Monthly Archives: January 2016

Solvable and Unsolvable Problems in Dementialand and Life

alzheimer's, dementia

If I have a public speaking engagement that ends at 8 pm, my husband Bill knows to expect that I’ll leave the building at 9:30. In the past, he’s ridden along to help with the set-up and technology. He’s usually sitting on a table in the back of the room patiently when I chat with people (mostly caregivers) after my presentation.

When I finish speaking to the group, I usually say I will hang out for a few minutes in case anyone has questions or wants to chat. It’s typical for a several people to approach me. They are almost always too kind.

Recently, a caregiver said my presentation made him think I had to been looking in his windows for the past few months. Strangely, it was one of the nicest compliments I’ve ever received. (Even better than the woman who once came up to me and said, “When I first walked in, I saw the way you looked and thought you wouldn’t know anything about Alzheimer’s. But it turns out that you do.”)

After the compliment comes the question. It’s presented in a form of a story–sometimes a very long story–about their loved one with dementia. They tell me what’s going on, and then there’s a pause. At this pause, I am supposed to jump in with a solution.

Sometimes I present a few potential solutions, but they tell me they’ve already tried those things. Or I give them some options, and they tell me why those options aren’t possibilities. I stand there, wracking my brain to come up with a solution. I feel like a failure when I have nothing to offer. After all, I am a supposed “expert.”. I am disappointed in myself when the best I have is “Gosh. I don’t know.”

My husband, Bill, often silently observes these situations as he waits for me. When we leave, he can tell I’m second-guessing the advice I’ve given people–wishing I could have come up with something better.

Last year, Bill listened to me chat with caregivers about their specific challenges and then said to me, “You know, those people don’t always want you to solve their problems. They just want you to acknowledge it’s hard and they’re doing everything they can.”

As hard as it sometimes is to admit your spouse is right, my spouse was right. Sometimes people just want an “expert” (please note the quotation marks) to acknowledge that they are dealing with a difficult situation. Maybe, just maybe, it’s not my job to find a solution to every problem. Maybe there is not even a solution to find.

In Dementialand, as in life, there are problems that can be solved. A woman once told me that her mom, who had dementia, had stopped using the bathroom at home because she couldn’t find it. The woman was able to find a solution (at least temporarily). She made signs to put all over the house with large arrows to indicate where her mom would find the nearest restroom. It was so simple that she doubted it would work, but it did work. In fact, she eventually went to Office Depot to have professional-looking color signs printed because she decided the ones she made on construction paper were tacky.

Then there are challenges that are not solvable. We must cope with these challenges because there are no solutions. I am often asked how to get someone with dementia to stop asking the same questions over and over again. (It’s somewhat ironic that a question I am asked over and over again is to how stop people from asking questions over and over again.) And I don’t have an answer. All I can do is acknowledge that it is frustrating for even the most patient caregiver to have to answer the same question repeatedly. The best advice I can give you is to take a deep breath and attempt to answer that question in the exact same tone of voice you did five minutes ago.

It’s great when a problem you encounter in life is solvable and the solution is quick, easy, and cheap. Last month, my car wouldn’t start. It was a bit of a crisis because my husband was out of town, so I was stuck with no wheels for a day or so. When we realized the problem was a dead battery and got a new one, the problem was solved. Life was back to normal.

There are other problems in life that aren’t so solvable. For instance, our rat terrier mix, Gus-Gus, isn’t always great with small kids. He rarely meets an adult that he doesn’t want to French kiss, but kids aren’t his jam. After a few years of trying to solve this problem, we realized it’s something we just need to cope with it. We can’t seem to solve this problem without putting kids at risk (and I’m not about to ask to use my friends’ kids as training tools), so Gus-Gus gets a ticket to the bedroom with the door shut when kids visit. We cope.

If you think about it, a lot of problems demand coping skills. A man who is annoyed that his wife who has Alzheimer’s paces around the house all day? There may be no solution for her pacing. He may need to acknowledge it frustrates him and learn to cope with it. A woman who makes a clicking noise with her tongue obsessively all day? Her caregivers may have to find a way to block it out. A man who can’t remember his kids’ names? That’s not a solvable problem. It’s part of the progression of dementia. You gotta cope with it.

We can’t change the course of diseases like Alzheimer’s. As of 2016, Alzheimer’s itself is not solvable. Remember the prayer that asks God for the serenity to accept the things we cannot change? If God made a list of those “things we cannot change,” I would think He might put dementia near the top.

As for those people who want me to give them advice on the challenging aspects of dementia, I’ve found that saying, “Wow…that’s a tough one. It must be pretty frustrating for you” goes a long way.

Sometimes I have to acknowledge that I can’t solve everyone’s problems. Heck…a lot of times I can’t even solve my own. Sometimes that’s because I lack the knowledge, experience, and insight. However, there are other times I can’t solve problems because there really aren’t solutions. When that’s the case, it’s about taking a deep breath and weathering the journey.

Why We Have to Let Go in Life and Dementialand

dementia

 

Letting go is the hardest thing.

And we have to do a lot of it throughout our lives.

We have to let go of things. Old clothes. Furniture. Appliances. Toys. If we didn’t let go of things, we’d all be hoarders. Letting of things isn’t as easy as it sounds, though, because things have meaning. Things remind us of people who are gone and times that have passed. Things remind us of moments, events, and milestones. Sometimes we are scared that getting rid of things means getting rid of memories. It doesn’t, of course, but tell that to someone as they are going through a loved one’s belongings after they’ve passed away. We attach emotionally to items that are tied to people, places, and times that were meaningful. That’s normal, but we can’t physically carry all of these items with us throughout our lives. We literally don’t have room. We have to let go of some of it.

We let go of our dreams. Sometimes, we have to let go of one dream to achieve another. We give up our goals to free up time and energy to seek out new goals. Sure, our parents and teachers told us to be persistent and to try, try, try again, but there’s a time to move on. (Case in point: A friend of mine was telling me about a guy she knows who wanted to be a rapper. This guy–who is now close to 40–still wants to be a rapper. He lives with his parents and waits for his break… Maybe it’s time to let go and pursue a new dream.)

Then we let go of people. Or we try to let go of people, anyway. We have to let go of people when we end romantic relationships. It’s not easy, even if we know the relationship isn’t working. When I was dumped and heartbroken in my early 20’s, my wise sage of a friend Lisa said something that has stuck with me. She told me, “Letting go of the wrong person means you’re one step closer to finding the right one.” I have repeated this to at least a dozen crying female college students in my office over the last nine years. Breaking up isn’t a failure. It’s progress, right?

We have to let go of friendships when they no longer serve us. It doesn’t mean we’re angry or upset. It just means that our time and emotional energy is best spent elsewhere. Looking back, I’ve clung to some close friendships in my life long after I should have let go. My mistake was thinking that if a friend brought something positive to my life at some point, they were meant to be a forever friend. I don’t think that anymore. Forever friends are amazing, but you’re only gonna get a handful–and that’s if you’re lucky. Other friends come and go, and those temporary friendships aren’t failures. You just have to know when to move on.

There’s a lot of letting go in Dementialand. We let go of people when they die, but all stages of dementia involve letting go. People with dementia let go of their jobs. They let go of their driver’s licenses. They let go of the roles and responsibilities that they played throughout their lives. One of my friends told me she had to let go of being a perfectionist when she was diagnosed with Alzheimer’s. Sometimes people with dementia let go gracefully, and sometimes they don’t. I can’t blame them to being angry and for fighting the inevitable. They have every right to be mad at dementia for what it has taken from them. Yet, somehow, they cannot allow that anger to take away what dementia has left behind.

I often use the phrase, “Let go of what was to enjoy what is.”

I usually say it in some overly pleasant, patronizing term, as if it’s easy to do. I usually say it as if it’s something that I do with grace. For the record, I am not good at letting go. It’s hard for me. And I’m not unique in that.

A friend of mine has a mother who is in her 80’s. Although her physical health is impressive for someone in her 80’s, she shows some symptoms of dementia. She has become more self-centered and isolated. She doesn’t want to leave her home, and she struggles to focus on a conversation.

My friend said to me, “I know my mom’s still here, but I have to let go of who she used to be. And I really liked who she was.”

I thought about this statement…It is important for her to let go of who her mom was. Letting go of the person her mom was can allow her to enjoy the person her mom is right now, in this moment. It’s okay to admit that some of her favorite things about her mom are gone. It’s okay to grieve for aspects of the relationship that are no longer possible while enjoying those parts of the relationship that are still possible.

Reminiscing about the past is great, but clinging to it only brings disappointment. People with dementia are not the same as they were ten years ago. To be fair, the rest of us aren’t either. We change. We struggle with our own changes. We struggle with seeing changes in our loved ones.

We struggle to let go of skills and abilities our loved ones used to have. We can’t accept that they can’t tie their shoes. They could do it a month ago. We don’t know why they can’t remember who we are all of the sudden. Maybe it’s because we colored our hair or lost a little bit of weight. We want to think they’ll know who we are next time we stop by. Sometimes we even argue, “Grandma, you know who I am. Think hard. I know you do.”

We struggle to let go of the activities our loved ones used to enjoy. I spoke at a support group over the holidays. A woman in the group told me how she’s finally let go of her husband’s love of going on long car rides out in Iowa farm country. It used to be their Sunday activity. Now, it just makes him anxious. He asks where they are, where they are going, when dinner is, when they will be home. After a couple months of this, she let it go. She wishes she’d let it go sooner, but she just couldn’t. He really used to love those Sunday drives.

In my experience, caregivers struggle to let go of control. You have to let go of the notion that you have any control over a disease like Alzheimer’s. You know what happens if you make all the right decisions regarding your loved one with Alzheimer’s? The Alzheimer’s gets worse. Sure, you can have an impact on quality of life, but you cannot stop the progress of the disease. Although this sounds like a negative statement, I find that many dementia caregivers find comfort in knowing that decline is not a result of any of their actions or lack of actions. I know one caregiver who repeats the phrase “I didn’t cause this, I can’t change it, and I can’t cure it” to herself before bed each night. It’s her way of letting go.

Life is about letting go. Sometimes, unfortunately, we have to let go before we feel the story is really finished. We can’t go back. It doesn’t matter if we want to. It doesn’t matter if the past was better than the present. All we’ve got is the present. Sometimes the present is bittersweet, but–as one of my friends with dementia recently reminded me–there is still sweet in bittersweet, even if sometimes it’s just a little bit of sweet. Otherwise it would just be bitter.