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Topic Happy Mother's Day (not) Go to previous topic Go to next topic Go to higher level

By lurkingforacure On 2010.05.09 18:46
Well, I'm here to rant, I feel so sad. Today I got nothing for mother's day, and yet, this evening, my husband who has been too tired to even shop for the exercise bike I have been begging him to get for weeks now, is running all over town to pick up food to take to his mom for mother's day. We are all supposed to go over there shortly and have this wonderful mother's day celebration. I could care less, and hate that I feel this way.

I don't really expect any flowers or gift for mom's day, I've never gotten them before PD and so don't really miss them...what I resent, though, and what makes me so sad, is that somehow my husband is able to drum up the energy (and time) to go to these crazy lengths for his mom who remains clueless to this day about her son being sick. How a mother cannot tell that her own son is ill is beyond me. He plays the matching part, pretending he is healthy and refusing to tell her otherwise. It makes me crazy. I have been forbidden to tell her, which makes it even worse.

And the ultimate was this morning, when the kids were yelling and being kids, he tells me he needs less stress in his life and "needs things to be stable". I could hardly believe it. I asked if we could just not go this evening to reduce some major stress for both of us, and he would not hear of it. Family get togethers are stressful enough, without the added burden of pretending you are not sick when you have PD-talk about stress, no one is that good of an actor.

I find my patience, tolerance, and kindness stretched to the max when things like this happen. And because his parents live just a few miles from us, we are expected to pretty much get together for every birthday, holiday, event, it's a lot of pressure. The guilt he feels even considering not spending mother's day at his mom's is overwhelming for him which makes me resent the hell out of my mother in law-what kind of mom-son relationship do they have where he cannot call her up and tell her he is really sorry but he just cannot make it? And why cannot he just accept the fact that she might be upset, but she'll get over it for G__'s sake? He has only spent EVERY mother's day with her since he was born, including every year of our marriage! He is ILL, he cannot keep pretending he is not, at my and our kids' expense.

Part of me admires him for trying to protect his mother from bad news, but the other part is weary of keeping the lie going, I hate lies and the pressure to keep this lie going is beyond my abilities. Every time we get together I am scared to death I am going to say something or let something slip and she'll find out her son is sick, he'll be mad at me, it's an impossible situation. And I can't believe she hasn't clued in yet, honestly, if one of our kids were sick, there is NO WAY I would not be able to tell. Especially seeing them as often as we see our in-laws, we even spent Thanksgiving together at the ocean for four days and she STILL didn't notice anything was amiss with her son. And no, she has no dementia or cognitive issues.

Does anyone else have this issue, and what in heavens did you do about it? Trying to limit the get-togethers is extremely difficult if not impossible, I have had little to no success with that. Moving hundreds (or thousands) of miles away is not an option, but one I know would take care of all of this. Thanks for whatever ideas anyone has.

By LOHENGR1N On 2010.05.09 20:05
Lurking my friend I'm so sorry you find and continue to find yourself in this situation. I don't know what to tell you. I know in the past I've referred you to the YOPD site, I know it could help but NOT until your Husband is willing to admit and tell others He has Parkinson's Disease. All the things one could tell you are pointless until he admits to himself and his family. Even things like it's a disease, it's nothing to be ashamed of or not like you asked for it. It happens, are mute at this point, I hope for all your sakes He comes around and faces this. Many years ago when I was diagnosed and I told my Mother, she refused to tell any of Her sisters or brothers or friends, why I don't know. She would even tell me my aunts or uncles asked how I was doing? When I pressed her she said I told them as well as can be expected! They knew something was wrong, they knew I was sick but she refused to tell them. I know I pi**ed her off whenever I got a chance to talk to them I told them.

I don't know the answer to why He won't, I just hope He does start to acknowledge others need to know, especially family. Children sense something is wrong and wonder if it's something they've done or are doing. I look to your posts with the hope you can say your husband has told family at last. You are an amazing Person, holding together a family splitting at the seams, tip-toeing around the elephant in the living room. I hope that today you know just how amazing the job you are doing is and just how strong you are for your loved ones and your friends here on the forum. Happy Mothersday, sincerely Al.

By lurkingforacure On 2010.05.09 21:21
Dear Al, you have no idea how much your post means to me, especially coming from you, it was completely unexpected. It made me feel so much better, I know all the things you say are true.

Part of my problem is that I am so opposite my husband, he is incredibly private and wants no one to know (unless they already know because it is obvious) and I would be one of those patients calling everyone in the phone book and telling everyone I met on the street. So it is very hard for me to understand why he just cannot tell his mom....he was going to tell his dad last year, but at the last minute made me go over to his parents house and I had to be the one to tell his dad, with the instructions that neither his dad nor I could tell his mom. So both his father AND I have to tiptoe around this elephant and keep the lie going, it really makes no sense to me. And it makes the whole situation just much harder.

Thank you again for your kindness, I have not found any situation like mine anywhere including the YOPA site, and realize it is pretty strange. I am so very grateful for the kindness and support of the group here, thank heavens we have each other.

By Emma On 2010.05.10 07:28
lurkingforacure, Al said it all but I just want to add my voice. You really are amazing. I don't know how you do this. I wish there was someway we could all help you. My guess is that there are people who know, or at least are wondering, what is wrong with your husband but they don't bring it up because he doesn't. So sad, so stressful for you. We love you, hang in there.

By Lynnie On 2010.05.17 14:29
It is my opinion that you should tell your mother-in-law that your husband has PD.
I know she may not like it and your husband would be upset, but in the long run it would be the best and it would be easier on you. What would happen to your mother-in-law if she knew?

My husband didn't want his friends to know about his disease for a while because it was hard to accept but our family were told at the beginning and gradually we told our friends and everyone knows now and it is so much easier. They understand if he isn't able to do something and help us out.

If you don't like my advice, maybe you could talk to your minister or doctor about it and see if he could talk to your husband, or maybe a good friend could talk to him if you don't have a minister or doctor.

You are the caregiver and if it's making you more stressed over this situation, you need to do something other than putting up with it.

By lurkingforacure On 2010.05.18 12:34
Thanks lynnie, I know I SHOULD tell her, but I just feel I can't. I don't really have any kind of bond with her at all, even before the PD, so dont' feel like I have any "open door" to go through with her.

Worse, she is frail, hardly eats anything (on purpose, another topic which makes me crazy, we all get together for holidays and birthdays and she'll have a plate of undressed lettuce and that's it. Several of us have wondered if she has an eating disorder because it has gotten ridiculously worse over the years (she will no longer eat fruit of any kind, not even fresh raw fruit, no breads, pasta, absolutely no sugar in any form...etc., but I have too much on my plate to worry about it -ha, that was funny...and I don't care, if she doesn't want to eat, don't.) But if I told her, and she had a stroke or something worse, I would never be able to forgive myself...my husband probably wouldn't either. I hate to say it, but I just don't know what he would do if I went behind him and told her about the PD. And I hate to think that my telling her could make his PD worse, which it may well do because of the stress.

A realted factor: one of our family told me that my husband may not want to tell her because he is afraid, subconsciously, of her knowing her has PD, but not giving a damn. My husband is the youngest, and didn't get much growing up, he actually told me recently that he cannot remember his mother ever holding or hugging him. Perhaps he doesn't want her to know, because he could not deal with the additional lack of compassion/rejection that might occur? It is pretty sad. I don't want to force that issue.

So I feel stuck, and I hate being stuck. I've come to grips with the PD, I think, some days are better than others (today is not a good day), but I resent having to deal with and handle these yucky family issues too. My plan, such as it is, is to minimize the time I have to spend around my husband's family, which is the best I think I can do. Father's Day is next month, and we'll have some obligatory thing for that, and then I think I can escape for at least a month or two of the summer. Thanks for your advice, knowing what you need to do and being able to actually do it aren't always the same, unfortunately.


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