Just reaching out

My step-dad was diagnosed with PSP 1 year ago. Before that time, there were various diagnoses including PD. After doing a lot of research on my own, I think now that he actually developed the disease about 7 years ago. I decided a few moments ago to do a new Web search and found a conversation from your community that touched my heart. I can't seem to find it again, or I would have posted there. Septembe4 2012, Dad had a particularly nasty fall and brain bleed after which he spent 10 days in the hospital and was released to a rehab center for about 3 weeks. Subsequently he was released home under hospice care last October. He's obviously getting so very much weaker. My husband has been living with my folks for the last 10 weeks because Mom isn't able to manage Dad on her own. She is suffering from extreme caregiver fatigue so that I'm concerned about her ability to recover her own health once Dad is gone. They have, fortunately, already made all end-of-life decisions; there will be no nursing home, hospital, or feeding tubes.

It has been about 3 months since he's been able to lift his arms to feed himself. He chokes a lot after eating. He still is continent, although it takes my husband and Mom to lift him from the chair to the wheelchair to the commode or toilet and then reverse the process. His eating habits are totally bizarre -- changes in lifelong tastes. Sometimes he eats next to nothing, then will eat an entire sandwich and package of french fries. He has visibly weakened over the last three weeks. The last week he has been on a popsicle run -- yesterday I think he had 10. I think his body is hydrating itself in this manner.

He sleeps a lot. Sometimes 20 hours a day or more. Quite often his mouth drops open as if his muscles can't hold his jaw closed. It's freaky how often his eyes stay open but he appears to be asleep. We use eye drops to help keep his eyes lubricated. Since I'm not there but once a week, usually, I'm finding it extremely difficult to understand when he tries to talk. Usually it's only a few words, and more guttural sounds than anything. Week before last he was put on 2L O2 because his circulation is declining and his fingers and toes were turning dark, even then I thought his breathing was very labored and expect it to need to be increased soon.

During his last fall a year ago, he lost about 20 years of short-term memory that has never been recovered, but otherwise seems to be cognitively aware. He has developed increasing wilder mood swings. He has a sense of humor for the first time in the 40 years I've known him, but his anger and frustration is becoming greater and more volatile.

I feel like we are in the final stages, but I confess it often comes over me that I wish it would be over. I know that he is going to die, but I'm afraid that if my Mom declines too much further that I may lose her, too. Then I feel so guilty for feeling that way. It's been hard having my husband gone for the last 10 weeks as well, although God bless him for his willingness and ability to do so. I see them all on weekends. I know that God knows best and that it's better we can't see into the future, but it's hard.

Cindy

27 Replies

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  • Hi cdhollingsworth

    My husband is jut about in the same position as your step-dad so I think I know what you're going through. My husband was diagnosed in 2010 but the probable onset was 2006.

    There is no medical help here in the UK, by which I mean that there is no treatment and no cure and the only thing we can do is manage the symptoms as and when they occur. My husband's speech is also very guttural and it is difficult to understand him now, he also coughs and chokes a lot, the consistency of his food does not make any difference, he can choke on oatmeal but copes with a soft boiled egg ok. He often goes into what I call his dementia mode and can be very incoherent.

    I do get help

    from carers and the OT has organised aids to help us to move and bathe him, but the bulk of the caring is on me and it can be very hard at times. We are both on our seventies and the burden of caring is becoming heavier each day.

    He does not want to be here anymore and just wants to die, I can understand that perfectly, he is just existing. He has been a fit healthy man all his life and PSP is a cruel and horrible thing to have happened to him or anybody. We do not believe in a god but respect other peoples' beliefs if they can take comfort in them.

    Take care

    Dorothy Thompson

  • Thanks, Dorothy. It does sound very similar. It is such a strange disease -- as you say, one minute to the next, different foods can work or not. Mom and dad are both 73 this year. Such a young age to be so beaten down. He also has "dementia mode."

    I wouldn't wish this experience on anyone, ever, but it is a relief to be able to talk to others who understand.

    Cindy

  • I wish I could give you both some of my energy and practical help, at the end of the day that is what one needs, so that one is strong enough to cope with the terrible toll it takes on ones emotions, seeing some one that one loves suffering so. I wish you both much love.

    Flicka x

  • Thanks a bunch! It's easy to get so caught in the day-to-day that I forget to look outside myself and know that others care -- if I take the time to let them know I need it.

  • So sorry to hear your stories you have my deepest sympathies

    I took not well in 2009 and after various prognosis I was diagnosed in 2012 with PSP I was 41 when I got this diagnosis I am now 18 months on and have problems with incontinince bladder bowel now choking on several foods as neck muscles seem to give up or do their own thing bad facial spasms registered partially sighted as can't open my eyes on my own they suit themselves have had Botox injections to no avail my cognitive and behaviour mood have all deteriated in the last few months

    Memory word finding understanding instruction conversation feeling like the back of the brain is dying off at times lucky to get fours a night sleep

    And at times can't mobilise limbs suffer weakness in arms

    Compiled all together feel your just existing

    But I have a loving caring wife and daughters who look after me greatly

    Very difficult when you've worked hard all your life in a successful career to lose it all to this strange disease so try and make the most of the better days and ride out the bad ones

    We've made decisions as to what we will do as it progresses whilst I am still able to do so

    Stay strong and take care

  • Keith, I'm sorry you're going through this, and at such a young age. I appreciate knowing your insight. My dad never talks about how he feels so we can only judge by what we see. PSP does seem to focus in on the extremities and neck muscles first. Dad finally admitted a while back that he couldn't see the the TV although he "watches" it.

  • Thank you Cindy stay strong

  • Hi keith..Good to hear your story and I feel for you,My husband Frank is the very same but he is doing his best....it is a terrible illness.Thoughts are with you.x

  • Hi mamapuskins its all we can do thinking of you both thank you

  • Hello Cindy

    Firstly, reading your account has brought back memories of my father who lost his battle a few weeks ago. He was burried on Thursday. He was a brave man with huge amount of integrity and courage. In the end with the help of the district nurses dad died at home and was at peace. The pain has now gone. His family was around him at this special time. Like you, our dad had made an end of life care plan which we stuck to. This has helped us grieve as we have honoured his wishes. Although he has gone and we will miss him, our mother although very tired realises she didn't want to see him this way. It is not what our dad would have wanted. We had the opportunity to say thank you and goodbye to our dad in the final stages and he was able to acknowledge us.

    Cindy, like you I would read this blog and take great solace from the other experiences from carers, their family members and I suppose more importantly the other sufferers just like Keith. Your step dad, my dad and these people are true legends as they have gone on a more difficult journey than anyone else. Through support and help our mothers who are also heroes will no doubt learn to cope with the inevitable. They have no choice… The happy memories, conversations and maybe our faith will guide us through the difficult time. You are not alone…

    Thinking of you.

    TheSon.

  • That is so moving.it was good that your dad died at home and at peace...I feel that my husband Frank would like the same but I doubt my ability to be able to keep going as I am very tired now have been caring for Frank now for two years and he has had this for longer but able to get around three or four years ago....now he is very very slow and weak.....I take courage from all the posts and feel supported by you all. Thank you.

  • Mamapuskins

    You are indeed a very strong lady for firstly looking after a person who is very ill. We wish Frank and your family the very best. My mother has just read your blog and her heart has gone out to you and your family. Like you, my mother felt that she could not cope anymore and at times felt that dad may have been better in hospital or a nursing home. However she found strength from somewhere to keep on going and like I said with the help of the carers, district nurses dad got his wish to die at home surrounded by his family. We as a family are very proud of our mother and despite the agonising dilemma's she faced she is so glad that her determination and true grit allowed her to continue to care for dad at home. Like our mum she should be a saint Mamapuskins so should you be. Our thoughts are prayers are with you at this time. Best of luck to Frank.

    The Son

  • What a WONDERFUL post, TheSon, and I'm so sorry for your loss, but glad that your dad's sufferings are at last over.

  • Hi Cindy...So good to read your post and to hear the progress of the disease p s p it is a wicked illness and takes its tole on all the family.Frank {my husband}Has been diagonised two years ago on January 4th....although like your experience I believe he has it a lot longer.....He finds it hard to swallow and he chokes a lot...sleep is very poor even though he takes a sleeping pill prescribed by his Doctor.He walks around the top of the house a lot....in the middle of the night....he also has early symptons of dementia which is not great. Walking is poor balance awful....very incontinent and I find that hard all the time.I have three adult children and they are really helpful and it hurts them too to see their Dad going downhill rapidly.I have booked Frank into a nursing home near by....as I am afraid, like your mum, that I wont be able to continue on...it is very wearing and exchausting I am very tired lately even though I have care workers coming in in the morning time to get him up out of bed and wash him...and lunch time to help him eat....and night time to get him ready for bed.So its all go.

    Tks for being there.x

  • Cindy,

    My mother was diagnosed about a year ago and like your step dad we think she probably had PSP for many years before that and is now in or fast approaching the advanced stages. My mother is unable to walk, can only stand if pulled up and held, she has some incontience and cannot feed herself. She is starting to lose the ability to swallow and communicate. My mother went into a nursing home, in September last year and within hours had fallen and cut her head badly. However, this triggered extensive investigations and she was ultimately diagnosed with PSP. Up until that point my brother had been her carer at home and I was only able to visit a couple of afternoons a week. I admire greatly the families that continue to care for their loved ones at home. I had a long period of coming to terms with her illness as I found it so distressing to witness, however, despite her current state of health I am dealing with things better now, although I too have feelings of wishing it was over for her. I think my main message is please don't feel guilty. We all do our best with the limitations that are placed on us by our own families, work, time and even our capacity to deal with such a debilitating and distressing illness in a family member.

    Thank you for your post, I have found the replies very comforting.

    Chrissie

  • My dear CDH also The Son & Keith joined in grief at the injustice of this ghastly malady. Slowly seeing loved ones

    fade away.I have shivers up my spine reading your notes. Memories flood back of my bride of 54 years wilting away with PSP -- then suddenly she was no more Believe me, when the Grim PSP Reaper does come ..and he will...the old saying "happy release" will be on all our lips as we remember our loved ones as they used to be .

    But dear CDH I'm equally distressed to hear of your Mum's plight. it's great your Hubby is at hand but Is their some way to get even more help to ease her load. Do not let her go, too, please. See Mamapuskins' note.

    As primary carer to my wife, my family insisted I get in more help...and luckily I did. Two days after she died I was in hospital with a heart condition I'd tried to ignore...and missed her funeral.There's a lesson there, folks.

    I recall asking our Specialist Nurse "I know how PSP patients go ...but what do primary carers die of ?"

    She answered quick as a flash "Shear and utter exhaustion, my dear!"

  • Dear ultrmoderm -- how touching I find your note. In the US we have hospice available to us for those who have a life expectancy of six months or less. Of course, Dad is -- if he reaches October 22 -- been in home hospice care a full year. I have seen hospice workers in action in those cases where death is imminent and, God bless those who make this their life's work, easing the dying of others. I don't think they're as well equipped when death lingers and living declines in such fluctuating ways. Mom has a certified nurse assistant who comes in twice a week and gives Dad his bath and shaves him. A nurse comes in once a week and checks his vitals. We've looked into in-home full-time care, but it is not covered by health insurance and the cheapest we can find is $18/hour -- in expectation of Mom's living many years possibly, we simply can't avail ourselves of that. It's also hard to plan for help when we never know from one day to the next whether he's going to sleep 20 hours or 2 between awakenings.

    He's getting so very weak. It takes both hubby and Mom to help Dad stand, only to have him able to shuffle one step to turn and fall into the wheelchair or onto the bed. Mom needs shoulder replacement surgery and both knees done, and won't even get them checked out because she knows she wouldn't be helpful at all and that the end is near -- it's just that we don't know how near, so it's a waiting game.

    I do believe this is one of the most insidious diseases, I've come across. Mom's opinion is "if it kills me, it kills me, but I'm going to care for him at home because that's what he wants." On an intellectual level, I understand, but on an emotional level, it nearly does me in. That was a very wise Specialist Nurse you had.

    I'm so glad I found all of you.

  • Dear Cindy, I feel for you, your mother and your husband. PSP is a hideous illness. What does matters worse is the fact that your stepdad had some very nasty falls, which have hastened and worsened a bad situation. You are quite rightly concerned about your mother. Whilst the situation is bad for you and your husband, it does not compare to the pain and distraught your mother must feel loosing her soul mate. There is not much I can say more about it. I have a similar situation with my wife and although she is not yet in her final stages, the knowledge that it going to happen whatever is maddening. The only thing one can do is trying to alleviate any suffering as much as possible.

  • Thank you Gerko. The bad falls certainly hurried things along. I feel badly for my Mom. She was a 41-year-old widow when my Dad died unexpectedly 20 days after their 25th wedding anniversary. She has had 30 wonderful years with my step-dad, and now she will be a widow again. Dying is hard. Living is harder.

  • My Dear CDH...thanks so much for your reply...I didn't think you were in the States but what it does prove to me is that wherever you are and whomsoever PSP/CBD strikes down, the results are the same. Loved ones gradually losing their autonomy ,heartwrenching to see. Caring wives or husbands exceeding their energy store giving it more than they can or should in order to be right alongside the stricken loved one to the bitter end.

    And this is what shines through in every single family story that's told on HealthUnlocked as I see it....LOVE!

  • Cindy, Your story is so familiar to others posted on this site. PSP is a REALLY tough deal on the entire family. Sounds like you are holding up as best you can and that is important to your parents. Have you tried the eye gel instead of the plain eye drops? They tend to stay in the eye longer than the drops. Hang in there and feel free to vent on this site whenever you like.

    Jimbo

  • No, I don't know about the eye gel -- can you get me a name of the product? We have also started using a rinse for his mouth since it tends to dry so much as it hangs open while sleeping, and now often, while awake as well.

    Thanks. For Everything.

    Cindy.

  • There are two brands of the gel. Systane is one and Genteal is the other and there may be more. It works well, not perfect, but well.

    Jimbo

  • thanks!

  • Dear All

    Considering that very few doctors understand PSP let alone the neurologists who's professional duty as doctors is to help people, wouldn't it be an education for them to read some of our blogs to get a real insight into just what the sufferer is going through and what enormous lengths we the carers take in caring for our loved ones?

    Dorothy thompson

    .

  • OH, this is so apropos Dorothy. It is a very little understood disease, and doctors spend so much time mis-diagnosing this. We were very fortunate that our local doctor suspected this and sent Mom and Dad to a specialist who did understand PSP and accurately diagnosed him, but so many don't.

  • Dorothy - what a simple but effective idea!

    Everyone is time-poor these days, but to be knowledge-rich would be a real asset for the professionals.

    Mo

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