Dementia Journal, Oct. 29, 2015 in Daydreaming on the Porch

Mom will be 92 in December. Physically, she holding her own. Two recent doctor visits — to our primary care physician and to the cardiologist this past month — came out okay. Blood work and vitals stable. No change in prescriptions. However, the memory loss and general physical weakness and deterioration continue their inexorable and painfully slow progression. It’s hard for me to imagine it, but I am almost getting used to Mom constantly asking the same questions over and over again for maybe 30 minutes to an hour. She can’t ever remember the answer I give so I have to keep repeating it. She’ll insist I do so. For instance, “Are there lights on next door? Both houses? Who are our neighbors? Do we have neighbors?” Over and over. It really drives me to distraction at times, but I endure it. I cope somehow.

Sometimes Mom seems to exist in a time vacuum. Every morning is the same, taking vitals, giving insulin, blood pressure. It’s the middle of the night I’ve come to vaguely dread, not because of any surprise related to her condition, but because I never know when I will hear her calling me on the monitor. I’m upstairs, relaxing in bed with my iPad or a book or magazine, or, I’m in the middle bedroom upstairs (my study, if you will), and I hear first the faint call of my name, then quiet for a moment, then louder and more insistent. If I am not down the stairs and in her bedroom to tend to her quickly enough, I hear this, as I’m half way down the stairs, “Help! Help!” This ensures that my pace picks up even as I try to be careful going down the stairs at 2 or 3 am. I’m not a young man anymore. Last night at 3 am it was incontinence and diarrhea. Cleaning up and wiping and disinfecting, emptying the portable commode bucket and changing her disposable undergarment. She helps me all she can, standing up and holding on and wobbling a bit as I get her cleaned up. Each night this has become something of a choreographed event, some nights worse than others — some nights much worse — and I start to lose it. I go through the motions, trying to keep calm and patient, inwardly becoming frustrated and depressed and agitated, trying to control my emotions, even as familiar with this as I am by now. Sometimes I let it show on my face, and I can’t help but reveal the frustration and even anger that she and I have to go through this in the first place. Anger, and yet resignation at the fateful course my life has taken as a caregiver, full time over the past five years since I have been living at Mom’s house. We have five part time caregivers during the days I am at work and in the early evening. Without them, I’d be home 24 hours a day.

During these episodes of incontinence and diarrhea in the middle of the night, Mom will often alternate between urgent prayer and supplication: “Please help me, God, please help me!” to “Why is God doing this to me?” I feel so helpless during these episodes. Mostly I don’t say anything in response, which might be a mistake, but other times I will try to reassure her that God is not doing this, that things will be oak. Meanwhile, I am muttering to myself that this is the “human condition,” or that I hope I never get to be that old and feeble and plagued by dementia. Or, I’ll think, Who’ll help me if I get to that state in life? No children to be caregivers for me, that’s one thing. I can’t even imagine living to 92, so that’s some slight consolation.

It’s 3:45 am and I have cleaned Mom up as best I can and gotten her tucked back in bed. She’ll look up at these times and smile at me and say, ‘Thank you for all you do?’’ You’re welcome, Mom.” I do all this because I love her, she can’t do it herself and no one else is going to get up at 3 am and do it for her. Can you imagine what it would be like in a nursing home? Would the overworked, understaffed aides tend to her or wait until the morning? I shudder to think.

After tucking Mom in bed, I head back upstairs, giving Ginger the cat a good rub and plenty of loving words and then try to resume whatever I was doing. Obviously after all that work, I am not sleepy anymore so usually will be up at least another hour or so. Often, I’ll use the time to work on uploading photos from my garden visits and backroads day trips the previous weekend. When I do get back in bed, I drift off to sleep and know I am having vivid dreams when I hear the faint call again. It’s been an hour, maybe two since I was downstairs. Sometimes instead of calling my name, she’ll say, “Mama, mama?” calling for her mother because she thinks her parents are still alive at those times. She mostly knows her three sisters are gone and she misses two of them terribly. Sometimes she’ll call out the name of my father and brother, who shared the same name, and finally she will call my name. This doesn’t happen often, but it’s indicative of the fact that her sense of time and of the past is often confused and altered, although her memories from the distant past can be quite sharp. So, at perhaps 6 am I have to go downstairs yet again to help her use the bathroom.

Some nights I get into an auto-pilot mode as far as my emotions are concerned. I get rather numb. I know I have to do this, I want to do this as long as I can. I love her dearly and can’t even imagine her in a nursing home. “Do I need to be in a nursing home,” she will often ask me. “No, Mom, you don’t need to be in a nursing home,” I reply, sometimes with less conviction than at other times. Then, she’ll say, “I don’t want to be in a nursing home. I love my home.”

I worry about my health, naturally. My last physical at the doctor’s came out pretty good, quite good actually, including blood work. I tell myself that love must trump these physical trials and tribulations. It won’t last forever. I can keep on keeping on, can’t I? I feel mostly pretty good. Endless energy, it seems. I function well at work on only 4-5 hours of sleep, if that. And, of course, that’s fitful sleep. But I’ve been this way as far as sleep is concerned all my life. So in that sense, I am maybe more able to cope than the average person.

Where does it end? I try not to think about it. The minister at our church and an elder have been coming every few months to bring communion. Mom positively glows during these visits. She loves it when people come to visit her. She invokes the power of prayer often, reads her devotionals (she can still read and comprehend at a level that surprises me sometimes. Remember, it is a very, very slowly progressing dementia). I wish I had her level of conviction and faith. It’s all I can do to shepherd mine along, somewhat grudgingly, and I don’t like this. Caregiving and seeing the slow, ravaging effects of aging and dementia make me question everything I believe in. Why? I’m often unable or unwilling to pray even as I continue to be blessed with the energy and presence of mind to do all this day in and day out.

This is the culmination of my life at age 64 — work and caregiver. Thank God for my passion for photography. That also keeps me going. However, I don’t really know what free time is anymore. I am constantly bound to the clock and my work schedules, and the daily schedules of our caregivers. I have to keep track of all their hours and pay them. I have to arrange for changes in the schedule when they can’t come to work, for whatever reason. Fortunately, we are blessed with really good caregivers, and they have become like family to us. Mom can never be alone, except for brief periods when I am alone with her after work and in those early evenings when a caregiver is not there or perhaps on a leisurely Sunday morning when it’s just us. I’ll let her know I am going to sit on the porch for awhile. I leave the door open a crack and she listens to a garden video or reads her devotionals. It’s not too long though before her attention to these things is gone and I have to come in. Sometimes if she doesn’t see me on the sofa next to her, she’’ll panic and not realize I am even in the house. She’ll yell loudly for me.

If others are like me, I believe caregivers think a lot about their own mortality. I know I do, but I am so busy and so pre-occupied with cares and obligations at home and at work, that I rarely have the time or inclination to think about my own last years. I do, of course, and it’s probably more often than I care to admit. I see all the infirmities of age so closely and intimately, that I can’t help but feel the weight of my own aging more heavily. Each day at work, in the background of all that I do is a light fog of low-level anxiety. It’s almost always there. If something goes wrong or problems arise, just in the course of daily living and keeping up the house and my own bills and obligations, I ruminate about what could happen. I project possible futures, as bad as I know this is for me. I don’t have children or a spouse or partner to reflect, absorb, or share the causes of this anxiety with. This makes me feel very alone at times. It’s harder now to be in crowds or walk downtown to lunch. Seeing the ebb and flow of normal, everyday people going about their business can depress me and I have to shake it off. There seems to be no real relief from this. Maybe a vacation away from everything which I have not had in five years?

Then there is the anxiety about what my life will be like after my mother is gone, when we have sold or rented out the house, if we do that anytime soon thereafter. I can hardly bear to think about it, for as difficult and all-consuming as caregiving is, it is my life and reality. I don’t have an alternate reality. In a sense, everything has come full circle. When I was very young, my intelligent, vibrant and loving mother took care of all my emotional needs in the complete absence of a father who could not or would not share in that role. Now, I, the eldest son, take care of all her needs. In her bedroom is a picture I took of Mom and her granddaughter 25 years ago. I have written about this before because it is such a striking photo. In the picture she is a radiant and youthful 67 years old. But Mom has always looked at least 20 years younger. I see this photo all the time now at the same time I see her, helping her out of the bed to the portable commode, putting on her shoes, hugging her. A lot is still there, however. She still has her beautiful smile and I can see it now as she greets the Monday caregiver when she appears in the room to greet her as she gets up in the morning at the beginning of another week. I love to see that.

How could I give that up for a “memory care unit” in a nursing home? A co-worker once admonished me for thinking or presuming all such places were bad and poorly run. Maybe she has a point but then again she missed the whole point of what I am doing. Yes, the stress and anxiety are terrible, the mental wearing down that dementia causes in a loved one who is there every day and every night is inexorable. The consequences of this for me could be dire, but I don’t really care. I’ll be there for her until I can’t be, or until it’s no longer necessary.

Nov. 1, 5 am

I’ve just come back upstairs after helping Mom to to the bathroom.

As I was leaving her room she called out, “Tell me I am going to get back to normal.”

“Everything will be fine, Mom.” And I meant it.

Last updated November 04, 2015