Hospice Care

[JanesDaughter]

Hello All,

I am brand new to this site. My mom Jane has had MDS for a few years. Transfusion dependent for the past 2 years. She was getting them every 2 months...but over the past year, it's been every month. This past month has been every 2 weeks. She has a living will, and does not want this. She also has COPD & Alzheimer's, she is 85. Her quality of life is not good..she is no longer walking. After speaking with her oncologist, we decided to put hospice in place. Her last transfusion was on May 7.

My question...how much longer does she have? What will happen to her....one ER doc told me if she didn't get the transfusion, her body would start shutting down....what does that look like?

Thanks,
Jane's daughter..Lisa

[Florida Gal]

Lisa,

I am sorry to learn of your mother's condition. I don't have a specific answer for you but just wanted you to know that I am thinking of you and your mother.

May God bless you both.

Florida Gal

[bebop]

hi. I recently lost my dad to mds. May 3. he was transfusion and platelet dependent. he was getting blood once a week for many months and platelets since october but had started getting 4 plts per week for a couple of months. once they stopped all of his he lasted a month. feel free to pm me. honestly it is very hard to sit and watch. Dad and I were extremely close.

[Noni]

Hi Lisa. I am very sorry to hear about your mother. My mother also suffered from copd and dementia but she was several decades younger. She was diagnosed with MDS and died in less than six weeks.

A week before she died she confided in me that she didn't want to continue the chemo treatments. It was very difficult to hear because I knew what she was saying. She was in an incredibly amount of pain and was tired of fighting. I told her it was 100% her decision and the family would support whatever she needed to do.

She ultimately decided to continue but it made no difference. She had treatment on a Tuesday and died the next day. Sometimes I wonder if she would have lived longer and happier if she didn't receive any treatment at all during those six weeks. The chemo was very hard on her and her quality of life brought tears to my eyes. It's a terrible disease.

I think my point is there is no telling with MDS, or any other illness I guess. I pray that your mother's pain is controlled well and you are all comfortable with her care. I'll be keeping you in my thoughts.