Hi. I guess if you’re reading here, it’s because dementia is touching your life in some way. I want to share something with you that has recently been very freeing for me.
Be decisive. The ability to make a decision is a power that you still have. The feelings that you have about being helpless and hopeless – those feelings are lies. Take your power in hand and make a decision today. It can be as simple as deciding to rest, deciding to do something you enjoy, deciding to smile at someone when you don’t feel like it.
Decide to be in the moment and look around the space you are in right now. Focus on something in that space that brings you happiness. Let gratitude for that thing/person overwhelm you and be your reward. And, by the way, being grateful is good for you. It can heal.
Let me know about your decision. I am praying for you.
There are so many memories of Dennis that my daughters and I talk about when we are together. We are all working our way through accepting his absence, realizing how permanent it is.
This week Esther had an assignment in a writing class, in which she produced a video to go along with a poem. She chose the poem “No Baptism” by Olivia Gatwood, which describes scenes from her childhood. Her video was a literal kaleidoscope of scenes from her childhood, focusing on her dad, Dennis. It was beautiful, a “sweet, sad, special little thing” to her, and to Julia and I as well.
Julia, in her new role of mother of an infant, has multiple opportunities to look back and review the parenting she received. It has brought a new understanding of the fathering Dennis gave her, some of it bittersweet. That’s okay. She wishes he could have had the pleasure of know his granddaughter.
For me, my criticisms of him have grown distant. My appreciation of him has solidified. In his honor, I often turn out unneeded lights and think of him as I do it.
How strange that life has gone on, and yet, what else could it do?
I mistakenly referenced a poem with the same name but different author. That has been corrected.
This is Sunday, January 14th 2024. This morning I saw a text from my mother on my phone. It read “I’m remembering that amazing winter day 51 years ago when Shirley and Dennis had their wedding.”
His wedding band (mine now), the diamond he picked out by himself for me
I was stunned that I had not remembered it. Can I so easily have put that behind me? I had not said today’s date, or written it, or looked at a calendar – but even that might not have made a difference. I haven’t thought about it in the preceding week when I was more aware of how fast January was progressing.
My present life is so all absorbing that I don’t think about much except how I will conduct myself in the next hour or two. I suppose in some ways that is good, but right now it seems sad to me.
Was it pure chance that this week I had the first dream about Dennis that I can remember having since he died? Even in thinking of the dream for the past two days, it did not occur to me to think of our anniversary. It’s as if his death has so released me to be in the busy world of the living, that I have forgotten to think of the blessing of our life together.
In the dream, I was investigating an old abandoned building, such as ones that were on my grandfather’s farm. It was empty and cold. In a corner, on the hard floor, Dennis was lying quietly. When I approached he said that he had been calling for someone, anyone, to turn on a light so he could see. He was like he had been in the last days of life, totally disabled and helpless. I was greatly troubled, because I could not believe he was there alone. Why did I not know that he had no one with him? Hadn’t he died? Was I supposed to still be caring for him? I helped him to a vehicle, in that odd way that dreams make possible, lifting him myself and sliding him into the back of a truck.
It’s not that I don’t remember Dennis. I read something just this morning that reminded me of him. In a wonderful book on Prayer, Richard J. Foster writes about the “prayer of quiet”.
“… we experience an inward attentiveness to divine motions. At the center of our being we are hushed. The experience is more profound than mere silence or lack of words. There is stillness, to be sure, but it is a listening stillness. We feel more alive, more active, than we ever do when our minds are askew with muchness and manyness.”
Dennis, always a man of many words, was brought to silence and he submitted to something that left him so peaceful, so accepting. There was no way to know what was in his conscious mind, but I often felt God’s presence when I was caring for him. Maybe he was experiencing that kind of quiet, contemplative prayer, without words. That’s what I like to think.
The Bible says that there is no marriage in heaven. It says that covenants, like marriage, end when one of the parties dies. I am no longer married, and maybe the acceptance of that is why I am not searching for feelings about our anniversary. Maybe that’s why I didn’t even think about it today, until I was reminded.
Or maybe it is fitting that this anniversary be like many of our anniversaries when we failed to plan a celebration of any kind. It has a comforting familiarity. Maybe it’s just me, being like we always were, and that is okay. I believe I will see Dennis again. We won’t be married but I will be glad to see him. I will remember that I loved him.
Today I got this sweet reminder of a 3,800 mile trip that I took with this guy. It wasn’t an easy trip, but I can say that my memories of it now are so good. I’m missing him today. Dennis with that relaxed, little smile he so often had. Dennis with a gazelle growing out behind his ear. Dennis wearing the ring that is now on my hand instead of his.
We had such an interesting time at that small motel/campground on the Clark Fork River. He found it so outrageous that he could have walked out the back door of our room and fallen right in the river, it was so close. He was disabled, I was somewhat stressed, but we had fun. The photos bring it all back.
We have such a wealth of photos too. I just deleted a dozen because I couldn’t figure out why I had taken them, then I remembered. I was photographing smoke from wildfires that nearly obscured the road on the way out to Seattle. No wonder I couldn’t figure it out.
I remembered the husband today in church as well. A kind lady asked about him and told me she had been praying for us, not knowing that he had died. I cried a little. I think she did too.
I examine this photo and it seems impossible that he can seem so real and close, and yet be so gone. That is the mystery of life and death on planet Earth. The things we can see with our eyes change, usually in the direction toward ceasing to exist. I am happy to remember the promises of God that a spiritual world is also in existence and that it is headed in the opposite direction. I am glad we are spiritual. I even think it is the spirit that I sense in others that makes them special to me. It’s often the thing about them that I like the most.
Thanks Google, for making me remember this picture today. I remember the husband’s spirit that always attracted me to him. And this trip. It was a good one.
I spent the week after the husband’s death thinking about his memorial service. I was afraid that if I didn’t have something right away, the pace of life would accelerate and make it harder to return to that needed task. I needed whatever measure of closure a service could provide.
The church was available June 30. We were penciled in for a 1:00 pm slot and the planning began. And that is how it has to be done – I picked a time convenient for my purposes and then found out who could be there and who couldn’t. It’s very hard to find a time that’s good for everyone.
I was surprised, as the word spread, that many friends and relatives were making time in their busy lives to come. Since Dennis had been disabled, at best, for the last five years we had been in Hayward, I was concerned that our gathering would be small. Not many knew him well. I wanted to make sure that those who did come would know him better when they left.
I knew that one important person would probably not be there – daughter Julia, who was due to have her first child 20 days later. It would not be in their best interest to make that trip from North Carolina to Wisconsin. We planned the service to be shared live online, since our church had that capability. It was a good choice since nearly as many watched online as were present in person.
Family began to gather the weekend prior to the service. In between fixing meals and visiting, ideas were presented, volunteers were conscripted, and plans fell into place. Every time I wondered how to do something, the answer came to light shortly afterward. I did not worry. I enjoyed the planning, and I was greatly blessed by the service. It was what I needed, and I think others found it meaningful as well.
One of the striking moments of the service came at the end. A recording of one of Dennis’s favorite songs was played, followed by an audio clip that he left on daughter Esther’s phone. Hearing him speak that message to her was like hearing him speak from the other side of death. It was joyful and full of hope, and that is how Dennis should be remembered. And I expect that now his joy is even more real, and all his hopes have been realized.
Many who heard the song have asked to hear it again. This is the link to click for the song “Slow Down” by Chuck Girard
Dennis, the husband, died early this morning. The bad thing, the difficult, uncomfortable, discouraging, sad thing is over and the good that was promised him is beginning. That’s the story that both of us have believed and we’re very happy to stick with it. A new beginning for him, made possible by Jesus Christ.
I love it that God did not want for any of his creation to be wasted. I love that he always planned a way for the imperfect to become perfect, and that the way had to be through relationship. It’s a precious thing to feel known, valued, and loved even when I haven’t earned it. Even more important, nothing on earth can take away or change what God has in mind for me. I love having the worldview of the one who made the world.
It’s a new beginning for me as well. I am a widow. A single. I’ve had 50 years of being otherwise, and I’m grateful for those years, and for being able to spend them with Dennis. There’s a lot to process here and I might not get around to doing that online. This post is a thank you to all who have followed our journey with Lewy Body Dementia. We learned a lot along the way. I will always have compassion for others who are experiencing this disease in any manner. Caregivers, feel free to reach out for support. I am on your side!
That is the question most often in my mind as I watch the husband. He lies in his bed looking peaceful, but his breathing takes off at times and his eyes open wide. I wonder if he is actually seeing something other than the ceiling when his eyes are open.
He doesn’t seem to be in pain. I wonder, if death doesn’t come with pain, what does it come with? How does it feel to the person dying? Sometimes he makes sounds that could indicate pain and that sound like pain signals to me, but then they cease without any treatment. I remember the vivid dreams he often had that would make him shout and cry out (and punch and kick!) Is that what’s happening as his mind lets go. Does he have real memories? Do his dreams mirror reality or are they even more frightening?
My intuition tells me the end is very close. Close enough so that I am hesitant to leave, even for a short while. I want him to feel like there is someone with him as long as he’s here. I know he doesn’t always know who is with him, but he does act more calm when he’s not alone. He knows someone is there.
I have mixed feelings about friends and family who ask if they should come, and that’s actually a good thing. The ones who come because they can, or need to for their own reasons, they are welcome and help me feel supported. The ones who can’t come, no matter what the reason, are also helping. I am glad they are preserving memories of the husband that are far more dignified, heartwarming, and joyful than the memories I am making now. I’m okay not having everyone seeing him go through this.
If I could see his spirit I’m sure this experience would be different. Unfortunately, what I see is his body, the damaged shell his spirit has to reside in. There is nothing pleasant or easy about watching someone die. In my career as a nurse, I’ve seen death fairly often. I suppose that helps me some now – at least I am not surprised. But each death is unique, and I’ve never seen my husband die.
At night, I most often pull the recliner up next to his bed, so I can take his hand when he seems to be agitated. I’ve gotten used to the signs that mean he needs to change position. I sleep with the sound of his breathing in my ears, either loud and wet or so quiet and shallow that I need to look. Breath and life are so closely allied that the physical action of drawing in air takes in a sacredness. I wonder which one will be his last.
I wonder, I wonder, I wonder… I wonder if he is trying to let go, or struggling not to. I wonder if he’s even aware that it is time.
There has come a time when we feel we have done all we needed to do, all we could do. There is only the hard waiting left. That’s how it is now.
Dennis has shown more signs of discomfort and some frustration, even when he can’t explain to us what he is feeling. Sleeping all day, and then sleeping all night, or trying to. Never being sure of what he’s seeing because nothing looks familiar. Not being sure whether his eyes are open or shut because either way things look crazy. No matter how carefully people move his body, he’s left feeling “like a piece of meat”. Being concerned about the meeting he was supposed to have with a client, and then being told that he is retired and doesn’t have to worry about work at all.
I can tell he is feeling puzzled when he gets that small wrinkle between his eyes and he stares at the ceiling, trying to figure things out. When asked how he’s doing, he most often answers that he is okay. Now, he has managed to tell me a few times that he is not doing so well.
He listens more than talks.
He stays alert for 10 minutes (max) and then has to sleep.
He still thinks about food, but says he is not really hungry.
His reflexes are diminishing, the usual rigidity is softening.
I don’t think he will be here much longer. I will miss him, but I will not miss his suffering. I don’t think he will miss it either.
This was written a couple weeks ago, so it’s more accurate to title it “Where We Were”, but I’m not changing it.
It’s spring. Dennis and I are sitting in the living room. I am trying to feed him sips of coffee. He coughs and chokes each time he swallows. He wants to know where Shirley is, his wife. I’m not sure I’ve convinced him that I’m here. In a voice so soft I can barely catch every other word, he says he has had something he wanted to tell Shirley but she wasn’t here. Where did she go?
He says that he got a call from someone telling him that everyone should read the book he’s written. It’s a book about blood pressure. He wants to know if my mom has read it. While he talks he is always staring up at the ceiling as if he’s connecting with something up there, or in another world.
Yesterday’s conversation was my attempt to talk with him about death. I asked him if he was afraid to die. There are many questions I ask him that he takes the liberty of not answering – this was one of them. I explained that I was asking because I wanted to remind him there was nothing to fear. Death would be a good change because of what we believed about Jesus’s promises. I told him God would probably be in favor of him playing the trumpet again, give him back his ombissure. He would likely be able to walk again, swallow and eat again, and maybe even be with “his dog, Blackie”. He would be able to ask all the questions he ever wanted answered. I could tell it sounded good to him and he repeated some of it with as much excitement as I’ve seen from him lately. Then he went to sleep for the rest of the morning.
And he is sleeping again now. It is his default state, to be off in another world where none of these weird things are happening. He rouses only to inquire about new voices he hears in the room – some of them are real, some are in his head only.
I have been reading a book about another man who had Lewy Body Dementia, written by his wife caregiver. There are so many similarities. That man did not know he had that diagnosis until after he had a stroke. Like Dennis, his disease progressed much faster after the stroke. His time at one hospital after another and finally ending up in a nursing home sounded very familiar to me. I remember pushing Dennis around the halls at Maple Ridge, seeing all the elderly lined up in their chairs around the nursing station with vacant expressions on their faces. It was depressing to him then and he didn’t want to look at them, or to be them. The man in the book felt that same way. I am glad Dennis is not in a nursing home now, although I’m sure they try to be as kind as possible. I feel that I’ve been able to protect some of his dignity.
As his imaginary world becomes more entrenched the husband is always asking me where his dog is. He mentions this dog at least once a day, and this morning it wasn’t just a curious inquiry, it was a need.
It was early in the morning and he was being moved and cared for, but it was upsetting to him. The words were quite clear. “I need my dog.” It was repeated with conviction. “Where is he?”
I have gone the route of explaining that we don’t have a dog, but that he has seen a dog in his mind and that’s okay. That doesn’t seem to help lately, so I have begun telling him that the dog is probably outside since it is not in the house. People take their dogs out in the morning – they have to pee. His dog does too. He wants to know if I can see him and I say no. I tell him not to worry because he has told me himself that the dog is very smart.
Eventually he will ask for the cat. I can produce a cat. He will hold Shadow on his lap and feel her and this morning he settled down. I am grateful that she does cozy up to him and sit on his lap quite often. She is little and black, like “the dog”.
The cat will have to do.
My theory has the dog being important for several reasons. The husband needs unconditional love at a time when he knows he is unable to give back. It also comforts him to feel responsible for a creature, to still have purpose. Lastly, I don’t know, maybe he always wanted a dog when he was young and never had one. He has always enjoyed some things about the dogs we have had in our years together, but he didn’t have the need that he does now.
His condition continues to decline. I feel there is less engagement overall. There is more confusion, more resignation. One morning last week I asked him if he was okay as I often do when he’s had a coughing spell or seems upset. “Not really.’ he said. He also has started asking me “Am I confused?” These are new admissions for him.
Lest you think that he does a lot of talking, I am recording here most of the significant conversations, and there aren’t many of them. He doesn’t usually talk when we are working with him. His eyes are closed much of the time. He unfailingly produces a smile when asked. Every now and then something will make him laugh. This morning when I told him the dog was outside “taking a leak”, as he calls it, he laughed and said “We’re doing the same thing together.”
Hope in the Face of Dementia 