When I was small, I knew that my mother's life and mine would be woven together forever; but I had no idea how tightly we would hold on to each other.
Last night I signed papers to authorize Hospice to take over my Mother's care. When people hear this, the usual comment is "it's for the best" or "you did the right thing". Even the most caring person cannot understand or grasp what this means. Being the sole caregiver for years, then turning over the responsibility to someone who specializes in care and then finally signing my name as her daughter to give her the care she needs. It's final. It says to the world that this is real.
The days of mom forgetting things or misplacing items are long gone. Along with the times of repeating the same memory of long ago, continuously for hours. Or finding her in the hallway looking for the bathroom, while standing in front of it. Or cutting up her food, since her hands don't work anymore. Or giving her showers by getting in with her; holding her while she cries. Helping her get dressed, while her pretty pant suits and blouses hang in the closet, unworn for years. Jewelry flushed down the toilet by accident; making midnight trips to the hospital because she's fallen and hurt herself or broken her hip. How I long to hear her voice now. How I yearn for her eyes to meet mine. To one again sit her down to share a meal with me, and having her thank me with complete appreciation showing in her eyes. To feel her hand touch my face is but a distant memory now. How I kick myself for taking it for granted.
Now that we as a family are faced with the eventual end of her life, I would like to impart what I've learned in dealing with this wonderful woman who has this disgusting disease:
Get an early diagnosis; so what if it hurts their feelings. Get over it and get it done. Get a trust drawn up and power of attorney; it's never to soon. Baby proof your home and register with Safe Return. Go to as many support groups as you can; not the ones who complain for hours but the ones with a track record of being informative. Keep a list of medications and dr. phone nos. and medical history in a safe place. Work with your doctor and make sure you understand the details regarding caregivers and insurance. A good caregiver will be your best friend forever. Record changes and track their progress. Invest in a walker, wheelchair and a cane. Know you'll lose friends and so will they; the ones that stay are true friends.
Now personally:
No matter how the person you're caring for acts; remember how they were, and know they don't mean it. When they want to talk, sit down and listen; record it if you can. Hold them, touch them, tell them you love them while they still understand. Someday touch will be the only thing you can do for them. And above all; love them. In the end, that's all you have.
This project was supported, in part, by a grant, number 90AZ2791, from the Administration on Aging,
Department of Health and Human Services, Washington, D.C. 20201.
Grantees undertaking projects under government sponsorship are
encouraged to express freely their findings and conclusions. Points of
view or opinions do not, therefore, necessarily represent official Administration on Aging policy.
