn't always nice to his wife of 30 years. To my thinking, it's a toxic growth on their brain and yes, it WILL cause all sorts of reactions that they have no control over. I've read it affects impulse control and Daddy went through that too, especially during his many months of hard falls backwards, when as soon as I left the room he'd defiantly stand up from his seated position knowing he was no longer able to do that on his own. If I turned back around real quick, I'd catch him and have to scold him like I was the parent and he was the kid.

    So Pagesofwords, if you ask me, it truly IS your sister's disease and not HER that's hurting your feelings. AND, like with little children who act out towards the parent because they're SO secure in that parent's love, your sister knows deep in her heart and mind that you'll always love her no matter what! You're to be commended for that great genuine love you have for your sister.

    Also, before Daddy showed any signs of psp, around 10-12 years ago, when I'd come to his house with my husband and young daughter to visit about once a month for a weekend, (we lived out of town,) he'd been retired a few years and had developed the hobby of playing card games online with others who he didn't know, just for fun and to pass the time. We'd come in and he'd greet us but he'd keep playing and that just wasn't really like him. I remember almost said something to him, sort of in jest, like, so you're not even going to stop playing your games to look at us? but I respected his choice to play and talk to us and refrained from even teasing him about it. i think now though that was the very first sign, that lack of showing as much care toward me and his granddaughter as usual, almost as much but not quite as much. I did notice even though it was a subtle thing.

    Now I'm babbling haha what else is new right! I tend to go on and on, on this forum. Saying prayers for us all.

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