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.
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.”
Today had a nice start to it. After going for a coffee at Mom’s I returned to Dennis and started our morning routine. I usually ask whether he wants to get up in the recliner, even though I make the choice myself. I think it’s good for him to be more upright for a while, and also gives me a chance to change the bed linens if they need it. Today he said “yes”, and it was because he wanted coffee. Coffee is the only drink he gets, other than mouthwash and water, and it evidently is tied emotionally to normal life in a very important way. He asks for it often, even though it only amounts to five or six spoonful before he is tired.
As we sipped our coffee I told him it was my birthday and invited him to say the greeting to me. He said it clearly and I was thrilled!
“Happy birthday.”
“Oh! You are really talking good this morning!”
A surprised look, as if I would ever think otherwise.
“So, since it’s my birthday, what month is it?”
“April”
“and what date in April is it?”
After a long pause which I thought might not ever end, “Eighth”
Again I was amazed at what he can dredge up out of the usual garbled and confused jumble that his mind has become.
Unfortunately these times are happening less and less. Dennis often has episodes of anxious behavior. Loud, rapid breathing, agitated hand and foot movements, and some loud vocalization’s occur even though his eyes are open and he seems awake. He hands me imaginary somethings and asks me to put them in the box. He joins in a conversation when the other caregiver and I are talking and I assume it’s something relevant to what we’re doing, but no. He wants to know if I’ve cooked salmon, or if I’m ready for the representative from Rhode Island to visit us (what?!). And it’s often the dog that told him to say that – the dog we don’t have but he sees right there in front of us.
A couple of nights I’ve treated this confusion with a sleep medicine, but I have to wonder if he’s more confused after he wakes up. He’s also having signs of pain, which he mostly denies feeling. He calls out loudly and pulls his legs up. Today, after one loud outburst, I asked him if he felt pain and he finally said yes. I asked him where the pain was and he said “my heart”. This is new. I’m not sure how accurate his evaluation is. but it is significant if only because he is usually denying any pain.
I’m getting very tired. Daytime naps are now a must.
I wake up suddenly. It is1:00 a.m., but it’s not very often he actually attempts to call my name and I can’t wait to hear what is happening.
“My pillow.” (said in his soft thick tongued voice which sounds almost like an accent. He never used to sound like this.)
“Oh, your pillow is on the floor! You lost it. Is that better?” (after arranging his head on the pillow again).
“I’m hungry”, he says, as he reaches for my hand.
“Oh no, and I’ve already given you extra before bedtime. I can give you some water though, and maybe a little “food” with it, in the tube.”
I warm up the water and take the leftover formula out of the fridge, load the bag and prime the tube, hook him up and start the drip. He wants to talk more.
“Are you happy?” (Something he’s never asked before).
“No, not really. I’m sad that you’re sick.”
“I’m not sick.”
“It seems like you are, but are you happy?”
“Yes, and I want a cup of coffee. Can you make a cup of coffee?”
“We don’t usually drink coffee in the middle of the night, when we want to sleep.”
“It would make me very happy if you would make me a cup of coffee.”
I can’t believe he’s asking this in such a sweet, almost begging manner. Of course I will make him some coffee. I do the Keurig thing and take it over to him. He has a spoonful.
“You can take a sip” he says.
“I’m going back to bed when we’re done so I’m not going to have more. I took a sip just to make sure it wasn’t too hot for you.”
“I called you here to see if you could make sandwiches for the men.”
This is an odd twist and I’m not sure where it’s going… “what men?”
“The men out on the street. I thought maybe you had sandwiches in the freezer and we could give them some.”
I remind him that he called me to get his pillow, and because he was hungry, but he remembers none of that. After I tell him again about the stroke and how his body doesn’t obey his brain anymore, he tells me I’m exaggerating. I count the months since he’s been unable to walk, or eat or do anything for himself. He stops talking and I ask him why – it’s because I’m arguing with him.
Asleep again.
I can tell the feeding is making him sleepy. He says his stomach feels better. I tell him that it was nice of him to think of hungry men on the street and want to feed them. He had about four tablespoons of coffee during our conversation, so I put the rest away, cover him, and turn out the light.
Conversations with the husband are rare these days. He often talks at length, unaware that his speech is unintelligible. Most of the time his control of speech muscles is minimal, but there are those exceptional times of clarity. It is then that I get a glimpse of what his mental status is.
Today I went over to him because he seemed to be restless, and I thought a little re-orientation would be helpful to calm him. We talked about his memory and who he remembered. I asked him if he knew who I was. He did.
“You’re my wife.”
“Well, I have two rings on my finger. One of them is yours.”
“How many rings have you got on?”
“I have two rings on my finger. You see this?” (holding up my hand)
“Yeah, I see that as four fingers.”
“Yep, and see the rings on that finger?”
“Yeah.”
“One of them is my wedding ring and the other one is yours. One of them is the diamond that you got for me, and the other is your wedding ring that they took off you at the hospital. They were afraid your hands would swell up and it would be too tight.”
“And what ring of mine are you wearing?”
“Your wedding ring.”
“Oh yeah. (pause) Are you married to me now?”
“Yeah, don’t you remember we got married?”
“No.”
“Well, how did I get to be your wife if we didn’t get married?”
(thinking hard) “Yeah.”
That was only one of the interesting exchanges today. Earlier he told me that another me came in the room from his left and joined into the me standing at the bedside, and I was transformed into someone even more me. I’m wondering if this isn’t the beginning of Capgras syndrome, which I’ve heard so much about with Lewy Body dementia. If only the other me’s were able to help out a little more, maybe I could get some rest. Wishful thinking…
Staring out the window at the snowstorm after our conversation.
Hope in the Face of Dementia 