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PSP Association
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So Hospice begins

Friends,

My wife had a fall on Monday and I took her to the ER and they transferred us to their downtown hospital because there was signs of previous bleeding in her brain, but not due to this fall. She has been very anxious pacing the house and walking in circles.

The initial indication from the staff was that we would be dismissed from the ER that day. We however were not discharged from the ER on Monday as we originally expected. We spent the night in the ER, which was terrible. From that stay I can confirm that Houston is a violent and dangerous place. It is worse than “heaping burning coals on your enemy’s head” just in case you have some enemies. The medical staff wanted to continue to monitor and try to identify the cause of her fall despite my explanation of her underlying condition(corticobasal degenertion)causing the fall, so we were admitted and were in the hospital through Thursday. They finally believed me that her condition caused the fall and worked on making my wife more comfortable. The hospital support staff helped me finalize hospice arrangements for our home. I knew that I needed to do this before her fall, but this has been the impetus to actually do so. The hospital stay was difficult for us both and I believe that She is more comfortable at home.

So just stared home hospice care last night. Unfortunately her hospital stay has caused her to be bed ridden. Now she paces with her legs in bed. Kicking constantly.

Bobby

O Lord, my strength and my stronghold my refuge in the day of trouble. Jeremiah 16:19

We do not know what to do, but our eyes are on you. 2 Chronicles 20:12

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Dear Bobby, so sad to see your beloved arrive at this milestone.

We know there's no cure, still its a rude awakening for the "end" to become real. I will be exactly the same when the time comes.

Hugs to you to endure the heartache.

Anne G.

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I wish you a long time before that comes.

Bobby

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XXX :-)

A.G.

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Hi Bobby,

What an exhausting horrendous period you and your wife have been through recently !! As if dealing with CBD isn't difficult enough ! But you now have hospice care on board and I'm hoping that will be a positive development for both of you !! Sometimes getting ANY appropriate help into the home is a herculean effort !

Wishing you both greater stability and peace going forward as hospice can be very effective and helpful on many fronts . Take care !! Best wishes to you both !!

Elise ( caregiver for sister with PSP in NY )

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Oh bobby sad time xxxx

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Dear Bobby

Hope the Hospice team will give you both care and support

Love Tippy

Xx

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Tippy, so far I am very impressed. There are so many to choose from and didn’t want to have a protracted process. I selected this one because of their experience with neurological patients. The hospital social worker team did a lot of leg work to identify, coordinate interviews, and set up final arrangements with my selected organization. It is an effort I needed to do sooner, but just didn’t do it until I had too.

Bobby

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So pleased you now have Hospice at home. Hope they can remain to give help to you both.

Interesting that A&E found an earlier brain bleed. Think this should be a lesson to us all, that if we, or our loved one, has a fall, we should watch for any small change in behaviour and get it checked out by a medic if there are any concerns.

Long before I knew about CBD, my husband was coming in from gardening saying he had fallen over, fallen and needed a plaster, couldn't get up, fell and broke my ladder stool. Think I took him to hospital only once and they found nothing untoward.

Looking back now, it is making sense in light of final diagnosis of CBD.

Keep holding her hands and dancing with whatever limbs that move!

Hugs

Jen xxx

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How did the first night go, on home hospice? Was it just months ago you posted the picture of her with the azaleas? Thinking of you.

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Thank you for asking. That was my wife in front of the azaleas. She exhibited a lot of pain initially, but after falling asleep she slept very well. We are struggling with excretions in her throat that are limiting hydration, but the drugs for it appear to be helping now.

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So glad to hear the drugs are helping--how exhausting.

That's a lovely picture of her.

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Hi Bobby

So sorry to hear your news.

Yes, ER rooms are gruesome.

The pacing - is that leg jerks? You might ask if there is a medication to calm it if it is restless leg syndrome.

You have a lot of support here.

Best to you both

Kevin

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Kevin,

Actually one unique aspect of my wife’s CBD, is that it had limited effect her core or legs. Before the hospital stay she was walking/pacing up right. The CBD did impact her balance(leaning), her spatial orientation(walking into door frames, furniture, and walls), and now possibly the processing of visual information. Now after the hospital, she has been confined to a wheelchair and bed. So she does move her legs constantly when awake. We had been modifying her anxiety meds, but all seem to sedate her. So now focusing on comfort.

Bobby

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Hello Bobby

It sounds as if you are having a typically rough time.

Can she do leg pushes against something like foam placed at her feet? My wifes leg movements settled when she did exercise. I may be barking up the wrong tree here, you seem to be very on the ball.

Yes, love and comfort are good things. It's what I focus on too.

Again, wishing you the best

Kevin

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Kevin,

Yes, exercising by pushing against my hands helps somewhat. She is still strong, pushing me hard. It doesn’t seem to stop the constant movement, but the movement is becoming less of a concern than other comfort issues.

Bobby

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Bobby I am so sorry about this. Are you sure she can't get out of bed? Even if only for a small time? If you have help maybe you could manage it together? I feel so very sorry for you both.

No wonder she was walking around in circles? Poor lady. Thankfully they listened to you in the hospital.

I am sure it will help to have carers from the hospice in but you still have most of the burden of care. I am glad you have found out what was going on though. God bless you both. This is all so cruel isn't it?

Marie x

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