Difficult and Beautiful Caregiving

I’ve been thinking a lot about caregivers lately.

Caregivers who live at home with their loved ones and are overwhelmed due to social distancing guidelines. Caregivers that cannot visit their loved ones who reside in a nursing home or assisted living due to COVID-19.

Being a caregiver isn’t easy in the best of times. It’s even harder right now.

I work most frequently with caregivers of those with Alzheimer’s and related dementias, but these challenges are not unique to a specific illness or disease. Cancer. Brain injury. Parkinson’s. Amotrohyphic lateral sclerosis (ALS).

Caregiving is rough.

Caregivers come from all socioeconomic statuses, political parties, and ages. We don’t give them nearly enough support in our society. I would be thrilled if a woman caring for her mother with Alzheimer’s was given the same leniency in the workplace as a woman caring for a sick child. I wish more workplaces were supportive of employees caring for adult children with intellectual disabilities. I wish we knew what to say to caregivers who are struggling in the same way we know what to say to new parents.

However, our policies often limit “family” to adults with young children–and do not provide the same accommodations to those caring for spouses, parents, and grandparents. And, to be honest, people just don’t know how to support caregivers through the duration of their journey.

We struggle, in particular, to support those who care for adults who have dementia, brain injuries, and intellectual disabilities. We don’t know what to say so we often fade away–hoping people don’t notice we are avoiding them.

Trust me. They notice. They see you hiding in the next aisle at the grocery store. They realize you don’t call them for wine night anymore. And they know you can’t end the conversation fast enough when you run into them at the Home Depot garden center.

I talk a lot about the challenges that caregivers face, particularly in the age of COVID-19. And those challenges are real. We need to do better to provide services to this population. And I teach the college students who will someday provide these services to caregivers….so it needs to start with me.

But there’s something else I don’t talk about much, and it was thrown in my face tonight by someone who is far more eloquent and insightful than I am.

You see, my friend is faced with the possibility that she will be a caregiver for her husband. She doesn’t know exactly what that will look like, but her life has been turned upside down in the last several weeks by his change in health status. She has no false reality that her old life will suddenly snap back into place.

Tonight, during a long Zoom call with me, she said, “I know this is going to be hard, but it could also be beautiful.”

She reminded me that difficult things can be beautiful. She reminded me that, while caregiving isn’t easy, it can be rewarding. She even described a couple of medical caregiving tasks as fun. Yes, she used the word fun.

I think a lot about the tough pieces of caregiving, but maybe I’m missing the boat. Caregiving can be frightening and amazing. Caregiving can be painful and fulfilling. Caregivers can be awful and wonderful. It’s not one or other. There’s plenty of room in caregiving for the good and the bad.

It is common for a caregiver to feel relief after their loved one passes away. It’s also common for a caregiver (even the same caregiver) to miss caregiving.

Some people get really good at caregiving, and they take pride in their skill, as they should.

Some people find a sense of purpose in caregiving. They find meaning in it, and that meaning sustains them.

Some people find that that their relationship with their loved one changes. Sometimes they find that it becomes a stronger, more fulfilling (although different) relationship.

I have done research on depression among those care giving for those living with dementia. As you might expect, the rate of depression in this group is greater than that of the general population.

And, yet, perhaps my research is incomplete. What do people enjoy about caregiving? What is rewarding? What about caregiving makes people feel like they are making a meaningful difference? What are the positive aspects of caregiving that keep caregivers going when caregiving is rough?

Acknowledging these positives takes nothing away from the stressors that caregivers experience. We must work to identify stressors and provide services support caregivers.

However, maybe discussions with caregivers should also visit the benefits of caregiving. Caregivers should not have to be apologetic for the pieces of caregiving that they enjoy.

We should do a better job celebrating victories with them.

 

 

I’m Back…and Maybe Just a Little Bit Angry

For those of you who checked up on me these last few weeks, thank you. It’s crazy (and kinda flattering) that you missed me.

I’ve been supporting someone who is going through the toughest time of her life–and a tougher time than anyone should ever have to go through, really. And that is more important than my blog. Sometimes in life you have to prioritize.

It’s not my story to tell, so I’ll leave it at that, but allow me to say that I’m learning a lot about resilience and love.

As much as I’m learning, I’m doing a poor job applying those messages. I’m sorry. I’m just angry.

I’m angry someone I care about is going through something awful. I’m angry that COVID is making her challenge even more challenging. Angry that it’ll be a while before I can hop on a plane to go back to Atlanta to see her because airlines aren’t sticking to their promise of keeping the middle seats open.

Oh, I’m angry about COVID in general. Angry that nursing home residents can’t leave their rooms. Angry that no one seems to care when old people die–it’s their time anyway, right?

Angry that people are mocking the pandemic and intentionally planning events that violate social distancing policies. Angry that last week I saw a bouncy house birthday party when I was out for a walk–and there were about a dozen kids in that bouncy house with about 20 adults surrounding it. Angry that our country is torn into two groups: the “masks” and the “no masks.”

I’m angry that people are dying alone.

I’m angry that all of this seems to have been turned into a political issue that’s pulling us apart.

Maybe COVID is on the decline in your area of your country, but I live in a state that has a later peak. Nursing homes, in particular, are reporting new cases.

There are nursing homes that are doing a great job managing the challenges of COVID. That doesn’t mean that they don’t have any COVID cases. It means their employees have heart, and they are doing the best they can to serve the needs of residents who may be scared and lonely without the presence of family.

Many of my college students work in nursing homes. They come to work early and leave late so that they can help residents Facetime and Zoom their families. They sit and visit with residents who are frightened by staff in masks and personal protective equipment. They make me proud.

They understand that many residents watch the news religiously and are aware of the risks involved in living in a nursing home. They understand that other residents (with dementia) have little understanding of COVID and do not get why no one visits them, why everyone is wearing a mask, and why they can’t leave eat in the dining center. Why is bingo cancelled?

I hear of situations in nursing homes that anger me. (I guess anger is my word of the day, right?) There was a nursing home out east that didn’t report resident COVID deaths…in fact they just stored the bodies and didn’t notify families. I was stunned to read about this–and I wish more people had been stunned along with me.

 

People haven’t been as appalled as they should be. Imagine if this were a school or daycare. I’m not convinced this country cares about old people unless they happen to be related to us.

Old people don’t matter….except for my grandma.

Sometimes I wake up at night in the midst of a bad dream that I can’t really remember. I have a sense of anger about something that happened in my dream that I can’t remember.

I am overwhelmed at the cruelty the universe can inflict on good people.

Sometime after 9/11, I saw the following quote:

“When I was a boy, I would see scary things in the news, my mother would say ‘Look for the helpers. You will always find the people who are helping.’ ” –Fred Rogers

That’s stuck with me, and it helps me find a bit of peace when the world is upside down, but it’s not enough lately. There are so many COVID helpers and so much positive news of amazing people making a difference. I see that and I appreciate it. But my appreciation doesn’t decrease my anger.

I’ve been struggling to find meaning. I know they say everything happens for a reason. How do you tell a young woman who can’t visit her husband in the ICU that everything happens for a reason? What about the lady I saw on the news talking about losing her husband and then both of her parents to COVID within a month? Are you able to look her in the eye and say everything happens for a reason?

My anger isn’t productive. I’m not proud of it. It needs to hit the road. I know that. And I’m working on it.

In fact, tomorrow I plan to go buy some hanging baskets of flowers to make my yard a more pleasant setting. In my mind, this will take my anger down a notch. Maybe even two.

I want to be one of those helpers. I can’t do it if I’m angry. My anger doesn’t serve myself, and it doesn’t serve others. I need to get past it and get a good night’s sleep.

But it’s not that easy.

I want to know that we care about old people and those who have health problems. I want to know that we all grieve with families who have lost a loved one–even if we are eager to get back to our everyday lives. I want to know that we are willing to make small sacrifices moving forward if it means looking out for people who might be immunocompromised.

I just want to know that we care.

I’m angry so many people just don’t care.

 

 

If you are looking for an article summarizing how the pandemic is impacting those with dementia and their loved ones, here’s a good one:

https://abcnews.go.com/US/covid-19s-hidden-victims-alzheimers-patients-nursing-homes/story?id=70686559

Caregiving and COVID-19

There’s been a lot of discussion about residents living in nursing homes and how they are impacted by COVID-19. Today I want to go in a different direction…

Let’s talk about in-home care partners with loved ones who have dementia.

Maybe your mom has dementia and was living alone…but you invited her to stay with you during the COVID-19 crisis.

Perhaps your mom has lived with you for a while now. She went to an adult day center when you went to work. The adult day center closed. And you are (somehow) expected to now put in your 40 hours a week from home.

Maybe it’s your partner who has dementia. They are in the early stages…they don’t need a lot of assistance, but this crisis is causing them a lot of confusion and anxiety. You answer the same questions about the virus 100 times a day.

Let me start by saying I don’t have the answers. I never took a class in grad school titled “Coping with Dementia During a Once in a Lifetime Deadly Virus Pandemic.”

We are all just doing the best we can. And I think it’s important that we aren’t too hard on ourselves (or each other).

There is no wrong or right here. It’s about what works.

For most of us…whether we have dementia or not…a routine works.

You know how great it feels to wake up on a Saturday morning and realize you have nothing on your calendar all day? It’s a good feeling. You know how it feels to wake up on the 45th day of having no routine? Not such a good feeling.

Most people do better with a little bit of structure. Without that structure, we may begin to feel like we don’t have a purpose.

A few weeks ago, I told someone to make sure to try to keep her dad’s daily schedule similar to what it had been before COVID-19 and social isolation. It seemed like reasonable advice at the time…but for many people that’s just not realistic at this point.

We may need to create new schedules. Write them on whiteboards. Have tasks and a to-do list everyday. Structure each day in a similar way. Our best bet–in some cases–is to give up on that previous routine and settle into a new one.

Maybe your loved on with dementia is asking a lot of questions. Why can’t we go out to eat? What’s the illness they are always talking about on TV? Are a lot of people dying? Can’t we go to the grocery store?

I don’t have perfect advice for answering these questions. I would reassure you that it’s okay to provide a response that minimizes your loved one’s fear and anxiety. Maybe you downplay a situation. Maybe you do some therapeutic fibbing (that’s the term we use because “lying” makes people uncomfortable).

We should give people information that they are able to digest. If they can’t digest it, consider withholding that information. Of course….there are MANY people with dementia who are fully capable of digesting the COVID-19 crisis (well, as capable as the rest of us are of digesting it, anyway).

Most of all, be patient. Obviously, be patient with your loved one. It’s hard to have dementia. It’s even harder right now.

But, also, be patient with yourself. Caregiving is hard under under the best of circumstances. It’s harder now.

Maybe you are going to respond in a not-so-nice tone. Perhaps you are going to forget to do something that’s important to your loved one with dementia. Maybe you will realize you haven’t showered in 3 days, and you’re not sure when you last brushed your teeth. And you know your loved one should’ve had a bath last night but it just didn’t happen. You’ve forgotten about healthy meals for the time being; you and your loved one are surviving on frozen pizza.

It’s okay.

I’d tell you to call a support person to come over so you can get out for a while. But you can’t call a support person when you’re social distancing. And you really can’t go anywhere anyway.

Acknowledge that things are going to be different for a while. You’re going to do your best, but some days your best isn’t going to be that good. You’re going to go to bed at night and think you’re a pretty awful caregivers.

But stop. You’re doing okay at this. It’s not about perfection.

This is a pandemic. Nothing is perfect in a pandemic.

I hope you are well physically and mentally.

 

COVID-19 and….I don’t even know where I’m going with this

In the midst of this pandemic, I feel inadequate. I have nothing to offer you.

Except my apologies.

If you have COVID-19, I am so sorry.

If you suspect your have COVID-19 but can’t get a test, I am so sorry.

If you love someone who has COVID-19, I am so sorry.

If one of your loved ones has died of COVID-19, I am so sorry.

If you live in a nursing home and cannot see your family and friends, I am so sorry.

If you cannot visit your loved one in a nursing home, I am so sorry.

If work at a nursing home and are asked to go above and beyond when you are struggling yourself, I am so sorry.

If COVID-19 has caused a relapse (or a first bout) with anxiety or depression, I am so sorry.

If COVID-10 has exacerbated your obsessive-compulsive disorder, I am so sorry.

If you have an acute or chronic illness and have been unable to get adequate care because of COVID-19, I am so sorry.

If you have had to make difficult decisions about other people’s lives due to COVID-19, I am sorry.

If you are struggling financially due to COVID-19, I am so sorry.

If you have been discriminated against for your race due to COVID-19, I am sorry.

If you work in health care and have (reasonable) anxiety because you put yourself at risk at your job, I am so sorry.

I could go on. This pandemic has impacted each of us in unique ways. But if you are sitting around feeling sorry for yourself….it’s okay.

You can’t stay there forever, of course, but you are allowed to grieve — whether it’s for a death or for the realization that you won’t get to see your grandkids until after their next birthdays. It’s okay to be sad. It’s okay to be pissed off. It’s okay to rage and to cry and then to laugh because it’s all so ridiculous.

Whatever you are feeling, I’m telling you right now that it’s okay.

And if you are feeling a million things all at the same time and then also feeling nothing at all….I’m right there in the same boat.

If you are scared, it’s understandable. If you’re confused, I get it. If you are feeling bored, overwhelmed, useless, sulky, or bitter, I’m right there with you.

I’m also feeling grateful. Grateful that I’m healthy, of course. Grateful for everyone who is following protocol by staying home. Grateful for those willing to work in health care in these tough times. Grateful that my mom and stepdad are taking recommendations seriously and I’m not having to argue with them about their behavior. Grateful that I started a program to bring art supplies to residents of nursing homes and people responded. Grateful that my husband and I are still talking after a couple weeks of being in the house together.

I’m doing okay, really. I know that others are not. I know it’s not going to get better soon. Maybe we learn to cope. Maybe we find new solutions to the challenges we are facing.

But I’m not a sunshine/unicorns/silver lining type of girl. I like to find hope in real life rather than in fantasies.

This isn’t going to be cleaned up by Easter, but I’m finding hope in the kindnesses I see. People taking care of their neighbors. People giving the last roll of toilet paper to the older couple behind them in line. People working in labs day and night to come up with interventions and vaccines. People sewing masks. People who own businesses and are putting humans among profit.

Maybe this virus sucks, but people don’t.

I’m going to cling to that because perhaps it’s the only way I’ll get through this.

Whoever you are, wherever you are, I hope you are somewhat okay. I’m worried about your physical health but I’m also concerned about your mental health.

Take care of other people, and take care of you as well.

 

XOXO,

Elaine

 

 

 

Special Guest Blog: COVID-19 and Dementia

Today’s special guest blogger has more expertise on the subject than I do–he is living with dementia. Emphasis on “living.” Thanks, Roger, for sharing this and for reminding us of the potential that people living with dementia have to continue living meaningful lives and making a difference. —Elaine

 

 

Coronavirus and Dementia

How I see things in my world

 

My name is Roger Marple. I live with Alzheimer’s and I am happy to say challenges aside, my quality of life is full and meaningful.

Recently I made a comment on Twitter than seemed to resonate with people.

“When your mortality could be challenged by Coronavirus I get the anxiety and worry many are experiencing. Take it from a guy who is used to have his mortality challenged, don’t stress what you can’t control. Live in the here and now. Carry on folks, you’re doing just fine.”   Roger Marple @rogerdoger991

When I see people coming to terms with their mortality possibly being challenged with Coronavirus my empathy for absolutely everyone on earth rang true for me and thus my comment here. 

Empathy: such a powerful skill to have in our lives. Definition as follows: 

Empathy: noun: “The ability to share someone else’s feelings or experiences by imagining what it would be like to be in that person’s situation.”

Getting our heads around situations when our mortality can be challenged takes time. We need time to process this and collect our thoughts on how we are going to handle our challenge we are facing.

After much thought living with Alzheimer’s, I came to the realization that we all live with this terminal condition called life. After all is said and done we are all in the same boat. 

The only difference between me living with Alzheimer’s and healthy people is perhaps I can see how my mortality may look for me. This begs the question how do we handle ourselves in times of adversity? One advantage I have over many I have had time to think about this. I have time to have an understanding what this looks like. You see my friends, I may have challenges but as mentioned my life is full and meaningful for me. 

This discussion is about how everyone is going to address adversity head on we are all experiencing and goes back to my mention of the word empathy

I saw news reports of hundreds of people on the beach in Fort Lauderdale, Florida, or people in the UK packing bars before they were shut down, having a good time during an outbreak of the largest pandemic of our century.

If I were a betting man based on the media at the time, pretty everyone in world knew about the Coronavirus and the repercussions from spreading this virus, as well as overwhelming our health care system.

Here is an example of empathy not being seen in the big picture in our new reality at least for the time being. Sadly people will suffer down the road due to this behavior in ways I doubt they could even imagine. For every action there is a reaction. 

On the other side of the coin, I see story after story of how we are pulling together to help each other. A local beer brewery has halted making their product in my town. They are now making hand sanitizer and giving it away for free to anyone who needs it. I see more examples of this kind of ingenuity, compassion and kindness every day by people and business alike.  It is absolutely wonderful, and my respect and admiration runs deep within my heart for them. 

I have a neighbor (a single mother) who has a son with a compromised immune system. I drop her off food, baking I have done, and offer anything I can do to help her I am there for her. Another friend is a senior who has similar health issues. He has an open invitation any favor he may need. I’ve fixed things for him, packed water for his water cooler, and ran errands for him. I also look for other opportunities to be a help in these trying times. 

It’s all about the choices we make. It’s all about what we can do for others in a time when our needs are at the greatest. It’s all about listening to our government and slowing down the spread of this Corona virus not to overwhelm our health care system. This is a time to reflect on what we can do for others if we are in a position to do so and more importantly acting on it. 

I may have Alzheimer’s but at least for now, challenges aside, for the better part I’m still doing ok. I want to be remembered how I lived my life in times of adversity in a good way. Not just my adversity but having empathy for others for their challenges and doing my level best to make a positive difference, whatever way that may look. It doesn’t have to be grand gestures, saving the world; it’s more about baby steps recognizing people that could use a hand. 

There will be many unsung heroes who probably won’t even get a thank you for what they did after all is said and done. For these unsung heroes it probably wouldn’t even matter. But at the end of the day they will look in the mirror and like what they see and rightfully so. They made / make a difference in our society. 

Hope your choices are good ones going forward in these trying times. We are all in this together in this journey of life my friends. Whether living in times of adversity with Alzheimer’s or times like this with Coronavirus this is how I chose to live my life. I hope you do to. 

If one person who lives with Alzheimer’s can see this with such crystal clear clarity, I hope you can too. 

 

Stay safe everyone.

 

Warmest regards,

 

Roger Marple 

 

The Northern Iowa Gerontology Nursing Home Art Box Project!

Exciting news!

Yesterday we launched the Northern Iowa Gerontology Nursing Home Art Box Project to send art supplies to nursing home residents who are isolated due to COVID-19.

I have some funding to buy supplies due to a generous gift from the Adele Whitenack Davis family. However, some people have asked how to contribute. And the more supplies we have, the more residents we can help!

I made a registry with some needed items. If you order from Target off the registry, it will be shipped directly to us for packing.

 

XOXO Elaine

Nursing Homes and the Coronavirus

Does anyone else wake up every morning and think they’ve had a nightmare based on some odd sci fi movie they once saw…and then realize it’s real?

I don’t know where to begin.

First of all, I’m not in nursing homes, memory care centers, or adult day centers lately. I’m a gerontologist who is avoiding older adults like the plague. Except they aren’t the plague. I am potentially the plague.

To be clear, I have no indication that I have COVID-19. I feel fine. I have no symptoms. But I can’t rule out that I’ve contracted it and am not yet showing symptoms. None of us can….

I would be devastated if I transmitted COVID-19 to someone who health was vulnerable due to age and chronic illness.

I am not scared of getting COVID-19. In the framework of our society, no one really cares if I get COVID-19. However, I am terrified to transmitting COVID-19 to someone who might die from it or even need our limited medical resources. And if I don’t get it, I can’t transmit. Therefore, my goal is to avoid the virus. It should be your goal as well, no matter your health status.

Although I’m not at nursing homes or other senior living environments, I’m hearing from employees and families…and even some residents…and what I’m hearing makes me sad. It’s not just the coronavirus. It’s the (necessary and important) precautions we are taking due to the coronavirus. The sacrifices we are asking people to make are excruciating.

I’ve heard from a family who worried that their mom’s nursing home would shut down to visitors (which it eventually did) and decided the best decision was to bring their mom home during this time. Their mom, who has Alzheimer’s, had more extensive care needs than they realized. They realized they couldn’t provide her adequate care at home and drove her back to the nursing home. They weren’t even let in the building to get her settled. They sat in the parking lot and cried. They don’t know when they’ll see her again.

A current Gerontology student at the university where I teach works as a nursing assistant at a local nursing home. When the nursing home decided to ban visitors to protect residents, a family member called the facility and told my student (who is, by the way, 19 years old) that she and the other employees are cruel and heartless for keeping residents from their loved ones. I get it…it’s hard…but we’re all in this together. And strictly limiting visitors is absolutely the right decision. Please don’t be angry at nursing home employees. Many are staying extra hours during this time.

I have alumni working as nursing home administrators. They are telling me how nothing has prepared them to make the decisions they’ve had to make in the last few weeks. They are telling staff to stay home if they have symptoms, but they worry about having enough staff to take care of residents. They understand the social needs of their residents, but they’ve had to stop group activities and cease congregate meals.

They have residents with dementia who don’t understand or forget why their families can’t visit. They have residents who watch the news all day long—and are terrified that the virus will infect their nursing home and they will die.

I know a few technology-savvy nursing homes who have set up Facetime and Zoom visits with families. However, I know some people with dementia will be confused or even agitated by virtual visits. And not all families are able to take advantages of these services due to lack of internet service.

A friend who works in a nursing home has told me how scared some of their residents with dementia are when staff must wear a mask. If you struggle to recognize people under normal circumstances, imagine how hard it might be when they show up in a mask.

I got a message this week from a woman whose mother has younger-onset Alzheimer’s. Her mother is progressing quickly. One day she could brush her teeth; the next day she couldn’t. She struggles to remember her daughter. Her daughter knows that by the time she is able to get back into the nursing home her mother will likely have forgotten her name. She’s unsure of the other changes that will happen during the separation and is bracing herself for the version of her mother she will meet when she returns.

An older man sent me a message about his wife, who lives with dementia in a memory care community. He usually spends most of the day with her, and he is there to assist her in eating her meals. He was told this week that he wouldn’t be able to visit for an indefinite period of time. He told an employee that if his wife won’t eat, it helps to sing to her, particularly “You Are My Sunshine.” Oh, my heart.

I know someone who works as an activity director at a nursing home. She coordinates a Sunday church service in their chapel. Pastors in their community rotate in preaching the service. She left some messages for the pastor who was supposed to preach last Sunday to tell him not to come. He showed up anyway because, “God will keep us safe.” He was not allowed in the building.

I’m sad for those who will be fighting for their lives because of coronavirus, but I know that our important precautionary measures will cause individuals and families significant pain and trauma that isn’t physical. There’s no way around this.

If you have any experiences related to nursing homes and coronavirus, I want to hear about them. Please comment below. I don’t have any answers, but I want to know what this is like for those of you directly impacted.

I’ll have time to read all of them. After all, I’ll just be sitting here at home. Trying not to get COVID-19.

 

 

This Ain’t Just About Memory: Dementia and the Senses (Part 5: Touch)

This is the fifth of a series of five posts about the senses and dementia.

Today we focus on touch.

The issue of touch, or tactile stimulation, for those with dementia is complex. An entire book could be written on the topic, and I will be clear that this post is not a complete summary of how one should consider tactile stimulation for those with dementia.

But allow me to start here…

There are many articles that tout the benefits of touch for those with dementia. I often read that people with Alzheimer’s don’t get enough physical contact. I hear that those who live in memory care communities crave touch. Sometimes people use the term “touch deprivation.” I cannot disagree, but I think there’s more we need to think about.

As humans, we like touch from individuals we like and trust. We don’t like touch from those we dislike and distrust. And we generally become anxious if we receive intimate touch from someone we don’t know.

Dementia doesn’t change this.

In the past couple of years, I have noticed a trend on campus. I have seen several small groups hanging out by our student union with signs that say “Free hugs!” For my own amusement (and because I have a psychology background), I have watched reactions when faculty, staff, and students pass the “Free hugs!” crowd.

Some people think groups offering free hugs to strangers are fantastic. They see this as all that is good about society. And then…there are people who are nauseated by the thought of someone they don’t know offering them a hug.

Let’s be honest. We all have varying levels of comfort with touch. Some of us are huggers; some of us aren’t. And those huggers can make those non-huggers feel pretty dang uncomfortable. I have seen non-huggers on campus walk an extra quarter mile to avoid the huggers. If I’m being honest, I’ve done it myself.

Throughout life, people with dementia have developed (just like the rest of us) their own expectations for when it is okay to hug, okay to touch someone’s shoulder, okay to hold hands, etc. And dementia complicates this…making it an oversimplification to think we are going to improve quality of life by running around offering hugs and holding hands without second thought.

If we touch people with dementia, we need to make sure that touch is welcomed and not anxiety-provoking. We need to pay attention to body language. If they indicate they are not comfortable, we need to back off.

I was at a nursing home once when a woman with Alzheimer’s had a visitor. It was her adult nephew, a gregarious guy who she hadn’t seen in months. He marched in and engulfed her in a bear hug. From a distance, you could see that the woman was uneasy or even scared.

From his perspective, he was embracing a woman he had known his whole life. To her, however, a strange guy had just walked into her bedroom (a space that is generally sacred–how many people do you allow into your bedroom?), rushed up to her, and pressed his body against hers.

He could have done a few things differently. He might have knocked on the door and said something like “Hi, Aunt Dianne. It’s your nephew, John! So good to see you!” before entering her room. He might have approached slowly to give her a chance to process who he was. As he moved closer, he could have looked for a positive sign (a nod, a smile, eye contact) that she would welcome a hug. These steps may, or may not, have caused her less anxiety.

People with dementia often have limited peripheral vision. This means that approaching someone and initiating touch from the side or the back can startle a person. I have many times made the mistake of approaching someone with dementia from behind and placing a hand on their shoulder. I don’t even give them a chance to identify and process who I am before I touch them. I don’t like someone putting their hands on me if I have no idea who that someone is. Neither do people with dementia.

I recently met a man who was caring for his wife with dementia in their home. For many years, they sat side-by-side each evening on the couch watching television. Sometimes he would put his arm around her. As her dementia progressed, he realized that putting his arm around her often triggered a negative reaction. She’d look at him with disdain and confusion before getting up to move across the room.

Perhaps it was that she wasn’t exactly sure where that touch was coming from because he was at her side rather than in front of her. Maybe she would forget who he was and wonder about this strange man  who had the nerve to put his arm around her. I wasn’t sure of the explanation. Painfully, I had to suggest that this gentleman stop trying to put his arm around his wife.

Sometimes those with dementia need assistance with activities of living (bathing, dressing, toileting, etc.) and this requires touch. The touch needed to complete these tasks may or may not be welcomed. However, there are a few tricks that caregivers may find useful.

First, make sure the individual can anticipate when and where touch will occur. Of course, you can relay this verbally by saying something like, “Marta, I’m going to help you put on your shirt.” As the disease progresses, these messages become harder for an individual with dementia to process. It may also be useful to make sure an individual can see the shirt, your hands, or anything else that might help them to understand what is about to happen.

Second, move slowly in providing care that requires physical touch. I understand that this can be challenging for a professional caregiver who works in an understaffed nursing home. It’s also not easy for a family caregiver who has a plate full of responsibilities. Keep in mind, however, that the same touch sequence can be perceived differently by a person with dementia when it is carried out more slowly. Sometimes what can be perceived as an assault or attack when you are in a hurry can be perceived as a moment of connection when one takes their time.

The brain must make sense of the information we gain from making contact with the world around us. We use our hands to test the bath water before we get in the tub. If it’s too hot, we pull our hands back quickly. Our brain has given us the message that contact with something this hot can be dangerous. We run some cooler water before we get in tub.

Someone with dementia may get in a bath tub full of dangerously hot water. Their brain cannot relay the message that the situation is dangerous. Days later, a family member may notice blisters or burns on their body.

Dementia changes how a person experiences the world. A favorite blanket might now be too heavy. An old sweater might become too scratchy. Shoes that were once comfortable might not feel quite right anymore. Someone who used to enjoy the sensation of sitting outside and feeling the breeze on their face might now be annoyed by the wind. A guy who used to enjoy peanut butter won’t eat it anymore. It’s a texture thing. He doesn’t like the way it feels in his mouth.

I know someone with younger-onset Alzheimer’s who suddenly hated wearing jeans–they just didn’t “work” for him anymore although he couldn’t explain why. His family had to buy a large supply of corduroys because that seemed to be the only type of fabric that wasn’t irritating to him. His new uniform became a pair of corduroys and an Iowa Hawkeye sweatshirt. Every single day. It just felt right to him.

These changes in preference are not indicators that people are being difficult. They show that communication between brain and body are altered.

This Ain’t Just About Memory Loss: Dementia and Senses (Part 4: Taste)

This is the fourth in a series of post about dementia and the senses. Some of the following content is adapted from a 2016 blog post that I wrote.

Today we address taste.

We use our taste buds to taste four flavors: salty, sweet, bitter, and sour. (There is some controversy about whether there is a fifth flavor, umami, which is sometimes described as savory, but we’ll leave that for another discussion.) Everything we eat–Cheetos, Chicken McNuggets, tofu, kiwi, frozen waffles–is a unique blend of these flavors.

Taste is our perception of the combination of chemical signals on the tongue. Dementia may alter this perception.

We think that our ability to perceive bitter may be altered the least as dementia progresses. This may explain why people with dementia tend to reach for sweets. They are attempting to compensate for something that tastes more bitter than it used to. Although the specific cravings and preferences of people with dementia vary, there is no doubt that dementia changes how we experience the combination of tastes as we eat.

Let’s say Lee has Alzheimer’s and was recently admitted to a nursing home. For many years, she and her husband have frequented a local Italian restaurant. She’s been asking her family to take them there for their upcoming 50th anniversary. Her family thinks this is a fabulous idea and makes reservations for a dozen people. Several weeks in advance, they start to talk to Lee about the event. They even mark the date on a big calendar in her room.

The day finally comes, and the nursing home staff dresses Lee in her favorite dress. Her family gets her to the restaurant. She orders the fettucine alfredo–the same dish she has ordered at this restaurant since it opened 30 years ago.

When her food arrives, she takes one bite and says, “This is awful. I don’t know why they changed the recipe. I can’t even eat this.”

I hear variations on this story. Sometimes it’s a family holiday recipe. Sometimes it’s a chocolate chip cookie from a recipe that Grandma herself perfected. Maybe it’s a boxed cake mix that isn’t the same as the last time Mom purchased it.

Grandpa tells grandma that she obviously forgot to put an ingredient in her special coleslaw this time. A mom loudly tells her adult daughter that another family member messed up the Christmas turkey in such a horrid way that it’s not even edible. Maybe she even throws it out when no one is looking.

If there’s one thing I’ve learned in the world of family life and caregiving, it’s that food is more than food. Food is love. If we love people, we want to feed them.

There is nothing more heartbreaking to me than a family member who goes to the ends of the earth to bring a loved one with dementia their favorite food in effort to show love…and then that loved one takes one bite and spits it out in disgust. Unfortunately, it happens a lot.

The person who has dementia isn’t intending to be difficult. It really does taste all wrong to them. Maybe it was their favorite food. Maybe it wasn’t that long ago that they really enjoyed it. And maybe they even requested it. But it doesn’t taste right.

On the other hand, sometimes foods that would not have been appealing in the past to someone with dementia become irresistible. I know a guy who ate a whole can of store-bought vanilla frosting while his wife was in the shower. She only realized this when she saw the empty frosting can in the trash.

“How could you eat something that sweet?” she asked him.

“I used a spoon,” he responded matter-of-factly.

The same man also managed to eat an entire box of powdered cake mix and about a cup of straight brown sugar once when his wife was downstairs folding laundry. She realized she would have to keep some of her grocery items locked in a cabinet. She decided to leave a few pieces of hard candy out at a time, so he could have a sweet treat without going overboard.

When someone tells me that their loved one with dementia only wants ice cream, or cookies, or cake, or pudding, I tell them that that the closer the person is to end-of-life the more they should give in to these preferences. If someone with dementia has years of life ahead of them, balance their preferences with an overall balanced diet when possible.

As they near the end of their journey, you give them whatever delightfully sugar- and fat-laden treat they crave.