Dementia Journal, Jan. 18, 2018 — The hope of new beginnings

I feel there is a new beginning in my life now, the start of something I’ve hoped for, a confidence that my depression will continue to subside and that the intense and terrible anxiety I felt late last year will also continue to fade until I feel like I’m in control of my days again. I am so thankful I feel better because as you will see it takes every ounce of patience and self composure, plus using my survival wits to weather the unpredictable crises that pop up out of the blue each day of my life as a caregiver.

I really do have to live one day at a time as I enter the eighth year of caring for my 94-year-old mother who suffers from increasingly severe dementia and diabetes. She had two very bad diabetic lows this week — never before like that — and a terribly angry and wildly paranoid hour today wherein I was told repeatedly to get out of her house because she didn’t trust me and I was trying to take the house from her. She tried to kick me and hit me with a Kleenex box. It was an awful and frightening episode. It’s also very alarming and frightening to see her hands shaking and trembling when she has those diabetic lows. Her blood sugar reading was 39 so I had to work fast with orange juice to get it back up. Contrast this with a normal blood sugar and sweet personality and mood when she tells me she loves me, couldn’t live here without me and takes my hand and holds it close to her face.

As you can imagine, her personality shifts are jarring and upsetting in the extreme, but such is my desire to keep her out of a nursing home that I’m willing to put up with more than I ever thought I would or could. It’s so sad and disorienting to hear your mother saying terrible things about you and an hour later holding my hand and thanking me for all I do.

Amazingly, solutions and strategies come to mind during her dementia storms when she is slapping her hands on the TV tray and calling out “Help, Help!” as the caregiver and I look on with rising dread and foreboding. Will she come out of this? Will she take the sedative? All of a sudden I remembered the typed copy of my grandmother’s favorite Bible verses. I had written them down when I was 12 years old and visiting her on vacation. I handed them to Mom and she immediately started reading them out loud for about 20 or 30 minutes. A remarkable transformation came over her as she continued to read the verses. She calmed down and completely came out of that latest episode of what is referred to as delirium, and it’s common among people with dementia who get agitated, for whatever reason. I sighed with relief and called the next caregiver scheduled to come and told her Mom was back again to her sweet self, which she is at least 95 percent of the time. But the delirium episodes are the only thing that truly makes me consider throwing in the towel and finding a place for her. If these become more common, I don’t know how I will ultimately handle it, but that may be in the future.  Right now I’m concentrating on the present.

As I mentioned before, I have wonderful caregivers who feel like family and have been with us for years. Ultimately though, the responsibility falls on me. Our goal remains to keep her at home, but as month follows month the demands of caring for her and keeping up this house and tending to all be paperwork and a myriad other responsibilities mount. There’s no let up. The toll is heavy on my heart and my soul is weighed down seeing Mom disappear excruciatingly slowly. So slowly and inexorably that when I see photos of her from just a few years ago, I am dumbfounded and realize how much I just don’t notice and don’t remember what she and I are going through.

I wonder, pray and hope I can continue to care for her and at the same time have some sort of life of my own. But this is all sacrificial. I know that deep down I can’t imagine doing anything other than what I’m doing presently.

Sometimes, however, I feel so trapped and cut off from others and the the world around me that things seem to be closing in and I can’t see a way out. But I only strongly felt that his way when I was feeling so depressed late last year. That has lifted quite a bit lately, and I feel considerably better and my appetite has returned.

Whenever I succumb to peering into several imagined scenarios involved the future and start to ruminate and dwell on what might ultimately happen to Mom as well as to me, anxiety starts moving back in. I begin to feel an existential sense of dread. Those feelings were most acute late last year almost every morning, and I truly didn’t want to get out of bed. I made myself do it.

Mornings are more bearable in this new year and as the days unfold, I feel a certain level of confidence returning as long as I dwell on, and live primarily in, the multitude of present moments that make up each day.