Updated: Aug 29, 2022
When we think of Alzheimer's we seem to only think of the people suffering from this disease. Somewhere along the line, we forget to think about their caregivers. We don’t think about the emotional, and physical toll it takes to be a caregiver to your parent or your other half. What it might feel like to watch the person, who means the world to you, go through this disease.
To find out more about caregivers, I joined multiple dementia caregiver support groups to find out more about their struggles. In that endeavor, I ran into Greg Hill. A retired athletic director, whose wife is living with dementia. As he puts it "I’m just an ex-coach, former athletic director caught in a very difficult situation of slowly losing my girlfriend. "I’m just an ex-coach, and former athletic director caught in a very difficult situation of slowly losing my girlfriend."
I’m just an ex-coach, former athletic director caught in a very difficult situation of slowly losing my girlfriend.
So I guess the first question is, how did you meet your wife? How did you guys get to know each other?
You gotta go back to the 1960s. When I moved to the same hometown that she lived in. We were fifth graders then. As I've told other people, boys think girls have cooties at that age, so I didn't pay much attention to her… but in the eighth grade, we decided that maybe we ought to go to a movie. I had a friend that I considered more worldly, he was also an eighth grader so, in reality, he didn't know anything about love. He told me that to ask a girl, to kind of go steady, that you had to tell her that you loved her. So the first time I told my wife I loved her was November 5th, 1965. I didn't have a clue what love meant at that time really, but we stayed as a couple all through high school and college and got married in 1972. Two days ago was our 50th, our golden wedding anniversary. So, we've been together since we were children. She's supportive and loving, and she did a good job as a mother. People, say, “How can you stay married for 50 years?” I said, Well, you have to marry someone who's your best friend. We just enjoy doing things together.
I was the team captain on the football team, and she was the prom queen. Her name is Jayne Ann and mine is Greg. I can't tell you how many times people have called us Jayne and Greg Ann. Usually, when they say one name they say the other.
So moving a little bit to the dementia side of things, when did you start noticing the changes in her personality and the way she went about the world?
For most people, there are some subtle changes, in a person that has dementia long before it's diagnosed, that you may just think is the person changing, or they're getting older. So, you kind of write some of these off. Once it gets serious enough, that's when you start noticing that things are not normal. She's getting lost, and that sort of thing. You know, my sister after a family reunion came up to me, and she said, “what's wrong with your wife?” And I said, “did you notice something too?” She said, “We're all noticing it, you need to go have a doctor take a look.”
In 2018, they officially diagnosed her with the cognitive disease that we believe is Alzheimer's. When I think about that, and then I can look back you know eight or 12 years ago, about things that she was doing differently. I think there were early signs that something was different, that something was off.
Looking back at it now, what were some of these changes that you saw?
I was usually working long hours as an athletic director, so she had always done the finances. Then we started getting late bills, and missed payments. That can happen once in a while to anybody, but it was happening more often. I said to her, “Well, why don't I just take it? Would you like me to just take over paying all the bills?” Yes.
Looking into it, I started to see that there were some other issues too. I found out I kept getting this monthly bill for some kind of wrinkle cream. Supposed to make you look younger, about $60 a month. They tell you that you have nothing to risk, because in the first 30 days if you call in and tell them you don't want to get it anymore, then they'll cancel it and refund the money. Well, she (Jayne) caught that part of it. She just thought that they were sending this stuff for free. So for several years, I found out as I looked into it, that she was getting these bottles. After she moved into a memory care facility, I opened a drawer and it was full of creams that had never been opened. She had never been taken advantage of before, and here was an error, and it was costing us $60 a month. It took me quite a while and a lot of threats to get them to quit sending this stuff… So it's things like that, kind of hoarding. Probably there's $3,000 worth of stuff in that drawer.
So in 2018, when you got this diagnosis, you hear that it was a cognitive disorder. What was going through your head?
Well, in some ways, you're often glad that somebody is finally putting something down on paper. So it's not like you're shocked by it. However, they usually follow that up with “… there's no cure, and it's fatal.” So, that's a bad feeling to have to get that kind of a diagnosis, but it kind of reconfirms what you already knew.
If you're spending all your time with someone, you haven’t been told anything that you didn't already know was an issue. You just hope that it’s “oh, we've taken an MRI, and there's some kind of an infection, and we can we can put an antibiotic and next thing you know, she'll be fine.” That’s the hope you know, but in the back of your mind, I think you pretty much know. You know there are six and a half, 7 million people, in the United States with Alzheimer's and other forms of dementia. You'd think there would be some real efforts in the legislature to find the money to invest in a cure. That number is gonna be 10 million Americans in just a few years. That's 10 million people that have a terrible disease, but it's also 10 million families that are trying to hold everything together.
That numbers gonna be 10 million Americans in just a few years. That's 10 million people that have a terrible disease, but it's also 10 million families that are trying to hold everything together.
The person that you've grown up with, has changed so much in the last few years, what goes through your mind when you see her go through this challenge now?
Adapting to the disease is not something terribly difficult for the individual with the disease unless you get a diagnosis so early. I think the majority of people, by the time it's diagnosed, they're at a point where they don't cognitively understand what the problem is. The one that has to change is the caregivers, and the family, you have to be in their world a little bit. It's not so much of a challenge for the person with the disease. Although I consider them brave heroes for fighting as hard as they can to stay normal. But to adapt to it, I think it's more on the shoulders of the caregiver to adapt.
What difficulties have you found in adapting to this?
You know, this was supposed to be our golden years, we were going to go to Hawaii on our 50th wedding anniversary. We were waiting for this window of opportunity to be able to do all the things that we wanted to do before, but we're so busy working and raising a family. Well, instead of going, I decorated her room in our memory care facility with some Hawaii decorations. I'm not sure that I think she understood that there was something to celebrate. I don't know that she knew why or what the significance of it was. So you have to learn and adapt to not get angry when they are making decisions, or saying things.
You have to try to not be hurt when they don't know who you are. When it's someone you love and care about it’s hard when they don't know who you are. When they want you to get out, or you know whatever the situation, you have to learn that it’s fruitless to argue with someone whose brain is shrinking. They don't have the capacity to articulate and trying to convince them “this is how you should do it, always do it this way..” they get to a stage where they're not going to remember how to do it and they're not going to remember the instructions you gave them.
I was introduced to you on the Facebook page for dementia caregivers, via these daily journals that you post, which I genuinely loved. It gave me a good outlook on what a caregiver goes through.
What inspired you to want to start these daily journals and start sharing them?
Well, emotionally it is difficult to handle the most important person in your life slipping away from you. So, somebody suggested journaling…I started writing down what was going on daily. I did it partially because it made me feel a little better, and partially so that I can look back on it someday and kind of be able to read through the steps and stages. Then one day, somebody suggested I join a dementia Facebook group. After several weeks of just watching the things that people were posting on there… I posted what was a private journal entry on the Facebook website. Hundreds of people wrote back and replied that it really helped them. They would like for me to post more frequently… Before I knew it, I was posting it every day. And then somebody would come on and say, “Hey, I'm in another dementia group, they need to read this. Why don't you join this Facebook group and post the journal on there?” Well, one went to two to three to four, and now five. If you add up the number of people that are members of these Facebook groups, the totals are about 40,000 people. So I get comments from really from all over the world that, that I'm making a difference in their life, and I'm giving them hope.
Some days I'm writing how sad and upset I am about something, I do Saturday humor, and some days I'm being my former self, the coach and athletic director, and trying to prop them up a little bit.
Now you got people from England and Australia, that are making comments about it. I'm not a professional writer, but people keep saying “Why don't you have a blog or write a book or something?” I don't know where it'll end up. If I'll take all these postings, from what might be an accumulation of two or three years, and make this into a book? I don't know. I mean, would it help? Not interested particularly to make money off of it, but if it would help people, I'd be hard-pressed not to want to help them.
One of the biggest things I do see in the groups is people saying, “I want to put my mom or this individual in a home”, but they just can't get over that guilt. What would you say to this individual or just caretakers in general?
You have got to do what is best for them, and if it is best for them and you can afford it, then do it. Even if it's uncomfortable for you or if you've got this fear that other people will point their finger at you, and they won't, about giving up on your loved one and putting them in a facility. Those facilities have around-the-clock care, aids, nurses therapy group, speech therapy, pair therapy, and physical therapy. One person can't take care of somebody as well as a large group can. In many cases, it's better for them. It was the hardest thing I've ever done, taking my wife there for the first time. It's still hard. It's been 11 months. I come home to an empty house. Yeah, I've got I've gotten real friendly with smart devices. Alexa, you know, turn on the lights.
I turn on the music and lights before I come into the house. Because before I came in, my wife was there. And now it's dark and quiet. If you would have shown me a movie about 10 years ago, about what my life would be like as a caregiver. I don’t know what I would have done. It would have been such a shock to the system, that you might have been looking for a tree to drive into, with both of you in the car, or off a cliff or something
Because this is very very difficult, but you get accustomed to it little by little and you learn from it. By the time you are at the end of this, you are a little bit wiser. Just stick with it.