End of life- the year long journey,
March 2, 2021 at 1:28 am #54086
So, my 79 year old grandfather was diagnosed with MDS and a P53 variant in January of 2020. We were given a 6-12 month prognosis by his specialist at Moffitt (Dr Sallman- highly recommend) in Tampa and his local oncologist in Fort Myers agreed. He immediately started Vidaza and did a 7 day cycle every month. He spent most of April and May pretty miserable but then got significantly better. He spent the summer into September feeling fairly well and not needing any transfusions. We were even able to Travel to Texas twice and spend many afternoons at the beach- which he loves! The Vidaza ran its course and stopped working in September, and we decided not to do the October cycle. By November he was transfusion dependent, receiving platelets weekly and hemoglobin monthly. The week before Christmas he was hospitalized with a high fever, and that was the beginning of the downturn. He continued to receive transfusions until mid February- at that point he was losing his appetite, sleeping more and there were no additional trials on the horizon- things were simply getting worse. We made the tough decision and we signed up for hospice care, ending all transfusions, blood draws and hospital visits. As of today it’s been two weeks with hospice- I’m sure his platelets have long since depleted, but he’s only had two minor nose bleeds, and I’m sure his red blood cell numbers are low. Today he spent about 90 minutes out of bed, ate about 150 calories worth of food and drank maybe 20oz of fluid. His oxygen levels are in the low 90’s and his blood pressure and pulse jump around a bit. He can’t walk or sit up on his own and is basically incontinent. He’s also not communicating well, and has difficulty remembering words and dates etc (today he couldn’t remember his ailment- MDS).
I’ve been his primary care giver for a year, leaving my home, family and business back in Texas to here with him, as I’m all he has. I know the end is coming quickly, and am hoping it’s painless and peaceful for him. The last few months have been rough, and heartbreaking- I wouldn’t wish this on anyone. I just wanted to share my experience with this horrible disease.
He would turn 80 on March 26th 2021, and I don’t think he’ll see it. He lived a great life overall, and I’m happy I was able to be here with him this last year- allowing him to stay in his home, with his dog, and keep some sense of normalcy. It’s been hard for us basically switching roles- my becoming the caregiver and him being dependent- but we did finally find our groove. I have read through so many stories here on this message board over the past few months, it has helped a lot! I’m glad I was finally approved today to be able to post. I can’t stress enough how great hospice is- to have someone there 24/7 to come or answer questions makes it so much less stressful. Not only that, the hospital bed, commode, nebulizer, oxygen, bedside table, linens, pads, diapers, creams, medications… The list goes on.. They definitely know what they are doing.March 3, 2021 at 1:29 am #54162Amy ClarkParticipant
Hi Michael, I am sorry you all are going through this right now. This disease is so very hard, but I am glad to hear you have found some support through hospice. I will pray that your grandfather has time to come to peace with God before he dies and I will pray for your family during this difficult time. Thank you for posting. We appreciate your show of love for him.
March 3, 2021 at 10:18 am #54167
- This reply was modified 2 years, 6 months ago by Amy Clark.
Your description of your grandfather’s journey is very similar to my husband’s. He was 66 years old and had been receiving blood and platelet transfusions weekly since May of 2020. He decided the week after Christmas that he wanted to stop transfusions and Hospice came in New Year’s Eve. He passed away just before midnight January 13th. The room that he was in had the hospital bed that he was in and another bed that I slept in right next to him. The night before he passed I dreamt that he had gotten up out of bed and walked over to my side, startled, I jumped up thinking he was going to fall and I looked over and he was still laying in the hospital bed. Minutes later he yelled out my name (he hadn’t spoken in a couple days) and I went to his side holding his hand with no response. The next day he never moved and he passed that night. I know in my heart that night before he passed is when his soul left his body. God Bless you for being there with your grandfather so that he can be there in his home. Stay strong and know that you are truly loving your grandfather unconditionally.March 6, 2021 at 2:04 am #54192
Amy and Pat- thank you both. He’s still putting up a fight but he’s struggling more and more. Today he only spent 90 minutes out of bed and tonight he coughed up some blood. I pray the end comes quickly- he’s so unhappy being a burden and has told me goodbye a hand full of times now.March 7, 2021 at 1:35 pm #54193
Stay strong he needs you more now than he ever did. This will probably be the hardest thing you ever go through. You spent this last year helping him live and now you are there for him helping him die. Cherish every moment with him even though it is so very hard to see him suffering. God bless you for being such a loving grandson. My thoughts and prayers are with you. If you’d like to talk let me know and I will send you my email.March 8, 2021 at 11:50 am #54199Hope RuizParticipant
Just like you I left everything to be with my grandfather. We got to celebrate his 90th birthday February 27. He has been feeling ill for over a month. He was asleep more than he was awake and needed blood transfusions every other week. Days before his birthday he was getting back pain. Monday after his birthday weekend which was this past Monday, he fell.
My grandpa struggled to walk and on Thursday he couldn’t move. My dad, Mom and I had to carry him to take him to his bed.
These past few days have been the hardest for me and my family. Thursday was also the last day he has anything in his stomach as far as food. My grandpa has given up at this point.
He’s leaving me soon. All I can say is that he’s been in so much pain his whole lower body. He declined hospice. He told us we had to obey his wishes. It hurts so much to see him in agony. Everyday hour I see my grandpa reaching death closer and closer.
He prayed with me yesterday for the last time which was something we always did together.
Last night his hands, feet and legs were super cold and his hands are turning purple. I know the end is near.
All I can advice is to tell him everything now while he is coherent. My grandpa and I talked already. It was beautiful and heart breaking and he told me out of all of his grandchildren I never left his side. They know and they are grateful for everything we did for them.
I’m glad I quit my jobs this last year of his life so I can take care of him and cherish every moment together.
I will be praying for you and him as I know exactly what you’re going through. Don’t hesitate to reach out to me.
EsperanzaMarch 10, 2021 at 3:09 pm #54202
I’m sorry it’s been so hard on him, and I’m sorry he’s declined hospice- they have been amazing. We spend 3 weeks on home hospice care and Monday it just became too much and I admitted him to hospice house. The last 12 hours he’s kind of reawaken. He hasn’t talked much in 5 days and all of a sudden he’s communicating clearly… But he hasn’t eaten in 6 days and hasn’t had much in the way of fluids. He’s lost the ability to walk and had been bed ridden since Saturday basically.
I know the end is near- I hope for his sake it comes quickly because he really is miserable. I’m afraid with this “reawakening” that he could hold on for weeks longer…
Anyways, enjoy the time you have and I hope your grandfather finds a way to be as comfortable as possible!March 22, 2021 at 12:35 am #54246Rose eden GuanzonParticipant
When I read this, I just felt happy that your grandfather has you, Michael. MDS is so delibitating and having a loving caregiver gives real comfort.
Pat, I am so sorry for your loss. Though we have never met, you made me feel less alone when my husband and I were so scared after the transplant. Praying for your husband’s soul and for you too!March 22, 2021 at 10:36 am #54247
Rose how is your husband doing? I think the last time we messaged you both had just come back from traveling.March 23, 2021 at 7:54 pm #54249Rose eden GuanzonParticipant
He is doing very well. Thank you for asking. He even breezed through his 2nd dose of the covid-19 vaccine. His counts are normal. We consider each day a gift and are grateful.March 24, 2021 at 11:06 am #54261
I’m so happy to hear that. Cherish everyday!
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