This is not really a question but an observation which I think illustrates quite clearly the fallibility of our caring sharing "care

In the community".

I happened to see a blog of mine on the site over 2 years ago where I said my husband was having a great deal of trouble with saliva and I was having a great deal of trouble from his low moods and aggression.

Two years on, the problems still remain but some progress has been made, we expect delivery of a suction machine for the saliva tomorrow and we await an appointment from a psychogeriatrician who will come to our home to talk with my husband -my insistance on that one, I am refusing to talk to anymore lay people - to hopefully help with his low moods and aggression.

Watch this space!

Regards

Dorothy Thompson

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24 Replies

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  • Morning Dorothy can understand your thoughts My PSP nurse is looking to get me to a health psychologist as low mood and 3 amp fuse which results in outbursts anytime any where which is having an adverse effect on the family

    Take care in 2014

  • Dear Keith,

    PSP - it causes some things to go amiss,and you are doing things address the situation. If I was in the same room - you would hear me cheering in support for your struggle and acknowledgment right now!. My families disintegration is a prime example of what it can cost -use it as example if necessary. PSP certainly has its affects on people in so many different ways.

    Regards

    Alana - Western Australia

  • Thank you SharonAB

    Take care

  • Dear Dorothy Thompson,

    I feel for your long-standing dilemma for it is certainly a case what you should do v's what you should not v's what remains possible and for how long!

    You have great stamina and tolerance. I imagine your breaking point has been reached time and time again and you now wonder what is left to change and to what benefit.

    Though my husband no longer lives at home - I also work on one day at a time for different reasons and hope for a reasonable solution. It certainly is a long haul...

    I fighting for stability for the future of our daughter, and also am concerned about my abilities to continue to cope. I wanted to move closer to my family to give me and our daughter emotional, housing and educational support. It meant moving 200km away. Instead I must find a new home with no money and live with in 50kms so my daughter can be on call for visits and access.Her visits are to be without me, including when John is in the very last stages of his disease. It is a distressing, disturbing situation all round. I am left wondering how many decisions, mine now caring for my daughter and yours caring for your husband are made without what I see as important considerations - All people are an integral part of the wheel. This disease and its added implications in life are disturbing and demonstrate how lives are so easily broken and destroyed.

    Yes - there are times when I do hope I am just living a very bad dream, and reality can't be what I have become part of...

    Regards

    Alana - western Australia

  • Thank you keith and sharon for your kind thoughts.

    Keith, I can only imagine how difficult it must be for you because I am sure how you feel at times must hurt you as well as your family.

    Sad to say my husband has always been somewhat of a bully towards me so way back 2006 when his PSP must have begun, his altered behaviour and aggression was almost par for the course. It took the family until 2010 to get a proper diagnosis and then only to be told that there was nothing that could be done. Goodness me what an indictment on the medical profession, but they are not miracle workers are they?

    Sharon, yes you are right, my breaking point has come perilously close, but as it says in the song "I'm still Standing". But I am concerned with what will come after it is all over. For my husband's sake and for mine, I honestly hope it is not too long, there is no quality of life.

    Take care and regards to you both.

    Dorothy T

  • Thanks Dorothy Take care

  • Hi Dorothy dand Keith

    Imam,so,sorry.that you are having. Such a bad time with the PSP

    It's mot easy to deal,with ,.w,I know that

    But the aggression will go,Dorothy as your husband getsworse

    How,is your new apartment? Any better for,your husban?

  • Hi Jill

    Glad you're back on the site, I hope you are well.

    How kind of you to remember, yes our apartment is absolutely great, we have been here around 18 months now and it is so much better for us, NO stairs.

    Take good care of yourself, all the best.

    Dorothy

  • jillian

    why wont you wiitr to me my address is 1694 highway 35 south in foxworth ns 30483

  • Hi, have u an email address .??

    Lol Jill

    :-)

  • I now have it!

    Lol Jill

    :-)

  • I don't have it after all

    Plz let me have. Ur email address

    Ta

    Loljilll

    ;-)

  • this is barbara daughtry mombcd1@yahoo.com

  • Tanks formth

  • Hi Dorothy , I do hope the appointment comes through soon and something can be found to alleviate the aggression. I'm interested in knowing how successful the suction machine is. My husband has so much saliva, as yours obviously does.

    Wishing you well Dorothy. Life is so hard for PSP sufferers and carers.

    Regards.

    Nanna B

  • Same here as far as saliva is concerned where does it all come from

  • Dorothy, I just want to say that I admire your persistance and courage in the face of your particular ordeal. You keep coming back up. I hope I can do as well. Best, Easterncedar

  • You will do if and when necessary

  • Thanks for the encouraging word, cabbagecottage. This community is the best.

  • i agree with you easterncedar - this is a wonderful site

  • Hi all

    I still cannot get the website to come up on the internet explorer sand hsve to use my iPad for reading or replying to any posts which come up

    It iscv difficult doing this as I am tuYpimg too fast a d the iPad suggests al l,sorts of strange words for my sdyslexic typing

    The latest is that I'm getting emails to te

  • someone told me that google chrome is the best fir all the stuff that we need to do - why not try it ?

  • For info -- I use Mozilla Firefox instead of Explorer so i can use Health Unlocked

  • hi shaor

    yesa gooogle chrome does it for em htansks 4 ht e tip

    1 ol jill

    ;:-)

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