August 30, 2018
It was music therapy time once again, and we were slowly meandering around the courtyard, hand in hand, he with the headphones and I with the ear buds. He stopped, turned, and looked at me. I smiled up at him, our faces close together. His face lit up with a mix of recognition and excitement and tenderness, briefly, his beautiful eyes clear and looking right into mine, "You're the one! The one...," and his gaze drifted as his words faded away.
What was he going to say before he forgot what he was saying? I tried to fill in the blanks: Am I simply the one who comes to see him, holds his hand, and spends time with him? The one who smiles and laughs and sings and dances? Or am I "the one" who spent a lifetime at his side, loving him and supporting him through thick and thin? The one who's lost without him and whose heart longs for him? The one who's so encouraged whenever there's any connection at all? The one who means more to him than anyone else in the world? The one he loves? That one? Me?
Generally speaking, I assume that he knows who I am at least some of the time. But on this occasion, I didn't have to assume anything. I knew. I knew that he knew me, even if was for a brief moment.
And as I sit here telling you about it, my heart leaps once again. The fact that he was able to string meaningful, relevant words together is in and of itself a minor miracle. But the fact that they were these particular words of recognition took my breath away and made my spirit soar.
Even at this late stage of Alzheimer's, we are continuing to make memories. I am, anyhow. Each one of these special moments is a gift for me to treasure. He knew me. And I'm "the one."
Tuesday, September 11, 2018
UC Davis ADNI Update
September 11, 2018
Today was the scheduled update survey for the ADNI study that we've been participating in pretty much since diagnosis. At first, the survey was done more regularly and in person with both of us in attendance, then it transitioned to longer intervals, then it became a phone interview.
First, the psychologist called to ask a lot of questions having to do with my husband's state of mind, moods, behaviors, and so on. I found it interesting that most of them would have been really relevant last year or the year before or even the year before that. But he seems to be past most of the issues she was bringing up at this point. It's sobering. Still, I think my responses were helpful, at least. She also asked questions about my well being, which I appreciated. It's important to track the patient, but it's also important to track how the patient's illness is affecting the caregiver.
Then, the research assistant called with the actual survey questions which, in my current state of mind, were laugh out loud hilarious to me: Is your husband having trouble with his memory? Compared to 10 years ago, how is he at writing checks and balancing the checkbook? Can he remember a short shopping list? Can he remember a conversation a couple of days after having it? How is his driving? Is he able to read a map and find his way to a new destination? How is he at planning a project, preparing for it, and executing it? Regarding household chores, is he able to vacuum, do laundry, fold clothes? Lady, he can't put his shoes on or dress himself!
There was a lot more, but I'm sure you get the picture. These are the same questions that are asked every couple of years, and I think what they are doing is updating their database to track the course of the disease. I understand that. The only way they can track things is by recording your answer to the same survey questions over and over; however, it seems as though they could add a new component that would clarify the end stage time frame for their study, since the questions they're asking only highlight the dramatic difference between then and now. But what do I know? Maybe this survey is actually doing that, somehow.
Then. And now. Wow. Did I say the difference is dramatic? It's more than dramatic. It's breathtaking. Heart stopping. So, yes, this survey is actually doing that, somehow. For me, anyway.
Today was the scheduled update survey for the ADNI study that we've been participating in pretty much since diagnosis. At first, the survey was done more regularly and in person with both of us in attendance, then it transitioned to longer intervals, then it became a phone interview.
First, the psychologist called to ask a lot of questions having to do with my husband's state of mind, moods, behaviors, and so on. I found it interesting that most of them would have been really relevant last year or the year before or even the year before that. But he seems to be past most of the issues she was bringing up at this point. It's sobering. Still, I think my responses were helpful, at least. She also asked questions about my well being, which I appreciated. It's important to track the patient, but it's also important to track how the patient's illness is affecting the caregiver.
Then, the research assistant called with the actual survey questions which, in my current state of mind, were laugh out loud hilarious to me: Is your husband having trouble with his memory? Compared to 10 years ago, how is he at writing checks and balancing the checkbook? Can he remember a short shopping list? Can he remember a conversation a couple of days after having it? How is his driving? Is he able to read a map and find his way to a new destination? How is he at planning a project, preparing for it, and executing it? Regarding household chores, is he able to vacuum, do laundry, fold clothes? Lady, he can't put his shoes on or dress himself!
There was a lot more, but I'm sure you get the picture. These are the same questions that are asked every couple of years, and I think what they are doing is updating their database to track the course of the disease. I understand that. The only way they can track things is by recording your answer to the same survey questions over and over; however, it seems as though they could add a new component that would clarify the end stage time frame for their study, since the questions they're asking only highlight the dramatic difference between then and now. But what do I know? Maybe this survey is actually doing that, somehow.
Then. And now. Wow. Did I say the difference is dramatic? It's more than dramatic. It's breathtaking. Heart stopping. So, yes, this survey is actually doing that, somehow. For me, anyway.
Monday, September 10, 2018
Alone
It hit me hard this weekend, as I wandered aimlessly and procrastinated halfheartedly, accomplishing nothing under a sad, dark cloud of impending doom, that there's a really good chance that soon -- maybe not next year or the year after, but soon -- I'm going to be alone, partnerless, adrift in a sea of grief, bobbing up and down as wave after wave knocks me about mercilessly. Permanently.
And what troubles me about this is not that I'm going to be getting older and older, but that I'm going to be getting older and older by myself instead of with my man to hold my hand and look into my eyes and tell me everything is going to be okay. My mom once told me that what she missed most as a widow was hugs from her husband. I think I understand that now, because you can get hugs all day long, but those aren't the same as one hug from the one you love.
I'm going to spend the rest of my mortal life navigating stormy waters on my own instead of with my man to share thoughts and ideas with, to make plans with, to solve problems with. Family and close friends will of course be there for me, and that's wonderful and helpful and encouraging and good, but they're busy with their own lives. Though they will do their best to fill the chasm, it won't be the same as two people working together as one, reaching decisions about the future together as one, and moving forward with life together as one.
Couples won't invite me to do things with them any more. Actually, they already don't. In social circles, I am and will be the square peg in the corner, that awkward reminder of what awaits every couple, sooner or later. Nobody wants that around!
No. I'll be alone. All alone. Probably.
I'm reminded of that Brenda Lee song, "All Alone Am I": "All alone am I ever since your goodbye. All alone, with just the beat of my heart. People all around, but I don't hear a sound. Just the lonely beating of my heart."
That's how I felt today as I walked along the waterfront. It used to be a favorite pastime, walking for a while, sitting on one of the park benches to eat a cupcake or take a picture, meandering to a coffee shop or back to the car; now it's just a reminder. Tick tock. Tick tock.
But God! God is a husband to the husbandless and a father to the fatherless. He will sustain me, guide me, comfort me. He will look out for me. He has been, is, and will be my ever present help in time of trouble. He will never leave me, nor will he ever forsake me. He is my refuge, my strength. He is faithful. He keeps His promises. In Him, all things are possible.
You see? Just as I was sinking in the mire of self-pity and despair, He rescued me and reminded me that there's nothing today or tomorrow or the day after can bring that the two of us can't handle. Together. He's got my back. And I am so grateful!
And what troubles me about this is not that I'm going to be getting older and older, but that I'm going to be getting older and older by myself instead of with my man to hold my hand and look into my eyes and tell me everything is going to be okay. My mom once told me that what she missed most as a widow was hugs from her husband. I think I understand that now, because you can get hugs all day long, but those aren't the same as one hug from the one you love.
I'm going to spend the rest of my mortal life navigating stormy waters on my own instead of with my man to share thoughts and ideas with, to make plans with, to solve problems with. Family and close friends will of course be there for me, and that's wonderful and helpful and encouraging and good, but they're busy with their own lives. Though they will do their best to fill the chasm, it won't be the same as two people working together as one, reaching decisions about the future together as one, and moving forward with life together as one.
Couples won't invite me to do things with them any more. Actually, they already don't. In social circles, I am and will be the square peg in the corner, that awkward reminder of what awaits every couple, sooner or later. Nobody wants that around!
No. I'll be alone. All alone. Probably.
I'm reminded of that Brenda Lee song, "All Alone Am I": "All alone am I ever since your goodbye. All alone, with just the beat of my heart. People all around, but I don't hear a sound. Just the lonely beating of my heart."
That's how I felt today as I walked along the waterfront. It used to be a favorite pastime, walking for a while, sitting on one of the park benches to eat a cupcake or take a picture, meandering to a coffee shop or back to the car; now it's just a reminder. Tick tock. Tick tock.
But God! God is a husband to the husbandless and a father to the fatherless. He will sustain me, guide me, comfort me. He will look out for me. He has been, is, and will be my ever present help in time of trouble. He will never leave me, nor will he ever forsake me. He is my refuge, my strength. He is faithful. He keeps His promises. In Him, all things are possible.
You see? Just as I was sinking in the mire of self-pity and despair, He rescued me and reminded me that there's nothing today or tomorrow or the day after can bring that the two of us can't handle. Together. He's got my back. And I am so grateful!
Sunday, September 9, 2018
Suicide Watch
One of the things my husband's doctors asked me to watch for in the beginning was signs of severe depression or despair. Self-harm is a very real possibility with Alzheimer's (and probably with other terminal illnesses, too). There's really no hope for recovery from Alzheimer's (yet), so it isn't hard to imagine a person wanting to avoid taking his or her family down this long, bumpy, one-way road. It also isn't hard to imagine a caregiver wanting to end his or her own ordeal. Trust me on that one!
No doubt, doctors have more than a little experience with despair in their patients who have been diagnosed with horrible diseases. So they wanted me to have a conversation with my husband, probably assuming he would be more likely to share any deep emotions with me than with them. Not quite knowing how to broach the subject, I just blurted it out one day, a long time ago. He didn't seem particularly morose to me, but I wanted to give him a chance to talk to me if he needed to. The conversation went something like this:
"Harry, do you ever feel depressed or hopeless or anything like that?" I stammered and stumbled. I have a tendency to get "foot-in-mouth disease" when I don't quite know what to say and the subject is uncomfortable.
"No," he responded, "Why?"
"Well, the doctors said it isn't unusual for people with Alzheimer's to be depressed about it, and some people think about hurting themselves. The doctors thought it would be a good idea for me to talk to you about that."
"Okay."
"So, I want to make sure you know that it's okay for you to talk to me about anything that's bothering you."
"Okay."
"I want to know that if you ever thought of hurting yourself, you would know that you can talk to me about it. I don't want you to hurt yourself. I'm here for you."
"Hurt myself?!" It was as though he suddenly realized what the conversation was about, and he was startled and incredulous. "Why would I hurt myself? I would NEVER do that. I want to live!"
"I want to live" is a sentiment he expressed on more than one occasion after being diagnosed. Perhaps part of the reason for his outlook was that he eagerly volunteered early on to take part in research studies at U. C. Davis. It was something that he and I did together (and continue to do) as a team, and it gave purpose and meaning (albeit altruistic) and hope to life with Alzheimer's.
He seemed to enjoy telling people that he was a "guinea pig," even though he wasn't in any drug studies. We anticipated, of course, that his participation in ADNI and other research would help others down the road. And we also hoped we would learn of a promising study that would end up being a cure. That hasn't happened. Yet. Even if it did, it would probably be too late to help him at this point. It's hard to imagine anything short of a major creative miracle restoring all that has been stolen by this disease.
I don't mean to imply that participation in research, going to counseling, having interventions, being blessed with a happy-clappy caregiver, or a myriad of other things would prevent someone's untimely death by his or her hand. We all know better. I'm sure there are plenty of folks who have attempted suicide in spite of having tried everything. But I'm awfully glad my husband wasn't one of them, because while this journey has been and continues to be difficult, there have been many tender moments along the way for us to share. And they are still happening, even now. It seems strange to say so, but it's true. Life may be hard, but it's worth living. Don't give up.
For more information about dementia and suicide, there are many articles available on the internet. Here's one that's easy to understand, lists risk factors, and gives suggestions about how to respond when someone with dementia talks about suicide.
National Suicide Prevention Lifeline (free, confidential, available 24/7). Don't suffer in silence. Please reach out. Call 1-800-273-8255.
No doubt, doctors have more than a little experience with despair in their patients who have been diagnosed with horrible diseases. So they wanted me to have a conversation with my husband, probably assuming he would be more likely to share any deep emotions with me than with them. Not quite knowing how to broach the subject, I just blurted it out one day, a long time ago. He didn't seem particularly morose to me, but I wanted to give him a chance to talk to me if he needed to. The conversation went something like this:
"Harry, do you ever feel depressed or hopeless or anything like that?" I stammered and stumbled. I have a tendency to get "foot-in-mouth disease" when I don't quite know what to say and the subject is uncomfortable.
"No," he responded, "Why?"
"Well, the doctors said it isn't unusual for people with Alzheimer's to be depressed about it, and some people think about hurting themselves. The doctors thought it would be a good idea for me to talk to you about that."
"Okay."
"So, I want to make sure you know that it's okay for you to talk to me about anything that's bothering you."
"Okay."
"I want to know that if you ever thought of hurting yourself, you would know that you can talk to me about it. I don't want you to hurt yourself. I'm here for you."
"Hurt myself?!" It was as though he suddenly realized what the conversation was about, and he was startled and incredulous. "Why would I hurt myself? I would NEVER do that. I want to live!"
"I want to live" is a sentiment he expressed on more than one occasion after being diagnosed. Perhaps part of the reason for his outlook was that he eagerly volunteered early on to take part in research studies at U. C. Davis. It was something that he and I did together (and continue to do) as a team, and it gave purpose and meaning (albeit altruistic) and hope to life with Alzheimer's.
He seemed to enjoy telling people that he was a "guinea pig," even though he wasn't in any drug studies. We anticipated, of course, that his participation in ADNI and other research would help others down the road. And we also hoped we would learn of a promising study that would end up being a cure. That hasn't happened. Yet. Even if it did, it would probably be too late to help him at this point. It's hard to imagine anything short of a major creative miracle restoring all that has been stolen by this disease.
I don't mean to imply that participation in research, going to counseling, having interventions, being blessed with a happy-clappy caregiver, or a myriad of other things would prevent someone's untimely death by his or her hand. We all know better. I'm sure there are plenty of folks who have attempted suicide in spite of having tried everything. But I'm awfully glad my husband wasn't one of them, because while this journey has been and continues to be difficult, there have been many tender moments along the way for us to share. And they are still happening, even now. It seems strange to say so, but it's true. Life may be hard, but it's worth living. Don't give up.
For more information about dementia and suicide, there are many articles available on the internet. Here's one that's easy to understand, lists risk factors, and gives suggestions about how to respond when someone with dementia talks about suicide.
National Suicide Prevention Lifeline (free, confidential, available 24/7). Don't suffer in silence. Please reach out. Call 1-800-273-8255.
Thursday, September 6, 2018
A Penny for Your Thoughts
 |
| Alrighty, then. |
Seriously, though, what do I think goes through his mind? That is actually a great question, and I wish I could answer it. Can we know what someone is thinking without the benefit of input from that person? We watch what a person does or listen to what a person says, and then we make assumptions about thoughts based on those actions or words or our past experiences with the person.
 |
| Wearing his pj's under his street clothes. August 2017 |
He holds my hand tightly and smiles at me and gazes at me intently. But I wish he could talk to me. I would love to have a meaningful conversation with him. Is he in pain? Is he often frightened and confused, or is he now simply living in the moment without a clue of the past or a hint of the future? I don't know, but at least I don't have any reason to think he is living in a state of fear. I hope not, anyway.
He seems less anxious and more at peace these days, except when he is being bathed or changed (he must think he is being attacked and is trying to protect himself, then promptly seems to forget all about it when the ordeal is over). He is "at home" in a place where folks understand about Alzheimer's behavior and how to handle it. It's the next best thing to having him here with me. I did the best I could for as long as I could and probably longer than I should have, and I am starting to be able to accept that others can take better care of him now than I would be able to.
It makes me feel good to know that, so far, he seems to be in the right place for him. It also makes me very sad for both of us. This is not what retirement was supposed to look like.
This blog is about our journey, not anyone else's. If there's something you're wondering about as you read my entries, please do ask questions. Part of the reason I'm journaling our journey is to increase awareness and understanding of Alzheimer's.
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