Why Join a Support Group? To Survive!

Episode 15 - Why Join a Support Group? To Survive!

My husband is afraid to get into the shower. Is this normal?

My wife fell out of bed. How can I keep her safe? 

My husband won’t take his meds. What should I do?

I can’t afford a wheelchair. Can you help me?

I’m angry. I don’t know how much longer I can do this. 

Those are just some of the questions and frustrations I heard in my dementia support groups. I also heard answers and reminders that we aren’t on this journey alone.  How a good support group can help you – that’s what this episode, #15, is all about. 

You’re listening to My Spouse Has Dementia, a podcast that uses personal stories, occasional interviews, and simple rituals to support dementia caregiving spouses. My goal is to help us survive … because about 40% of us die first. I’m Zita Christian, writer, Life-Cycle Celebrant, widow. My husband and I were married for 41 years when he died. 

In the six years between my husband’s diagnosis and his death, I joined several support groups for caregivers, two online, one on a social media platform, and one in person. 

My first experience with support groups was through the Alzheimer’s Association website. My social worker, Amanda, suggested I check it out. I did find it helpful to read about the experiences of other caregivers. But I didn’t feel comfortable posting about my own situation – at least not then. I felt raw. 

About 3 years later, Amanda and two other healthcare professionals formed a support group. I knew Amanda. I trusted her. I joined the group. 

At the time, we met in person in a conference room affiliated with the neurology practice where Amanda worked. At that first meeting, there were four caregivers, all women. I was the only one caring for a husband with Alzheimer’s. The other three were caring for husbands with Parkinson’s.  

I questioned how effective the group would be since the people we were caring for didn’t all have the same disease.  

It turns out both Parkinson’s and Alzheimer’s – and a host of other types of dementia – have a brain disorder that affects a person’s ability to remember, to move, and to communicate. Both diseases are progressive. Both are fatal. And there is no cure for either one. Not yet. 

Of course, there are differences and patients are different. Still, when it comes to helping the caregiver navigate the journey with a spouse, well, there are plenty of similarities. It’s those similarities that make being in a support group so valuable. 

According to information on the Alzheimer’s website, both Parkinson’s and Alzheimer’s can “...cause anxiety, depression, and sleep disturbances in early stages. In later stages, both conditions may lead to delusions, hallucinations, and other psychotic symptoms.”

Now, I’m not a doctor. I’m not a medical professional of any kind. I’m simply the wife of a man who died from Alzheimer’s. I’m telling you about the similarities in two of the many kinds of dementia because when we first take on the role of caregiver, we’re desperate for information. When we find out how much information is out there, it’s easy to get overwhelmed. 

Here’s the thing with the members of that support group.  We were, each one of us, caring for a husband who had some of those symptoms. We were, each one of us, caring for a husband we loved.  

We’d see a new symptom and want to know if it indicated the progression of the disease. We’d see a change in behavior – not a good change – and we didn’t know how to handle it.  

In a support group, we might hear: 

• He won’t take his medicine. What should I do?  
• He rolled off the bed in the middle of the night. How can I keep him safe?
• He sees soldiers on the stairs, horses in the street, and strangers in the dining room. What’s happening to him? 
• He woke up screaming. He’s scared. I’m scared! What should I do?
• He’s constipated and the usual remedies aren’t helping. What else can I do?
• He keeps falling down. I’m afraid he’s going to get hurt – bad. What should I do?
• He tried to yank the faucet out of the kitchen sink. He’s never been violent. What’s happening to him? 
• He screamed at one of our old family friends and threatened to call the police. What should I do?
• He tried to bite me! What should I do?
• I can’t sleep. What should I do?
• I’m angry. What should I do? 
• I’m scared of what’s coming. What should I do? …

I heard those questions because I asked those questions. Every. One. 

Other people asked some of those same questions. They asked these questions, too:  

• What kind of walker should I get? With a seat? Without a seat?

• The doctor said he might need a wheelchair. I’m not strong enough to load and unload a wheelchair from the car. 
• I don’t think he can see the toilet bowl. He keeps urinating on the floor. Is there a product that will really remove the odor?
• We need a ramp for the wheelchair. Should I get metal or wood? Should I rent or purchase? Do any organizations offer used ramps? … Used wheelchairs? Used walkers? 
• He’s having trouble swallowing. Can you recommend a good thickener I can put in his juice? 
• His bowel movements are like cement. I’ve had to call the plumber three times. I don’t want him to have some kind of obstruction. What can I give him that will work and is safe?  
• We need a hospital bed. Where should I put it? Does it need special sheets? Where can I get them? 

People asked about grab bars, about disposable undergarments, and about the best kind of shoes to get. 

Sure, there are plenty of books and pamphlets that will offer suggestions for all these questions. I have my own little library. You probably do, too. As helpful as many of those books are, I want to hear from fellow caregivers who talk about their personal experiences.  

In a good support group, everyone shows up and everyone shares. We get to know each other – not every aspect of a person’s life, but the things that matter now. We don’t shy away from heavy topics. 

For instance, we talk about family dynamics. We talk about the siblings or adult children or step-children who can’t, or won’t, help us. 

In one of my groups, a woman shared that her stepson accepted a job over 500 miles away rather than come to the house once or twice a month and just spend time with his father, talk to him. Yes, conversation had become challenging. The words  didn’t always make sense. But the father still recognized his son, still asked when the son was coming over.

We know the day is coming when the father might not recognize his son. How is that son going to feel then? 

Depending on the stage of the disease, a person with dementia can be responsive one minute and disappear into a fog the next. If you’re the primary caregiver, you get used to uncertainty. But if you’re a sibling or a child and you see your sibling, or parent or grandparent only a few times a year, you can be shocked by how fast a person with dementia can decline. 

Amanda, my social worker, prepared me in advance for the day when my husband wouldn’t recognize me.  If you’re a sibling or a child of a person with dementia and the person you’ve come to see doesn’t know who you are, well, it hurts. It might make you reluctant to stay in that energy. 

What about the discomfort some children might have of interacting with a parent when the relationship has been abusive, or at least not healthy. What if that parent is helpless now? 

What if the child longed for reconciliation with the parent and now the parent has no memory of the past, or of the child? 

Understand, a support group is no substitute for a good therapist! Being in a trusted support group might help you identify reasons why you should see a therapist.  

In one group, we talk about the children or step-children who challenge us at every turn. I’m thinking of a particular woman, vibrant, active in her community. She and her partner are not married. As his health declined and signs of dementia appeared, living alone became impossible for him. She invited him to move into her house. They’re in their late 70s, early 80s. The beauty of companionship binds them together. 

The challenge comes from his daughter. She wants her father to move out of state to be closer to her. He doesn’t want to go. Maybe the daughter is trying to accept responsibility for her father’s care. Unfortunately for everyone, the daughter’s approach has been confrontational.   

On the flip side of all these challenging family dynamics, we also talk about those family members who don’t have time for a lengthy visit but will swing by and cut the lawn, or take out the trash, or pick up a few things at the grocery store.

We talk about the family members who live thousands of miles away and will hop on the computer and research caregiving resources available in your area. Sometimes those long-distance relatives will send a card of encouragement, a simple statement to say I see and I appreciate what you’re doing. (Shout out to my sister Laurie!) 

Sometimes, those long-distance friends or relatives will make arrangements for a restaurant in your town to deliver food a few days a week so we don’t have to cook.

We talk about how to ask for help, about how to make a list of things people can do when they say, “If you need anything, just let me know.” IF? That’s a joke. The list of what a family dementia caregiver needs is long and never ending. 

We talk about what’s involved if you have to place your loved one in a care facility. We talk about what we can do to keep a loved one at home. 

We talk about all those end-of-life legal documents we need to have in place. We talk about when and how to get hospice involved, about what CPR really looks like, and about the gut punch of taping the Do Not Resuscitate notice on the refrigerator where the EMTs are trained to look for it. 

What if you know and follow your spouse’s wishes of no feeding tube – but your child accuses you of starving his father. What if your child has been estranged from the family and wants to keep the parent alive in order to make amends? In a good support group you can talk about those situations, too. 

We talk about funerals, and cemeteries, and memorial services. We talk about the costs – monetary, physical, and emotional costs. We talk about spiritual costs. 

Right now, you might be thinking, wow, I didn’t know that’s what a support group was like.  You couldn’t pay me to join one! I’m not going to expose myself that way.  

Or, I’d give anything to be in a group where I felt comfortable enough to talk about what I’m experiencing as a caregiver.  

I’d like to tell you that all support groups are alike. They are not. Some are structured like a webinar, where the caregiver listens to a guest speaker. Those speakers can be very helpful. Sure, the speaker might be there to talk about how to make your bathroom safe and the speaker is employed by a company that offers that service. That doesn’t negate the value of the information. Plus, having a speaker usually means you get to ask questions about your specific situation. You get to make a connection you can explore later if you choose. 

Still, to my way of thinking, the most important thing a support group can provide is a safe place to talk about what we’re dealing with and that also means what we’re feeling.  

Having our experiences acknowledged, our questions answered, our concerns validated, our anger understood, our fears mirrored in the eyes of others, well, I think that group dynamic helps lift the weight of our grief. 

Yes, I used the word grief. I’m talking about anticipatory grief. We are mourning the death of a loved one who is still alive. That’s a topic for another episode. In the meantime, think about what it means to support someone else or to receive support for yourself.  

To port means to move something from one place to another. A porter is someone who does the moving. A porter is the bearer of some sort of burden. 

To sup is to imbibe, to take in physically. That’s where we get the word “supper.”  Apply the idea to emotions. That makes a sup-porter someone who helps someone else bear an emotional burden, someone who helps a burdened person move from one place to another. 

In a good support group, each one of us is a supporter to someone else. We help each other move from one place to another – like moving from confusion to clarity, from wishful thinking to acceptance, from feeling helpless to feeling empowered. 

I facilitate a small support group for dementia family caregivers. We meet online, twice a month. Unlike other online meetings that begin with a personal check-in and then move on to business, the whole purpose of our group is that personal check-in. We begin each gathering by sharing an example of how we exercised our personal power since our last meeting. 

Sometimes, exercising power means something seemingly easy, such as telling the neurologist I want a second opinion. 

Sometimes, we recognize our power when we question the reason for a new prescription, or when we press for information about a trial program for a new drug, 

Sometimes, we realize we have power when we say no to an in-person medical appointment that requires at least an hour on the road when a tele-med appointment will suffice. 

We exercise power when we meet with an attorney to revise our own will and other end-of-life documents since our spouse is no longer capable of handling that responsibility. 

Sometimes exercising power is being candid with our children about the progression of dementia. No more saying, “Oh, we’re managing.” It’s being able to say, “He’s afraid of water and won’t get into the shower.” Or, “He went outside and took off his clothes.” Or, “I had to call poison control because he ate a candle.” 

Don’t be a martyr. I suspect a lot of the caregivers in the 40% of us who die first are martyrs. 

Have you read the book, The Boy, the Mole, the Fox, and the Horse by Charlie Macesy? It’s an illustrated book about the friendship that develops among the four characters. Because of the pictures and the simple story, you might think the book is for children. Yes, children enjoy it. But, let me tell you, this book is for grownups. 

There’s a passage I imagine was written with caregivers in mind. In it, the boy asks the horse– the biggest of the four:  “What is the bravest thing you’ve ever said?” And the horse answers, “Help.” The horse continues, “Asking for help isn’t giving up. Asking for help is refusing to give up.” 

Write that down. Tape it on the bathroom mirror, on the door of the refrigerator, on the dashboard of your car. “Asking for help isn’t giving up. Asking for help is refusing to give up.” 

In an earlier episode, I talked about a 2018 study of family dementia caregivers and the effect of stress on their mortality.  The results of the study suggested that whether or not a caregiver thinks she can handle the situation plays a huge role in whether or not she will survive. That’s why when I was caring for Dick, I made a point of recognizing those situations, large and small, when I felt I had some measure of agency, of control, of power…and when I felt helpless, I asked for help.  

Thinking back to the questions I listed at the beginning of this episode, let me give you a few answers I learned in the support group I was in at the time:  

• My husband won’t take his meds. / Crush them and put them in applesauce or pudding. If he’s taking antipsychotics, make sure you don’t use the pill crusher for anything other than those meds. 

• My husband rolled off the bed. / Get a good bed rail. I found the Stander EZ Adjust Bed Rail online. I bought it in 2019. It’s around $125. It kept Dick safe at night for the next three years. Here’s a link to the one I chose. 

https://www.amazon.com/gp/product/B000GUFFQS/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1

• He has hallucinations – soldiers on the stairs, horses in the street, strangers at the dining room table. / Don’t argue with him. Meet him where he is. Because, in his mind, those soldiers, horses, and strangers are REAL. Instead, comfort him if the hallucinations are disturbing. Otherwise, ask him simple questions: Are the strangers nice? Are the soldiers tired? 

• He woke up screaming. What should I do? / Comfort him. Assure him he’s safe. Say the same words over and over again, not just that one night, but all the nights to come. I would say, “Honey, it’s alright. We’re safe. Our home is safe. I might hold his hand, or stroke his head, or put my arm around his shoulder. Touch is an expression of what’s in the heart. 

• I’m angry! I need help!  / Leave the room, even for just a few minutes. Step away from the emotion. Shake it off. Literally shake your shoulders, your arms, your hands. 

If you don’t do so already, listen to the podcast “End of Life University.”  On it, Dr. Karen Wyatt shares real talk about life and death. On episode 405, she talks about the stress-relieving benefits of deep breathing. This is a short episode, just over 8 minutes. The information is valuable. Go to EOLUPodcast.com. Search for episode 405. Listen to her other episodes, too. She’s worth your time. 

My dementia support group met recently. I told them I was going to do an episode on support groups and I asked them why they thought our group has been so successful. They all commented on the fact that we are four strong women. That we are. 

I asked what they value most about the group. One woman said we can bring up topics knowing we haven’t thought them through yet because we want the perspective of the others to help us come to decisions.  

Another woman said the group is a safe place to talk, to ask questions, to vent.  

It might surprise you to know that the four of us don’t know each other outside of the group. We have never met in person. So we pondered the question: What allows us to open up to each other the way we do? Two things: 

1. After meeting for 90 minutes twice a month for 10 months, talking about some heavy issues, we’ve come to trust each other. 
2. We need the emotional support that can come only from someone else who is or has been on this family dementia caregiving journey. 

It might take you a few tries to find the right group for you. 

Start by looking for groups on Facebook or Reddit. If you’re worried about your privacy, use a fake name. You don’t have to comment. Just lurk. 

Go to the Alzheimer’s Association website.  https://alz.org.  At the top of the homepage you’ll see a dark purple banner. Look there for “Help & Support.”  Click “Caregiving.” Scroll down till you see “Support Groups.” There’s a search tool there that can help you find a local support group, or direct you to an online group. 

Be sure to explore the website. You’ll find information about the stages of Alzheimer’s. That information was key to my sanity. I needed to know where my husband and I were on the journey. I understand that the disease doesn’t progress in exactly the same way for everyone…and that makes everyone’s journey a little different. Still, there are recognizable markers of change. 

Wherever you and your loved one are on the journey, you will quickly realize that you are not alone. Others have gone before you. They have stories to tell. Others are coming after you. They need your stories. 

So don’t give up. Be open to trying something different. A lot of groups are meeting in person now. Don’t be afraid to walk in. 

If your parent is caring for a spouse with dementia and you want to do something to help, listen to this podcast together. Use it to start a conversation.  Ask your caregiving parent: Is that how you feel, too? Tell me what worries you the most? Let’s make a list of things I can do to help. 

While you’re exploring the Alzheimer’s Association website, you might come across this statistic:  Between 2000 and 2017 deaths from heart disease have decreased 9% while deaths from Alzheimer’s have increased 145%. 

Consider how that statistic affects family dementia caregivers, since approximately 40% of us die first.

I mention that statistic in every episode. Is it scary? It sure is. We need to know what we’re up against. …And that brings me to something encouraging I found on the Alzheimer’s Association website. 

Vanderbilt University is doing medical research about how unpaid caregivers (usually family) utilize online resources to find support. As part of that research, Vanderbilt is conducting a survey asking caregivers about online platforms they use – Facebook, YouTube, TikTok, Reddit and others. As I understand it, the researchers want to find ways to make these online platforms truly helpful for us – the family dementia caregivers. I’m encouraged. 

I also discovered RoadScholar.org, a nonprofit organization dedicated to helping adults travel and learn something along the way.  Road Scholar is offering “Caregiver Grants” of up to $1,500 to help unpaid, adult, family caregivers –at least 50 years old and living in the United States – find respite in travel through one of the trips that Road Scholar offers.  You can also apply for the grant if you lost a loved one in the last two years and you haven’t already received one of the grants. 

As family dementia caregivers, we often struggle with our inability to do an impossible job without a mistake, let me share one more quote from the book, The Boy, the Mole, the Fox, and the Horse:  The mole says to the boy, “Being kind to yourself is one of the greatest kindnesses.”

How can we be kind to ourselves? 

• Take a shower when your loved one is asleep. Yes, that can make for some unusual shower times. Do it anyway. Linger under the water. Let it wash away your frustration, your fear, your regrets, your sorrow. 
• Think about your loved one and draw a heart on the palm of your hand. Then press that hand to your heart. 
• Fill a glass with your favorite beverage (non-alcoholic). Bend your head over the liquid and say “Patience.”  Note, this is not an affirmation of: I am patient. No. You are infusing the liquid with patience. Then drink the beverage. I did that little ritual almost every day for three years. It helped.  

If you know someone who needs to hear that bit of wisdom, someone who might benefit from joining a support group, someone who needs to know what you’re going through, please perform an act of kindness – for yourself and your loved one –  and share this episode. 

Finally, if you’re the one on traveling this caregiving journey, when I say take good care of yourself, those words aren’t fluffy. They’re fierce. We need to survive. 

Thanks for listening.