Caregiving in retirement: a new world in Daydreaming on the Porch

Fear not for the future, weep not for the past.

Percy Bysshe Shelley

It seems an eternity now since I was in the working world. Retirement still seems surreal to me. Five months after I carted off the last box of my cubicle belongings and memorabilia, and savored the golden afterglow of the small going away party during which I was presented a very nice plaque by our executive director and a signed photography book from my co-workers, I am in another world entirely. I never imagined things would be so different. No more daily banter with people I had worked with 15 or more years; no more customer service and briefly meeting and helping nice, interesting people.; no more…normal working life where you feel useful and are fulfilled in your work. Gone.

I now wake up most mornings feeling depressed and wondering when I will free from the anguish and tribulations of seeing a loved deal with dementia. I steel myself for another day of being at home helping the caregivers with mom as the dementia progresses and I lose a little bit more of her week by week and month by month. I keep hoping it won’t get too much worse for her, that things will level out. But each morning also as I get up up for the day and see her beautiful smile, I feel hopeful, even if I’ve gotten up with her three or four times that night and early morning. All the dementia agony and confusion pales for a time during the morning when there’s lucidity and awareness.

Once I finally get up and fix breakfast and coffee (it seems like such a burdensome chore when you are fighting off depression) the dark clouds lift a bit as I look out on our back yard flooded with sunlight.

It’s a normal morning for Mom. I’ll soon have orange juice, coffee and oatmeal ready for her after taking her blood sugar reading and vitals. Most mornings one of the caregivers is there to help me after that and attend to Mom’s needs. When they arrive I don’t feel so alone anymore. Oftentimes the late morning can be the best time of day as the caregiver bustles about fixing her egg and toast (the last conventional food we give her; the rest of the day it’s pureed baby food which she’ll eat rather than chew and spit out regular food. That was many months ago now that she started on the soft food.. I frequently give her hugs and she’ll say, “I love you. You are my son, aren’t you?” “Yes, Mom,” I reply. I’m your first born son and I love you, too.”

We’ve been spared angry, fearful dementia outbursts for a couple of weeks now. Every afternoon she gets a sedative and that seems to help. I’m taking some medication for depression as I want to try to deal with that before it gets worse. I’m also seeing a really good counselor and it’s been very good for me. I’m thankful for that. It’s helping me cope psychologically with this increasingly difficult period of caregiving for mom. We have some fall back options for getting mom placed somewhere if I can’t do this anymore, but I’m hoping I can care for her at home. I will know when I can’t.

One of the strangest things about retirement, apart from being home more often to help the caregivers with certain things, is the strange sense of going back in time decades when I was unemployed and looking for work, sometimes for long stretches of time. I had to completely structure my own time. The big difference now is that I have the full-time job of caregiving, while also not working when I’d normally have unlimited free time. Time to do what you want. That’s what retirement is supposed to be about, isn’t it? But I’m having to assist the caregivers more and more now because Mom is weaker and more fragile.

When I have time to sit and think at the park or gardens, or some other peaceful place with my cell phone stuffed in my pocket and not being used, I dream of what it will be like when I am really alone after Mom is gone. Will my depression get worse trying to fill the void of her loss. Or, will I feel that she is liberated from her awful plight and I am also. Also, unfortunately, when you are depressed the past comes back very frequently and vividly and it’s not always the ”good old days” kind of past.

As Michael Lawson wrote so accurately in his book, “Facing Depression”: “When our feelings are at a low point, our minds will often wander to the byways of our past experiences. We find ourselves morbidly reliving our bygone sins and failures, angrily bemoaning the faults of others and bitterly dwelling upon old injustices, hurts and sadness. This is the nature of depression: what is past is dragged uncomfortably into present awareness to both pain and torment our fragile emotions.”

I sometimes lie in bed in the morning thinking about two particular job failures decades ago. I think of my solitary life, doing everything alone, by myself. I’m 66 with no immediate family of my own, no supportive spouse or partner or children. I become too aware of these sad facts. This is exactly the kind of thinking I should not be doing. I should rejoice in the fact that I have dear close friends and loving family, my mother and brother and sister. I retired after 21 years at a job I really liked and had so many interesting friends among my co-workers. I am very grateful for that job, more than anyone will ever know.

When I think about the past now, I often return to the golden age of my 20s after college when the whole world seemed wonderfully open to possibilities of every kind, when I had so many new friends, new jobs and was just living life as fully and passionately as you can when you’re young.

As I pick up my devotional books in the morning I read about the absolute necessity of not worrying about tomorrow and the future when no one knows what it will be like. Depression deeply tests your faith and hope in the future, but at the same time it has a way of helping wipe the slate clean and allows you to start over. It jolts you out of the trivialities of life and into the deep marrow and substance of what really matters. In some important ways I believe that has happened to me now. I have a chance to finally cast off some of the chains that have held me down, hindering spiritual progress and growth. I want to live again in the radiant light of hope and possibility and I know that God guides my life. When I have glimmers of insight into the Truth, I know things will be alright, that my suffering and Mom’s will not last, but will be transformed when the time comes.

I can’t change who I am, nor would I want to, but I can live in hope instead of fear of the future. For all I know the hardest part of my present struggles may be over. Mindful that all this serves a purpose, I can hope that I can successfully deal with what lies ahead, all the while not trying to anticipate or worry about what that may be.