Larry Update: Larry is failing rapidly now... - PSP Association

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Larry Update

Jeff166
Jeff166
44 Replies

Larry is failing rapidly now. His nurse thinks he may die later this week. He was to have come home today from respite care. Taking a cue from the advice on this website I decided it is time for me to be his spouse not his care giver. When I told the nurse that she was relieved. They can handle the drug giving better than I could. Before I left yesterday his nurse came in and put a port into his should to administer the Ativan and morphine as they see fit. They are far better qualified to deal with this part of his death.

When I got home I called the VNA social worker (this is the hospice in Philadelphia I am using) to set up a direct cremation. She gave me a few place. She recommended one she said she would use for her family. I am going with them. The social worker entered the information into their computer system. Everything is in place now.

44 Replies
oldestnewest
doglington

That sounds like a good decision Jeff. Just moving him at this stage would be unsettling for him.

Just love him. My heart goes out to you both.

Big hug from Jean x xx

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Mottsie

My heart is with you & Larry. Sending gentle hugs to you both. . . Granni B

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Dadshelper

If you are content with the decision then it's the best one for you. Dad was in a nursing at his passing and they handled all the medicines, phone calls etc. We had a pre-paid cremation in place and the nursing home had the contact info, I didn't have to handle any major details on the final days.

Ron

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Abrecheisen53

May peace find both of you.

Alice

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mjtogether

My heart and love to you both. You have provided such great care to Larry; and yes, some needed care is now out of your capabilities. I wish you strength and both of you peace in these days ahead.❤

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dw123456

Sending you prayers for strength as you find your way through each day of Larry's last battle, may he have a peaceful journey.

Thinking of you both.

Dee

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bazooka111

Oh Jeff ... my heart is reaching out to you, praying that you can feel the comfort surrounding you. I didn’t expect to read this.

Yes - become the spouse you are, and allow yourself to relax in that the best you can. You both have fought through this ... you have kept the faith ... blessings surround you. I am praying for you and Larry this morning. Xo

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Heady

Jeff, you have done all you can possible do. You owe to Larry and yourself just to become his spouse again. I promise, you will never ever regret this. I know I spent the last few days of Steve’s life, being his wife, others did the caring. The comfort that has and will always give me is immeasurable, I feel it was the only real thing I got right.

My heart goes out to you at this terrible time. As a friend across the pond, I am soooo glad you have managed to get some rest these past few days, you will need that extra bit of strength now.

Sending big hug, much love and all the strength I can manage across the ether, to you.

Lots of love

Anne

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Laurel54

Your decision to put Larry in respite care turned out to be a very provident one. Let the nurses take over managing his comfort so you can focus on just being with him. My heart goes out to you. My mother died of what I now believe was PSP (then diagnosed as a dementia with Parkinson’s features) in 2014. I was with her when she passed and she slipped away very gently, it was easier than I expected, especially compared to the hellish ordeals she went through with her disease.

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easterncedar

oh Jeff, this must seem so sudden, even after all these years of care. I am so sorry, but it seems he is in a good place and getting the care he needs. This is a gift. You have struggled so hard. I remember feeling kind of a white noise sort of shock for many many days immediately before and after. I coped well because of that. I hope you have someone to support you nearby? You always seem so self-sufficient. My family was all far away, and I asked them not to come, (His family had come when they could while he was alive.) but I had an old buddy who came up the day he died and she brought food and made me eat and we drank and talked for two days when he died. I will always be grateful for that. I would do that for you if I could. Love and peace, Sarah

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Caro2132

Oh Jeff, I am so sorry for you and for Larry. I am sure this is the hardest time of the whole damn disease and my heart goes out to you.

Love and hugs

Caroline

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Yvonneandgeorge

Oh Jeff thinking about you both, agree with everything everyone has said take time to enjoy your time together, you can just concentrate on being with the person you love unconditional love xxxx

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SewBears

Even when we anticipate this step it still sneaks up on us. I’ve had you on my mind a ton and I just had a feeling that this might be it. I’m so sorry! May you both find peace and learn to let go. I don’t think that we are ever ready for any step of this excruciating disease, especially the ending.

Sending hugs and love ❤️

I SewBears

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Sarah1972

Thinking of you Jeff, hopefully Larry will find peace soon. In the meantime just be a couple and share your love with him xx

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Kevin_1

Hello Jeff

I'm thinking of you both.

This damned illness , struggle, pain and tears.

I hope he is comfortable and feels your love.

Warmly

Kevin

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honjen43

Jeff, you must have many mixed emotions at this time. You have cared for Larry so well throughout his illness.

Yes, so provident he is in respite care and you can sit by his side as a partner.

My love was in others care just a week when he died and he too seemed relaxed and ready to leave. I hope you get to be by his side.

I stayed beside my love for 3 days after his nurse began to administer morphine. My love was concerned for my feelings, as always, and died while I was away getting refreshed after sleeping in the chair in his room.

Am thinking of you both. Take care.

Hugs

Jen XXX XXX

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Katiebow

It is a blessing when you feel you have verything in place and are able to be there with Larry in the final days of this terrible disease giving him love and comfort. I always believe that is what we would all like at the end of our lives. The one good thing that comes out of all this madness is the openess we are able to talk about death, others who haven't been through terminal illness with a loved one are afraid to mention the D word and I really don't think that is a good thing, we have become very detached from death and try to keep people alive artificially making it difficult to say our goodbyes. I was grateful to be able to do that for Ben and am sure it helped him on those final days. Thinking of you and sending much love.

Kate xxx

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enjoysalud

Prayers.....................

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dollydott

Holding both you and Larry in my thoughts and heart Jeff

Lynda ❤

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Ticketyboo555

You have done the right thing for Larry, as you always have throughout this horrid illness.

Thinking of you both.

Big hugs

Sue

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Bettina545

I’m so very sorry Jeff.

Sending you love and positive thoughts

Betty

Xoxo

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Dance1955

So sorry Jeff that wasn’t how it was spose to be was it

Sending love and peace to you you have done an amazing job with Larry well done

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Hiking13

Dear Jeff

I am thinking of you both at this sad time. Stay strong and hold him, love him and when the time is right give him permission to go and tell him you will be ok. I read this on here before my lovely Steve passed away and it really helped me in those final moments and I think it helped him too. Take good care of yourself too as this will be exhausting in a new way. Sending you lots of love and hugs.

Love Sarahxxx

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Jimjam22

Sending love and hugs to you both xx

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Sunsetboulevard

Sending you love and courage

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Dickenson2

Jeff you have done such a wonderful job of caring for Larry that now you can just spend the time left just being with him and let others make him comfortable xx

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AnneandChris

Oh Jeff

My heart goes out to you. You are right to be a lover and not a carer for as long as Larry has now got. You are being wonderful, keep on keeping on.

Hugs from the UK

Anne

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Dickwin

Jeff I am thinking about you and Larry. My heart goes out to you. Spend this time with him and love him. Your work is done and you have performed it admirably.

Dick

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Melhukin

Thinking of you on this journey 💙

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AJK2001

I can only echo what everyone else has said. Thinking of you & sending love & hugs to you both. xxx

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Toddet

Sounds like you’ve made the best decision for you both. Take care and blessings to you both xx

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georgeg25

Oh Jeff, I didn't expect this so quick. Be with him and tell him how much you love him. My prayers and thoughts are with you both. 🙏🙏🙏💔💔💔

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NanBabs

Jeff, thinking of you both at such a difficult and sad time.

x

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daddyt

Prayers for you both. God bless.

Tim

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JantheNana

Jeff I have stayed in touch with this site for 2 years now since my loved one’s death and have found comfort and help here still.

I am thinking of you at this time and praying for you both. May you have the peace that passes all understanding!

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racinlady

Jeff, Enjoy these last few days as much as possible. They are a gift where you are not consumed with caregiving and can be a partner again. This is as it should be. You have taken great care of Larry. He's very lucky to have you. Now he can just feel your love. You both will be in my thoughts and prayers over the next few days.

A big hug,

Pat

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Cuttercat

Thinking about you both and praying things will be warm and calm. Love him like you always have. Bless you.

Cuttercat

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Lillipilli

Both you and Larry are in my thougths. Hope everything will be peaceful for both of you.

The battle seems to be over, now is the time to love and remember.

A big hug from me, Elvira

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Skye04

Am with you in thoughts and prayers Jeff wishing for a peaceful passing for Larry ....

Liz

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Fairygirl13

Thinking of you both, sending love, Sarah x

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Cinnylou

Jeff, you’ve been weighing heavy on my heart since we heard Larry was failing. Praying for peace to you and Larry at this time of transition.

Cindy

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Inparadise

Praying for you during this difficult time.

Kerry

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Kmacgamwell

You are doing a kindness for both of you.

My heart goes out to you.

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journeyofjoy

Jeff,

My heart goes out to you. Praying for peace for both of you. As someone else said, you have done an admiral job. Your love, devotion, and strength shine through in your posts. I think it was meant to be to have others caring for Larry so you can just be with him. Please keep us updated when you can.

Love and Peace, Joy

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