I’m a new caregiver and this is my first post (although I’ve been reading through the forum for several weeks and have to say it has been extremely helpful!).
My mother is currently 75 and moved in with me 4 years ago when she was no longer able to work and therefore unable to support herself. (She had been a waitress her whole life, no retirement/savings and unable to live on Social Security alone.)
She has had COPD/emphysema for years along with depression. She also treats with pain management for lower back pain. They give her Lortabs and Gabapentin.
When she first moved in, she had issues with short-term memory loss (asking the same questions over and over) and wouldn’t drive (new city, not familiar with the area). Otherwise, she was self-sufficient. She was able to cook, do laundry, keep track of her medications, go shopping with the neighbor, take the dog out for walks, etc. She also liked to do embroidery and word search puzzles.
She saw a neuropsychologist in 2019 regarding her memory issues. He said she had mild cognitive impairment but could not diagnose dementia.
In mid-June of this year, her older sister passed away and since then things have gone downhill. First, she stopped walking the dog – said she was in too much pain but couldn't say where. Then she started saying odd things that didn’t make sense. Then having trouble walking, losing her balance. Sleeping more. Not being able to articulate her thoughts, find the right words. By mid-August, she was becoming more confused and extremely depressed, crying a lot, wanting to die, scared, saying she felt like she was in a nightmare. She wouldn’t get out of bed, didn’t care about anything. She would repeat the same stories over and over.
Since this started, her PCP has ruled out infections (including UTI), treated anemia, B6 deficiency, done a brain CT (normal) and continues to do bloodwork/urine tests almost weekly. They changed her antidepressant and started titrating her off the Gabapentin. She is no longer crying, etc. which is good. She is still somewhat confused throughout the day, but it gets extremely bad from about 9:00pm until 9:00am. She has no idea where she is or what she is doing. She gets up in the middle of the night to go to the bathroom but goes everywhere except the toilet (dining room chair, bedroom floor, laundry basket). (I now have a monitor to alert me when she gets up.) In addition, she hardly eats/drinks anything now and has lost 20lbs in a month. She only weighed 125lbs to begin with!
It has been 3 months and her PCP still can’t tell me what is wrong with her – whether it is dementia or pseudo-dementia caused by the pain meds and/or depression.
Home Health care sends a PT out 2x week to help her get moving (doesn’t help) and a nurse 1x week to take her vitals. A social worker came out who told me about different placements v. in-home care, but how do I make that decision without knowing what is wrong with her?
She can no longer stay by herself so I haven’t been to my office in over a month. Fortunately, I’m able to work from home right now but not indefinitely so that is another reason I’d like to know what I’m looking at so I can make plans.
I guess what I’m wondering is…is it normal for it to take so long to get answers? Do I need to push harder or go elsewhere for help? I’m at my wits end. I’m watching her waste away and I feel helpless and alone and don't know what to do.
Any insight, suggestions, information is much appreciated.