Usually I am well aware of Cindy lying next to me during the night. Unless she is in a deep sleep her body twitches, or even when she is still I can tell she is breathing because she invariably makes her way towards my side of the bed, subconsciously striving to use my body as her pillow. Every once in a great while I can detect no movement, no indication of life at all.
Instinctively my mind thinks “This is it.” Cindy has passed away in her sleep. With a moment of deep concern I heighten my senses, maybe shift my body a tiny bit to maximize perception. Then I detect the slight movement of her breathing and I relax. I’ve just gone through our version of: “This was only a drill;” the irony is not lost on me.
I have shared with you a few times that my goal is to maintain a high quality of life for Cindy up until she passes away. The optimum scenario for that goal would be Cindy passing away in her sleep. Though no longer of sound mind she would be healthy and happy up until the time of her passing. This is what I ardently hope happens, even though I recoil each time I wonder if it has. These are the two sides of my ultimate goal, the “be careful for what you wish.”
On one such morning this happened near the time for me to awake Cindy and get her going. My routine calls for me to throw my arm over for her a bit. Still asleep at first, Cindy always reacts with a barely audible sigh, a human version of a cat purring. When her eyes are opened I go to the next step, one of my one-liners. “Do I know you?” I might ask, or “Am I in the wrong bed again?!” She always giggles at my one-liners, even when repeated for the hundredth time. In reality, all I have to do is smile a certain way and she’ll giggle. This is the beauty of Cindy’s condition for me, her pure state is such a joyful one that even I can make her happy.
On this one morning her mirth was short-lived. We struggled with her clothes during bathroom duty. That was followed by an unsteady time for her going down the stairs. As I prepared for breakfast she stayed out of the kitchen because she needed a good cry all to herself. When I was done with preparation I went to “turn on the charm;” Cindy’s sadness faded away.
These are the day-to-day two sides of Cindy’s life. Joy and bliss for her 100% of the time is too much to ask, but then, that’s true for everyone. I’ll settle for no more than 10% sadness, with some additional time spent in a fog, up until the time of her passing.
Yet I know such a high ratio of happiness for Cindy is contingent on her staying at home with family. I once suspected this was not possible, but as I’ve been able to adapt to the changing conditions through her advanced Alzheimer’s, I’ve grown in confidence that I can see this to the end, to the point of waking up one morning when it is no longer a drill.
However, I’m not confident our house can adapt. All our bedrooms and one bathroom are on the second floor. She is still in good shape, can still stride out on a smooth road surface, but her unsteadiness on the stairs concerns me. Lately, her reluctance to take a shower has grown ever stronger, simply because she apprehends that first step up over the lip of the bathtub.
This gets at yet one more “two sides” of the equation. When the diagnosis of Alzheimer’s was made I determined that the goal of maximizing her quality of life was best accomplished by me focusing on her care, rather than working part time. We have lived on her disability income and spent down our meager retirement funds accordingly. I don’t regret that decision. The overwhelming proof of its success comes when Cindy giggles each and every morning. Yet we have not the funds to renovate the house for a first floor bedroom and bathroom.
There has been recent cause for hope. Cindy now allows me to lift one leg at a time up and over the lip of the tub without seeming to be alarmed or lose her dignity. If the time comes when she can no longer use the stairs, I believe I can carry her up and down with minimum assistance. I did not become a “lean, mean hiking machine” for nothing (OK, I’m not so lean anymore). Yes, there are two sides to many things, but the path becomes clearer when there is but one goal.
This was a nice read. Such a sad, sad disease, but you are handling it as well as possible. Thoughts and prayers.
Thank you Sharon. How is your health these days?
Kirk I am so proud of your commitment to Cindy during these most difficult times. I understand the challenges of caregiving and admire the way you are able to provide for her with patience and compassion. The love you demonstrate is heartwarming and obviously she responds in kind.
As a Hospice nurse involved in caring for Alzheimer’s patients, I only hope that you have assistance. Hospice can provide a bed and bedside commode along with other durable equipment that might be needed to help you keep her at home. They can also send aides to your home to bathe her, and nurses to help manage her medications. They can also offer respite care when you need a break.
I’m sure you are aware of these and other options I just felt compelled to offer some options for your logistical situation. In the meantime, know that we are all so very proud of your response to such a difficult situation and appreciate the updates that you offer for those of us that are out of the area.
Best wishes, my friend, as you continue to do the most difficult job, caregiving. Sending love and support.
Lynda
Thank you Lynda. Most of the care activities you listed I already do. I find that if I pay attention to my own brain health checklist (diet, exercise, leisure, social interaction, etc.) I do well even with Cindy’s further deterioration. If it gets to the point where something like a bedside commode is necessary, which might happen, the battle has been lost. Be well.