For those who care for someone with Parkinson's disease
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By lostdaughter On 2010.04.04 19:06
My mom has been in NICU for the past 9 weeks. She went for the last phase of her 2nd DBS on Feb 16 & her lung collapsed while she was in recovery. Before that was completely healed she had a rare allergic reaction to heparin that caused blood flow to her right leg to be cut off. Three weeks ago she developed a UTI & aspirated so badly that they had to put a feeding tube back in her nose. All during this time she's been hallucinating & talking about seeing people who have been dead for years. My sister & I were facing making a decision about amuptating her right leg this time last week. Suddenly Mom was at herself enough to say she understood what they were talking about doing & that she wanted to have it done. We didn't think she'd survive surgery & I don't think the doctors thought she would either. Miraculously, she made it through & has been more cognizant than before the initial surgery in February. She still has times that she's confused & she's extremely weak from laying in bed all this time. She's having some difficulties with congestion that she isn't strong enough to get up but was able to sit in a neuro chair for several hours today. At present the plan is to send her for intensive therapy as soon as she's able to leave the hospital. She thinks she'll eventually come home, which isn't possible because we don't have the resources to take care of her here. I dread the day we have to tell her she has to stay in a nursing home. She's needed more care for the past year than my sister can give & work but we've somehow managed. I always assumed she'd go to a NH because of the dementia & PD, never dreamed it would be because of an amputation.

Mom & I have been somewhat at odds this past year because of her refusal to see what a strain she's put on my sister & me. She's been hell bent on staying at home - stubborn & trying every way she could to be as independent as possible. I know realize how tough she is & how that stubbornness has pulled her through the past 2 months. I don't know what tomorrow holds. A great deal of the stress is gone for me because I'm not constantly worrying about her next injury or how we're going to pay someone to be with her during the day. I have spent many hours this past year grieving for myself and for her. I hope she & I can enjoy some happy times during whatever time she has left.

For those still in the midst of struggling with caregiver issues, you are and will continue to be in my thoughts & prayers. Watching someone we love suffer, lose their independence & struggle is so hard. Add the responsibility of caring for them & it takes such a toll. I pray God will be there for each of you the way he's been for me these past weeks.

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