Dementia Journal, March 15, 2017 in Daydreaming on the Porch

Mentally and emotionally it’s been a tumultuous couple of months. It starts to all seem like some sort of never ending story of an aging parent deteriorating more rapidly now from her dementia, a son who is trying to daily cope with her struggles and loss of self and his own anguish and helplessness as she retreats farther away from reality, and occasionally descends into a frightening world of paranoid and fear. Add to all this is my desire now to retire and be home more often to help the caregivers and with this the recognition finally that we need to get Hospice involved. I’ve been putting that off. It’s a huge psychological hurdle to cross. But do it I must. I don’t necessarily want to retire, but I’m 66 next month. How much longer do I want to work and juggle all the other demands on my time?

Mom is weaker and more confused than ever. I’m really in denial that the end might be much closer than I seem to think or be prepared for. Her constant litany of asking if she’s “home” is starting to finally dawn on me that it’s in actuality a desire to leave this world and prepare for the world to come. For her that is Heaven where her sisters and parents are. I used to think this was only referring to a desire to return to New Orleans where she lived for 44 years before moving to Charleston 23 years ago. The other night for a couple of hours she kept up the refrain of wanting to return there and move back into her old home. I didn’t discourage that knowing how many happy years she spent there. I was born and raised in that city so I have a very strong sense of the place as my own “roots” although South Carolina is where all my family on my mother’s side is from.

So there’s “home” as in the present, our home in Charleston, and there’s that long ago home in the suburbs of New Orleans where we moved in 1961. And then there’s the final home, her home after she’d departed this world. Despite her dementia she is preparing for this. Last night she invoked rather strongly her Christian faith and how the most important thing now was her relationship with Christ and the fact that she is a Christian and has always tried to be a good Christian. “I want to go home,” she’ll now say more often without reference to a specific place here on Earth. “I want to be my old self,” she’ll also say. There are so many telling statements lately for me to interpret that I can’t keep up. Sometimes I just feel numb about it all. It’s quite depressing to be around this so often, particularly since I try to be upbeat and give her hugs and as much encouragement as I can. “Tell me I’m okay,” she’ll also ask quite often now. “You’re okay,” I reply emphatically, but with increasingly less confidence in the truth of that response.

My job takes me away from all this for awhile during the day and on Saturdays, which is the one day I cast off from all this stress for long drives in the countryside as I did last Saturday. But the respite is all too brief. I return to the nervousness and pit in my stomach, particularly if she hasn’t been having a good day. When she’s having a good day I relax a bit, I feel a return to a semblance of normalcy, and life proceeds. When she’s not doing well or has an unsettling morning as she did today, I feel the dark clouds of deep worry and uncertainty.

I often wonder how much more I can take. But I keep on. Why is this happening to me? After seven years of caring for her in her home, I have to ask these questions. All the events on the world stage and unfolding politically in the country since the election, don’t help and in fact, accentuate the anxiety. What is happening to this country, to this world? I know I am far from alone in these feelings. I take comfort in the fact that so many feel the way I do.

In spite of everything, it’s been a beautiful Spring. The azaleas have been glorious. The weather beautiful. I take hope and encouragement always in my deep and unending appreciation of Nature and beauty. On my phone, I listen to a YouTube recording of a peaceful, flowing stream. I savor moments of peace listening to that and place myself for awhile in those beautiful surroundings.

Sometimes I wonder what it’s actually like to feel “happy” – to relax and enjoy life. Occasionally I have lunch with old friends form work, and I have several old and dear friends I can email, text or call at any time. But they all have their busy lives and families. I now feel alone more often than not. I know it’s useless to work. I have good caregivers and the support of my brother and sister. But unfortunately, my sister is 3,000 miles away in Seattle. I so wish she was closer.