What do people without families do?

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• August 1, 2020 at 1:39 am #52594
  Mark Topaz

  Participant

  I read so much about caregivers and what they have to and how important they are to recovery. Well, not everyone has spouses or children or living parents. What are we supposed to do? Where can I find information dealing with folks who don’t have anyone to be a caregiver? I have friends but that’s not the same and my best friend retired and moved across the country. The rest of my friends aren’t seniors and they still work. I told the doctor I could hire people but she seemed dismissive when I brought it up. I’m not crazy about the idea either but may not have a choice.

  August 2, 2020 at 7:07 am #52605
  Kathy Stermer

  Participant

  Hey Mark, we spoke on the phone when you were first diagnosed. It’s a tough decision to go through with transplant or not and you do need to have someone available to help in a caregiver role. If you’re connected to a transplant center don’t they have social workers or care coordinators to help you navigate this aspect if considering transplant? Am sure there are others in your situation they have been able to help. You have to be your own best advocate and push for what you wan/need. Where I worked with transplant families they also had “care partners” people who volunteered to help those who needed it. Keep asking what options are available to you.

  August 2, 2020 at 9:09 am #52606
  emily59

  Participant

  I had my transplant at 59. The plan was that I’d stay w a family member when I was released. However the night before discharge this fell through. I told no one. Lol. I was afraid they’d make me stay! So, I was discharged to my home alone. I had a friend from out of town come in once a month to cook for me. She’d fill my freezer. Also had the house cleaned once a month. I was able to do basics, like wiping down counters, cleaning sinks, etc. but the rest I left for others to do. I had groceries delivered. So many protein shakes. It’s doable, just wasn’t fun. I did have transportation for appointments. That can also be arranged through the American cancer society. You may need to Uber until you feel well enough to drive. I was lucky. I had no complications. You can hire aides to come in as needed to cook, clean, change your port dressing. You need to flush it once a day, but that’s easy. I don’t recommend this situation at all, but we do what we have to. I was told prior to transplant that if I didn’t have a caretaker they would not do do the transplant. Found out later they would have helped locate nursing staff as needed. Hope it all works out for you.

  August 3, 2020 at 11:04 pm #52625
  Amy S.

  Participant

  Emily was right and very lucky. I was in the same situation with no caregiver or social support. The doctor in the transplant center did not consider me a transplant candidate. Together with the fact that there was no match in the repository and my sister was only 50% match, He told me to go with the chemo treatment. He said that if I responded to the treatment, then do not do the transplant because I would be a very sick person for at least a couple of years after the transplant.

  August 4, 2020 at 2:34 pm #52634
  Dr. Lin

  Participant

  Would also suggest that you talk to the social worker to see about other available resources, both financially as well as logistically

  August 4, 2020 at 2:41 pm #52636
  Rita Knopick

  Participant

  Mark, Look into the drug called VENCLEXTA. It is a targeted drug for AML. It is in pill form although you have to take 6 pills a day and drink 56 oz of water daily. It’s given with injections of chemo 10 days on 10 days off.

  August 5, 2020 at 12:41 am #52637
  Mark Topaz

  Participant

  I have already had my AML treated and brought under control with Vyxeos. I need to cure the MDS because if not, I’m told that the AML will just come back.

  August 5, 2020 at 3:07 pm #52647
  Amy S.

  Participant

  I assume that you are aware of the webinars offered by MDS Foundation. See this link https://www.mds-foundation.org/?s=webinar

  There is one “MDS Therapies and Options 2020” on 8/8 that might be informative.

  August 5, 2020 at 9:19 pm #52648
  Vicki Soukup

  Participant

  Mark,
  I am in a similar situation – diagnosed with MDS, but I have no caregiver or family. I have spent many a nights wondering what I will do – relying on Uber, bringing in help…I refused transplant for that reason. If I have trouble getting to chemo treatments, it is not likely that being able to have someone take over your life during your transplant recovery is a realistic option. I am terrified on a daily basis – I receive the Vidaza infusions as well as a study drug, Entessenanib. My quality of life is horrible and there are times that I wish I lived in a right to die state when I become unable to care for myself. I am so glad that someone brought this topic up…it is so helpful to know that there are others who are dealing with this.
  Vicki

  August 29, 2020 at 8:12 pm #52743
  Mark Topaz

  Participant

  I am trying to set up a mixture of friends to help me, as I don’t have any spouse, siblings or children. This way it is not put on any one person but if I have a half dozen people who can each give me a few hours a week, I think I should be okay. Initially they told me I would need someone for 24 hours the first 2 weeks and that was problematic. I have a one bedroom apartment so no place for someone else to sleep, unless I bought a cot. Anyway, I’m hoping that the team effort approach will work as the burden is spread out among several people. I would suggest seeing if that’s something you can do. Not sure what you are referring to with chemo treatments. I was in the hospital 2 months when my MDS turned to AML. I’ve had 2 rounds of consolidation chemo since I got out to solidify my remission. The chemo before transplant is given after you are checked back into the hospital. If you need follow up visits after you are released, check and see if insurance will cover it. This is all stuff you should discuss with the social worker at the hospital. Good luck.

  October 9, 2020 at 1:28 am #53156
  Kathy Lynch

  Participant

  Hi Fellow MDSers… A great place to find help in any city is at Care.com! You can find just about any help for any amount of time… rates usually run from $15.00 to 25.00 an hour.
  Good Luck with lots of “air” hugs and prayers!

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