Supporting Caregivers

A Caregiver’s Point of View

This interview was conducted with Judy S., a wife and caregiver of her husband John S., who recently passed away from deterioration related to Parkinson’s Disease.

Judy cared for her husband with PD and Alzheimer’s at the same time as her son with Down Syndrome for over 30 years. While taking care of her loved ones, Judy found no time to work and take time for herself. The following questions and answers are from an interview with Judy S. in 2025.

1. What were the biggest challenges you faced as a primary caregiver for John?
   “Well…being his wife, it was watching him deteriorate, and that just killed me. There was nothing I could do about it, and it was really stressful in the beginning because he didn’t want to accept it. He kind of would…get angry because he knew it was going to get worse. It is just a horrible disease…John did take the medicine though, but the drawback was he started to gamble, because the medicine makes you want to overdue things that you like. A lot of times it is sex, spending money, gambling, just different stuff.
   
   I didn’t realize this, but he was going over to the casino, and we lost a lot of money, and it took a long time for me to realize what was happening. So…that kind of made me angry and that was another drawback to the disease because I had to start saying, ‘you cannot go anywhere.’ Well besides the fact that he was really forgetful and didn’t know where he was most of the time, he would take off with the car.
   
   Due to this, I finally had to say, ‘well you can’t drive anymore.’ You know, I was the bad guy, and he started getting angry with me and would say, ‘what? You aren’t going to let me do anything?’
   
   And I said, ‘well you know, you don’t know what you’re doing,” and he said, ‘well I’m not a man anymore then.’ And I would tell him, ‘Yeah you are but you are a sick man.’
   
   And that was hard, you know, just watching him go backwards in life, it was really stressful. He became like my child, and that was hard. We had to put so many restrictions on him to do things, and then you know, he started falling. And then I worried about that with him being forgetful, and when he did go out, he started riding a bike. He had a three-wheeler bike which was good for the exercise, but he’d run down to the little store that wasn’t too far from our house, and he would buy scratch tickets, so there we go again. It wasn’t easy, and just watching him fall apart was hard, and it probably would have been a good idea for me to be able to get away from him every once in a while.
   
   And I can understand why the caregiver can go crazy, because you know I also had Travis (her son with Down Syndrome) to begin with, who do I watch first? Who do I deal with first? And you know, every time I had to take him to the VA, because that is where he got his medications and what not, I had to take Travis with me, I had to drive both of them. That wasn’t easy, so yeah, it is very stressful, and it is just hard when you love somebody…to watch them fall apart. A lot of people didn’t understand that…my parents really didn’t understand that.
   
   They kept saying, ‘how could you stay with him? Look at the way he is, you can’t trust him,’ but when you love somebody, you make it work, I mean he was sick for Christ’s sake, it wasn’t his fault. He was sprayed with agent orange and there you go, and so many of the guys I’ve seen at the VA were just like him. He operated boats up and down the rivers taking guys and supplies to the different posts (in Vietnam), and that’s where they sprayed (Agent Orange). At the end, it was the worst because he hid the fact that he wasn’t eating and I didn’t know that until after he died. I found all the food in his dresser drawer, and that just shattered me because I realized why he was getting so thin.
2. When you were a caregiver, did you ever utilize local resources? Where you ever informed by the VA of different things you could do.
   
   “Well yeah, I had a number I could call to talk, but you know, what am I going to do? Get a babysitter? You know, I wasn’t going to leave him.”
3. How did you learn to care for him? Was it trial and error? Did you ever try to take any informational courses about how to specifically care for someone with PD? 
   “Well actually, John is the one that when he first found out he had Parkinsons, went online and get a lot of information about it, and that was kind of a good thing and a bad thing at the same because he knew where he was going to end up. And you know, he would show me the stuff so I knew too what was going on and I would realize, it is not his fault, but I still had to get on him about not doing bad things and having to be careful.”
4. Are there any tips or tricks you learned to care for him that you would like to share with other caregivers?
   “Well try to find something that they are able to do to keep them busy, to keep their minds going. I would take him out for outings and stuff, him and Travis both, and walk around and look at stuff. He would go to the store with me and stuff like that. What really helped me too was at the time I was going to church, both of us were, and that gave me an outing to be with other people, and it also helped to know that I had a family of people there that understood and gave me support. They were the ones that helped a lot.”
5. Were you ever able to find time to alleviate the burnout on yourself and find time for yourself and your own mental and physical health?
   “There was just no way. For me, with the two of them, no way.” 
6. Are there any stories you want to share about your experience with John? 
   “There were so many things that happened during that time. You know, he didn’t understand a lot of stuff that was happening in real life, that I had to deal with. He didn’t understand what was going on, in fact he kept saying that I was meeting somebody (another man). And I said, ‘uh no, I don’t have the time for that.’ You just gotta, you know, sometimes laugh it off. That is about all you can do.” 
7. Did you ever work any other jobs while being a caregiver and, in your experience, do you think it is possible to find time to do that?
   “Absolutely not. But I did volunteer at the school that Travis went to so I could keep an eye on what was going on with him at school.”
8. What were the biggest struggles in trying to balance your caregiving with your son and husband at the same time? Were you able to get more support since you were caregiving for multiple people? 
   “Well, I did have somebody that started coming in for Travis which did help because it helped him get a job at Mcdonalds and he got a position at a cat sanctuary where he went in and helped with the cats, and this girl would take him, and he really liked that. So, one day a week that is what he would do so I would get a break from having both of them. John would drive out there with us, so he knew where he was at, and so then John and I could go for a ride and do our thing.”
9. Do you have any advice you’d like to share with other caregivers or anything else you would like to share in general? 
   “If you have somebody that can come in and help watch so you can get out and do something that you like to do, that would be wonderful. It would take a lot of stress off of you, so yeah if there was a program that you could get somebody to come in and watch for an hour or two. I did hear about a daycare for seniors, but the program was never offered to me, and I don’t know if that would have had to come from the VA or out of pocket.”