Nearing the end

[Northstar1]

Hello allMy poor husband is nearing the end unable to have food or fluids the hospice won't allow it due to the choke risk

Has IV fluids but not for long he's in a hospice. Not a good experience but that's another story.

The plan is for him to come home. He is not responding but will do every now and again.

Dr says he is deteriorating slowly. Without food or fluids she says he won't last two weeks.

He lies here seemingly awake eyes open for significant periods then he will sleep.

Last Wednesday in hospital he had pureed soup and smiled at me.

He has episodes like this after illness and bounces back though not all the way.

I keep thinking the Drs don't really know him how he presents and he will come around a bit, once he's home and we can try to give him bits orally.

I know he's so ill and the end is close it's so hard to predict.

Thankyou

[AliBee1]

My love and thoughts are with you both and your family as you move through these last few days. I am sure that he is loving having you with him even if it is so difficult for you. AliBee xx

[easterncedar]

Hello Northstar. I am very sorry for what you and your husband are going through. You sound so like me. You have all my sympathy as you travel this very hard road.

I was very glad to bring my sweetheart home after a respite stay that sent him spiraling down. (Overreaction to sleep meds we were trying to get right.) I also knew the (excellent, caring staff) didn’t know and were underestimating my sweetheart. There were some good, brief periods of rallies in the weeks that followed, and he even ate pretty normally again for a while. But one day he decided to refuse food and water. He died 10 days later.

For what it’s worth:

I am glad I brought him home. I do wish you strength with that.

I wish I had played more music for him. I wish I had worried less about his medications.

Don’t feel you need to push food. Toward the end the body doesn’t process it well and doesn’t want it. It’s hard because feeding is from infancy how we show love.

Love matters.

Do please try to care for yourself - a little at least. Please stay in touch

Sarah

[Northstar1 in reply to easterncedar]

Thankyou Sarah x

[Bergenser]

Will be thinking of you and wishing you strength and calm through this. As Sarah said “Love matters” 💜💜

[Northstar1 in reply to Bergenser]

Absolutely xx

[Kelmisty]

Nothing really to say but sending you love & support through this hard time. You know him best. X

[Marazion]

this sounds so familiar to our situation right now although we aren’t at the withdrawing of foods and fluids but we don’t know how long that will be. Mum is on puréed food and meds are mostly patches or liquids now and some have been withdrawn. She’s had several chest infections in the past few months and deteriorates each time. It’s so sad to watch and hard to know what to do. I hope you are getting support you need too - we had a chat with the hospice (mum is in nursing home) and it was helpful. Look after yourself.

[Dance1955]

so sorry Northstar1 my heart goes out to you no one understands these patients like us carers its a lonely place to be hugs to you be kind to yourself you are wonderful for bringing him home 🙏🏻xx

[RosieLadyDaisy]

So sorry - I’m in the middle of this journey with my husband. Very difficult as he’s quite non-compliant but then he’s always been very stubborn! Can’t imagine how he’ll be for the last leg …. just one day at a time but I’m 76 anyway - maybe I’ll go first!! 🥴

[45purple]

I so feel your pain. Karol was in the same position as your husband and had a peg fitted about 4 weeks before he passed in May it was the only way to get him home. Try to stay strong through this time. Although they are ready we are not. Sending hugs from Bonnie Scotland💜

[MullerRice]

Sending hugs and kisses - thinking of you.

[EggonToasttostart]

My heart goes out to you Northstar1. I hope that this period of time will be peaceful for you both.

[Independenceday]

It’s so hard I’m going through the same with my dad he keeps saying he doesn’t want to live like this which is the hardest thing to hear, sending hugs 🤗

[LittleOllie]

I'm so very sorry to read this, this was like my mom. She had fluids subcutaneous ( under the skin ) and responded well but then the hospice decided not to continue due to the risk of aspiration. She lasted 14 days without food and 9 days without water. It's so tragic...bless you...be gentle with yourself and your husband knows you are doing the best you can x

[Leosta]

Dear Northstar1, it's impossible to predict when. Even though you're expecting it to happen, when it does it will still take you by surprise. In the meantime get him home and spend as much time as you can with him. Wishing you strength and sending you hugs 🤗 xx

[Bertieandpiper]

My heart goes out to you. Thoughts and hugs xx

[Pinkcamelia]

My heart goes out to you at this difficult time. 💜

[SunriseLegend]

I am pleased you posted this as I have wanted to post something similar so the replies are really helpful. I am trying to appreciate what you are going through - but as so many on here have said before , and our specialist Parkinson nurse has confirmed, every person with this condition has different symptoms - so I have no idea how near to or far from the end my husband is. I am really struggling with that and it causing me a lot of anxiety . I wish you well at this difficult time

[HumbleHanna]

life doesn’t seem to throw much worse at us than watching a beloved die. I am with you from far away Nevada, USA.

A question your and related posts brought up for me, has it been peoples’ experience that hospice and hospitals etc. have allowed their patients to refuse food and drink in any form while under their care?

[Northstar1 in reply to HumbleHanna]

Hi it's not something I have experienced xx. Is this happening with your loved one x

[Sun-flowerwearer in reply to HumbleHanna]

Hi in the uk a patient has the right to refuse food and water in hospital and hospice if they are judged as having mental capacity. It is offered and if declined that decision is accepted. Many patients nearing end of life decline food and water

[Martina_MP in reply to HumbleHanna]

Yes in the US a competent person has a constitutional right to refuse medical care including food and fluids. compassionandchoices.org/re...

[HumbleHanna in reply to Martina_MP]

Thank you for appropriate response

[HumbleHanna]

Hello, just looking ahead to what my partner has expressed so far. It seems like such a mish mash here in the U.S. Blessings to you and yours.

[Richard33]

Northstar,

I am so sorry to read this and all of us here are thinking of you. Sadly we carers are all heading to the place you are now and there is no way out of it....

Richard x

[Northstar1]

Yes it's been six years since diagnosis xx the most challenging situation ever to have befallen our family x. Everything seems to have been battle especially CHC and it shouldn't be x

[Mydadmyhero]

Hello Northstar1

I sadly lost my dad in June to this absolutely awful disease .. he was at home when he passed exactly 2 weeks to the day that we had to stop giving him fluids and food he deteriorated rapidly we felt so mean not feeding him we tried giving him Jelly/custard just so he had something but in the end we stopped due to him choking trying to swallow , we had a syringe which we would give him a little drink from very slowly 1ml at a time and we also had sponge sticks which we wet and kept wiping his lips and inside his mouth I just wanted to reply to you as we didn’t have a clue how long he would last without food and drink and I wanted to let you know it was 2 weeks exactly, I am so sorry for what you are going through right now it’s absolutely heartbreaking medically psp is meant to be simular to Parkinson’s but after watching my dad a sporty man all his life refined to a chair/bed unable to speak, move , eat, drink I feel it is more like mnd I just wish there was more knowledge and awareness about psp this forum is amazing and has kept me going even now after dad has passed I find comfort reading stories … stay strong

[Northstar1 in reply to Mydadmyhero]

Hi I am so sorry for your loss it is heartbreaking . You have done your best keeping him at home. You describe our life our struggles and guilt around feeding. There are no fluids or food now. My husband has CBD equally as horrendous as PSP. He is still on IV fluids though I am sure the Drs will withdraw them at some point xxI have experienced several medical emergencies in the last three months with him in the night on my own. It's very frightening. With that in mind we have decided to remain in the hospice where there are a team of medics always around. Xx

[Bristolgirl]

why, when we google psp does it say it is not terminal?thinking of you both and all you are going through .