Several kind friends have asked how my mother is faring, after we had her wonderful wake, she is still with us, but she has come to a new crossroads. She has lost a great deal of weight in the last few months and spends most of the day in bed. Our previous visits were filled with chatting, catching up on stories and talking about the news. Now, I often come to visit with my mom and she is sound asleep. But I stick around, knowing that on some level she knows I’m there.
The first time this happened it was a pretty big shock. Usually, no matter if she is asleep, she would waken when I spoke to her, I would ask her how she felt and she said, “I’m better now that you are here.” So that day when I came in and she didn’t greet me, it felt like a blow. She is still alive, but she is not the woman I’m used to seeing.
I sat with her, holding her hand, as tiny as she is, she still has a strong grip. That is the strength I draw on as I sit with her. She is in no physical pain, she is clean and kept comfortable, and I can’t say enough about the staff at Hale Ku’ike. They are taking such good care of her.
For anyone reading this who is looking at the prospect of taking care of a family member with either Alzheimer’s, Parkinson’s, or advanced dementia, I recommend that you look into places that offer Memory Care — and do it soon. These are medical professionals who understand the process involved with caring for these patients. And when people tell me, “Oh we’ll take care of mom at home” my answer is “I don’t think you understand what you are in for.”
Being the primary caregiver for a patient with memory challenges is one of the most stressful situations you will ever face and as much as you love your family member, you must also be brave enough to love yourself. Know your limits, know what you can and cannot do and do not for one minute feel an ounce of guilt when it is time to call for professional help.
Having my mother at Hale Ku’ike allows us to really enjoy our time together. When she lived with me at our home, there were times when we were both so frustrated with each other. We were aware enough to know that the disease was to blame, but you don’t want to be angry with each other as the disease progresses, you really don’t.
On that day when mom didn’t wake up during our visit, I left her with a hug and a kiss and got in my car to drive home. I have my iPod set on shuffle and Robert Palmer’s song, “She Makes My Day” came on. The first few verses go:
If feel so lucky loving her, tell me what else is magic for, she thinks it’s better left unsaid. She makes her mind up at a glance,it really made a difference, I seem to be unconditionally hers. She’s like a new girl every day and all the rest don’t bother me, I’m far to busy loving her.
I’m far to busy loving her, in her time at her pace. I’m the luckiest girl around.