Advise Needed

[JulieMarie]

Everyone in my family always emails me wondering how my mom is doing with her MDS. The other week I sent out a pretty lengthy email to everyone in the family and a few of my close friends on what has all happened since the begining of March and what my mom found out at her last dr. appointment. What we can expect for the next few months and well when I told my mom that I sent the email out (my mom doesn’t check her email that often so I thought it was pointless to send it to her), she said that she now has to watch what she says around me so I don’t go telling eveyone. And in the email I didn’t say anything bad. What should I do? Tell the family members “mom’s doing ok, thanks for asking (don’t give any details)” or “if you want to know ask her?” or just don’t say anything?

[shirlsgirl]

Hi JM,
It’s a tricky situation isn’t it. Perhaps you can speak with her first and talk about how much info she is comfortable with giving out and with who you are sharing it with?.

My mom is also a pretty private person, and doesn’t like to share too much. My mom’s neighbor is my 6 yr old daughter’s friend’s grandparents. When I first found out about my mom’s CMML I confided in a mom at my daughter’s school and the news travelled to the grandparents next door to my mom. My mom was not pleased as she is pretty private.

So I understand…believe me. And it’s so hard because most of the people who are asking really care and want to offer support.

Hopefully your mom will realize that you sent the e-mail with good intentions.

Take care, Jody

[Christina]

Hi Juliemarie,

My dad has MDS/RARS and I have often asked the same question which is, what is the answer to the question “how is your dad?” I usually say he’s hanging in there! Or that he is lucky to be able to go to work and enjoy the day. When he is in the hospital I will go into greater detail. But mostly it is for my mind to talk to people about it. You need to get your feelings off your chest, this is hard on you too. Ask your mom what she would like the family to know, and keep it light. Just by mentioning the fact that she is on chemo should be enough said. Good luck.

[tahoedonner]

A very difficult question but it really should be up to the person who has MDS. My MD very wisely asked me to have my wife present when he confirmed my diagnosis. This saved me from having to explain it all to her and saved her from questioning whether I got it right.

My first reaction was to tell no one else, since I was otherwise in very good health. A good friend, whose husband had just died of a brain tumor, convinced me that I should tell our four adult children and through them, their spouses. This was good advise and they have all been great.

I asked them not to tell their children until I had obvious complications from the MDS. I have had Vidaza and an infusion but still nothing noticeable.

I also told our attorney for obvious reasons.

All of this has worked out very well and I haven’t been bothered with a continuous bombardment of questions about my health.

I think the best advice is to keep informed only those who you think should be kept informed. Since others, unfortunately, are aware, I would parry questions with very brief replies…. “Just fine”…. “Great”….So far so good”…. and change the topic with a very personal question to them.

[Kathryn]

Hey,

It is a tricky situation for sure. I suppose it depends where they are mentally and who is asking. Some days they are probably so tired of talking about their illness and being talked about… My father is so over it…. and I don’t blame him. It is all consuming, especially at the stage he is in. Sometimes the less you say the better… A report may also not paint a very positive picture, but things change and you don’t want that negative energy to interfere.

It definitely would be best to find out exactly what your mother would like for you to do. That way there are no questions and she knows that you are sensitive to her feelings.

W/Best wishes,

Kathryn

[Donna]

Hi Julie,
I second Tahoe’s advice. I think it is a very personal matter and needs to be handled accordingly with the utmost respect.

Donna

[KATHY1]

Julie,
My mom also wanted to keep her “codition” as she called it private. She downplayed it to everyone including her children. We did not know how serious this “condition” was until she ended up in the hospital back in October. She never seemed sick and she had more energy (or so she made it seem) than the rest of us. What it came down to was that she just wanted to do what she always did, didn’t want any special attention and wanted no one to feel sorry for her. She lived until she died. Maybe your mom doesn’t want to be treated differently.

Kathy

[tahoedonner]

Kathy….

Your Mom got it right!

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