It’s my first post here. So my dad is 86 and been having treatment for Myelodysplastic syndrome (MDS) for the last 18 months. He has been on weekly blood transfusions for the last 6 months but sadly has become bed bound at home so hasn’t had a transfusion for the last 5 weeks. The doctor has been out and told my mum it’s time for hospice care
I am working in Cayman Islands atm so trying to get a flight home. I was home at Xmas and although very poorly he wasn’t too bad. Has anyone been thru this and seen what this time line looks like. I hope to be home tomorrow if I can get on a flight tonight. He’s quite confused now, not really eating and drinking has had a lot of bruising on his stomach and bad bed sores. It’s just heartbreaking
Welcome to our forum and thank you for taking time to reach out, it great you feel comfortable to do so.
I’m so sorry to learn of your circumstance, my heart goes out to you and your family.
I can sort of relate, in as much as I’m the dad and my son and daughter don’t live local, and I know they worry about me although I tell them not to. I cant imagine how it impacts them on a day to day basis, as I know they are trying to stay strong for each other and me.
You may find the forum link MDS - What happens if you feel comfortable please do have a look at it.
Don’t forget you can always speak confidentially with our support services team for information and support 0808 2080 888.
Hello @Dormouse65, I’m so sorry about your dad. I can only imagine how difficult these last few days have been for you.
I hope you managed to get home to be with him and your family. How are things now?
In addition to @GenesisDevice’s helpful response, I wanted to share this link to a Hospice UK webpage that might be a starting point for understanding the process and what to expect a little better.
And as Mike also mentioned, if you need someone to talk to, our support line is available on 0808 2080 888 or support@bloodcancer.org.uk. They’re there for family members too, and a re brilliant at offering guidance and support.
Please do take good care of yourself and know that we’re here if you need us,
I am sorry to read about your Dad’s deterioration. I do hope you managed to get home?
It is very difficult to predict a timeline, although if the doctors have suggested hospice care this does indicate that things are perhaps progressing to the end stage of life. It sounds like there are a few things going on and the hospice team will do their best to ensure your Dad is comfortable. This will take some pressure off your family and allow you to just be together. I am sure your Dad will really appreciate you being there.
Do use us as much as you need, we are all very much here for you. Our number is 0808 2080 888 should you wish to talk things through and of course our forum community is here, please do let us know how you are when you can.
Take care of each other,
Heidi J (Support Services Nurse)
Sending our condolences to you and your family. I am so sorry he didn’t get the hospice bed sooner but I am glad you made it back and could say goodbye.
If you need anything at all we are all here for you.
Oh @Dormouse65 I just cannot imagine how you are feeling right now.
We are still here for you, please do use us.
Give yourself time and grief takes it’s own path and we are all individual.Don’t forget the Blood Cancer Support line is there for you on 0808 2080 888
