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Feeling Like A Burden On Caregiver


imapumpkin
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I am a 24 year old with POTS syndrome and unfortunately have been unable to work since July. I had to move back in with my mother and have been unable to be independent because my POTS is really bad at the moment. I saw a specialist and am working with her to try and get back to being high-functioning. In the meantime, I am having to rely on a great of support from my mother because often I am too sick to drive and function on a normal adult independent level.

I am feeling especially bad about all the help i'm needing, because I just want my health and independence back and i don't know what i'd do if i didn't have someone taking care of me. My boyfriend lives in a different sate and can only be around to help every few weeks and I even feel bad that he should have to take care of me instead of being able to enjoy spending time together. Luckily he has been very good about helping. Does anyone else feel guilty for needing to be taken care of? how do people take care of themselves when they don't have someone to help?

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I'm sorry your going through this.

On a side note, I'm curious.. When you go to the Dr do you tell them how disabled you are? If so, what do they say back to you? I wonder if you need to be more aggressive? Youre 24 and "pots shouldnt be disabling" according to my DR (nice huh?) but I wonder if you just keep on your Dr.. This isn't working.. This isn't working... This isn't working ... Maybe they will keep reevaluating their treatment plan or send you to someone who will help you ? Maybe it's time to get angry? Lol

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My doctor is a neurologist who specializes in dysautonomia so she sees people even worse than me and knows how debilitating it has been. We are working to see what treatments will work for me. As far as POTS shouldn't be disabling, well it wasn't for me until this summer, but it sounds like your doctor is misinformed about the condition haha. I only just got an appt with my doctor for the first time last week so I really am at the very beginning of the treatment plan and will just have to see how things go.

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Wow, this sounds all too familiar. I am struggling with this myself. My husband is gone 2 weeks a month, leaving me to care for our boys, who are 12, 7, and 14 months... Symptoms are so bad right now that I often need my mom to care not only for my kids, but for me. I had a particularly bad episode at home with my two younger ones, my 7 yr old had to run and get a neighbor as I had passed out. Its almost surreal, I never would have thought I would need so much help, I've always been able to do it all, worked full time, be a wife and mother, no problem... Until pots came in to my life that is. I'm learning to take advantage of my good days, even if I have to pay for it later. The hardest part though is accepting help when it is offered. I think as women we tend to beat ourselves up if we need help, its in our nature to be care providers for those we love, its not as easy when the shoe is on the other foot.

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First of all let me say that I am so sorry that you are going through this. I have a 23 year old daughter who is in your same situation. She was living on her own and going to school. She became sick with POTS and had to move home and take a leave of absence from school.

Since I am speaking from the caregiver's perspective, I can tell you that you are not a burden!!!! As a mother it is so hard to see your child go through something like this and we would do anything possible to make you feel better or make your life easier in any way. As caregivers we feel so helpless because there is really very little we can do.

I hope you start feeling better soon.

Pam

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Hey imapumpkin, just wanted to chime in and say I’m sorry you’ve been having a hard time. I know how frustrating it is to not be as functional as you used to be and to not have the independence that you want. I know I was so excited to graduate college and finally be out in the world doing the things I wanted to do…and then the POTS took a turn for the terrible. I’m in a similar place to you right now…24, unable to work or drive thus far, living with my family and needing a lot of help from them, while doing all I can think of to get better.

For what it’s worth, I don’t think you have anything to feel guilty about. I think you (and anyone else going through POTS) deserve a great deal of credit for living with it every day and doing all you can to get better, because it’s HARD work.

That being said, I get those feelings of guilt and being a burden a lot too. I know none of this has been easy on my family and friends, and that they’ve had to give up a lot to help me. I know they get frustrated about it sometimes too, which makes me feel AWFUL. For me, it sometimes helps a bit to remember all I am doing to get better, as well as to see any progress I’m making, even when it’s tiny, or two steps forward, one step back. I also try to remember that even when people seem to be frustrated with me, it’s often really the POTS they’re frustrated with (and believe me, that’s something we all agree on then, haha). Sometimes, it’s even helped to sit down with my family and just talk out issues we’re having…sometimes we end up working out small ways I can make their lives easier and ways they can make my life easier (and sometimes, my life being easier means I end up relying on them less, which is great).

I really don’t know if any of that is helpful to you or your situation, but I do hope the doctors can help you get back up on your feet quickly, so you can get back to doing what you want to do…and in the meantime, if nothing else, I’m in the exact same boat as you too, so you’re definitely not alone in this :)

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My 12 year old son has POTS. Last school year I was teaching full time and my mother stayed with him. However, my son's condition got worse this past summer and I made the decision to quit my job. The only thing that matters is that he gets better. I'm sure that your mom and boyfriend feels the same way. Hang in there and keep smiling. It helps if you have family that understands you illness. Keep working with your doctor and keeping doing some type of exercise. Exercise stimulates glands, hormones, heart rate, blood pressure and many other things in your body. Exercise will help but don't over do it.

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I'm the mother of a 16 yr. old and her main caregiver. As a mother, I hope my daughter never feels guilty for being taken care of and you shouldn't either! As mothers, when our children are sick, it's the worst and you would gladly take it for them no matter what!

At the worst time for my daughter, she was unable to walk, sit, or stand at all. She then underwent vestibular therapy and made a huge improvement. On Christmas day of 2010, she surprised my husband, my other daughter, and me by walking a few steps on her own! She had been working on that behind our backs to surprise us! It was the best present I ever got and made me the proudest momma on earth! I hope and pray that with this new doctor and the support you have, that you will have better days ahead!

Brenda

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