Extremely frustrated

[Dawn]

Hi all…
My dad and mom are driving me nuts with their attitudes. My dad is on hydroxyurea and for the last week I have noticed that he seems confused, has a headache, joint aches, flu like symptoms etc…I looked up sides of this med and it says if you have any of these symptoms to get ahold of MD without delay. My dad is one that doesnt tell you something is wrong until it is basically too late, so I told my stepmom that I think they need to get in touch with the MD with these symptoms, she replies…”oh well he goes to see the Dr. next Tuesday, and he is on it every other day now”…I was like…”Fine do what you guys want”…and read to her the part where it says…”get a hold of MD without delay if you show any of these symptoms” and just walked out the door. What do I do, they obviously have a very non-chalant attitude about his illness or are in heavy denial…if I say too much they tell me I am hysterical…which I have not even cried infront of my dad since his diagnosis with this MDS…I have tried to remain strong, supportive, optimistic all the things I feel they need, but this crap pisses me off….I was going to go to the MD appt next Tuesday to talk with him about the Revlimid etc, but now I am thinking what is the use?…

[KATHY1]

Dawn, My parents were like that with my mom’s MDS also. She never even let us know how serious her illness was until it was too late. I know it was because she didn’t want anyone to feel sorry for her or treat her differently but if we knew more we could have done more. Mom’s gone for 7 months now and I miss her soooo much. I still cry thinking about what more I could’ve done. My suggestion is to do what you can and learn all you can now before it’s too late. Wishing you all the best.

Kathy

[Terri]

My Husband signed the Hippa privacy forms at all doctors office so that they can discuss his treatment etc with me. Maybe you can get your Dad to do that and then You can call the Dr and at least get a some peace of mind or if necessary get him in quicker.

I hope all turns out ok. Bob was on that drug very short period when first diagnosed to try and reduce the spleen size. No side effects bet eventually not effective.

[shirlsgirl]

Hi Dawn,

It must be so frustrating…can you convince your Dad to call the doc. just to mention the side effects that he is having and to see if he is okay waiting until Tuesday??

You obviously love your Dad very much and are very much concerned about him, he’s very lucky to have you.

Jody

[KP2112]

Dawn,

Perhaps you could provide your Mom with some literature regarding the side effects of the drug and highlight the necessity for medical attention. Maybe your Mom and Dad are trying to deal with the situation but not dealing with it and pretending it is not there because it is too difficult.

Kind Regards,
Karen P.

[Jack_dup1]

Dawn,
I agree that the Doctor should have been notified, sometime as patients we just get sick of Doctors. My wife is always saying I should tell the Doc. about this problem or that problem. They blame every thing on the MDS. I had mentioned to by family Doctor that I hated going to the oncologist because they see everything as an cancer problem, she said “when you are a hammer, the whole world looks like a nail”. I have ringing in my ears, it’s the MDS, I have numb feet, it’s the MDS, I get lite headed, it’s the MDS, it goes on and on. As care givers you worry about these things, as patients we just get tired of hearing it, so sometimes we stick out head in the sand. That doesn’t mean we don’t worry about it, but sometimes we need a break from worrying about it. I hope this make sense.
Just keep caring.
Jack

[Kathryn]

Hey Dawn,

I so know where you’re coming from. I have been in your exact spot and when you care so very much it is so frustrating… & scary.

What Jack said makes so much sense. My dad prefers to just focus on just being and lets my step. mom (and us) worry about the facts. She handles the questions, info., etc.. My sister and I aren’t able to be involved in his care directly, but we take care of the research end and other info. we can find & forward any it on to her. Like the others said, if your dad would give permission for you to speak w/ the doc. and be involved directly it would definitely improve your comfort level…. Plus three heads are sometimes better than two… My friend goes w/ her parents to her mother’s doc. appts. & she said that there are times when all three of them hear something different. Plus us children tend to question more…. they do as they are told and not ask why… and not acknowledge the urgency in some situations. It can definitely be helpful to have all of the facts so that they know when to react.

Well, best of luck to you and your family…. be patient and don’t let it push you away… My dad has been through a few different stages since being diagnosed. He is now in the acute stage and is starting to open up….. not internalizing as much.

Take care,

Kathryn

[John in GR]

Hi Dawn,

I understand both sides. As a patient I don’t want to spend the rest of my days focused on MDS, but rather on living life to its fullest.

On the other hand, I also feel your frustration in wanting to help, yet realizing that not all people want your help.

The program I am on has been beneficial for me. Most folks, however, are simply not interested in following my regimen. It’s just the way it is. Even when their life depends on it, most people are unwilling to significantly change lifestyle. I don’t totally understand it, because it seems much better than being weak and sick. We all make choices, however.

If your offer of help is not welcomed, let it go and enjoy as much as possible your father’s final days.

John

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