Being a Caregiver with FM sucks...

Discussion in 'Fibromyalgia Main Forum' started by gelicab, Aug 20, 2006.

  1. gelicab

    gelicab New Member

    Hello Friends.

    Well I just need a moment, a chance to talk and share my thoughts. I have been a member of this online community for years and it never fails that you all end up hearing more about the "other" things in my life besides my FM struggles.

    My mother in law has just come home from the nursing home that she's been staying in. More than 90 days ago she was admitting to a bone and joint hospital to have a knee replacment, at her age she's 71 even the littlest surgery had its risk but no one imagined what soon followed.

    My mom was overdosed by the morphine and to make a long story short she now has permenant brain injury and will never walk without a walker or be able to live alone again. We had her move in with us over a year ago. When my partner and I met her mother was probably the most annoying person in the family that I could be around. She knew of my FM and she could walk circles around me even at age 69 --so it was hard for her to understand why on some days I used a cane, a wheelchair or had to nap more than "normal" people. Now, we are all suffering a huge loss. The granny that we once knew has been forever changed into dependant, person who for her own safety cant be alone for long.

    My family has been through alot the last few months. My partner, the youngest of 6 kids has been the one to be at mom's side every day while in the hospital. We almost lost mom, we went from the ER, to ICU, to a rehab hospital then to a Nursing Facility. Now, the insurance has run out and they have said this is all we get out of the rehab process, we now have to learn to live with the granny that we have here.

    This is hard especially for my partner, and then for me. I have been trying to get pregnant for two years. Something about being a mother has been so exciting and yet so difficult. Now, I feel in some ways that I have that child to tend to. Mom's up every 2 hours in the night for various reasons. She relys on us to cook, clean and entertain her throughout the day. Mom cant get around by herself. The house has been and continues to be modified for her safety. As I type this my partner is out buying a baby monitor to put by mom's bed b/c she heard mom choking, went to check and mom was asleep and start to get sick and couldnt lift herself up enough to get it out...

    Our lives are so different now. We have this situation, this real life battle to live. We all thank god that mom didnt die. She could have, we vividly remember seeing death on her face in the ER and ICU. We prayed she would not go.. life would not be the same without her... now we just feel so helpless and so lost.. we dont know who to turn to for support.

    My partner relies on me -- and I have been pushed to do more and more the last 2 days. My body hurts and I'm exhausted but I know I have to keep pushing because mom needs us and it will all get easier once we get use to it right?!?!?!?!?

    Tomorrow our 14 year old starts his school year at a brand new school - he just got accepted to a special school of the arts.. we are so proud of him and so excited for this day. My partner starts back to her college class in the morning too. Me, I go to class only on Tues & Thur. We all work, me 40 hours at a job that isnt as flexible as the one my partner has. So she'll be the one staying hom the next few days to care for mom. I'll do the late night and morning shift as needed..

    Home Health has screwed up our schedule, they dont know when this will begin. We have schedule some meals on wheels but have to wait for the 2 weeks for them to start and then the caregivers that we thought might help have all turned their back due to lack of funds.. this whole thing has gotten to be too expensive.

    I'm going to start journeling again.. I need to do this for my piece of mind. And I think I'm going to start painting again.. I need to find peace and relax with the litte things. I just needed someone to share my thoughts with.. thanks for listening.

  2. musikmaker

    musikmaker New Member

    We are in the process of putting a manufactured home on our property for aging parents. As I had to retire this year because of FM/CFS, I am the one home working with contractors. It has been very tiring for me. I often worry about the way our lives will change with them living here.

    I hope you and your family get balanced again soon.
  3. 69mach1

    69mach1 New Member

    the state to pay for a caregiver for her...or even one of you to do it and get paid to be mom's caregiver...and stay home more w/her...just a suggestion..


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