Were you raised by a chronically ill or disabled parent?

amother

Scarlet

Wed, Sep 21 2016, 5:58 pm

If you were raised by a parent with a chronic illness or disability I'd love to hear from you!

Were you understanding/resentful of your parent's illness or disability growing up?
Did their illness affect your day to day lives? If not, how often?
Did you feel that you were shortchanged in any way?
Were they always able to accompany you to simchot, appointments, shopping trips?
If they didn't, did you resent that?
What bothered you most about their condition?

And most importantly, what do you feel they could have done differently?
And is there something that they did for you despite the difficulties that is memorable to you?

Before you all jump down my throat let me explain. As a mom suffering from a chronic illness that very much affects our day to day lives, I would love to hear what its like from a child's perspective so that I can be the best mom despite the obstacles.

amother

Mint

Wed, Sep 21 2016, 6:15 pm

I was not but my father was ( his father was chronically ill). My father says his parents were too private about his fathers illness and he would have preferred more openness and transparency. but that was also very much part of the time he grew up in - I think people are less private about illness today and there is somewhat less stigma

amother

Peach

Wed, Sep 21 2016, 6:15 pm

I wasn't , by my mom was. My grandma was diagnosed with MS when my mom was a child. She passed away when I was almost 5, so she lived to see my mom start her adult life. My mom isn't on here, but I could ask her these questions and let you know. I can tell you that her father and other relatives stepped up to do whatever my grandmother couldn't, and my mom was very close with her father till his passing and her aunt is like a mother to her (and like a grandmother to me). Don't know much about her relationship with her mother though.

amother

Forestgreen

Wed, Sep 21 2016, 7:09 pm

My MIL became ill when my husband was 10 and died when he was 18. He was sent away to yeshiva when he was only 13. During that time his mother was hospitalized and put on a ventilator never to recover. They hid it from him and used to hold up an empty phone for him to speak to his mother. (She had already lost her ability to speak.)

One vivid memory he has is of his father crying at his bar mitzvah because his mother couldn't be there.

amother

Plum

Wed, Sep 21 2016, 10:09 pm

I was. My mom is BH ok more or less now but still occasionally has flare ups or medical issues. She works really hard to take care of herself and tries to be as present in her kids and grandkids lives.

It was hard when she was hospitalized. She was, many times. I know I grew up earlier than some peers but my father tried to balance making us aware (on our age level) with helping us cope and get through tough times. Transparency on their level (and don't underestimate it!) would help. Being there to answer questions helps.

My mother pushed herself to attend simchos but we have a small family so there weren't dozens a year.
I was resentful sometimes when she skipped the family trip or one activity as her presence meant so much to us! She couldn't walk long distances then etc. but I knew there was a good reason. And she tried really hard to do what she could. She would make it up to us if she couldn't take us somewhere (we'll do it the next day).

I know I was different as when learning about kibud av in school we all had to give examples. I gave helping mom get dressed or cooking dinner. No one in that young a grade did that. (5th or so). But my mom sometimes needed help, more help than other moms.
I also knew more medical terminology. Didn't realize how much different I was until DH kept asking "what's that mean?" And he's knowledgable and worldly. Just not medical stuff...
It may sound like I was deprived or strange but my parents are great. They explain things (even until today) and didn't make me feel deprived. They did what they could.

anonymrs

Wed, Sep 21 2016, 10:12 pm

amother wrote:

That must have been traumatic for him. I'm so sorry.

amother

Oak

Wed, Sep 21 2016, 10:30 pm

My dad had chronic fatigue syndrome for awhile. I didn't understand it at all. What I knew was that both he and my mother had the exact same hours- they got up at the same time, went to work together, came home together, and went to bed at the same time. And yet when they got home from work, my mom went immediately to cook supper and my father went to lie down for half an hour or more and we weren't supposed to bother him for anything, even a question, and that seemed really unfair to my mom.

I never took chronic fatigue syndrome seriously. My mom got up and did everything no matter how tired she was or how she felt. She found clothes and papers for him when the rest of us had to find for ourselves. I didn't understand why he gave into tired and she didn't.

It made me resolve to never give into tired in that way with my family, to never not be available on a regular basis. So I totally burned out for the first ten years of marriage while dh took breaks when he felt he needed them, and I resented him for it. It took awhile for me to find balance.

amother

Tangerine

Wed, Sep 21 2016, 11:05 pm

To Oak. CFS doesn't stem from taking breaks when you're tired. You know that right? You sound like you're blaming your dad for being tired which is a shame to see because it's beyond his control. Illness knocks people flat on their backs no matter how hard they try. Even the strongest people have to "give in" to illness eventually.

amother

Oak

Wed, Sep 21 2016, 11:27 pm

amother wrote:

I do know that. But as a kid, I heard "chronic fatigue" and understood it as "always tired". And so was my mom. I didn't understand the difference. When I got older, I understood it better, but I still remembered the feeling as a child of being told a parent didn't have time for you because they were too tired, every day, and didn't want my kids to have that feeling. So I pushed through, until I couldn't.

FranticFrummie

Thu, Sep 22 2016, 7:21 am

I am a chronically ill mom. I'm very open and honest with DD. She knows I do everything I possibly can, and rest when I need to. She sees me go to doctors appointments, take vitamins, take medicine, and work hard on maintaining my health.

She's super responsible, but the downside is that she is fiercely protective of me, and worries about me too much. She often tries to be the adult in the house, and I have to remind her that I am still the mom, and I'm still in charge. I have to remind her that it is my job to take care of things, that she is safe, and that I am capable of doing the important stuff.

I hate that she has these insecurities at such a young age (13). I try to let her just be a kid as much as possible. If anything, I don't rely on her for too much, and let her slack off on chores because I feel guilty for asking. She has a lot of freedom, and sometimes I get the feeling that she wishes I would be stricter with her. When I do put my foot down and say "No" to something, she actually seems a bit relieved.

amother

Blue

Thu, Sep 22 2016, 7:33 am

My mom has fibromyalgia. Growing up it wasn't such a big deal for me though I knew she was in pain a lot and she took a lot of power naps. That's all how it affected me. She must have pushed herself really hard because I knew it was way worse for her than she let on.

imasinger

Thu, Sep 22 2016, 7:43 am

My father's father had a heart condition. Dad and his siblings were told that they needed to be quiet whenever they were near him, so as not to cause him stress.

It wasn't easy to learn to swallow strong emotions, and some of the 3 kids managed better than others. (The oldest one had bipolar disorder.)

Not an easy childhood, but one that offered the kids extra strengths in life because of the circumstances.

OP, your questions sound like a part of you is blaming yourself for the times that your children will suffer because of your condition.

It's not your fault. You both know this, and don't know this. If you haven't done so, please look for support groups of other mothers who are going through what you are.

My dad's dad died when he was 14. (Of cancer, not heart problems, ironically.)

That was the hardest.

If he (my dad) were still alive himself, he would probably say that the most important thing you can do is to take care of yourself for the long term.

zigi

Thu, Sep 22 2016, 9:01 am

the extent of my mother's sickness was hidden from me, she made some comments that her friends thought that she was super pale etc. now that I am looking back it makes sense. there was a lot of oh she needs to go to the hospital for tests. I learned my way around the local hospital, also a lot of drs had a practice in one of the wings. she fainted a few times. my father did a lot around the house. I thought that, that was normal. side point I looked for a dh that also would pitch in. in the end she passed away when I was 13.

amother

Violet

Thu, Sep 22 2016, 9:15 am

Both my parents were sick since I was 5. By 8 my mother had to put my father into a nursing home because she was too ill to take care of him and herself because she was in and out of the hospital plus she had me to take care of.

When I got married I hoped to have a happy life with a husband that was healthy but after about 3 years my husband became ill and went down hill. Now he is in constant pain and is in bed most of the time and on painkillers. There are moments he is fine but very rare. I never know what new illness he will have next.
It is hard for me because I hoped my kids will have a father I never had.

amother

Scarlet

Thu, Sep 22 2016, 9:45 am

imasinger wrote:

OP, your questions sound like a part of you is blaming yourself for the times that your children will suffer because of your condition.

It's not your fault. You both know this, and don't know this. If you haven't done so, please look for support groups of other mothers who are going through what you are.

Thank you for your post. I know that I've done all I can medically, as well continually doing my best on a day to day basis, so no guilt! And I also have wonderful support b'h. But as my children grow up I feel bad (for myself perhaps?) about the lost opportunities, and the experiences that we are missing out.

On the other hand I am enormously grateful for the blessings in my life and appreciate all the big and little things that we do get to experience together.

Part of me also wants make sure I am the best mother I can be, hence I would like to hear from others so that I can brush up on areas that need improvement. It's like any mother hearing from others what their mistakes have been. That's how we learn and grow.