I read your blog every evening. It has made me feel less alone. My mom has LBD. My husband and I moved up from Wyoming to Idaho/Washington State line last summer, so I could take care of her (I'm an only child). I thought she could stay alone at nights in the house she and my dad built on 66 acres in the 1950s and I could visit her during the day ,feed her, clean up after the dog and 9 cats (we took an apartment 3 flights up - she couldn't climb those stairs with her bad hip). She insisted I was not her daughter, despite the neighbors vouching for me.
She had been pretty paranoid for about 3 or 4 years about me, which I found painful on my yearly visits. During the previous year, she'd sometimes call and accuse me of trying to steal her land, though normally we had pretty good weekly conversations. We'd always been so close. My son had moved up from LA to help her out the year before, but after 6 weeks she accused him of planning to murder her to inherit the land. She had a gun, so he moved out quickly and she wouldn't have anything to do with him until I came up for Mother's Day last year.
It was then that I realized how much she had deteriorated. A good neighbor had kept things going while emailing me about her gradual deterioration. Alzheimer's disease, I thought, but so odd. She began having hallucinations of strangers and my late dad in the house having noisy parties. One minute she knew me and knew something was wrong with her ("Oh, you're going to hate me," she'd say sadly. "No I won't, Mom. I love you."), the next minute I was some distant relative trying to take advantage of her.
I took her to the Memory Clinic, and also searched the Internet. I suggested LBD to the doctor there. At first the doctor was skeptical, but after consultation with the psychologist and social worker who also interviewed Mom, that was the diagnosis. She's 83.
I didn't want her to have a second mastectomy in August when a small cancer was found. I felt it would make her worse, but she accused me of wanting her to die, so I relented. She tried to pull out her tubes after surgery and the hospital had to put a watch on her all night. She thought she was in jail. I took her home the next morning. (7 years earlier she'd come through her first mastectomy with flying colors).
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Here is a humorous incident that came out of that. About a week after her surgery, the incision began leaking. I had her hold a towel to her chest and took her into the surgeon. As we sat in the waiting room, she turned to me and asked, "Why did you shoot me?" The couple nearby stiffened. "I didn't shoot you, " I gasped. "You had a mastectomy." "You shot me with a bee-bee gun," she said knowingly.
Within a few days, she turned it around to her having shot me and began calling neighbors to help find her a lawyer. After a month of living with her, I went back to sleep at our apartment each night. One morning she called at 5 a.m., in a panic. We went to her rescue. The next night she called me at 3 a.m. The following night the phone rang at 4 a.m. …"Hi, Mom," I answered.
The male voice on the other end identified himself as a deputy sheriff. "You mother is confused and called us," he said. Thank goodness I'd taped my phone number on the telephone for Mom to use. I began staying with her 24-hours a day again. Despite an anti-psychotic for hallucinations (I know that some say don't give them to people with dementia, but Resperdal did eliminate most hallucinations, and I haven't found much in the way of side effects).
At night she thought she was somewhere else and that the house she'd lived in for 50 years was evil. She asked me to find her some place safe to live. 5 weeks later she agreed to try assisted living. There was a cottage for 15 people with dementia, and they had an opening. It has taken some time for her to feel comfortable there, mostly because of her paranoia and practically no short-term memory. But she's happy to see me every afternoon (I'm now her ally, rather than her enemy). I still do some of the things for her I did before, so I feel useful. And I advocate with a staff that truly wants to make her stay there peaceful for her.
I did want to mention to you that Mom had a pressure sore at her tail bone (she slept in her rocking chair until we brought her mattress to the cottage), and it just wouldn't heal because of the bacteria from fecal matter getting into it, until a contract nurse began using the antibiotic Silva Sorb Gel on it. You might mention that product to the nurse who treats Daddy for his pressure sores on his rump.
I think you're doing an amazing thing. I know you are exhausted and filled with grief. I cry every day about my mom (sometimes even when I'm with her - she puts her hand on my hair when I bend to lift her feet up), and I cry again when I read your essays.
Fate has been unkind to her, for she took care of my schizophrenic dad during a 50-year marriage, and only had about 10 years of peace before she began having problems.
And I'm glad you write about the intimate care issues. Those of us who also deal with fecal matter salute you.
Best regards,
Karen
1 comments:
Pauline said... Karen, Thank you so much Hubbie and I do appreciate the letters. It lets us know we are not along in this maze of dementia. Please keep thise cards and letters coming in...
OBYW, there WILL be a Lewy artic;e on a "Fecal Matter Salute" Thart's just too good to pass up...
Kindess Regards,
Pauline