Hello all, the decisions was made yesterday to stop all of dads meds. He's struggling to swallow them and we're not entirely sure what he is even gaining from them anymore. Dad is eating only a few spoon of food and a few 100 mils of fluid a day!!! A blood test showed high salt levels possible dehydration. I hope we are making the right decisions for him. Has anyone else been through this stage?? Any advise or suggestions are greatly welcomed on this learning journey of PSP.
Meds stopped: Hello all, the decisions was... - PSP Association
Meds stopped
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Andyclairea1
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When your dad was first diagnosed, did he make any decisions as to what he wanted to happen when things became difficult. My husband said he wanted a PEG fitted when absolutely necessary. That time came at Christmas when he became dehydrated causing his skin to become very dry and sores developing. The PEG was fitted in January and his skin improved very soon after. I've been able to take him out again after weeks indoors. He still has a little liquidised food but I don't worry if it gets too hard for him to eat as I top it up with the PEG feed. Colin gave consent on the day by putting his thumb up after having it explained and the doctor asking him if he gave consent.
When a PEG was first mentioned several years ago, our first thought was, no he wouldn't have one. Colin didn't want to be kept alive if it was his time to go and I thought the same. After a long discussion with the doctor and nurse he said yes, when necessary. The hospice decided it was necessary in August 2014 but neither of us thought it was then and I'm pleased we made that decision. I was still hoping that he would never need it and would leave me in the future, peacefully and quickly. My thoughts changed seeing him with sores that wouldn't heal, unable to sit so in bed most of the time, unable to go out and feel the wind and sun on his face and breathe in fresh air.
If your dad's tablets are just for the PSP then not taking them probably won't make any difference. If he has other conditions where medication is necessary then it probably will.
I do hope your dad has made his wishes known and advise everyone, fit or otherwise to let someone know now what they want to happen if they are incapacitated in any way.
It's a difficult decision to make if you don't know what he wants but if he can still communicate in any way, can you ask him? A squeeze of the hand or thumb movement may tell you so then, at least, it's not all down to you.
My thoughts and prayers are with you all.
X
Hello NannaB dad made it very ckear last year that he didn't want a peg fitted. He was part of his care plan so I believe we have involved him fully, I just feel apprehensive now the time is here to implement things. It's like playing God and it's uncomfortable. It felt right yesterday with the GP I just feel uneasy today. It's so very difficult. Love to you and Colin xxx
That's good he has made the decision but I know it must be dreadful for you all. All you can do is abide by his wishes but you know it is what he wants. Sending you a big hug. I know it won't take away that uneasy feeling but hope by knowing you are fulfilling his wishes, you will soon feel more peaceful.
X
Ben has said he doesn't want a PEG fitted but reading NannaB's post certainly makes you think it is kinder to have it fitted, as the suffering it causes not to have one fitted seems to be outweighed by the improvement made by having PEG feeding. Such a dilemma. Xx
Dad was very clear in his decision about the peg so we must respect that as it was probably the last thing he had real control of. Desperately hard though xxx
AC, you are doing the right thing by respecting his wishes. My husband also made the decision early on not to have a PEG and I am respecting his wishes. I went through this with my mother. Though not PSP she had a fatal disease as well. When she arrived at the point where she would not could not manage to even consume a few bites of food or sips of water we too decide not to force medicine down her throat for fear of her aspirating them. She slept more and more with brief lucid periods then and gradually drifted into a coma like state. She awaked right before she passed, seemingly much improved. I hear this is fairly common. A seemingly miraculous improvement before the person passes. My mama took her last few breaths peacefully in my arms. I hope and pray that it will be the same way when my husband decides not to fight the fight of PSP anymore. I respect other's decision to use a PEG for their loved ones and every case is very individual and must be thoughtfully contemplated. A person's mental capacity is diminished in the end so it is important to follow-up with the person as to their wishes before this happens. Then you can feel good about doing what they have requested and not second guess the situation. Easier said than done I know. I wish you and your family clarity and strength .
Take care, Jayne
It was a difficult decision but as Colin had said, only when necessary, and as he could still indicate on the day that it was ok to go ahead, it took the pressure off me a bit. On a slightly lighter note, when we went to the hospital that day, I took the end of life plan in with me as he hadn't been communicating for a few weeks. In December when I asked him if he thought it was necessary his thumb went up but after that, if asked a question there was often no response. At the hospital the doctor said they needed to see he has consented. He explained the risks and then asked for a thumb up for consent. My heart sank as I knew he probably wouldn't respond. Amazingly, and to my great relief, he put his thumb up. Then the doctor said, " That's good but I forgot, there has to be an independent witness, I'll call a nurse". My heart sank to my shoes, no way would he respond again. He did; up went his thumb, very quickly and very straight.
Why doesn't he respond to me like that?
X
Phew, what a relief when the thumb went up for the second time. talk about living on a knife-edge. Sounds like he made the right decision. Xx
Oh NannaB, I know what you mean. S, most of the time, will not respond to me, I really struggle to get the thumbs going. Yet last week in the hospital, he was able to talk, use his thumbs, even joking with the nurses. I can barely get him to even look at me!!! I fully understand all the reasons, but oh, it's so hard to take at times! Perhaps, I should leave him unattended in his bed, put his food, three miles away, so he can't get to it. Forget to empty his catheter, only shower him once a week, need I go on!!!
Hope you have a peaceful weekend. At least the rugby is on!
Lots of love
Heady
Maybe we should wear a nurses uniform. Perhaps that would make a difference!
X
I am all for it! As long as I get to only do the jobs they DONT do and of course the hours!!!
Lots of love
Heady
Oh wouldn't it be bliss if we could work 9-5.
X
That would mean wine o'clock would be a lot earlier!!!
Lots of love
Heady
I tell the Carers when they start complaining . We don't get a day of a lay in or holidays . No okay ! Not that we want it
You got my thumbs up miss Heady....change up the comfort level....when they want more comfort they need to politely ask....I don't need a speech...just some speech...please
AVB
Heady, my husband just did the same thing in the hospital. You would have thought he was using sign language how swiftly his fingers were moving-HA HA! I think they have stopped seeking our approval or maybe accept our disapproval. Who knows.
Nothing to be done about it. A marriage counselor once said the easiest way to get a spouse to appreciate all that you do is to stop doing those things for awhile. We do not have that option as their very survival is dependent on us. Maybe there is resentment that they are now dependent on us for everything.
Peter Jones-we are in dire need of your opinion right about now!
Bruce has some oral abilities...especially with others....we practice daily using his lips and tongue for articulation but when it comes to saying a word all I get are the vowels.... Until of course he speaks to another.... then out come the consonants! I guess our mates are just too comfortable with us; knowing that we know their every need before they do....Guess what Bruce ..... I need your consonants!!!!!
Bev, may I add that your words have been wonderful in this post. I do hope and believe that those who read it will find it a great help.
Bruce and I talked about the PEG early on. He wanted it. When the time came, though my dr. talked about it, I had to call them to tell them B needed it ...NOW...and within days he had a new form of feeding.
AVB
Nanna, he must have felt very strongly about it. Unlike the everyday decisions of what to eat/drink do etc. He made sure his feelings were communicated clearly. You could not ask for more assurance than that!
O yes . Sometimes I will get fed up with not getting an answer and too him , if someone else comes now John you will answer them straight away .
I know he can't help it it's not deliberate , still not easy though
Hi, S has all his meds crushed into yoghurt now, as he can't swallow them whole anymore. I too, am struggling to get fluid down into him. You can only do your best and what you think is right at that particular moment. None of us are trained, we can only do what the professionals suggest, or follow our loved ones wishes. Which I understand you are doing. When my father died, (not of PSP), it was a great comfort, knowing we had done everything we could and had (hopefully,) fulfilled his wishes.
Sending big hug and much love
Lots of love
Heady
AC,
I don't know if it was you I discussed this with so for give me for repeating myself. However, here in the states we have hospices for end of life conditions. They are like hospitals only that there is staff there who will attend to the patient. Everything else is as homey as they can get it so that the family and friends and the patient can feel as comfortable as can be. This might mean some fluids intravenously; taking care of hygiene, IV pain reducers ;and maybe even taking care of a family member that stays with the patient (shower facilities, meals...i'm not sure about that though)
If your dad wants to stay at home then palliative care may be minimal...and I am sorry.
The only words of support I might have for your dad is surround him with things he enjoys.....Friends and family naturally...if he liked books, read to him....if he liked movies surely you remember a couple he enjoyed....if he likes music....not too loud and his favorite band...for B it was the Grateful Dead....he used to follow them when they'd tour the midwest. And well you get the picture...Let him go with everything he loved around him....he already has the greatest thing....you....It's hard I can't hold back my tears for you as I write this....but it is what it is...don't forget to surround yourself with good support even if that support comes from a good stealthy walk for an hour...half hour?
Keep writing we are hear for you,
AVB
Thank you abirke. I gave been reading to dad and we watch TV etc together. Dad is in a very good palliative care nursing home. His room has been personalised with family pics and it's very cozy and calm. He was good today and has eaten a decent amount. I think we will have good days and bad. We meet with his whole medical team on Tuesday and I now have the chance to visit as I feel now in off work. I'm going to take my record player in and play dads old vinal to him. I'll sing along of course. He wrote a poem about me as a little girl about my non stop talking and singing ha ha. I may post it on her one day. I plan to cherish and enjoy each and every day we have left together from this day on. XxX 
XxX
Hi AC. Reading your post I think you are an amazing daughter. I'm sure your dad will enjoy your singing and listening to his music. Enjoy while you can. Thinking of you. Lots of love Nanny857.
Thank you Nanny it means a lot xxx
Well planned! You just sing to your heart's content! I am glad your dad is in a good facility.....
At my sons wedding my husband used his walker more as a wheel chair. And though he was seated...I danced with him...It was fun... Fun and joy is what you make it...singing and dancing to old vinyls sounds like a lot of fun....!
AVB
Ah this brought a smile to my face how lovely dancing together xxx
Hi my mum didn't want a peg. She was eating very little and drinking little for quite a while before she passed. I kept having to ask doctors to explain and reassure me it was a natural part of going. Having spent what felt like years ensuring mum had enough food and drink to stop was very hard. Eventually she was totally unable to swallow. It is a very tough time but it was very peaceful. You are in my thoughts and prayers x
It sounds as if you are doing all you can to fulfil your dad's wishes. You are clearly a loving, thoughtful daughter. The best we can ever do in making a decision is what seems right at the time. Then move on.
Thinking of you all. We will all have these situations in the future.
Love and hugs,
Jean x
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