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PSP Association
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Final days

Hi all - a little update. My dad finally got moved into a nursing home last Thursday and we have been getting him settled.

He has looked increasingly frail and his weight is down to a little under 6 stone.

He was seen by the doctor today and we were given the news that he is in cardiac and kidney failure - and so we seem to be at the final stage of this awful journey.

Its 4.49am as I write this. My mother is resting next door (the nursing home have provided us with a room to use) and my brother and I are sitting with my dad.

My dad's breathing has been shallow and he has a very fidgety leg and foot. He has some mucus buildup and is drinking very little. The doctor said that he had only days to live but I think he'll go much quicker.

I hope he doesn't feel any discomfort in his final hours and that he has as dignified end as possible.

M

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So sorry to hear such devastating news. Thinking of you and your family. Jx

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Am sorry that time has come, M. It is bittersweet news, I know. I think you will find the staff are caring and considerate at this time. They have drugs they can offer to resolve any difficulties along the way, such as muscle relaxants, something to ease the mucus, and of course morphine if required.

My love had mucus problems and these were greatly alleviated.

Stay close to him and hold his hand. Tell him you love him and that he is free to leave you and that you will be all right. Sound and touch are the last senses to leave us.

If you stay with him all the time don't be surprised if he goes while you have slipped out for something, however briefly. My love did just that and I have heard of many more who have done the same.

I hope his passing is peaceful.

Hugs

Jen xxx

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Honjen that was beautiful. The senses have indeed stayed and are very aware of things around them....a piece of poetry read, a favorite song the lovely confidence whispered in his ear...it's ok to go....God bless all of us...

AVB

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πŸ’›πŸ™

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Dear M,

I am sorry to hear of your dad declining as he is. It is good he is in a hospital and that you are close by. Your mother will need you so much in the coming days....all of your efforts toward your dad must now be toward your mother....PSP will still be affecting you all for a while longer. My husband left this world in March of this year. One minute I have it under control and the next I am sitting on the couch weeping uncontrollably . It does get easier; setting daily goals ie chores, or tea with friends will allow you and your mother to remember there is life after PSP....I will leave you with a few scriptures that I often give to those who are suffering in this way. I hope that you will find comfort in them.....And ...if you are a praying person; pray for the comfort that God can give you , your father, your mother and your brother.

Sincerely,

AVB

The Lord is nigh unto all them that call upon Him. To all that call upon Him in truth. Psalm145:18

These things I have spoken to you, that in Me you might have peace, In the world you shall have tribulation but be of good cheer: I (jesus) have overcome the world. John 16:33

Do not let your hearts be troubled. You believe in God; believe also in Me. John 14:1

So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal 2 Corinthians 4:16-18

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Beautful passages it is always good to be reminded of our hope in Christ. Thank you Jenny

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Sorry to hear that your dad is slipping away and hope that it is a painless and dignified end for him. At least you are able to be with him but let others do the nursing care whilst you are there to live and reassure him. My thoughts are with you all.

Love and hugs

Kate xxx

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Thinking of you & your family as this final journey develops.

May your Dad be free of suffering & comfortable as we all hope for.

Xx

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Sending hugs to you and your family

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Love and hugs

Helen xx

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I'm so sorry you're all going through this. Your at the best possible place to enable your dad to go peacefully and without any pain.

I don't think there are any words that can really help you right now. Thinking of you and your family xx

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Thinking of you all at such a sad time.

Last precious memories for you all.

love, Jean xx

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Hi, don't worry, you are now back in the medical professions comfort zone. They, at long last, will know what they are doing, and will be able to provide a pain free and dignified end for your Dad. I agree will the others, talk to him, touch him and give him permission to leave. Make the most of these final days, I found them the least stress free time of PSP, be his daughter again, let your Mum be a wife again, instead of the Carer she has been for so long. This is so important for coping with life in the future.

We are all with you, sending lots of strength and love.

Lots of love

Anne

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My prayers are with you all at this time.πŸ’›πŸ™

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Think off you all at this sad time xxxx

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My thoughts and love are with you all at this difficult time....

Hugs....Pat x

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M you are probably right about the time your Dad has left. Usually loved ones are more in tune than doctors.

Just make sure he knows you all love him. Let your Mum have some time alone with him too so she can tell him the same and hug and kiss him. That is really important. I had to ask my daughter to leave us alone as I felt I was an onlooker rather than his wife. It was important that I had time alone with her Dad much as she loved him. God bless you all. He will soon be out of the misery that is caused by PSP.

Marie x

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So sorry to read your post M. God bless you all and give your dad a peaceful departure from this life.

Marie

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No words can make this any less painful for you and your family.may your Dad have a peaceful journey.

(((Hug)))

Dee

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I am so sorry about your dad. I do pray for God to keep him and your family in perfect peace in Jesus name Amen. Love you Jenny

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My prayers are with you all at this time. Wishing you strength. πŸ’›πŸ™

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Sorry to hear about your dad, m. He's lucky to have you all with him. Sending strength and solidarity!

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This is such a terrible time for you all. When my dad was in his final days as you said his legs went very fidgety and he was clearly distressed so the nurse came in and gave him sedation for the last week of his life so although horrible for us to watch apparently he was not aware or suffering. He did not have morphine but only sedation. This may help him too. Thinking of you all.

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I am so sorry to hear this and thinking of you during this awful time,

Hugs Mx

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Hi sorry about your father praying his final hours will be peaceful, so hard to have to deal with this outcome. You take good care and hugs . Nettie

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So sorry but as others have said the end of a long journey. Make sure your Dad gets the right drugs to ease the symptoms and keep talking and touching him. Gain strength from this community of people who bear witness to this terrible disease. Steph

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