PSP Association
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Update on swallowing problem

Michael was transferred back to the nursing home today. I was not able to transfer him to another facility to date. I am hoping to talk to a facility on Mon. ( the person was on vacation Thurs thru Mon) and hope they can take him. In meantime, I spoke with supervisor of nursing at the current facility. She assured me he would be turned every 2 hours as well as changed. She agreed to do everything I asked for. I just want him to get thru the weekend unharmed.

His status is not good. He rebounded for 3 days on fluids but today after fluids stopped, he rapidly went downhill to the point of staying asleep.

Hospice came in to speak with me. Told me he is approved determined by his records and looking at him. That was tough to hear. I'm afraid he is almost there. I expected he might get 2 weeks before again being dehydrated but he has begun to not want to eat or drink already. His nurse believes this is a patch of rapid progression of the disease. So afraid this is the beginning of the end. I'm not ready but don't want him to suffer. I'm so exhausted.

Thanks for listening.

Liz

PS...needs much encouragement to chew and swallow. Just don't know.

15 Replies
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Liz,

A big hug 💕

Patty

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Liz, it sounds like you're doing all the right things to get him cared for. Thinking of you in your exhaustion and overwhelm.

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Hi Liz, Big Hug!

Thinking of you! Hope all goes well over the weekend and that care from Hospice begins very soon.

They will be caring and compassonate to you both, and are quite used to dealing with all those worries you have for you and Michael. Let them take over and you can be his loving wife. Sit by his side knowing that the end is near and all is being taken care of.

Talk to Michael while you can. He will hear you and be glad of your presence.

Try and relax a little. The fight is almost over. Tell him you love him and you will be able to manage on your own.

There is a group of us here to support you who have been through it too and understand your grief. We will be here when you need us.

More Big Hugs!

Jen XXX

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My thoughts are with you. I know how hard it is.

Big hug from Jean xx

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Hi Liz

Sending Hugs.

Does it help to think he will soon be freed of his suffering?

I hope you can get decent rest and recover some energy.

Warmly

Kevin

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Hi Liz

Hope you can stay strong

I’m at the stage where it’s becoming to be final but the support on here is absolutely fantastic as we all know

Love hugs and kisses to you

Sue xx

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Thanks to you all. It is so helpful to have you here. I still try to explain away what I see but you all know.

I will continue to talk to him and love him and try to assure him all will be ok. That last part I haven't said because I didn't want him to think I gave up. He has never indicated that he was anywhere near to death and I didn't want to "go there."

Thanks everyone.

Liz

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Hi Liz,

I have been through pretty much the same stages with my dad. My thoughts are with you at this difficult time.

From my experience even when they seem unresponsive they can still hear you. Like has been previously said just say what you want to say. Be happy, be sad, be whatever you need to be but please remember this. No matter what reaction you show they will know you love them.

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Liz I am so sorry to read this. None of us wants to lose the one we love? However that is us being selfish because we don't want to lose them?

He is obviously ready or nearly ready to go. Just give him your love and comfort him. Make sure he knows you love him. That is so important. In the end none of us can control this but goodness don't we try? Lots of love and hugs to you. Just hope and pray that it's peaceful and without pain.

Marie x

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Thank you! So very difficult. Glad you are all here. I feel the support.

Hugs,

Liz

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Thinking of you!

Mx

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Dear Liz,

It's a bumpy road down, isn't it? Like a rollercoaster - hope, fear, hope, fear, exhaustion....

Hugs to you XXX

Anne G.

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Here’s another.big hug. Take care. Nancyxxxx

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Oh my gosh! I walked in this morning and there he was staring at me and wide awake! This is after 30+ hrs sleeping, not eating or drinking again. Yes it is like a rollercoaster!! He stayed awake all day. Yesterday I was sure I would never see him awake again.

That being said, I realize this could be short lived. I think it was a gift from above as I had wished for just 5 more minutes. I did tell the nurse that we wanted to put him on hospice which will be so hard if he becomes dehydrated again and can't receive IV. But that is the whole point, isn't it? No more discomfort.

Happy Mother's Day to all moms or mums. I know it was happy for me.

Hugs,

Liz

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So pleased to see your response! Enjoy his company while he is able. Have seen this happen in 2 of my loved ones. It is a very special memory!

Big HUG!

Jen XXX

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