Lots of questions but 1st Hi, and thank you for your posts. I don't feel as alone now. Even though I've just been a caregiver for 8 months I feel I'm already burnt out. I have fibromyalgia and heart problems. All my life and even now my mom has begged us kids to not put her in a nursing home, she's very much an introvert, low self esteem and I'm very worried to put her in one.
She had a fall, broke her hip, had a stroke, and went into Afib, all at same time. I found her at her home on the floor Nov 2018. She was in neuro ICU for a week, had hip surgery, then went to a rehab hosp. Learned to eat, walk etc again. Came to live with husband and I after rehab. We had home health PT, OT and Speech to the home for 6 weeks. She had pureed food in the hospital & rehab but then given the ok to eat whatever she can chew and swallow ok.
She was starting to walk great, no need for a walker but she was depressed so the Dr. put her on Mirtazipine, she got severely depressed and they pulled her off after a month. A month or so later everything 'tasted sour' tasted bad, the food was bad, etc. She snurled her nose up to whatever I fixed, I would fix her something else only for her to just eat a few bites of it. The Dr. did not think it had anything to do with the antidepressant. He put her on steroids to help with inflammation from PMR said it would also increase her appetite. She started getting weaker and weaker and barely eating. The Dr. said she was still recovering from the stroke and hip surgery. Then said it was her dementia although they thought she's only stage 2. Then it was supposedly old age (82) and her heart problems, She got worse physically, no desire to get out of her chair, she lost interest in doing things and going places.
Her heart Dr. said "there's nothing more he can do for her except the heart meds she's on) We had to switch PCP and new Dr. said looking at blood work back to her stroke and the symptoms she was having, she thought it was stomach or colon cancer. Mom refused to get an EGD to find out, and refused any treatment so the Dr. said she's lost 15 lbs in just 3 months (at that time) and she's refusing treatment, she can't do anything else to help and got us an in home hospice referral. They have her diagnosis as protein malnourishment from cancer with dementia and physical decline.
In May the social worker came out and said "well you're terminal and usually the Dr. knows you only have 6 months or less to live when they call in hospice, said cancer is eating the protein that you put into your body and that is why the weight loss and not wanting to eat. By July 31st she was down 33 lbs. with a weight of 82 lbs. Her dementia is far worse, she's very mean, always negative, gripes about everything, everything gets on her nerves. Nothing makes her happy. Her memory span is about 15 seconds some days and she asks the same question over and over and over. Other days it's not as bad but still asks the same questions over and over. I had already grieved her being gone, gone through the sad, mad, stages. Every morning I wondered if I would find she had passed in the night, but now she's starting to eat again, like every 2 hours she's starving, she's gained 3 lbs back in the last two weeks but she's fallen twice in the last week. Went to E.R for a bad cut on her arm and a cut on the back of her head this week. She has extreme anxiety about everything, I mean everything. I've asked family for help with her but it's just me and my husband doing the caregiving. Next week Hospice is getting someone out for 2 hours a week. I was ashamedly relieved that she would pass away before the end dementia stages. Now I don't know. She says she wants to live for 3 years. I can't fathom anyone wanting to live the way she is. She can't drive, can barely dress herself, can't shower, or toilet by herself. She has headaches. Does cancer stop someone from eating only to start again? Does protein malnourishment just go away on it's own if not caused from cancer? Is this end of life symptoms? Also there's no UTI. Thank you.