Dementia Journal, May 15, 2019: Emotions of a caregiver

5 am

Deborah Barr wrote a beautiful and wise book for caregivers titled, “Grace for the Unexpected Journey: a 60-day devotional for Alzheimer’s and other dementia caregivers.” I’m only about half-way through the book, but it’s already extensively marked up and tagged.

Caregiving is indeed an “unexpected” journey for most of us who embark on this path, often rather late in our lives. Thirty years ago I couldn’t have imagined doing this because I never thought my mother would have diabetes, much less full-blown dementia. She took such good care of herself for so much of her life: regular daily walks, no smoking or drinking, healthy diet and regular checkups from her doctor. Twenty years ago when she was in her early to mid 70s, I saw noticeable changes but nothing too severe or even to give a great deal of thought to. However, in talking to her doctor after a checkup when she was around 82, this wise doctor told me, and I never forgot his words, “Your mother will experience a very gradual decline.” And that’s been absolutely true. Her dementia has, in fact, progressed very slowly. She’s 95 now, has no short-term memory and barely knows who I am. Her moods are very volatile and her words and sentences fluctuate constantly between irrational and barely understandable and moments of partial to great lucidity. The great majority of the time she’s extremeIy sweet but I never know quite what to expect late at night when everything is worse. Her moods and disposition can change on a dime when she has to get up and get ready for bed.

Early in the book Barr wrote: “…caregivers step into the future with no itinerary and no map for the journey ahead.” Having been on this journey for some years now, I have experienced the whole spectrum of feelings, thoughts and emotions as I care for Mom day after day. Barr lists 36 emotions to circle of you’ve experienced them. Needless to say I checked off all of them, but will write about the main ones, each stirring strong feelings and bringing to mind incidents that I remember.

• Searching — I’m often searching for answers as to why this disease or condition exists, something which causes such unbelievable pain — the gradual loss of a person you love who loses her identity and sense of self as her memory gradually slips away to nothing.

• Anxiety — How often have I awoken in the morning with terrible anxiety, not wanting to get out of bed and face the day. I want to curl up in a cocoon and never come out.

• Anger — Mostly my anger is directed at myself when I get impatient or say or do stupid things while tending to Mom. I also feel a lot of anger when a I feel I can’t get enough help from people who should do more.

• Jealousy — This is something I really have to fight. It’s tied into the self-pity mode that comes around too often. I see people all around me having fun, being carefree, taking vacations, and, in general being free, and I’m jealous of that.

• Sadness — Strangely enough sadness is something I don’t feel that often. As I mentioned earlier, Mom’s dementia has evolved so gradually that I have had time to gradually adjust to her altered state of mind. I think we all have a remarkable capacity to deal with change and sadness as long as it doesn’t hit us too suddenly. A year and a half ago I went through several months of rather bad depression. Now I have that pretty much under control with the help of medication. I also got therapy for a couple of months. More than feeling sad for myself, I feel anger at the state of the world and the stupidity of people who go around so clueless about the extent of the danger we face to the survival of the human species and the planet.

• Emptiness —Sometimes late at night when everything seems to be going wrong and Mom’s incontinence seems unending, I enter a state of detachment and emptiness when I basically become numb. This is a coping mechanism because there’s no escape from what Mom and I are going through.

• Low self-esteem — Oh my, this is one to fight against, too. Being in a situation where there’s no exit or end in sight makes me think, “Why me? What have I done to deserve this?” That begins a self-pity cycle even when I escape to the rocking chair on the porch after I’ve gotten Mom to bed. Then it’s quiet and a sense of peace finally descends. But soon I’m reliving past failures and horrible decisions. I seem to have to do this. But my self-esteem recovers when I think about how much I’ve been able to do for Mom and how I retired after successfully working at a job I enjoyed for the most part for 21 years.

May 17, 11:30 pm

• Numbness — the other night as I was getting her to bed, Mom despised me and everything I was doing, especially when I was wiping and cleaning her. She wished I would be killed, told me I was nasty and started swatting me and grabbing me with her hands. Patience! Patience! I stroked her hair and told her I loved her. When I got her on the bed she was calmer and gave me a faint smile. When I left the room I was more numb than anything. This is happening more often. It happened again tonight around supper time. She didn’t want to eat. She kept slapping away the spoon as I tried to feed her. She wouldn’t let the home aide feed her either. I tried to convince her she had to eat because she is diabetic. I had to give her an Ativan. Forty-five minutes later she had calmed down and was eating. Afterward I again felt a sense of both relief and numbness. Her mood shifts are definitely becoming more routine, which scares me.

• Yearning — Many a night at about 10:20, minutes before the home aide has to leave, I am relaxing in bed but know I have to go downstairs and see her out. Then I’m on my own for the night, as has been the case for each night during the past ten years I’ve lived here taking care of Mom. At 10:29 I look at my watch. How I yearn to be free of this and how well I know Mom would want to be, too.

• Resentment — I resent that other people are so free and Mom and I are captives of this terrible disease, dementia.

• Depression —I rarely feel depressed, just numb and resigned to this seemingly endless job of caregiving.

• Out of control — As long asI live I will never forget the night 1 ½ years ago when Mom careened out of control, panicked, was very angry with a wild look in her eyes. Nothing I could say or do would help calm her down. I called my brother and sister. My mind was racing. Was I going crazy, too? What was going to happen? How was this going to end up?

• Despair — Fortunately, this is something I rarely, if ever, feel. Mom is mostly sweet and mostly sleeping. I have so many things I want to do — writing, photography, reading — that there’s no time for despair. And the main reason I have all those interests is because I got my depression under control.

• Irritability — This is an understatement. When I’m having a bad night, knocked over a vase with flowers, have a sore back, the home aid couldn’t come, and/or Mom is yelling, “Better come here,” when I’m in the kitchen trying to fix some supper, I start to get very irritable. I get really mad at myself for the way my fate seems to be closing in on me at those moments.

• Denial — I’m way past being in any state of denial. I long ago accepted the reality and inevitably of this late-in-life, unexpected caregiving journey.

• Blame — Every now and then when I’m feeling angry and even bitter about a life with very little freedom from obligation, Especially since I’m recently retired and should be laid back and enjoying every bit of the life I have left, I start the blame game. Not often, but it happens. I’m only human. The target more often than not is my father and the way he treated me when I was younger. What if I had had a father whom I could have looked up to, loved and who was a role model, instead of the opposite? Surely if I had had a family, kids, grandkids, etc. I would not have been the default caregiver among us three siblings.

• Regret — you know, I’m at the stage of life now where past mistakes and regrets, the “what ifs” in life are losing the their hold on me. Yes, I have terrible regrets, but caregiving for Mom has fulfilled a need in my life that I never would have been able to fill otherwise. I have no regrets about caregiving, despite the enormous pain and sacrifice it has entailed over many years.

• Loneliness — Thirty years ago in the 1980s, I went through some of the most intense periods of loneliness and isolation I have ever experienced. Today loneliness is impossible with my “36-hour days,” but I yearn for solitude and aloneness more than ever. When I do get away for solitary walks at the nearby parks and nature preserve, it is then that I am happiest. I relish time by myself, as much of it as possible, because I’ve always been a solitary pilgrim in this life.

• Envy — I love my sister dearly and am happy for her that she has so much freedom to do whatever she wants. She and my brother-in-law are on a two-week vacation out West, visiting places I’d love to re-visit after 30 years. Yes, I’m very envious but I’ve found a contentment here in this special place along the coast of South Carolina that I’m truly grateful for. I found a home here 25 years ago. I don’t have a need or that much desire to travel, quite frankly. I’m not free to do that anyway. Caregiving has in large measure made this realization possible for otherwise I might have been endlessly pursuing a job or place to call home.

During the writing of the first part of this entry, I was listening to “Serenity” by Michael Hop and Moses.