PSP Association
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Where do we go from here

Mum lost all mobile in January sit in chair all day hoisted onto commode onto bed several times a day , declined from having peg where we go from here I really don't know

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Dear blackcushion, you might want to look for Sharon637's post saying her father had passed, particularly her answer to a question from Dorothy T on that thread. Her experience seems perhaps applicable to what you are going through with your mother now. I'm not there yet, but my guy doesn't want a peg, either. Best, EC

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CurePSP here in the USA is holding an on-line talk on PEG this Thursday. My wife doesn't want a PEG but I'm going to attend the session just to see what they say.

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hI

i agre e iwth eastern cedar

i DO NOT want a peg fitted when the time comes and have stated it in my A4 document to go wiht my LPA

lol jill

:-)

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i so agree jill i could ot think of anything worse than being kept alive, for what ?

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When my mom reached this stage we had a lift chair that we were able to use so that she could be up but in amore reclined position. She did not have a PEG tube so her crushed pills were put into yogurt, loaded into a large syringe, and carefully injected in small amounts in the back of her cheek on her good side. There were a few times when it would come gushing back out. It was the basic meds that she needed for muscle spasms, etc. We pureed the food and used thick it for fluids. I remember asking her if she was choosing to not eat thinking maybe she was trying to tell us she was done. That was not the case. We fed her like that until one morning she was not responsive enough to ingest anything. Then it was not knowing when or if but simply that it could no longer be done.

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Bonjou!r Blackcushion...Sorry to hear of your Mum's plight and fight with PSP. I know exactly what you must be going through .Your question 'where to from here' isn't that easy to answer.

Because each PSP patient is unique,however from what you say your Mum could be in the pre-final stages.Whatever that means!

Our friend Tony Strelley always says on our forum to forget about stages and live each day as it comes .Then one day when we are least expecting it, it's over. The anguish, the pain, the nights without sleep,the days when you just want to scream about the injustice of it all.The utter exhaustion of being a carer. We've been there done that.

Or some of us are still doing, like yourself.

As you have found out there is no cure for PSP/CBD and it's life threatening....and terminal. We can only make sure that whatever quality of life is left is respected and you Mum is made as comfortable as possible with all the aids you need to help her day by day.And without PEG if that is her wish.

But are you getting any help at all? Can you get a few hours to yourself?

Blackcushion ,be sure your dear Mum will find peace.But I'm positive she wouldn't want you to lose your health .

Kepp calm and carry on...

With you in mind,

best,brian

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Hello ultramodern have careers four times a day and I have three brothers we all take it in turns to stay at night, I do all her meds and food , breaks my heart to see her like this I so miss my heart to heart chats with her

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Mum got to this point in her last 8 weeks. Because she rallied several times before we didn't know if this was it or not until one day she couldn't operate her swallow as everything had seized up and we knew then it was a only a day or 2 left as she did not want a PEG. I would not have wanted her to stay alive like that for any longer than she did and she would have hated it. Best to make the most of your time with love and care. Best wishes, Dianne x

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blackcushion, This is a very difficult disease as we all know. Where do we go from here is in your control. You have to do whatever it takes to get through each hurdle PSP tosses your way. Are you saying that the PEG caused a decline? Was it the patient's decision to have a PEG? I think that each person has to decide how to handle each thing that PSP throws at them. A lot of handling these things are in the personal makeup of us, caregivers, and our relationship to the patient. It is difficult to cope with all that comes our way. I do think that each of us probably copes with things in slightly different ways so one-size-fits-all doesn't apply. None of us know for sure "what is coming next". With PSP each symptom is different in each patient and the intensity of a symptom in a patient can widely vary. In dealing with the brain it is difficult to know what area of the brain might be affected next. We can't predict. However, we can cope by doing our best for the patient.

Jimbo

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Hello everyone. I just wanted you to know that the PSPA now has an information sheet on PEG, including information on deciding not to have one. You can find it at pspassociation.org.uk/getti...

Very best wishes to all

Liz

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my wife has a peg going on 3 years,she is much better than when she reached the max choking point and the hemlich maneuver was required often during any food.intake...we have also been able to be together for 3 more years

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Im in a similar situation. Ive cry day and night. I feel so much anger but we are trying all we can to keep my dad comfortable. I requested for palliative care we hope this can provide more comfort for him. Where do we go after all is said and done. Will take trip to the park perhaps scream or break a few dishes. In a safe manner of course and perhaps cry until I cant cry no more with my mom. Its been a tough road and I commend you all who are in this journey as well.

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