Love … the Reason. Duty…the Excuse.
I became a caregiver. Not out of choice, mind you, but out of a sense of duty and as a labor of love. As it was, my wife pampered me and my four sons and adopted daughter for 40 years, so she certainly earned the right to expect some pampering. So when the time came, I became a caregiver.
My wife, Judy, was a very feisty young girl back when I met her. She was 14 at the time and I was an 18 year old “momma’s boy”. This, at a time when the ages of 18 & 14 for 2 kids dating each other didn’t read as creepy as it does now. It was the late 1950’s and I was a mild mannered guy, maybe naïve by today’s standards of 18 year old men, but my Judy, over time, with her toughness and smarts, helped me to grow up. Of course, this proved to be good practice for there’d be another 5 children to raise soon enough. And thank God she got everyone raised in time. Yes, I think, just in time.
At around 58 or 59 (these things can never be quite pinpointed), my Judy began her long slow journey into the depths of Alzheimer’s. The last of the kids had just moved out and I started to see her struggling. Reasoning ability suffered first, then her awareness of her surroundings and finally her memory. Once a full time Charge Bookkeeper and academic scholar now today, she is wheelchair bound and can’t add 2+2, if she even recognizes them as numbers at all. And yet……I feel honored. Honored because now I get to return to her, albeit a drop, a fraction, of what she did for me, and all of my family, in taking care of us.
Of course I can tell you that without my children and their understanding, I would be having a real hard time of it. I deal with my frustration by stopping, remembering and deep breathing. But I also remember to laugh as much as possible. And recognize that though Judy knew so much more than I ever did about life, she now experiences day to day events like a child again- with awe and wonder. To see her reaction sometimes, at the most mundane of things, can make me smile or even burst out laughing. And I won’t apologize for that. Because while, the disease has stolen our retirement years together, it hasn’t stolen our ability to laugh together and, that in and of itself is a blessing. Just ask any Alzheimer’s caregiver.
Repetitive activity and scenic car rides make Judy cheerful and even a pleasure to be with. She is both happy and much more carefree and doesn’t exhibit the anxiety and anger that plagued her when she was younger. Say what you will, she made me a stronger person and I still love her even though the gal I married is “gone”. The sad thing is, though, she doesn’t comprehend that “the little people” are her grandkids, “him” is her husband, “and “the big guy” is her oldest son. And now, even those monikers are beginning to dissolve into just smiles of acknowledgment. Thank God they are smiles though since so many caregivers don’t have the same experience we have had and must also suffer verbal abuse from a patient whose descent is into frustration and fright rather than a progression into retro-childhood.
My biggest break came when Judy was approved to attend San Simeon on the Sound, a local daycare center run by very dedicated people who understand her disease, needs and are able to give me 7 hours a day to attend to myself and re-charge. One morning, however, this was abruptly interrupted. Judy had a seizure, stopped breathing, was revived by my daughter in law and taken by ambulance to spend a week in a big hospital about 50 miles away from home. The care there seemed to me to be poor at best and the facility not prepared for the “comfort care” required by dementia patients. How scared and upset I was. But Judy came home. And so did I. And ironically, Judy’s brain seemed to reset and now she’s brighter than she was before the seizure. Or maybe it’s the anti-seizure meds. Either way, the result has been good.
Shortly thereafter, I was finally able to arrange for van transportation for my wheelchair bound wife. Getting to and from day care had become a fall and injury potential for her even though my car is outfitted for the wheelchair. I was relieved for the help but how sad I was the first day when the San Simeon van showed up in the morning. I was a wreck as I watched the attendants load her into the van, lock her chair into place and saw Judy looking out the window with what I interpreted as a sad and lonely expression. I now knew the trauma my wife experienced so many years ago when the kids went to school for the first time. With a tear in my 72 year old eye, the van drove away and I was just emotionally spent. It took me a week to get over it.
To be honest though, my life with Judy has become something of an adventure. Like the day we lost Judy’s teeth and my daughter-in-law and I spent all day searching the house only to find them that evening buried in my wife’s bra. Well, at least the house got a good cleaning! And how she admonishes me for something I did while helping her, and the angry look she gives me only to burst out in giggle just seconds later. To see her insatiable appetite for silliness and fun is a wonderment and blessing to me because it so contrasts the agoraphobic, anxious person she had grown to be during midlife. I can only imagine that this must be a little of what the adventure was like for her to raise our kids while I worked. If so Judy, I now understand what you went through, and I love you even more.
The time has come. Not the ultimate, but the unavoidable. The Alzheimer’s grip is tightening, and not just figuratively, either, for it was a choking incident that indicated the next phase of our life together. Judy’s down slide had been so slow, and seemingly stable, that when she vomited one night and was not able to effectively move, she aspirated and choked. She couldn’t breathe and had no ability whatsoever to alert anyone as to what was happening. In reality, I was right there, but didn’t know what was happening either. Luckily my home health aides arrived in time to see what was happening and recognized it immediately. Without hesitation they called a local fire dept. emergency unit which responded in minutes. They performed excellently and rushed her to Eastern Long Island Hospital. It is great to live in a small community with local caring competent EMT’s. The hospital quickly addressed the situation and she recovered under their care.
Now, like I said, the time has come. Even though Judy was quickly and professionally treated by the hospital staff, I recognize that for her safety, I need to provide 24 hour care, which of course I just cannot do at home, even with care attendants. Yet while it is such a sad day for me to place my loved one in the nursing facility, deep in my heart, I know she will have better, safer, and more professional care.
As for me, I visit every day, and I feed Judy lunch and dinner. I still get to see her smile, which to me is the only way she can communicate, and I know she’s still with me. I still get to be her caregiver, and for that, I’m thankful.
Needless to say, I can only hope God keeps sending His loving support to both Judy and I for I believe He will only give us that which we can handle. And when we despair and are down, He provides us a moment to lighten our burden and lessen the impact of it all. Though I know her descent into silence is imminent, I know WE are safe in the palm of God’s hands. For that I am grateful and while I know things will get tougher on me, I am uplifted knowing that like my God….. I am now a caregiver.
Love’s the reason. Duty’s the excuse. — Written with love, Bob