NOTE: I have not been posting regularly here because, frankly, I have not been a good place, or places. Such is life with dementia. I’ve wanted to write, to share, but the weight of loss has been too great. If you have cared for a dying loved one, you know what that weight is. I am not sure why I am writing this morning or whether what I am writing is too dark to be helpful to anyone. But sometimes, you surrender your fingers and keyboard to something inside you that just wants to get out. So it goes…..
BUDDHA IS quiet this morning. Fitting, I suppose. I did not plug him in so the water is not gurgling.
I have my jacket on. Fall is sneaking in on us. It rained last night. This morning there is no sun and a breeze is not gentle. But in spite of that I am sitting out on the patio, hot cup of coffee in hand, looking at the flower petals and leaves that are showing wilt, despite the rain.
I am thinking about Fall and what comes next. I am scheduled to give a talk Sunday to fellow travelers on this slow dementia train. I’m going to be talking about how to cope as your loved one changes. I’ve gotten the script done, rehearsed it but I haven’t yet done the ending.
Fall has me thinking of all the metaphors we have used for weather and the change of seasons. This morning, sitting in a gray chill, I remember Falls past. I remember the brilliant colors, the nip in the air, the smell of woodstoves cranking up for the first time and, going back to my childhood, raked-up leaves burning in the streets.
When my mind comes back to this morning, and the signs of Fall out here on my small apartment patio, I am wondering if you can have Fall without colors. It seems to me that is what dementia is – a gray world where the sun does not shine and everything is muted and faded. I don’t know if that is how Connie, my wife, sees it. I can’t visit her world. Maybe my sense of a world without color is really just self-pity; me looking into myself and focusing on what dementia has done to me.
I did not just arrive here on my little patio of self-pity and bone-deep weariness this morning. It has been a difficult week and one that signals changes coming.
Connie has been calling me more frequently. She still has her cell phone, even though the memory care staff has told me I need to take it away for both our sakes. I have resisted. Every morning after breakfast Connie calls me. She can’t manage the phone any longer but each night when I leave her I set the screen so she sees the last call to me and all she has to do is tap it. She calls, I ask her how she slept, was breakfast good and be sure to do the activities.
Now she calls more frequently and the calls are filled with fear and confusion. No matter the time of day, no matter what I am doing (and how would she know what I am doing?) she calls and wants me to come rescue her.
“They have captured us and won’t let us go.” “I did something horrible and they all hate me.”
LAST EVENING SHE called me twice just as I arrived outside the memory care unit. When I got inside she was pacing, shaking. “They came in my room.” Who is “they.” “Them” she answers. Staff or residents? “I don’t know.” What did they do? “Inappropriate things.
I know nursing home abuse is real, but I know the staff on duty today, and tonight and this is not abuse so I go out and describe it to an aide.
“We gave her her shower before dinner, rather than after,” the aide says, “and it seemed to confuse her. She kept walking out into the unit and asking where you were. She wouldn’t come out for dinner and when she did, she would take a couple of bites then go back to her room and we would have to bring her out again. She keeps asking for you, all times of day, and we tell her you will be here at night.”
When I went back to her room and told her she is safe, that the staff was not trying to hurt her she said “they are all liars.”
I screamed inside. I pounded walls in my head. How did we get here? I know, of course, how we got here. It’s dementia and it is ramping up the tricks it is playing on Connie. It is taking its knife to the last of the cords that tie her to her life before this all started and it hits me that I am the last and strongest cord. I know my son is one of those cords as well, but now it seems I am the one she keeps hanging on to.
I know I should be hugging her, stroking her hair, telling her it is all right. I know that and I do that. So why I am feeling angry, feeling so much like a victim, letting “poor me” thoughts into my head?
It’s because I am a victim. Every single one of us who is dealing with this dark and horrible affliction is a victim.
For Connie and for me, we have come to the Fall of our dementia, a time without color, without the crispness in the air, a time that signals deepening darkness and cold it squeezes that last bit of life out of a soul.
I am thinking, this morning, of those of us who love and have been loved by those who are going away. I realize we are not really “coping.” We are surviving. We are walking alongside our loved ones, holding them up and we will keep walking until it is over and as best we can, someday we will return to life.
Maybe next year, the leaves will turn brilliant colors, and we will walk with friends and families and talk of those who are gone with smiles and tears. But this year, we do what we can to survive, each in our own ways. It is all we can do.
Peace to you all.
Rich Heiland, has been a reporter, editor, publisher/general manager at daily papers in Texas, Pennsylvania, Illinois, Ohio and New Hampshire. He was part of a Pulitzer Prize-winning team at the Xenia Daily (OH) Daily Gazette, a National Newspaper Association Columnist of the Year. Since 1995 he has operated an international consulting, public speaking and training business specializing in customer service, general management, leadership and staff development with major corporations, organizations, and government. Semi-retired, he and his wife live in West Chester, PA. He can be reached at [email protected].