When Alzheimer's Hits Home
I knew taking care of my mother with Alzheimer's would not be easy, but I didn't realize it could also be so rewarding.
It's dinner time.
"Mom," I say to my 84-year-old mother, "would you like some of these delicious french-fries?"
"Oh, no," she replies. "I already had french-fries."
I look at her plate. I see soup, salad, chicken ... but no french-fries.
"I can't even look at another french-fry! I had them for breakfast!" my mother says with great conviction.
I could say, That's absurd! because I served her pancakes with maple syrup for breakfast eight hours earlier. Instead, I reply, "Oh, okay. Sorry about that! Is there something else I can get you?"
On one occasion when we had guests, a young woman expecting her first baby suddenly felt ill and went to lie down in a spare room. My mother was furious. "That woman went into my room and stole all the clothes out of my closet!" Of course the woman had not even entered my mother's room and the closet was untouched.
My reply, "Oh, I am so sorry, Mom! Don't worry. I will make sure that nothing is missing!"
I knew it would not be easy bringing my mother to live with us when we found out she has Alzheimer's. I wish I could say I am one of those exalted people who are completely selfless and are in the running for sainthood. But quite simply, there was no one else to share the responsibility of caring for her.
My affluent siblings, who lived five minutes away from her, had a very different idea of proper care: you get the best care money can buy so you can go about life as you have always lived it, without Mom intruding and disrupting your lifestyle. So they hired someone to live with her five days a week, who would cook for her, clean, and take her to doctor appointments.
Unfortunately, my mother didn't like the very nice caretaker's cooking, but she didn't want to offend her. Instead, she said she wasn't hungry. She became nauseous and weak, and then depressed. Nor could the very nice caretaker advocate for her at the doctor, who continued to prescribe medicine after medicine, oblivious to the devastating side effects that my mother experienced and was either unable or too embarrassed to discuss.
Instead, my mother withdrew further, remaining in bed for weeks at a time refusing to leave her home. On weekends the caretaker was off duty, and my mother was left alone. But despite food in the refrigerator, she would not eat and she would not wear the necklace with the emergency call button, in case she fell or needed assistance.
Her elderly friends were either in nursing homes, living far away, sick or no longer driving. Lacking regular visitors, her only source of comfort was her little yappy lap dog, but even that was not simple. On some days, she would open a can of dog food, and then five minutes later, not remembering the dog had been fed, open another can -- and then another. She would fret that her dog, who was by now at the bursting point, wasn't eating. Other times the dog wouldn't get fed at all -- because she thought it had already eaten. When my mother was too weak to get out of bed, the dog could not get outside to relieve itself -- and left evidence of its distress throughout the house.
When my siblings told me that they had found a new place for her to live, in a locked Alzheimer's unit, I panicked.
When we couldn't reach her by phone, I called my siblings to check in on her (we lived 2000 miles away). My mother's phone had been disconnected -- a huge pile of unpaid bills was sitting on her desk -- because she thought she had no money despite a healthy bank balance. She was angry and resentful when my sister tried to pay the bills. "It's none of her business!" my mother cried.
But when my siblings told me that they had found a new place for her to live, in a locked Alzheimer's unit, I panicked. No, of course they didn't allow pets. Of course there wasn't room to bring her furniture. I couldn't imagine the grief this would cause my mother, to give up the things that were such a comfort to her. She would be forcefully removed from anything or anyone familiar to her -- I thought it would kill her!
Unlike myself, my husband definitely is in the running for sainthood. "Of course," he said, sharing my distress. "We'll just bring your mother here to live with us," and he flew to California and came back the very next day with my mother and her little yappy dog. He convinced her that it would be nice to come for a "visit."
I hated the deception. My mother accused us of kidnapping her -- and she was right. But a doctor specializing in geriatrics, an attorney expert in elder law, and my rabbi assured me that our ruse was acceptable, as long as my mother's quality of life would improve. Now it was up to me to ensure that would be the case!
We wanted her to be surrounded by as much of her previous life as possible. So we shipped most of her furniture and personal effects in a moving van across the country. We cleared out our bedroom, since it was the only one that had its own private bathroom, and then we emptied out the den and filled them with her things, creating her own "suite." I cooked foods that I knew she enjoyed, and her appetite is now excellent. My married children and grandchildren -- ranging in age from infant to late 20s -- take turns stopping by every day. Whether it is for 15 minutes or two hours, the regularity of their visits are always a highlight of her day.
She now takes the dog (who to my relief is housebroken after all) for walks several times a day, no matter what the weather. Under the direction of a wonderful geriatrician, she discarded ten medications, and other than a pill once a day for high blood pressure, only takes vitamins. She loves celebrating Shabbat, interacting with our guests at the table, and taking part in the never-ending cycle of Jewish holidays and life events.
As I said, I'm not a saint; I take things a day at a time. My mother is in the early stages of Alzheimer's; I don't know if I'll always be able to care for her in our home as the more disturbing symptoms progress. I am open to the dreaded possibility of having to place her in a specialized facility down the road, but meanwhile I pray that God gives me the strength to deal with whatever comes my way. I want to shout, "I can do this!" and only hope it is true.
There are days that I feel frustrated, or more often, just plain sad. But at least for now, I see this as a gift. Though neurologically compromised, my mother is now physically healthy and vital, and she is happy.
Amazingly I have been able to see a positive side to Alzheimer's disease. It has helped me and my family grow emotionally and spiritually. It has set an example for my children that we don't necessarily take the "easy" way out, and that we have a responsibility to our parents to give back a small fraction of the care that they gave in raising us from infancy to adulthood. In agreeing to the absurd statements of a loved one stricken with Alzheimer's, we've learned that it's not the most important thing to always be right; it's more important to cherish someone and validate their feelings and ensure peace in one's home.
The past does come back to haunt you.
It's interesting to see what things my mother does remember: incidents and people from her past that caused her hurt, grief, resentment or anger. Those things seem to have resided in her brain, and she replays them constantly. How awful to be constantly antagonized, and not be able to release or resolve it! It has taught me to try to let go of any grudges or residual negativity I feel from people who have hurt me -- and to request forgiveness from those I have wounded, while I still can. The past does come back to haunt you.
Do you collect things because of the wonderful memories they bring, or because you want "stuff?" Look around your home. If you had to, could you walk away from your things? Do they bring you pleasure, or are they a burden? My mother's attachment to her things has forced me to reevaluate what's important. Do I need something or do I just want it? We can't take our things with us when we die, and we can't always take them with us when we get old. Is it not better to invest in things that can comfort and accompany us always -- mitzvoth and good deeds?
When my mother says something nonsensical that she finds terribly funny, is it going to kill me to indulge her and laugh along with her? Why don't we smile and laugh and exude happiness more often?
My mother's senses are heightened now, "Look at that car. Isn't that a beautiful color blue?" And the next day, or in the next ten minutes, she may see the same car, parked in the same driveway, yet to her it's all new. "Look at that car. Isn't that a beautiful color blue?" she'll say again, unaware she's repeating herself. Do I tell her, Yeah, I know, Mom. You just said that, and risk embarrassing her, or can I learn self-control and patience instead, and agree, yet again, "Yes! That really is a beautiful shade of blue!" and then look at the car and the sky and the world around me with a more discerning eye and realize, "Yes, God, You truly made a beautiful world!" Can I do this every ten minutes as my mother does, looking at the world as though I'm looking at it for the first time, with awe and wonder and delight?
Sometimes I wonder just who is more cognizant between us.