When Dementia Knocks

Why is my loved one with dementia so tired?

Because dementia is exhausting.

We talk about kidney failure. Heart failure. Lung failure. Although it sounds harsh, dementia is brain failure. As the brain becomes more compromised, it takes more and more energy for someone with dementia to complete tasks.

I don’t mean tasks like renovating a room, fixing a car, or making a 12 course meal.

As dementia progresses, a conversation is exhausting. Watching a TV show is tiring. Watching grandkids play, a phone call, or a trip to the grocery story can sap someone’s energy for the entire day.

And here’s the thing about being tired…it doesn’t just mean you have to go lie down. It means you might be irritable or withdrawn. Or perhaps you lose your “filter” and start sayings things you regret.

Y’all know what you act like when you are tired, and it isn’t pretty. We often put people with dementia into situations that are exhausting and don’t give them an exit plan. Then we become frustrated when we don’t like their “behavior.” We think they are being “difficult.” But when we look back…did we set them up for success?

When we think about dementia, we don’t think about fatigue and exhaustion. Families are often surprised when dementia manifests in ways other than memory loss. Because dementia causes memory loss, right?

Sure, it absolutely can. However, memory loss is only piece of dementia. One of the biggest disservices we do to families affected by dementia is to not education them on other symptoms.

I often get questions from families about what is “normal” for someone who has dementia. Is it normal for someone to sleep all day and stay up at night? It is normal for someone to sleep 16 hours a day? Is it normal for someone to have nightmares, restless legs, or sleep walk?

There’s really no normal with dementia. If you know one person with dementia, you know one person with dementia.

Yet, none of these symptoms surprise me. Dementia changes sleep patterns. Some people are more restless in sleep. Some are harder to rouse. And getting a good night’s sleep is so important when a person’s has limited mental energy.

I know a man who changed his own sleep pattern to match his wife’s when her dementia progresses. She seemed to want to sleep from 4 am to noon. He started sleeping 4 am to noon. It’s a great solution…but not everyone is able to make a change like this. He was retired. Caregivers often have kids and jobs.

Sometimes naps work well for people with dementia, and it’s often useful to offer a nap at the same time of day everyday. Again, I understand this doesn’t work for everyone’s schedule. It’s also important, once a nap schedule is established, not to expect the person with dementia to visit or go on an outing during this time. If your loved one usually naps from 2-4 pm, having a visitor during that time and expecting them to converse may not be setting them up for success.

It’s frustrating to me that we are not talking more about dementia and mental energy. It’s frustrating to me that we still focus 90% of our conversations about dementia around memory loss. This harms those who live with dementia because we accuse them of being difficult or causing problems when they are showing a symptom of dementia. You wouldn’t get mad at a cancer patient for coughing, right? We don’t give people with dementia that same grace.

When it comes to energy, I try to set myself up for success. I know I have the most energy in the mid-morning and again in the evening. When I have to do something that requires a lot of focus, I work to schedule that during these times when possible. I often struggle with energy when I am dehydrated. I force myself to drink 100 ounces of water a day (and that’s a battle for me). I am working on sleep hygiene. For years I have slept with the TV on. Now I fall asleep to a “sleep story” from the Calm app. I also started wearing a mouth guard because my dentist claims that that I am grinding my teeth to a pulp as I sleep.

I am able to set myself up for success. Sometimes people with dementia need a little bit of support to do that. (Now that I think about it….a little support helps us all, right?)

Yet, we often fail to provide that support and then become frustrated with the person living with dementia. What can we do in terms of helping people with dementia preserve and use their energy wisely?

1. Offer naps and quiet rest periods during the day.
2. Set up a bedroom environment that promotes restful sleep (no TV, blackout curtains, etc.).
3. Have an exit strategy for social events, family holidays, and obligations. Don’t be afraid to leave church or family Christmas early!
4. Understand that short visits may be ideal. And sitting together quiet is fine.
5. Pick up on early signs of exhaustion— like becoming irritable or withdrawn.
6. When possible, embrace non-traditional sleep patterns and standardize them into a person’s schedule.
7. Identify signs of depleted mental energy as consequences of dementia rather than a person being difficult or giving you a hard time.
8. Share with others that limited energy is part of dementia so that they can support your loved one and help to set them up for success.

The other day my husband and I had a conversation about women who pack their husbands’ suitcases. To each their own, but my husband agreed that he’d never let me (or anyone else, for that matter) pack his suitcase. He thinks I’d forget something. And I probably would.

This conversation reminded me of a story that a man, Don, told me a few years ago. His wife, Heidi, had been a stay-at-home mom, while he worked in sales and travelled for his job quite a bit. Heidi stayed home, took care of the kids, and enjoyed her role supporting her family.

Heidi has since passed away from early-onset Alzheimer’s. When she became unable to stay at home by herself, Don was able to take early retirement. He decided it was his turn to take care of her.

As her disease progressed, she became confused about why Don was around so much. She was used to her space while he was traveling, and she would often panic because she thought Don had mixed up his schedule and should be on the road.

She’d say things like, “What about your trip to Tulsa? Isn’t that tomorrow? Shouldn’t we get you ready to go?”

Don would gently remind her that he had retired and was taking care of her at home now. She’d look disappointed and walk away. Don tried not to take that personally.

One day, Heidi walked into the living room with a suitcase packed. She pushed it toward Don and smiled.

“Have a great trip. Love you,” she said. Don, again, would explain he didn’t travel anymore, so she didn’t need to pack his suitcase.

This happened several times over the next few weeks. Heidi seemed excited and proud as she presented the suitcase to Don. She seemed disappointed when told there was no trip.

Throughout Don’s career, it was Heidi’s job to pack his suitcase. He hadn’t realized it before, but he came to understand that this was a role she enjoyed.

When she packed the suitcase for him, even though there was no trip, she seemed more like herself. It gave her a purpose. She needed to be needed.

Don hated disappointing her by telling her there was no trip. He tried a new strategy.

“Oh, thank you so much!” he’d say. “My trip got changed and I don’t leave until tomorrow, so I’ll just put the suitcase by the back door.”

And he did. Then he hugged her and told her how much he appreciated her.

After she fell asleep, he’d unpack the suitcase. And she’d pack it again the next day.

He noticed, across time, that she often added odd items to the suitcase. Sometimes a Yankee candle. Once in a while cat food. Cleaning supplies. A box of paper clips.

It became a measure of the progress of her disease for Don. For several months, he’d unpack the suitcase and realize that Heidi was no longer able to remember what should go in the suitcase.

But she remembered to pack Don a suitcase. And she continued to do it until she moved to memory care.

A few days before the move, she walked into the living room with a suitcase for Don. She was becoming less able to express herself verbally, so she just put it in front of Don and smiled. Don expressed his appreciation.

That night he unpacked the suitcase. It was empty.

He could’ve been sad, but he wasn’t. He realized that the suitcases were what got him and his wife through the past few months. It gave her a sense of purpose. It gave him an opportunity to appreciate her.

And the empty suitcase made him feel…loved. Heidi was struggling. Don wondered if she remembered her own name. She wasn’t able to recognize her children. She sometimes needed prompting to use the restroom, and she would never eat if he didn’t put food in front of her.

But somehow, despite her failing brain, she was able to bring him a suitcase.

I know a guy who says he will kill himself if he gets dementia.

His dad had it. His mom had it. He says that he refuses to put his family through that. If he starts to have dementia symptoms, he’ll end it.

He knows what end-stage dementia looks like. He knows the pain of having parents who don’t recognize you. He knows how much nursing homes costs.

When he told me of this plan, I wasn’t sure what to say. He thinks that this choice would be generous; it would save his family the emotional and financial struggles of his slow decline. I have nothing brilliant to say when he tells me his plan.

How do you talk to someone who has a well thought-out plan to die by suicide? He’s not speaking on a whim. This isn’t a passing thought. It’s just his plan. He’s not presenting it with a lot of emotion either. He’s very matter-of-fact. It’s almost like he’s telling me about his plans to check out a new coffee shop when it opens.

I know people that have a tremendous quality of life after they start to develop symptoms of dementia. I have friends with dementia who are living fun- and laughter-filled lives. They travel. They go to fabulous restaurants. They go for walks, tell jokes, and watch movies. They do things that bring them joy. They….live. Not just survive. But really live.

I mention this to the guy. He says he knows, but if he waits too long, it’ll be too late. He’ll forget to kill himself. (Yeah, he actually said that.)

There’s an implication here that I am not comfortable with. He is saying a life with dementia isn’t worth living. Maybe, in my mind, I am insulted because I hear him saying that the lives of people with dementia have no worth. Maybe I am somehow taking this personally.

I ask if he’s told his family about his plan. He says he has, and they don’t support him. He thinks that they will understand when the time comes that it’s the right choice.

Is it harder to care for a loved one with dementia or to know they killed themselves so they would not be a burden to you?

He is assuming, of course, that he will be a burden to them. I want to ask if his parents were a burden to him, but I am scared to go there.

Burden is such an awful word, and I use it sparingly. Perhaps because being a burden on someone is one of my biggest fears in life.

If you’ve read the book or watched the movie Still Alice (highly recommended), you might remember that the main character has a plan to die by suicide. She sets up memory tests on her computer, and she tells herself when she can’t pass, it’s time. But she’s waiting too long….she’s unable to understand and execute her own instructions.

Most people with dementia don’t fear death as much as they fear loss of their identity and independence. I’ve read research articles that back this statement (which I can cite upon request) but it’s evident from the conversations I’ve had with friends who live with dementia.

I can’t judge the guy who has a suicide plan. I’m uncomfortable with it, and I don’t know that it will lessen the pain his family will endure if he does have dementia.

But I can’t judge.

Last week I asked those of you with a loved one in a nursing home during the pandemic to respond to a few questions. And you did (thank you!). I planned to write up a summary or assign meaning to your responses. I thought maybe I’d find some themes as I read through them.

Then I realized that this is about you–not about me. I don’t want to assign meaning to your experiences. I see no reason to paraphrase what you’ve told me.

Here is a sampling of responses:

Describe your experiences of having a loved one in nursing home, memory care community, or assisted living during the COVID 19 pandemic?

“I could not visit them. My Mother died in 24-hour care in December of 2020. Fortunately I ignored the staffs direction not to come; I arrived minutes after MOM died.”

“What’s frustrating is seeing people in healthcare not taking the virus seriously. I see nurse aids, nursing students, and nurses going to the bar, and the next day going into the nursing homes and hospitals. If I can’t see my grandma, why should the nurse aid who went to the bar be able to see her? There are so many frustrations in the system during this pandemic. I’m willing to do everything I can to keep her safe, but when will we be able to say that the benefits outweigh the risks? Once we’re both vaccinated, why cant I give my grandma a hug before dementia completely engulfs her? It’s a race against the clock.”

“Wow…it’s been extremely difficult, to say the least. I went from feeding my mom lunch every day and usually spending 3 hours a day with her to not being able to see her at all. She is at the end of a long battle with Alzheimer’s and is completely nonverbal, so connecting with her through a mask or a window or a computer screen is nearly impossible. She was actually the only person in her small facility (two houses of 14 rooms each) because her hospice aide brought it to her, so she had to be even more isolated and alone for another two weeks, which was even more terrible.“

“Mum was so well looked after that she looked better than before the pandemic. Mum understood when we could not come and we called her and kept telling her we loved her and wanted her safe. My mother survived World War 2 and Hitler and she certainly was not going to let a pandemic depress her and it didn’t. I am so proud that she never complained or cried like so many others did during this time. Stoic through living a hard life and being a survivor.“

“My mother-in-law (she’s 90)has Alzheimer’s and is in memory care about 2 miles from us. My husband (he’s 66) has Lewy Body Dementia and he is home with me, where I have been working from home since last March. (He is retired, I am not and have a long way to go on that front.) He has been able to see his Mom twice in-person, but head to toe in PPE. The first visit did not go well, he was too PPE’d up for her to recognize him (plus he’s no longer dying his hair), the second time went much better because the staff person in with him was able to help guide them both and because they used the clear shield face mask instead of the more typical one. But then cases spiked in the area, and things had to be locked down again.”

What has been the most difficult part of caring for a loved one in a facility during the pandemic?

“My marriage vow to comfort in sickness and in health was taken away by the governor’s order that I could not be with him. He cannot be cared for at home.”

“The extra hassles of needing to get COVID tests on a consistent basis in order to visit her. Wearing all of the PPE, and not being able to touch, kiss or hug her very well. The barriers that are in place, are needed, but the distance it has created for our loved ones in LTCH has been devastating.“

“The most difficult thing was for me keeping away from persons, shops or any situation where I could get Covid and walk it into either facility when they could have visitors. I was very conscious of my role as a carer for both people and all 6 of my grandchildren had to have the Flu shot. They had not had this shot ever before. We had no choice if my husband was to see his grandchildren. Christmas was very hard when he was in total lockdown but we could facetime etc. Visiting behind a screen was difficult with mu who was deaf..so I was literally screaming at her the whole 30 minutes. It was a strain on both of us and I decided that these visits could only be weekly.”

“Lack of visitors…I know some of her needs to interact were limited…staff members were overwhelmed.”

“…the hardest part for me has been all of the new staff members that have come and gone during the pandemic. Since we live in a college town, lots of them are students, who are probably way more high risk and yet are taking care of my mom when I am not allowed to. Before COVID, I knew all the staff members well and they knew me because I was there every day. Now it’s very difficult to get to know them (partially because of masks and partially because of social distancing) and it feels like complete strangers are caring for my mom and they don’t know her at all.”

What could facilities do, or what could they have done, to make this situation less stressful for families?

“Let me follow the same infection control protocol as the staff did and be in his room to continue to assist in his care as I had everyday for 2 years before the lockdown.”

“There wasn’t a lot they could do during this pandemic.”

“The only thing I can think of in hindsight would have been a more proactive routine on the staff’s part to communicate an individual update/check in with a regular email to the family members – weekly, twice a month, something – that would say, Hey, Donna is doing good – here’s a picture of here during our sing-along earlier this week. I’ve tried not to call them unless it was urgent because I know they’ve been overloaded (and I have been too), and they only have called when it was urgent.”

As a family member or loved one of someone in a facility during the pandemic, describe how this situation has impacted your own mental health?

“Honestly, I felt like I was sick the first half of the pandemic, and I think now it was just anxiety, mostly! Once Mom had COVID and I didn’t worry as much, I felt so much better. Early on, I definitely struggled with a lot of depression because I had so abruptly lost my purpose in life. I quit my job to care for mom in 2010, so she has been my world since then.”

“It was a dark time. It was tough to have a loved on in a facility – and seeing on the news the number of people that didn’t care about following public health guidance (especially those that thought they couldn’t be told to wear a mask). There were days that I felt like I’d abandoned my mother – and all of that leads to very negative thinking in other aspects of life.”

“I have had to have counselling due to the guilt of having both my mother and husband in facilities and the impact that Covid had on my caring role for both of them. I retired from my job last October as an executive at a Primary School to tend to both of their needs during Covid and knew that being in a school environment would increase my chance of contacting the virus and passing it on to them. I had counselling to establish who I am now and what I wanted to achieve in the future when both of their journeys had come to their destination. This is a harsh thought but I am in LIMBO most of the time and just visiting both of them, meeting their needs and meeting with their care teams. I become very depressed and some days do not want to communicate with persons who do not understand the role of a carer, who have never had to care for anyone and who did not understand the financial situation you are placed in when you have to pay huge amounts to ensure your partner is cared for adequately. mentally all of this takes it toll and I have limited the number of friends I discuss my situation with and I tend to keep my bad moods to myself.”

“Not being able to see my grandma has brought with it tremendous guilt. I feel guilty because in her mind, she doesn’t understand covid. In her mind, we’re just not visiting. Dementia already causes you to grieve before death, and with covid that feeling is just amplified.“

“Knowing he is well cared for helps but I should be comforting and assisting. I feel my role as wife (which no staff member can fill) has been taken away.“

“It has been stressful. Ironically, when my Mom was in hospital (there was another stint in Aug 2020), I had my best sleep, as I knew she was being closely monitored. When she is not doing well physically or mentally, I found I was dreading either receiving phone calls from the home (or her), as well as making them. I was in a constant state of anxiety.”

Hey all!

I have a request today…I am working on some blog posts about the experiences of loved ones and caregivers during the COVID-19 pandemic. If you have experiences you’d like to share, I want to you hear you. Please click on the following link to help me learn about your lived experiences:

https://www.surveymonkey.com/r/COVID_19_nursing_home_exp

Here’s the thing—-No one taught me about the experiences of caregiving through COVID in my grad school classes or textbooks. I haven’t been in a nursing home since March 2020 (as it should be). You need to be my teacher. What I hear from states and the federal government doesn’t always reflect what’s actually happening in facilities. Be honest. Be blunt. I am all ears.

Your experiences and insights matter to me.

I am not planning to publish your thoughts in a book or research article, but may use this in a future blog post. You are welcome to use an alias rather than your real name.

Thank you in advance for your lived experiences.

I have a college student who is working as a gatekeeper.

She works at a continuous care retirement community that has an assisted living, nursing home, and memory care community. She doesn’t actually work in any of these areas.

She works at the front door in a large reception area featuring a bar, hair salon, and convenience store.

It’s her job to greet people and direct them when they arrive.

Well, that was her job. Now, her job is to stop people.

One guy wanted to see his grandpa who was in hospice. She had to tell him no. Many others have come in expecting to visit loved ones. She’s had to turn them away. There’s often a sob story. There’s always a reason. And it doesn’t matter if it’s legitimate.

Your mom called crying because she’s lonely? I’m sorry, but I can’t let you in.

You’re only in town for two days and you worry your grandma won’t be alive the next time you are back in town? Nope. Sorry.

Of course, she has nothing to do with COVID regulations and procedures. Maybe she agrees with the restrictions; perhaps she doesn’t. She’s complained to me that the facility has not been great about communicating with regarding changes in policies and procedures.

When she’s able to say yes, she talks people into wearing masks when they “don’t believe in them.” She’s learned that should shouldn’t say, “You need to wear a mask.” Now she says, “Here is your mask.”

She tells them that their visit time is limited or that they must restrict their visit to a pod (that is sometimes off putting to their loved one). Even when someone is allowed to visit, they often have issues with the parameters of that visit.

If there was a ever a job when you can get away with saying, “I don’t make the rules…..”

But she does it. And she’s done it since March. At first, it was hard for her to give bad news. She didn’t know how to deliver it. She says it still sucks to give bad news but she’s gotten better at it. Pleasant but firm. She told me her social skills have improved a lot.

She’s not the nursing home administrator. She doesn’t work for the Iowa Department of Health or the federal government. I didn’t ask, but she can’t make much more than minimum wage. But someone gets mad about rules and regulations, and she’s there to take the brunt of it.

I’m not even sure she’s old enough to drink.

I don’t know who needs to hear this today, but you are not a bad person.

People ask me frequently if they are bad people.

I find it strange that anyone would think I had the moral authority to categorize folks as good or bad.

Am I bad person because I dread visiting Mom at the nursing home? Am I bad a person because I keep losing my patience when my husband asks the same question? Am I bad person because I don’t think I can keep Dad at home any longer?

Dementia. It’s complicated. It brings about complicated emotions.

You can love your Mom AND dread visiting her at the nursing home.

You can enjoy being around your husband AND get annoyed by his constant questions.

You can be there for your Dad AND assist in placing him in a memory care community.

The other day someone said to me, “I’ve a little grateful for COVID because I haven’t had to see my grandma decline in the last year.”

She followed that up with, “I’m probably a bad person.”

But she’s not a bad person.

She also hates COVID because of the time she’s lost with her grandma…in spite of being grateful that it’s spared her some daily pain. It can be both.

If you find yourself being angry toward your loved one with dementia, keep in mind that you probably got angry with them from time to time before dementia. And it’s not that you don’t care about them. It’s that you need to develop new coping skills. And, no, you are not a bad person because you get angry with your loved one with dementia.

I am not Suzy Sunshine. And I am not a fan of toxic positivity. I don’t go around telling people to “be positive” or “just smile.” The other day I saw a bumper sticker that said “Positive vibes only.” Sigh.

No matter what people say on Instagram, no one is positive all the time. I believe that some of us have to work harder to be positive than others. Perhaps that’s why you’ll find this is a popular self-help book category. Being positivity is a great place to be.

But stop beating yourself up about negative emotions. Negative emotions are normal. A typical person feels a wide range of emotions, and they should be allowed to experience all of them without guilt or shame.

A particular experience that occurred almost 20 years ago has always stuck with me. It wasn’t until recently that I could verbalize why it troubled me so much…

I was volunteering for a hospice in Kansas City. I stayed with an older woman with brain cancer while her husband went to run some errands. He returned from his outing and offered me a soda. We sat and talked for a while.

He told me that his wife had perhaps 2-3 weeks left. She was often in pain, and he struggled with frequent panic attacks. She was no longer able to communicate verbally and hadn’t been out of bed for several days.

A neighbor stopped over. I shall call this neighbor Suzy Sunshine. Suzy started by talking about a new cancer treatment she’d read about online. She wasn’t sure if it worked for brain cancer but there was this doctor on the West coast… The husband filled her in on how his wife was now in hospice. The focus was on pain control, and he anticipated she would only be around a few more weeks.

Suzy responded, “Don’t give up.” Of course, she was well-meaning, but it came across as so dismissive.

She talked a bit about the power of positive thinking. Maybe…she suggested…he could change her outcome if he started putting out positive vibes. Next came a sales pitch for essential oils. She didn’t sell them, but a friend did. The woman finally left.

The husband turned to me and said, “Maybe I’m a bad person but I just want this to be over as soon as possible for her.”

Nope. Not a bad person. In fact, a really good person.

Where do we get this idea that we have to be 100% positivity and all sunshine and rainbows all the time to be a good person? What if we allow ourselves to be realistic? Authentic? Genuine? What if we just let ourselves be…human?

You are allowed to be annoyed. Angry. Frustrated. Fearful. Disgusted. You name it.

You do not have to hide these feelings. You don’t have to let others shame you for them. When you are in a tough situation, your emotions often pull a quick change.

When I’m going through something tough, my self-talk is sometimes a bit like this: I’m okay. No, now I am not okay. Why am I feeling this? Now I feel strong. I will get through this. I want to cry. I want to be alone. Where is everyone? Why isn’t everyone checking on me? I wish everyone would back off. This is something I can handle. No, I don’t think I can handle this. (And that’s like two minutes in my head.)

It’s not even like you have good days and bad days. You have good minutes and bad minutes. And even your emotions during those minutes can be a rollercoaster.

You are not a bad person for feeling these emotions. You are not a bad person because you’re not always positive. You are not a bad person for being genuine.

You are not a bad person.

I have a complicated relationship with living in the moment.

I work hard to feel at peace with being in the present, but my brain fights me.

I think about the past a lot. Something dumb I said at a meeting a few weeks back. A mistake I made in college.

And I think about the future a lot. Whether I should pursue an opportunity at work (that hasn’t yet been offered to me). When I will get the COVID vaccine. Whether or not my dog will be alive at this time next year.

Don’t get me wrong. We’re supposed to learn from the past and we are supposed to plan for the future. But where does the present fit in? Is there enough room for the present when you focus on the past and future?

In an effort to promote some sort of (spiritual, emotional, psychological?) growth, I started meditating in the fall. I am certain not a meditation guru. I paid for a subscription to the Calm App. I was doing it a lot. Then a bit less. And now a bit more again.

I try to wipe my mind clean of thoughts of the past and future when I meditate. I’m typically unsuccessful. I’m such a novice at meditation that I consider it a success if I finish the meditation the app prescribes for me, even if my mind is all over the place. I’m not sure that my growth has been tremendous, but it’s nice to have a short time during my day when I don’t respond to work emails or phone calls.

I’ve heard that depression means you are living in the past–regretting and ruminating. And anxiety means you are living in the future–fearing what might happen. This would mean that to ward off depression and anxiety you have to find a way to live in the present. I would argue that people who are able to focus on the moment they are in and appreciate it for its beauty are likely to be just…happier.

Have you ever had a moment in life where you look around and feel like you are exactly where you are supposed to be in that moment? You’re not thinking about where you are coming from. You aren’t thinking about where you are going. You are just there.

Being with people living with dementia has made me more conscious of living in the moment. As dementia progresses….and you can’t remember the past and you don’t have the ability to plan for the future…where does that leave you? You could say it leaves you ungrounded and purposeless, but in another way, it leaves you right where we should all be—in the moment.

I am not saying that people with dementia don’t have anxiety about the future, and of course it is only those who are in end stage dementia that completely lose the ability to plan. And even if people with dementia can’t remember what they had for breakfast they may be able to easily recall the Reagan era. But as dementia progresses, the window of time people live in becomes more and more limited.

In a strange way, I am trying to limit the window of time that I live in as well. I am trying to live where I am at–instead of where I was or where I might be going. A friend of mine lived a few months with her husband in a minimally conscious state. We often talked about her future…and I’m not sure I’ve ever spent time with someone whose future was so uncertain. She talked about how you can’t live moments that haven’t happened yet, so she lived in the present. It was amazing.

I will never forget overhearing a woman in a nursing home being asked by an employee, “What did you do in activities this morning?”

“I don’t remember,” she responded. “But I’m sure it was fun.”

And she was probably right. It probably was fun. But if it wasn’t, it’s better to think it was, right?

And the time I asked a guy with dementia, “So what did you do for a living?”

He paused for a few seconds and then looked at me with a grin.

“I don’t know,” he said. “I don’t think it matters.”

Then he asked me what I did for a living.

“I don’t think it matters,” I responded.

In that moment, it really didn’t matter. We were just two people who happened to be spending time together in the moment. Our backgrounds didn’t matter. Perhaps there wasn’t a need to focus on where we were coming from. The important thing was that we were sitting next to each other on a couch in that moment.

Do you ever feel like life puts you in a position to learn what you need to learn? Being around those with dementia has done that for me. I need to learn to live in the moment. And I’m working at it.

Now back to the Calm app.

Hey caregivers:

Yes, I am talking to you. Maybe you care for a loved one with dementia at home. Or maybe they are in a nursing home or assisted living–or perhaps in their own home. Maybe they are in the early stages of dementia or maybe they are close to death.

Or maybe you don’t have a loved one with dementia. Maybe your parents are aging and needing more support. Or your spouse had surgery and has to stay in bed for a few weeks. Perhaps your friend lost their husband and it’s your job to emotionally support them and make sure they are caring for their own health. Or someone you care about has depression.

There are very few of us who have not had to take on a caregiver role in some way (physical, emotional, financial, etc.) either for a short or long duration.

Part of being a human being is caring for someone you love when they need extra help.

No matter the extent or nature of your caregiving, I want you to know this:

You will mess it up.

Not the whole thing, of course. But within your caregiving journey (I hate the word journey but can’t think of anything better), you will make mistakes.

You’ll say the wrong thing. You’ll forget to ask the doctor an important question. You’ll fail to pay the utility bill. You’ll make a meal that is a real “clunker.” (That’s what my stepdad calls my mom’s meals when they don’t work.)

Big mistakes. Perhaps you wonder if that nursing home you chose is really taking the best care of your mom. Small mistakes. You lost your patience when your husband asked the same question for the hundredth time. And then you apologized before sitting in your closet and crying for 5 minutes.

A caregiver I know once accidentally gave her dog’s medication to her husband and her husband’s medication to the dog. Fortunately, both were fine, but she was horrified.

Why am I telling you this?

I am telling you this because I know too many caregivers who think they are supposed to be perfect.

You haven’t been perfect in any area of your life, even those areas where you really excelled. Why would you expect to be perfect here?

I’m a good spouse, but I’m not a perfect spouse. I’m a good professor, but I’m not a perfect professor. I’m a good dog mom, but I’m not a perfect dog mom.

You’re a good caregiver, but you’re not a perfect caregiver. Loving someone doesn’t mean we are able to give them perfect care. It just means we love them.

And here’s the thing…caregiving takes a lot of physical and mental energy. You don’t have enough energy left to beat yourself up for mistakes. So don’t.

Let it go. Accept you’re not perfect. And go on.

There are things you can’t change. You didn’t cause dementia, and you can’t change it. Progression of disease is out of your control.

If you had done something differently, your loved one would still have dementia. If you had done something differently, your loved one would have still declined.

That’s the way dementia goes.

Dementia does what it does.

We try to create the best quality of life for those living with dementia. We do the best we can, but the best we can doesn’t change the fact that someone has dementia.

We can’t love away dementia, just like we can’t love away cancer or AIDs or any other disease (even depression). We support people as they negotiate health issues, but we need to remember that we don’t have control over those health issues.

Sometimes we need to realize that it’s not our job to fix things.

Not everything is fixable.

So if you’d indulge me for one second…think about something in your caregiving experience that makes you proud. Did you find a solution to help your loved one find more restful sleep? Did you make them laugh? Did you advocate for them at the hospital? Did you learn to make the perfect vanilla milkshake for when they don’t feel well?

I know you’ve got a win. In fact, I know you’ve got many wins.

Stop for a second and reflect on them. I am grateful that there are people in the world who caregive as you do.

In case there is no one else in your life to tell you this, I am proud of you.

Take a breath. Keep going.

See you in 2021.

Xoxo,

Elaine

Hey everybody! Today I went a different direction…it’s a video blog with a message for my readers!