Find it hard to post on these forums....my Dad has PSP at the last consultants meeting he was told less than 12 months. We now have appointments this week with the palative care team and the PEG team.
We nearly lost him in March this year to sepsis they told us he wouldn’t make it we had the family around the bed but he pulled through. He came out of hospital unable to walk talk feed himself incontinent he just sits there.
I thought going through the March episode it would prepare me for the inevitable but I am lost. I am a home domicile carer and I still struggle.
Has anyone had the palative care team involved do you know what I can expect so I can prepare my mum who is his carer...
My heart goes out to every post I read on here ❤️ He was 72 last monday I am so proud of him
Written by
Nemo14
To view profiles and participate in discussions please or .
I had the home palliative care team from our hospice. They were brilliant. I could not have had any better support. My husband died last October. His ending was peaceful and the carers were so loving. It was so much better than I had dreaded.
I hope you have a similar experience.
Although I knew he was dying and wouldn't have wanted him to continue suffering I was devastated when it happened. We are never ready.
We have been supported by a Palliative care team for more than three years now, I have a palliative care nurse I can ring any time, and she rings me from time to time to see how we are getting on,the team works very closely with the hospice and district nurses. They are superb. The cream of the nursing profession.
Hello Nemo so,sad to read another post where PSP has struck again. my hubby died at home in December and the palliative care team were very kind and gentle so my hubby went peacefully and without pain. Unfortunately nothing can prepare you for something so final. Love Jxx
We are not there yet either but everything I have heard about Palliative Care has been so positive. They will be there for you and guide you. You have come to the right place here for support.
Welcome Nemo - I didn't have that experience, but just wanted to say your dad at 72 is way too young for this. We can't change it, but we can recognize, along with you, that he was robbed. He deserved better. Hugs to you for looking out for him XXX
The Palliative Care Team are the best to help you through this distressing time, that's what they are trained to do. They are very special people with a calling to do what is best for their patient and support the family.
You have come to the right place for support and information during hard times. The people on this forum have helped me through difficult times caused by this terrible disease.
My wife was under palliative/hospice care at our home this summer before she passed. To reiterate what kenh1 said, the hospice nurses are the cream of the crop. My wife’s neurologist has suggest that I look into palliative care for my wife, but I didn’t follow up with it until we had a hospital visit due to a fall. That stay helped me realize that I needed the help to care for my wife. The hospital helped me find the care from a list of about 50 companies that provide that care. I interviewed a few that specialized in neurological care and selected one. Not only did they provide loving and compassionate care for my wife, the company focused on my entire family offering spiritual and social services( but not pushy as I was selective for my family’s needs).
I now understand not all are alike. I recommend that you interview and check references carefully. I was blessed to find one that focused on care and not profit.
Prayers of wisdom and strength to you and your family during this difficult time,
Unfortunately none of us one the forum can change the inevitable outcome. What we can do, is support you, offer whatever we can and be here when you reach out.
Hi sorry to hear this, having the hospice involved has been great for us, they fast tracked mum for continuing care which was in place within three weeks, although I had tried twice myself to get it. Xx
Thanks everyone for replying its helped me so much 😊 sorry for not replying sooner it was hard for me to post but I am glad I did. This disease is so rare its really hard to talk to anyone who understands. I am so strong for my mum and dad this is the place I need to come to for myself 👍 xx
Nemo. I am so sorry to hear the situation you're in - this truly is a devastating disease.
We had our local hospice involved with my dad's care for the last 12 months of his life - he passed away in April. Although we were let down at the end when he needed them most, up until that point they were a lifeline.
I would urge you to make use of any and every bit of support they can offer - they will support your dad but also your mum and family too.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Rest in peace Dad
Four years
New Stage
