Day 5: A very big thank you to everyone who... - PSP Association

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Day 5

Boyce3600 profile image

A very big thank you to everyone who has replied to me with such wonderful help for my husband who is having trouble eating and drinking unfortunately we are in day 5 now of no food or drink I don't know how he can do this his breathing is rapid and shallow other than that he just hangs on

24 Replies

Love and hugs to you xxx

My thoughts are with you. My husband also stopped eating. I felt he hung on for everyone to say goodbye - and then he went. I also remember how painful I found it although I agreed with his decision. Hugs Jean x

Boyce3600 profile image
Boyce3600 in reply to doglington

So sorry. yes very painful to see his disease ravaged body. was a strong muscular marathon runner. so hard to watch this. How do u ever find peace with this?

doglington profile image
doglington in reply to Boyce3600

Acceptance. It is what it is. But I can't make sense of it. I found comfort in being able to keep him home and having all there when he died - although he died when I took a short telephone call. They said this often happens. xxx

My husband hung on for 12 days with no intake whatsoever. We couldn't believe he was so strong. Luckily we had a fantastic palliative care doctor who came in every day to adjust his syringe driver and made sure he was calm and comfortable.

It's a time when you can stop being a caregiver and just focus on being with your loved one. I look back on it now as a special time, a time of transition. It was tough at the time, of course, and there were definitely episodes when I was stressed, tired, upset etc. but now, I have peace with that interlude and also how he passed. On his own terms. In his own bed, surrounded by people who loved him.

Strength to you. Try and be mindful and present during this time.

Boyce3600 profile image
Boyce3600 in reply to Sawa

i dont know what a syringe driver is exactly. i can guess but pls explain

Sawa profile image
Sawa in reply to Boyce3600

Think of a syringe driver as an alternative to a drip. It's a small, portable, battery powered device containing a syringe that is connected to a subcutaneous needle. Hubby had a cocktail of pain meds, meds to keep him calm etc. The syringe driver is set up to dispense this steadily over a 24 hour period, and the palliative care doctor came in every morning to check on him, adjust the meds, and reset the syringe driver for the next 24 hours. It allowed us to keep hubby at home and comfortable.

Boyce3600 profile image
Boyce3600 in reply to Sawa

is it morphine

Sawa profile image
Sawa in reply to Boyce3600

There was morphine in my husband's syringe driver, but the exact meds to be dispensed will be determined by the palliative care doctor, what is required as well as your loved ones final wishes. We consulted with the palliative care doctor months before, so my husband's wishes were clear, and I was consulted at every single step to ensure that we were honoring what he wanted. My husband asked that we don't unnecessarily prolong his life, and we respected those wishes. But I also didn't want him to suffer or be agitated, so we gave him only what he needed to be calm, comfortable and pain free, and then let him embark on his journey in his own time.

Boyce3600 profile image
Boyce3600 in reply to Sawa

sounds like your team respected you and did as u asked. I am happy to hear that. I am sure it helps later on reflecting

I was fortunate to be there with my husband as he took his last breaths, holding his hand and telling him how much I loved him.

Have you hospice/pallitive care? They will assess whether your husband is distressed or not and offer medication if needed. This is generally given through a syringe driver, which is an automatic device that delivers the medication continually & is normally placed into muscle at the top of the arm. Mum had one her last couple of days just to make sure she was comfortable on her last journey. Though a hard time it was also a very special time & I look back on it with gratitude that I had that time with her and she was able to die at home with the people she loved and was looked after by carers that she knew and liked.

Boyce3600 profile image
Boyce3600 in reply to AJK2001

No Hospice or palliative care. We dont want morphine. he shows no signs of pain but thecshallow rapid breathing is dusturbing to me . only me and my daughter here Care giver cones and goes

There are other mediations that can ease the breathing other than morphine if you feel he would be more comfortable and ease his transition. It a personal choice but sometimes good to know there are other options if you need them. peace and hugs -its a difficult time no matter what.

Sending big hug and much loveLots of love

Anne

Thinking of you both at this difficult time, just spend time being with him.Hugs xx

Sending you love and peace during this challenging time.❤️

Hugs and prayers

Thinking of you both and sending love and hugs. At the end of days for my darling husband he received "comfort care" in hospital--medication for pain, anxiety, and to dry up the excess saliva which had caused so much prolonged coughing. I hope, as others have suggested, that you have a palliative doctor or team helping you both at this time so that you can be reassured that he is as comfortable and pain free as possible, and you can simply focus on being with him, holding his hand, and not be stressed about his care. Hugs, Purrlie.

Thinking of both of you at this time. Take care

I am sorry for this very arduous experience. You are taking great care of him. I realize you have said you don’t want to use morphine, and maybe you have had or heard of bad experiences before, but just wanted to mention it is not only used for pain, it also alleviates the distress of feeling short of breath, and can be used when a person seems to be breathing hard.

Boyce3600 profile image
Boyce3600 in reply to Martina_MP

when it is used that way does it hasten death

Martina_MP profile image
Martina_MP in reply to Boyce3600

Perhaps not all will agree, but usually the priority when someone is clearly at the end of life is comfort. That is the intention of using drugs such as morphine, giving just enough to keep the person comfortable. They are not intended to cause or hasten death. Morphine does reduce the drive to breathe and thus reduces that sense of struggle, anxiety, and distress. Some people who are made comfortable are then able to relax and be at ease and let go. You can discuss your concerns with hospice or the doctor and use small doses following their guidance. Of course you have to feel comfortable with whatever you decide.

Sending you both loads of love ❤

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