A little reprieve

I know you all have been through it. The roller coaster.......but today is a good day and I've been given a little reprieve. Charles is happy and I'm taking tomorrow off for a three day weekend of driving around the countryside, etc.

I'm happy but I know it will be short-lived. Perhaps it's God's way of sorting things outl. Either way I feel blessed. I know I have to let him go but not yet anyway, giving me time to adjust - once again - to all of this PSP.


19 Replies

  • Yes, we do have to learn to enjoy the good days, accept they may be short lived and not beat ourselves up on the bad ones.

    Enjoy your weekend.

    Lots of love


  • Have a lovely time. Enjoy the moment .

    love, Jean x

  • Dear Cuttercar, hope you enjoyed 3 lovely days driving round the countryside.

    Lots of love, Nanny857 xx

  • I came back to your history and saw this one I did not answer. I am glad for you and C that maybe you will have an enjoyable time ; each in your own way.....touring the countryside in autumn....can it get any better? Now theres few leaves and a lot of cold...winter is here!

    Well I hope all went well last month. I don't know where I was but I know this was not the only post I didn't answer....What state are you in again? (geographically, not emotionally or spiritually ;)


  • We are in North Carolina but went to Washington DC for Thanksgiving. It was very difficult but nice.

    SInce then he's diminished rapidly and tonight seems to have a problem with his left side of his face. I wonder if it's a mini stroke.

    Anyway, we have Hospice now so they don't treat anything, no doctors.

    Sad, I'd love to help him but alas the days are dwindling down.

    Thanks so much


  • Can I ask , what are the things that Charles can do? My husbands face looks rather like he's had a stroke....In fact he seems to be wearing that PSP mask more definitively . In fact again, he is falling backward only now; before it was more to the right and a wee bit forward this direction comes in combination with still more disinterest in the world , less walking, talking and swallowing....AND he rapidly lost his ability to smoke. He went from 6 this summer to 3 this fall to 1 last month to none the last week. He no longer is able to inhale that deeply though his 02 level is at 97%....so he is breathing ok. And the mucus......Its clear but sticky.... he's on an anti saliva med...it's not doing much I increased it but cannot sleep so I stopped instead , he's constantly trying to cough something up.....my poor baby...all the while I wonder if i'm doing enough ....

    When you say he has hospice, is Charles in a hospital like setting? or at home?

    Thanks for letting me yammer on.....


  • OMG abirke, Today I thought Charles had a stroke, just like your husband!!! The hospice nurse came by to check and said it's neuro pain and will give him meds. We have him at home and will get a hospital bed. I'm putting it off but maybe sooner than we thought.

    Same with the saliva and mucus, but breathing ok. Bedtime spasms and restlesness are the indicators of end days.

    I've just seen my doc and will get antibiotics. I want to stay strong for him but emotionally I'm a wreck. My help is wonderful and I'm so grateful


  • In truth my husband did not have a stroke , just his face is doing more the PSP mask thing than ever before....It's just all part of it. But some of the symptoms B is having recently are more descriptive of those just diagnosed....but hey thats why they say PSP does not have stages, right?

    I am glad there is an attentive nurse who can determine what Charles is going through and then do something about it, thats a godsend right there! I am glad you are able to keep him home for as long as possible.

    I too have been considering the need for a hospital bed. Home health nurses have asked when we are going to get one. He is still able to get in and out of bed (not easily , mind you) so I feel like for Bruce, he is not quite ready, nor am I ....we still sleep in the same bed :( . What happens during spasms and restlessness?

    Well you should have awoke (awakened?) to quite the arctic blast, I know we have ! Keeping B at home because of the cold is quite ok with him hahaha!

    Stay warm,


  • Yes, we're staying in today and tomorrow. I work so I'm here but tomorrow I'll hang around, Charles loves that. And we will make a pot of chili, and I'll puree it later. He loves it.

    Restless especially when he wants to turn which is so very difficult. I try to help but it's so hard.

    More meds, this time for pain, which I didn't want but it's not my call.



  • whose call is it....

    Chili sounds nice.....I have never made it, but my restaurant owning uncle made the best chili ever......I remember it as being more beefy than tomato-ee

    What is your occupation?

    I do hope you and Charles have a wonderful day....


  • I'm an executive assistant so that is hard.

    The Hopice doctor is sending Tramadol. Anyone know about that?


  • Someone else depending on you.....that s is difficult....up until June 2013 I was a sped teacher....but I hated my job (not the kids) nor even the paper work though yah ok the paper work was bad. And when B got sick going to my hell at work and coming home to my new hell there was only one thing for me to do ...havent regretted it yet!



  • I could retire early, I'm 62, but SS $ would be very small. I'll think about it. I have two months of leave I could use and will if I have to FMLA. I want time with Charles.

    NO ONE told me it would be this hard. What's the big secret? No one ever said it would be this tough.


  • No one can tell us how tough it is ...no matter how tough I read even on this site, until I went through it I couldn't believe that you couldn't just do this or that and make it better......it's a humbling experience....when I first got here I was angry at the way bruce was treating me.....it took me quite awhile and this site to realize this was not a passive/aggressive act against me. I think the first realization that my darling was going to leave me and 'OMG what about me!' was last month when NannaB's husband died....our husband's seem to be sort of neck in neck with the symptoms until about 3 to 6 or so months ago and then Colin started doing things that pointed more closely to the end. It's like the reality of Bruces death is just slapping me in the face......What do I do when he is gone....I'll no longer be in the throes of 24/7 caregiving....

    Makes me feel more helpless to the point of numbness...


  • Where do you live? Forgive me if I forgot.


  • I must say you are a very beautiful 62! I love your picture.....You look quite well kept....One good thing about having a job, it demands that you to look your best . But even with a job haah I couldn't look that put together ahaha! I'm 56 going on 80!

  • I feel my age believe me!


  • Is a very strong painkiller. Have not used myself, but gather it can sometimes cause hallucinations, and can be addictive. Take care! Jen

  • I'm keeping it away from him. If he needs it really badly I'll have it on hand. I don't like it either.

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