Dementia. It’s a cruel disease. It creates such a bizarre and unfair grieving process….add to that a four inch bleed from a hemorrhagic stroke all fighting for dominance in an almost 91 year old brain. I only see her once a week, mainly because it was at her request. She wants no phone calls, no window visits, no or letters or cards or photos. She’s deaf, plus It hurts that she can no longer make the familial connections- who’s grandson son has that blonde daughter that just had a red headed baby. She’s starting to take longer to recognize me. I can see it in her eyes. She knows I’m related to her and I have a name, though total recall of who I am is taking more time each week I see her.
Last week we were talking about finances and her estate and from her wheelchair (she refuses to stay in her bed) asked me to hand her a box of Kleenex in which she was sure she kept some important portfolio information.
There weren’t any documents. I knew there wouldn’t be but you learn to humor dementia patients. They can get angry quickly and their language can become quite loud and colorful. So, I comply with what her dementia demands. As soon as I’d emptied the box and searched through it almost tissue by tissue, she was on to some other topic. Generally speaking, she was more lucid than confused, but could go either way as fast as flipping a light switch. It’s difficult to witness and every weak it gets more obvious.
Dying in the time of Covid has complicated things immensely and in a weird way, it’s also made it easier. She can only have two in-room visitors: Me, her essential caregiver and my nephew, her grandson who’s the Executor of her will and her Power of Attorney. He’s also a a very busy working lawyer who can only see her sparingly, so really, I’m her only visitor. I see her once a week. But in years past, this was our thing. We’d go out for lunch and run errands once a week. That was all she wanted and needed of me. It worked out for both of us. So my once a week visit in long term care isn’t all that different….except she can’t walk, speak very well, has no short term memory and lapses into confusion as quickly as she snaps back into lucidity. Mother was always kept to herself. She never remarried after a very turbulent divorce and found comfort in solitary life. She was never a warm, overly caring or reassuring mom, even as a younger woman. Now, her dementia is compounding that fact as she inches closer to her mortality.
I’ve spoken with my sisters and other family members. We all feel as if mother died months ago…in November with her first stroke. There was no funeral, nor will there be. The service she so carefully planned in 1995 involves buildings that no longer exist, participants who have moved or died. She’ll be 91 in June, God willing, and not only have all her friends passed on, she’s the only surviving member of her family. Eight brothers and sisters have gone before her. In fact, she lost her only other surviving sister about a month ago and expressed little to no emotion. But, that surprises no one who knows her.
She was born in 1930 and grew up during the Depression and WWII. That combo of global events affected her generation in major ways. Mother loathed weakness and felt crying and grieving were displays of this. My sisters were and I were fed and clothed and had a roof over our heads. We got Christmas presents and visits from the Easter Bunny and Tooth Fairy, but she wasn’t physically affectionate. She was stern and caustic and took out her frustrations of a souring marriage on us. We knew better than to go to her if we scraped our knees or had our hearts broken. One could say that made us self-sufficient in certain ways and seriously emotionally neglected in others. I won’t bore you with details but that wreaked havoc on our lives as adults.
When mother finally lets go of life, I feel won’t be any real closure. We cleared out her house in early February and donated everything to Goodwill. There were very few things that she possessed that we had a connection too. I took a plastic red bottle opener that I remembered. And I took a photo of her mother, Nanny who I adored, but lost when I was six. Other than that, we did what good daughters do, we took care of what needed to be taken care of sans any emotion. It was a job we had to do. We were stoic. Business like. We learned that from Mother.
I’ve noticed people don’t quite know how to mourn someone who’s still technically alive. I’ve noticed people avoid those who are mourning the living, well, those who are technically still living. As someone mourning a dementia patient who you lose before your very eyes, I don’t know how to be around people who’s lives aren’t in anguish. It’s awkward all the way around. I’ve changed as I’ve dealt with my mother in person and everyone else at a distance. Despite the lifting of Covid restrictions here in Texas, her facility won’t dare go Cuomo. The Covid rules staunchly remain in place. No plants, flowers, outside food, masks, no physical contact. Twovisitors only and only at certain times of the day, on certain days of the week. I take a Covid test every week and I try to coordinate it with a visit since the facility offers them twice a week.The visits usually last 30 minutes before I’m escorted out, though she’s dismissed me after ten minutes before. With her speaking so garbled and logic and short term memory so torqued, it’s not hard walking out of her room, but it always hits me when I get home. But it never lasts long. This, I say to myself, is just my reality and feeling bad because I don’t feel worse, just isn’t in the cards.
She’ll be gone soon. And it’ll all be different. I’ll be different. I won’t live by the phone anticipating that call from a nurse telling me that she’s had another stroke, a fall or that all the signs indicate death are imminent. But mother stated early on she doesn’t want an audience when she takes her last breath. I’m a mere four miles away. And since Covid, I live in sweats and no make-up. As for my hair, with the stress I’ve been living under, I’m lucky if I have any left. Dying parents affect ones vanity. So, when the call comes, I’ll defy her wishes and I’ll get to her room ASAP and I’ll stare down at what’s left of my mother, hearing that damn death rattle as she exits. I’ll say a few things I need to say. Things I have to say in order to allow me to keep on living, even as she dies. Her soul moves up and I hope mine, will move on. She can leave a life behind, a life that was never happy. She fought happiness and I never understood why. That doesn’t really matter now. The kindest thing I can say is that she’ll be free of being imprisoned in her own mind and body.
I’ll live a life that no longer includes her. As sad and bad as life could be with her, I sit here tonight, wondering how I’ll respond to that reality. Will I cry? Mourn? And if so, what will I be morning exactly? Will I have any reaction? Will I miss her? Will I miss the burden of trying to appease someone who lived to refuse to be appeased? Who criticized, could be extremely cruel, had severe emotional issues which made being her daughter my most difficult task?
Lastly, a coda to this sob story…..A few years ago, when my mother needed rehab after a fall, I spoke with a nurse who’d been in long term and palliative care for 30 years. I told her I used to take cookies to various nursing homes on Christmas Eve and I’d see patients just sitting in their wheelchairs or standing with walkers, mindlessly watching TV or perhaps waiting for a holiday visit from family that would never come, that never comes. “It broke my heart”, I told the nurse. She said she felt the same way when she first started her career, but as she got to know her patients when enough of their personalities fought through the mental haze of Alzheimer’s and dementia, even briefly, she realized that more often than not, neglected seniors were often neglectful parents and all their kids were willing to do or emotionally COULD do was write a check for their care every month; for someone else to care for them.
That was five years ago. It still gives me pause. That said, I wish I’d been a better daughter.
I wish she could have been a decent mother. God forgive us both, I suppose.