You are not alone: a support group for caregivers of people with dementia

Story and photo by Alice Gerard

Jim and Mary Pinckney both experienced the challenge of living with a spouse who had dementia. Jim’s first wife, Elaine, was diagnosed with frontal lobe dementia at the age of 60. Seven years later, she passed away. Mary’s first husband, Larry, passed away at 72 after a long bout with Alzheimer’s.

Mary and Jim met through a support group for caregivers of family members with Alzheimer’s and other forms of dementia. Approximately five and a half years ago, Mary and Jim married.

Residents of Florida, they have spent the warmer months on Grand Island and have started and facilitate an Alzheimer’s and dementia support group for caregivers. It meets from 10 a.m. until noon on the first and third Tuesdays of the month at Bible Fellowship Center, 1136 Baseline Road.

Future goals for Jim and Mary Pinckney are to organize and facilitate a Zoom support group for people who are unable to attend in-person meetings.

In 2017, my mother, Roslyn Gerard, was diagnosed with Alzheimer’s. She died in late 2020 at the age of 99.

Dispatch: What motivated you to get into establishing this support group?

Jim: In Florida, we have lots of support groups down there and, while Elaine was going through this frontal lobe dementia that she had, I would go to classes with an organization that was an Alzheimer’s/dementia resource center. They had courses on how to care for your caregiver. How to be a caregiver. They would facilitate these meetings, and I would go to them, and my kids would watch my wife while I would go to learn how to take care of my wife. During that period, I was with a men’s group, as well. With the men’s group, I became a facilitator there, helping men with their walk.

Page two of the story was about my wife passing. The care group said, “Jim, you’d better get away and get some respite or you’re going to die before your wife does. The stress is getting to you. We see it.” So, they said, “We have a respite group that is meeting. You should come to it and get away.” I signed up six months in advance to go.

In the meantime, she passes. I called the group and said, “I’m not going.” “Oh, yes, you are. You are a caregiver. This is respite. You come.” I went that night. It was only five weeks after my wife passed.

Mary: My husband, Larry, had Alzheimer's and a number of other dementias. I had been dealing with dementia for over 20 years. As I was dealing with Larry, I didn’t understand that what he was going through was an illness; and I didn’t understand that what I was experiencing was something that other people were experiencing.

Getting into support groups was very, very important to me. I just had to go to the different meetings and see the chemistry between us and how the facilitators were able to allow us to express our feelings. And these are feelings you don’t necessarily express with people that don’t have dementia in their lives. You have a different reality and people who haven’t been exposed to that aren’t aware of what you’re going through, so you don’t tell them things.

Dispatch: What was it like to take care of a loved one who has dementia? What was your spouse’s behavior like and how did that affect you?

Mary: The doctor would work with me and prescribe medications and all that, but it was like he’s just being really mean and very contrary. Ornery with a capital “O.” He suffered long.

I did not know Elaine but, from what I’ve seen in pictures and from what I hear, Elaine’s dementia was a quieter lack of being able to remembering being able to do things. Jim would wash her. He would dress her. He would feed her. I almost wish I had that experience, because my experience was of a wonderful, kind, gentle man who turned into an abusive monster. I was afraid to live with him.

Being in a support group was very important to me. I had been in a support group for all of those years. My husband passed, and the rest of my story. … I called up ADRC (Alzheimer’s/Dementia Resource Center) to say that I was not going to be going to the retreat that year. I had gone for five years prior to that. I always loved it. We didn't have times you had to be any place. If you wanted to sleep the whole time, you could do that. It was wonderful. I was told, “No, you’re family. You need to come to the weekend.” So, I did, and Jim and I met on that weekend.

We both agreed that we didn’t want this experience to be wasted. It was a progression of not only loving each other, but also a common goal. Obviously, we got married. But it’s been a desire of our heart to help other people who are going through this.

You really never know when dementia starts.

Dispatch: We had no idea with my mother. One thing we learned about her is that people who are very bright and well educated can hide their symptoms for a certain amount of time, and we think she hid her symptoms very effectively so we had no idea when it started.

Mary: The kids loved him. They followed him around. We always had kids around the house. It was so devastating to watch this sweet, kind, considerate man turn into somebody who was very self-centered and then very angry, very suspicious. I had to keep reminding myself, “This is the disease. This is not the man.”

I think one of the cruelest things about this disease is you’re looking at the same person, and you expect the same responses. And you’re not getting them. It’s like Larry moved out and a monster moved in.

Dispatch: Tell me what happened with you, Jim.

Jim: I kept her busy. When I started my business, she became my bookkeeper. She kept my books for 20 years. All of a sudden, I find she can’t balance my books anymore. I didn’t understand what it was. That was my first sign. Other signs were that she couldn’t remember things around the house. She forgot how to cook. I had to take care of cooking. She had no idea of how to dress herself anymore.

My daughter, her husband, and my granddaughter moved in with me to help out. They were my respite, so I was able to go to my classes and do things.

She’d say to my daughters, “Who is that man here?” It would break their hearts. She would eat her meals. She didn’t know how to cook. You talk about memory. I’d be cooking and I’d ask her, “How much salt do I add?” “No, you don’t put salt in it!” “Do I mix it?” “No, you don’t mix it like that.” But to have her do it? Forget about it, she couldn’t do it. I’d always be testing her about what she would remember and how am I doing things. She’d always be there to tell me what I was doing, right or wrong, which was fun for me cooking.

Her memory was gone. I’d put on Sirius XM and listen to music while we would drive. A song would come on. It would tell me who the author was, who the singer was, etc. I’d always come up with the wrong answer. Purposely. She’d say, “No, you’re wrong. That is so-and-so.” It just blew my mind. I would tease her all the time. So anyway, I would take rides with her. It was her comfort.

Mary: It was as you were saying earlier about how, when you’re intelligent like that, you can fake being “normal” when other people are around. I used to get very angry because Larry loved to tell everyone, “Oh, Mary is such an angel.” And then, we’d get home and he’d be mistreating me, saying nasty things to me. It was like, “Who are you? Why are you being so wonderful to people outside, and then, we get back home, and you turn into this monster?”

The doctor said, “He is living through you. When he’s out with people, he has to act on his own resources, but that’s exhausting. When he’s alone with you, he’s comfortable. He’s free. You are part of him.” He used to get very nervous if he couldn’t see me.

Jim: I couldn’t take a step without her being right there with me. I had to be with her all the time. I’d walk out of a room, and she’d follow me.

Mary: We’ve learned over the years that you never surprise them. You always come around to the front and announce.

I came in one time. My husband was in the den. I was still able to leave him and work. He looked at me in horror and he said, “Who are you? You get out of my house! You get out of here.” I turned around, and I walked out. I stood in the garage for about three minutes and collected my thoughts, went back inside, closed the door noisily, and started saying, “Hi sweetheart, it’s your lovely wife, Mary, who has come home to give you a big smooch.” And his face smiled, and he said, “Oh, it’s so good to have you home.”

Jim: No two Alzheimer’s cases are the same.

Mary: Right. Studies of the brain show that you get old and you die with your brain in the status that it’s at. With Alzheimer's, you are becoming younger in your brain. My husband could tell you who he sat next to in kindergarten. When he’d say, “I want to go home,” I really suspect it was the house that he lived in when he was growing up, as opposed to where we were living.

Dispatch: This lady in the nursing home where my mom was in would always come up to me and say, “Is my father here yet? He’s going to take me home.” And I’d say, “He’s not here yet, but I’ll let you know when he arrives.”

Mary: Wonderful. Perfect answer. This is one of the things in communication. You kind of enter into their reality – instead of trying to bring them back to your reality – because where they’re living, your reality doesn’t make sense to them anymore.

We had one family at the nursing home. Her husband had passed away a couple of years ago. Every time this family came in, it was the same thing. “Oh, when is George coming?” “Mom, dad died.” “Oh no!” It was a whole brand-new experience to her every single time. The poor woman had to go through mourning every time.

Finally, I couldn’t stand it anymore. I went to the administrator and said, “Somebody’s got to talk to these people.” She said, “Well, you’re a good one to do it.” And I said to them, “You just can’t keep bringing that up when she says, ‘When is George coming?’ Say, ‘You’ll see him later. He’s busy right now.’ ” And he is. He’s up in Heaven somewhere.

Dispatch: Could you talk about the isolation that caregivers feel when they spend so much time alone with their loved one?

Mary: A good friend of mine who visited the nursing home my husband was in … we became good friends at the nursing home. She came in one day. It was their 50th wedding anniversary, and she was all torn up. She said, “I did something I know I shouldn’t do. I don’t know why I did it.” I said to him, “Do you know who I am?” And he said, “You’re that lovely lady who comes to visit me all the time.” Not “You’re my wife of 50 years, and it’s our anniversary.”

That’s what she wanted. Sometimes, we set ourselves up for hurt.

My first husband’s last nine years were in a nursing home, because he lost his ability to walk. Gradually, he couldn’t use his hands anymore. He couldn’t feed himself. So, he had to be in a nursing home. I had 24-hour care at home. And even between the caregiver and me at home, we just couldn't take care of him well.

Putting him in the nursing home was one of the worst days of my life. But he blossomed there. Looking back on it, I can see why. At home, I was totally exhausted. The caregivers that were coming in 24/7 were exhausted. He had Helen, me and the television. Suddenly, he’s got shifts of people who come and go. He can tell his same stories over and over to those people and they act like they’ve never heard them before.

Jim: There are so many things that we are sharing with our new caregivers. Things to do and not do. We bring them brochures and booklets that we’ve collected over the years. We tell them of another possible way of handling it. Here’s how I handled it. And when you have three or four people in a room, they have different ways. “Oh, yeah, that happened to me, too.”

We don’t want our experiences to go to naught. We’re carrying them forward.