Welcome to the MDS Patient Message Board Post New Thread

Welcome to the MDS Patient Message Board. We hope that you will find this to be a very valuable resource in your journey. We have recently revised the format of our forum to be much more user friendly and pleasing on the eyes. Let us know if you have any problems, or if you have additional suggestions on how we might further improve our site.

Caregiver question – managing a job?

Tagged: caregiving jobs

This topic has 18 replies, 8 voices, and was last updated 5 years, 9 months ago by Greg Coleman.

Viewing 4 posts - 16 through 19 (of 19 total)

← 1 2

Author

Posts
July 13, 2018 at 8:11 pm #36845

Heather Lautenschlager
Participant

Hi, all! I am so excited to find the support in these forums! My dad, age 67, was just diagnosed with MDS. I’m not even sure of what type yet. We can’t get into the doctor until the 24th of July! I have so many questions, it’s difficult to wait that long! Anyway, one of my biggest questions is what kind of help he may need. My mom passed away only 2 months ago and so my dad lives alone. My sister and I each live out of state and are working. We both also have young kids, so I worry about having my dad stay with us if he would be neutropenic. I am just wondering what everyone’s experience and thoughts are on this issue. Will he be safe and able to be home alone? Will he feel well enough to drive himself to appointments? Or do you think we need to make other plans and arrangements in case he needs more care? As of right now he does not have any symptoms other than some fatigue. He is otherwise healthy and active. Thank you!

July 13, 2018 at 8:44 pm #36846

Lee Snell
Participant

So sorry for your loss Angela, thinking of you. It’s never easy to see someone you truely love go through that. As hard as it is you did the right thing. Those last two sound very simialar to what we went through. If you ever need to talk,send me a message. Look after yourself as best you can. X

July 13, 2018 at 8:51 pm #36847

Lee Snell
Participant

Hi heather, it all depends on how bad he is. Eventually he will need help. My husband was able to do most thing up until about a week after treatment. Unfortunately treatment for him rapidly sent him downhill. Happy to give more details if you need.

July 14, 2018 at 10:23 am #36854

Greg Coleman
Participant

Angela,

I have MDS/MPN. I was diagnosed a little over a year ago. I am scheduled for SCT on Wednesday July 18th. I feel strong and my counts are completely normal. I had a bad time last year while having Decitabine treatments (4 cycles). I was hospitalized for about 90days last year but have made a recovery that enables me the SCT. My wife and I are not wealthy (I’m a firefighter and she a librarian) and couldn’t afford for her to stop working. We made it work with her taking minimal time off. We are planning to do the same when I return from the SCT. I felt weak at times but was able to care for myself while she worked. She did all the cleaning and shopping and I was able to do laundry and cooking. We hope this will work for us again. Hope this helps. I feel some of the best treatment is talking frankly about what we all are going through. Thanks to all who contribute! Best wishes to all!
Author

Posts