New to the site, and have enjoyed so much relating to so many posts and conversations. I have been searching for a support group for Caregivers in my area, without any success and this is my first time attempting an on-line format.
My story includes being thrown into dual caregiver status a little over a year ago. My Mother-in-law (love the MIL abbrv.) was diagnosed with Pancreatic Cancer in January of 2012. Stage 2 originally, but after the whipple surgery pathology came back at Stage 3. She did not move in with us right away, however my husband's sister did. She is mentally handicapped, 45 years old, amazingly wonderful but stuck at about an 7-9 year old functioning level mentally. So she moved in with us in Feb 2012, while his mother went thru the surgery and started Chemo treatments. His sister is in a day program during the week (Thank goodness), so there was little effect to my FT job, and really just added a fourth child to my house to care for. Chemo for my MIL did not go well and she became extremely ill. In July, they took her off Chemo and pretty much said she was done. A final CT Scan showed the cancer had spread to her liver and spleen and with her weakened condition there was nothing further they could do. She had a heartattack a few weeks later, then went to rehab that almost killed her. No kidding, she was throwing up blood for 48 hours and they didn't send her to the ER. By the time I demanded her to get immediate treatment, she was already in dire need of a blood transfusion due to three massive bleeding ulcers. Which is where the decision to move my MIL also in with my husband and I came into play. I know there are some good Nursing homes available, but those are all private pay. If you are on Medicare, you are scrapping bottom for a bed in some of the scariest places I have ever seen.
So August 2012, my MIL moved in too. Never did I think my oversized 7 bedroom, 4 bath house would be too small. When my MIL was discharged from any further medical treatment to hospice in my home, we were told she would have 3-6 months. The first month was hard, she needed assistance doing everything - even getting to the bed side commode. But with proper nutrition and lots of care from 98% ME - she started to get better? The cancer is still there, but I guess her body started to recover from the devistating effects of the Chemo. But I felt GREAT - she was going to get to enjoy the last couple months of her life, surrounded by her son, her grandkids and her daughter.
Fast forward almost 5 months - she is completely capably of caring for herself, but still demands 100% "service" from me. My husband is rarely home, I have been able to work out a schedule with my FT job that allows me to work mainly from home. And even tho she is probably healthier than she was before the Chemo started she is still demanding of all her meals being prepared, the special foods I make to increase her protein and fat intake to be served to her in her room. She can get around good enough to snoop through my house, but as soon as I get home from my 3 hour work day in the office, she becomes completely unable to care for herself. She has called me on my cell phone while I am making dinner to tell me she is out of Poweraid when I know she is capable of getting it herself. Add in the caring of my special needs sister and I am 4 months past needed a vacation in a padded cell somewhere with someone pumping me with anxiety meds.
But it is not just the 24/7 care, neediness and demands. I have lost all rights to enjoy my own home. If I want to watch tv, the only room I get to have access to is my bedroom. I have gotten to the point were I hate being in my own home. I get home from work, clean, cook, do dishes, take care of meds, and all the petty needs of my MIL and sister in law without being able to even take off my shoes. My children (all teenagers 14, 17, 20 - she is away at college) hide out in their rooms or spend most of their time at friends houses.
I feel trapped all the time, my husband continues to live his carefree life as he did before everyone moved in, and just doesn't understand why " I LET IT ALL GET TO ME" - ummm because there is no ME anymore?
I get caught in anger, regret, anxiety and just want to scream. I know my MIL will be gone soon, there is no cure, there is no treatment, and I want her to be surrounded by love but I am about to lose my mind. I did start taking anxiety medication about two months ago, but it has lost most of its effectiveness.
I hate to say it, but I look forward to the end and being able to maybe get a small piece of myself back.
Have to go - my MIL is bellowing again. Thank you for the venting session. I could go on and on and on about the ungrateful and nasty way my MIL speaks to me and tells me how I run my house totally wrong, but she needs more Poweraid.