I have been taking care of my parents for 15 years .My Mom is a diabetic. In 2014-2015 my Dad who was in his 70’s showed low platelet levels thru routine bloodwork.He was referred to an oncologist.For the next 5 years, he had a back surgery and required a platlet transfusion ,a year later a hip replacement which he didnt need platelets.In 2021 he was having a routine physical and was diagnosed with anemia and referred back to his oncologist and was then diagnosed with Myelodysplastic syndrome (MDS) He did weekly bloodwork and some weeks required infusions and after 4 months or so his anemia was taken care of.He has bloodwork every 3 months since and up until last month everything was the same.Thats when life as I know it changed. He went for his lab work and was home for a little while when the lab called and asked him to come back asap and from there send to the ER. He was SEVERELY ANEMIC and required 2 blood transfusions.A week later admited for a bone marrow biopsy.It was a dry draw and he was diagnosed with an Myeloproliferative neoplasms (MPN), Myelofibrosis. Unfortunetly Dad has dementia but I understood what that meant. We discussed meds to slow the progression ( no chemo or anything drastic hes 84 but decided to do what we could. We did the spleen ultrasound and the bloodwork… The Myeloproliferative neoplasms (MPN) diagnosis was bad enough but gave us at best 14 months The bloodwork from the 2 week follow up however told another story.He has Acute myeloid leukaemia (AML) and has lost and is losing weight ( 45 lbs in 4-5 months).He doesnt have the quality of life he deserves and its truly BREAKING MY HEART seeing him wither away.After the Acute myeloid leukaemia (AML) diagnosis I talked to my family and we have decided on Hospice. The hardest decision I HAVE EVER MADE
I just want to do “THE RIGHT THING” My Dad has always been larger than life.A Good Dad Strong,on top of everything and had a very sucessful carrer in the Navy. Its hard seeing him fade.Prolonging his passing with the MF diagnosis was the plan but now that its progressed there isnt really a point. I still have my Mom ( the have been married 63 yrs) to take care of( shes a diabetic) I have support and family but I have never felt more helpless lose him and taking care of everything and making sure my Mom is taken care of too
Hi @Serina and a big welcome to the forum. I am really glad you felt able to share your story on here. You will find people who understand and who can listen and support you.
I can only imagine how difficult this decision must have been for you and your family. However, I’m glad you were able to have these discussions and decide on the next steps.
I don’t think there is a right or wrong decision, but I do think, from reading your post, that you have made the best decision for your dad.
It’s funny isn’t it, we can have lots of support around us but still feel so alone. You have been such a big part of your mum and dad’s care that of course it’s going to hit you hard and you must be very worried about your mum as well.
This is a space where you can share how it is for you. There are many who have been is the same position as you and I hope they can offer support for you.
Please remember the helpline is there as well. They are amazing. Here are the details:
I know it’s hard, but you need to take good care of yourself to. Please keep posting. We are all here for you x
Hi @Serina thank you so much for having the great courage to post on our support forum.
I cannot imagine what you all have been going through and I am so glad you have been able to discuss options as a family.
Personally I think the amount of guilt you very naturally have is because you love your dad so much. Yes, the hardest of decisions.
Also your dad’s deterioration must be heartbreaking for you all to see.
@Nichola75 has given you a brilliant response
Just to reiterate you have the Blood Cancer UK support line details there for you.
We are here as a space where you can say how it really is for you.
Please do look after yourself as well as you are looking after your parents.
Please do keep posting and be ever so kind to yourselves.
Thank you everyone.I definetly have support an AMAZING HUSBANDwho moved from Detroit to CA because I take care of them.My Daughter and nephew are also amazing.We are all stepping up and doing all we can to support eachother while dealing with losing him. I’m however the one who has been handling things and I have had to be the one to deliver the news and as much as my Heart is breaking losing my Dad that was harder then I thought possible.I consider myself BLESSED to have had my parents I’m 55, my Dad is 84 Mom 87. His dementia was an issue but we were dealing with.The Myeloproliferative neoplasms (MPN) and then Acute myeloid leukaemia (AML) in a month and 1/2 has been a shock. My husband and I are putting in our notice the 1st of May for our apt and moving in with them. I’m just trying to educate myself about what to expect.He already sleeps 14-16 hrs a day. He barely eats,and struggles with everyday things like dialing the phone or using the TV remote. Since he came home from the hospital following his biopsy and MF diagnosis we have not let him drive. He hasn’t been happy about it but it’s WHAT HAS TO BE We have been taking care of all the driving. I know it’s different with everyone but I am curious.About 2 weeks ago he went over to the neighbors ( a neighbor that’s aware thank goodness) and asked if he could use their phone to call 911 he was locked out but While talking to 911 he that I had done something to his phone so he couldn’t call anyone and he was being held prisoner in the house but he’d managed to get away.The pd basically blew him off. The neighbor called me and I’m less than 5 minutes away.I arrive and he is back home and trying to call the cops again.The issue was he wasn’t dialing a full number and so his calls wouldn’t go thru.I showed him and explained the issue.Then asked why but that went nowhere.Today I get there for the 2nd time today and he has gone to another neighbor but we had no idea where he’d gone. We start looking I get a call and this time he asked if he would call 911 that we won’t let him out of the house.He is being held against his will. Anyone deal with this? It’s an issue that bothers me I don’t want him feeling that way Suggestion? We take him out he is just not free to come and go
Hi @Serina I really feel for you, I have no answers, it must be so difficult.
Thinking about you, look after yourselves
Hello there @Serina, welcome to the forum. I’m so sorry to read of all the health concerns your family has been experiencing, but I’m so glad you reached out and found the forum. I’m sure if you look around you’ll find other members living with similar and even the same diagnoses as your dad, which I hope might be of some comfort.
I can’t really speak to the health issues your dad is experiencing, apart from to say I also live with a blood cancer called Polycythaemia vera (PV) that is part of the family of Myeloproliferative neoplasms (MPN), and mine can “transform” into Acute myeloid leukaemia (AML) in rare cases so I stay aware. Maybe you’d like to read about Acute myeloid leukaemia (AML): Acute myeloid leukaemia (AML) - what it is, symptoms, tests, treatment, prognosis and support. | Blood Cancer UK
Here’s information about Myeloproliferative neoplasms (MPN): What are myeloproliferative neoplasms (MPN)? | Blood Cancer UK
I’m so sorry your dad went through a couple of different diagnoses first, I imagine that was very alarming. It sounds like he was initially diagnosed with Myelodysplastic syndrome (MDS) and then myelofibrosis, but further testing like the bone marrow biopsy found that Acute myeloid leukaemia (AML) is a closer diagnosis. To have diagnoses change like your dad is not that uncommon from what I’ve read around the forum. Sometimes it takes further testing before the exact blood cancer can be matched to symptoms and what’s going on in our blood cells and bodies. My own diagnosis was almost Essential thrombocythemia (ET) but my BMB showed that Polycythaemia vera (PV) was a closer match and my treatments are based on that.
I note that you said you’re in the US—I am too, howdy! Perhaps you know that the US has an equivalent blood cancer organisation to BCUK called LLS. LLS have many of the same types of support as BCUK, plus a specific US-centric buddy system, financial advice, and supportive experts you can call free on 800-955-4572. I’d say check out LLS: https://www.lls.org
Here’s their information about Acute myeloid leukaemia (AML): Acute Myeloid Leukemia (AML) | LLS.org
And just a note but I take daily chemotherapy in capsule form and am back to leading a normalish life just a couple of years since diagnosis with Polycythaemia vera (PV). Obviously follow the lead of your dad’s haematologist, but please don’t write off your dad having treatment like chemotherapy as it isn’t always as drastic as its reputation suggests. There are many types of treatments that aren’t even classed as chemotherapy but can still make living with blood cancer easier than no treatment at all. Even though his dementia might make it hard for him to make decisions, I’m sure LLS would be able to advise on what support is available to him and your family locally.
Hope that wasn’t too much information @Serina, thinking of your dad and you supporting him through this horribly stressful time.
Never too much I appreciate the feed back BIG TIME
Chemo was never an option.He is 84 and while it rare he had Myelodysplastic syndrome (MDS) for years then it was diagnosed as Myeloproliferative neoplasms (MPN) MF but unfortunely that changed when the final test were done on his aspiration and it’s Full-blown Acute myeloid leukaemia (AML) and his dementia is BAD we actually had an incident that involved the police and I was all for treatment ( excluding chemo) but prolonging it now would be wrong.Even with the Myelodysplastic syndrome (MDS) diagnosis at 79 it wasn’t on the table.
I am just in shock at the speedy changes happening and how bad his dementia is.They say he has 3 months and my goal is to keep him in his home they way he wanted but I have to weigh things and I am going todo everything I can to keep him home but the “episode” today has me rethinking things and preparing myself that may not be possible
Hi @Serina from your post I can see that any decision you take will be so hard as you obviously care and love your dad so deeply.
I find that sometimes just using our forum as a sounding board just helps me slightly when I re-read what I have written in black and white.
We are here for you and really look after yourselves