Father in law past away

[leemaree]

Sadly tonight my father in law past away, he was only dignosed with psp 8 weeks ago and only had symptoms since Xmas day.. This is a horrible , cruel disease and heartbreaking to watch.. This was so rapid and I still doubt the dignoses of psp.. He past away very peacefully and now is free of this horrible horrible disease.

[jillannf6]

i am so sorry to hear of your finlaw s rapid demsie from this psp

he is free and a gpeace a t last

i tis a cruel disease and everyone is affected differently - i am lucky in htat i have the slow sort and since my dxs 3and half yrs ago am still here upright mos tof the itme

lo l JIll

hugs and xxxxx

[dorothy-thompson]

Dear Leemaree

I am so sorry for your loss, all the more so after so short a time following your FIL's diagnosis. Re-reading your first blog, I can identify so much with your FIL's symptoms.

My husband was diagnosed with PSP in 2010 and he too is very stiff, has the same clenched hand and, like others on this site, clings on to

everything for dear life, it's as if he thinks he is going to fall, despite being in his wheelchair. He has so many other symptoms as well, incontinence, constipation, persistent coughing, choking, difficulty with swallowing, to name but a few. He cannot walk without assistance, all his personal care is done for him, he spends most of his day either in a wheelchair or in bed, in fact he cannot do any of the things he enjoyed before PSP like, reading the paper, watching TV, going out for dinner, walking in the countryside, going to the gym regularly and not just for Christmas. I am sure many on this site will also identify with much of this.

But the bottom line is, what does it matter if it is CJD, PSP, ASL, or any other ghastly incurable neurological disease, there is no dignity in suffering, it does not make a person strong or pure

or angelic or any other of those puerile sentiments that the apologists make, no , as far as I can see, it only turns a good, strong, caring, funny, happy, generous, full of life, committed person into a vegetable. I want my husband to die and so does be.

I am sorry if this is not PC and I am sorry if I upset you in your grief, but it is how I feel.

Kindest regards

Dorothy Thompson

[Heady in reply to dorothy-thompson]

Hi Dorothy,

I send you lots of love and hugs, sounds as if you need some! Being PC in the world of PSP is not humanly possible. I would defy the Pope himself to be perfect, if he had to care for a loved one with this awful disease!

Lots of love

Heady

[dorothy-thompson in reply to Heady]

Hi Heady

Thank you.

Dorothy

[nomansland in reply to dorothy-thompson]

Hi Dorothy....we are tested as all things in life...hopefully for a greater reason,we,re at the same point you are,I,m not sure what to say...love and pray for courage,Rollie

[MaddyS in reply to dorothy-thompson]

Leemaree, so sorry for your loss, remember he is at peace now.

Dorothy, what you say is exactly as it is. Hubby is at the same stage as your husband. I don't know how to 'entertain' ( don't know a better word) him. He gets tired going out for too long, does not want to listen to music, can't watch anything on TV etc. does anyone have any suggestions? I feel guilty just looking at him sitting there.

[jimandsharynp in reply to MaddyS]

MaddyS, yes I can relate. I think TV can be enjoyed if the subject is easy to follow. Example: My wife enjoys sports on TV. No underlying theme, no facts to store for later in the show, etc. etc. She also enjoys easy to follow reality shows like "Say Yes To The Dress", "House Hunters" and such. Again, no plots to follow just straight forward and uncomplicated. If you miss something you aren't lost in the show. One PSP patient noted on this forum that her husband, and avid reader before PSP, liked her to read to him for a while but then stopped wanting it. Again, if there is a plot to follow it becomes difficult for some PSP patients. Try easy viewing TV where there aren't plots to follow and see how he likes them. Jimbo

[MaddyS in reply to jimandsharynp]

Hi jimbo

Thank you for your reply. Hubby enjoyed all you described until very recently. unfortunately he now has double double vision. He sees me four times - can't help laughing, told him one wife was enough, maybe the other three can do all the chores!! I know it's not funny, but there is not much else to laugh about.

Take care, maddy

[jimandsharynp in reply to MaddyS]

Thanks for a smile. We can use three of ourselves. Lol

[jillannf6 in reply to MaddyS]

a good way o look a t the doubel vision problem

lol jIll

[goldcap in reply to MaddyS]

Maddy, that is hysterical. Thank you-I need a good chuckle! JG

[jillannf6 in reply to jimandsharynp]

hi i neve rsued to wathc the soaps and now do1

lol JIlll

[wifemo in reply to MaddyS]

Hi MaddyS-

All I can suggest is that you are there for him - just being there and maybe holding his hand - the power of touch is very strong. When the nightmare is over, you will be glad of the shared memory. Ask him for a cuddle - it is one thing he can do for you.

Mo

[MaddyS in reply to wifemo]

Hi mo. Thank you for your answer. Whilst I was reading it, we were sitting next to each other holding hands. Great minds think alike, do you agree? This site is such a great help.

[wifemo in reply to MaddyS]

Hi MaddyS - take care and be strong.

Mo

[jillannf6 in reply to wifemo]

hi i agree with wifemo

a cuddle si great for both concerned

\ol jill

[jimandsharynp in reply to dorothy-thompson]

Dorothy, I agree to some extent with it not mattering which disease it is. However, if the disease is genetic (in the family genes) then it might be good to know the specific disease for future family members to consider. Just a thought. Jimbo

[dorothy-thompson in reply to jimandsharynp]

Hi Jimbo

Yes, I agree up to a point but what I was really trying to say was that in the overall scheme of things, the outcome would still be the same.

Kind regards

Dorothy

[jimandsharynp in reply to dorothy-thompson]

True. Jimbo

[goldcap in reply to dorothy-thompson]

Oh Dorothy, and I sometimes wish he was bedridden so I could have someone watch him and I could actually have a life and get out and do something once in awhile. Heady is right, there is no PC in PSP. There, it is our new slogan. Take care, JGC

[jillannf6 in reply to dorothy-thompson]

HI DOROTHY

i am really sorry hat you ar having such a terribel time with this \psp

i really do not know what ot say to you to make it better for you and yr husband

lol jill

hug sn\d xxxx

[Hidden]

Dear leemaree

So sorry for the loss of your father in law. Perhaps the rapid progression was a blessing in disguise. We never want to see our loved ones suffer for long periods of time. He is now free from such sufferings. Though grieving, may you and your family find some solace in the knowledge he is now at rest.

Take care

T.

[Charliesyoungest]

Dorothy, I agree with you that PSP only robs those we love of life itself...my dad is not to the point of being bedridden as yet. I dread the days ahead and have even prayed he could go peacefully before he loses all mobility and the pain of choking, muscle spasms,etc takes over. You are not cold or heartless for your thoughts and feelings. You are human and love your husband dearly. Prayers with him and you.

[Hidden]

You and yours are in my thoughts, with love Catherine xx

[Sharon637]

Dear Leemaree, so sorry for your loss. I am glad it was a peaceful passing and am sending love and prayers to help you cope at this sad time

[nomansland]

He is free again Leemaree...try to think of it in that way,we pray for him and all of you,Rollie and Madeline

[jimandsharynp]

As mentioned before your father-in-law could have had CJD and not PSP. These brain diseases are difficult to diagnose. If you had an autopsy of the brain then, and only then, can the proper diagnosis be made. PSP does not move that quickly. My first wife had CJD and passed on from a basically normal person to death in a short 12 or so weeks. That's how CJD progresses. Haven't heard of any PSP patients dying in that short of time. Another consideration is if the disease is hereditary. I believe that CJD can be but PSP cannot. Research CJD and see if you can confirm this. Just what I've read and understand. This is why consideration of an autopsy at death could be important to the entire family. Sorry for your loss. As I found out with my first wife, the pain isn't any less if the death is quick. My current wife has PSP. The odds of a person having two wives with rare brain diseases must be like the odds on winning the Power Ball lottery. I'm staying strong and refuse to let PSP destroy my life. Jimbo

[leemaree]

Thank you Jimbo. All the best to you and your wife stay strong xxxx

[Kirsty55]

You're in my thoughts and prayers. There are no words of comfort I can give aside from to say take comfort in happy memories and give yourself all the time you need xxx

[goldcap]

leemaree, very sad for all of you! It is a cruel disease and I am glad he did not have to suffer long. I understand late diagnosis but you are right something is not right. It hurts no matter how we lose someone we love. But it there is a genetic consideration you should encourage your husband's family to investigate further. Take care and be kind to one another.JG

[jillannf6]

hi leenmareee

ia m so sorry 4 yoru loss and can only reiterate what has been said already

i am nto religious os no prayers btu i am htinkign fo you and yours

lool \jill

hugs and xxxxxx