Promises, Promises | Lewy Body Dementia Association LBDA

Promises, Promises

by Ginnie Horst Burkholder

Nelson and I were married on a fall evening in a smallish country church where yew shrubs greeted the guests as the sun loped to the west. There were no glitches that mattered in the long run. My brother, who was to usher, had a colt being born and was late. My young nephew ate yew berries after the ceremony. We delayed leaving for our honeymoon while one family member called poison control, and another fed the nephew raw eggs in case the berries were poisonous. Yet another consoled the mother of the crying and gagging toddler. Once we thought he would be okay we took our leave.

We had friends sing a song at the wedding that was based on the story of the Biblical book of Ruth.

Whither thou goest I will go
Wherever thou lodgest I will lodge.
Thy people will be my people, my love.
Whither thou goest I will go

We started out on our honeymoon with three hundred dollars. The plan was to go where we felt led and be back before the money ran out. We easily accommodated ourselves to inexpensive motels, whatever attractions we spotted, and simple restaurants. We heated soup in a coffee maker. We were together and where we were or what we ate mattered not at all.

It’s good that we can’t see ahead. I think about that initiation into our marriage. Now I smugly mutter things under my breath when I hear young lovers say they pledge unconditional love, or pronounce expectations that they will always be together with their love. “You don’t know,” I say. “You wait and see. It’s just not that simple or easy.” But of course I keep those thoughts to myself. They’re entitled to their optimism and their naiveté.

A couple of weeks after we placed Nelson in a nursing home, he became very agitated. He asked to talk to me on the phone. Unable to decipher his words I told him I would be there to see him soon. I drove the six miles and met the nurse at the door. “This is not like Nelson,” I told her. She said she understood it was the disease, and that they were here to walk with me all the way to the end. I was touched by that promise.

Eleven months into Nelson’s residency at this nursing home, I began to get the uncomfortable feeling that they might request that he go elsewhere. Unlike most residents Nelson is strong, and on good days he can move quickly on his feet. For several weeks he had been exiting the nursing home about once a week, either following a visitor out the door or walking through doors without alarms.

My sister and I did everything we could to make this situation work. We regularly had three people with Nelson every weekday. Between the three of us, we put in five to six hours a day of care for Nelson. We worked with the ombudsman who is trained to ensure that a loved one is cared for properly and who works as a go-between with families and the nursing home. Our ombudsman was an invaluable resource for us and went out of her way to help. She enlisted the nursing home staff in strategies to address his restlessness. Anyone with a loved one in a nursing home should use this resource for any questions about appropriate expectations of care. In the end it wasn’t enough, and as Nelson’s exits became more frequent, my worst fears became reality.

When it became clear that we could no longer keep Nelson at this facility, the nursing home recommended admission to a small geriatric psych ward where medications might be fine-tuned in hopes of better control of anxiety. From there he would be admitted to a skilled care facility of our choosing where there was a secure dementia care unit. A patient transferring from another skilled nursing facility takes precedence for admission to an available dementia care bed over someone from the outside. It was a way to give us a better chance at getting a bed in a secure dementia unit. They recommended a small geriatric psych ward forty-five minutes from our house. The reasoning was that he would get better care there than at a larger psych ward in our own area. Also, they felt the psychiatrist there was a good one.

About the only good thing that came out of those ten days was the discovery that Nelson was vitamin D deficient. Because we know the danger of anti-psychotics for someone with Lewy body dementia – and their possible irreversible affects – both my sister and I had emphasized to staff that we did not want new medications introduced without our consent. We were assured in an offhand sort of way that we would be notified. But sure enough, the doctor started him on an antipsychotic, which we didn’t find out until some days later. When we registered our dismay with the doctor, he cut the dosage in half and then after another couple of days discontinued it. It’s impossible to know if Nelson is worse off because of the medication he was given. Putting someone with dementia into new surroundings is difficult, and two moves in two weeks were very hard on him.

I can’t even imagine what this must have been like for Nelson whose capability to understand and remember is so diminished. Did he feel abandoned? If he could have verbalized it, would he have asked what happened to the promise? What happened to, “Where you go I go”?

While visiting Nelson every day, we were also visiting nursing homes throughout the county to find a placement for him after his discharge from the psych ward. We narrowed our choices down to two facilities. One had an available bed in the dementia unit, the other didn’t. That made the choice for us.

We asked to transport him ourselves, and ten days after admission we put him in the car to travel sixty miles to his new home. He was different enough from the Nelson we had taken there, that for the first time my sister did not trust him as she drove with him in the front passenger seat. She asked me to put the seat belt over his left arm. I had a heavy winter scarf and from my place in the back seat wrapped it around him and tied it in the back.

If I could do it over again, I would avoid the psych unit altogether if at all possible. Once he was settled into the new facility, we discovered scabs down the front of his shins. No one ever bothered to tell us what happened.

Now Nelson is in the new “secure” facility. His first two weeks were difficult with episodes of agitation and combativeness. Depakote, a mood stabilizer, has been added to his medications, and he is taking Melatonin to help him sleep. The unit is small and after he managed to exit a few times, the facility beefed up the security of their system, which seems to have helped. We’re hoping the Depakote will also help him be more content.

We started out with a promise to stay together, but now our lives are worlds apart. There is little level ground for togetherness with logic, physical ability, or verbalization. We are together only in the broadest sense of the word. I come into his world for a few hours each week. His words are mostly indistinguishable and can’t give me a window into his thoughts. I write about my thoughts and share them with others. He needs help to do the most basic things. I pay the bills, balance the checkbook, and learn about how to take care of a car. He has paranoias that I can’t imagine. I give him reassurances from my reasonable logic. He doesn’t remember where he is or why he is there. I search for meaning in where he is and why he is there.

Hallucinations frequent his space, intrusions I can’t imagine. I don’t know what it’s like to be unable to tell someone that you are thirsty or that there is a mad dog in the room or that the floor is moving underfoot. I don’t know if he is as tortured in that shaking uncooperative body as I think he must be. I just can’t go there. I can’t walk in those shoes and he can’t walk in mine. This new facility is twenty miles from home, and so now we add physical miles to our separation. Life gave us circumstances that turned out to be bigger than our wedding promise.

I once read about a caregiver who told his spouse that her job was to enjoy life and his was to manage it. I didn’t like that. I was not yet in a place of acceptance of what this disease was going to mean, and it seemed to imply that for me there was no enjoyment. Now I give Nelson a revised message. “We’re retired. Our job is to enjoy ourselves as much as we can.” Maybe I tell him this because Nelson would have a hard time letting me be the “manager.” Or maybe it acknowledges my own need to find enjoyment beyond the managing. “Everything is taken care of,” I often reassure him. Trailer to that is sometimes the thought, “If he only knew.” But he can’t know. It all fosters a brittle togetherness.

The regretful reality is that a great percentage of the time I can’t go where Nelson is and he can’t be where I am. We connect on the basis of our history together and what we’ve shared in it. Our history and the love it fostered is our bond. Somehow with that bond we hold on to each other. But it is a tenuous hold. A promise will not be enough to keep his memory of me alive, and our history together will be gone from him.

I don’t make promises easily these days. And I am less quick to judge those who might break one. When all nuances of reciprocal love have disappeared, and when history and promises are gone from memory, then what?

I don’t know. But I know promises keep me going. Not just the promise I made forty-five years ago so much as the promise of the occasional random responsive touch or smile from the one who through our shared history has become as familiar and comfortable to me as an old pair of shoes. A few weeks ago while walking down the nursing home hall, he put his arm around my waist. The moment was one of sweet comfort. I can’t discard the hope of that comfort and connection. I can’t discard those old shoes. I just can’t, promise or no promise.

© 2011 Ginnie Horst Burkholder

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