By: Samuel Van Camp,
Political Communications Intern for the Eldercare Workforce Alliance
I set out to conduct this interview after I made a strong connection between the work I am doing as an intern at EWA and the experience my mom’s immediate family had, as family caregivers for my Granddad and my aunt, Janet Dekker living with dementia over 17 years. My mother, Jenny Van Camp (nee Dekker) and her siblings in the Dekker family as well as my Grandmother, Margaret Dekker were interviewed. In addition to my mom and grandmother, I spoke to two uncles, Danny, and John Dekker; two aunts, Kathy Dekker, and Claire Saban. This care team has provided care for Grandad and Aunt Janet since they were diagnosed with dementia. The first my grandfather, Bill Dekker, who was diagnosed in 2004. And Aunt Janet, who was diagnosed with dementia in 2011. Both my grandad and Aunt Janet were cared for at my grandmother’s house in Fremont, California. My two uncles and grandmother lived there and provided around the clock care for them from 2004 until my aunt’s passing in early 2021. The rest of my mother’s siblings would rotate days of the week, to visit for the day and provide care to Janet and my grandad. For example, my mother visited every Tuesday and Thursday. Their experience holds significant value to anyone looking to learn about what it means to be a family caregiver, or what it looks like to care for someone living with Dementia. A recording of the interview with my family can be found here: Dekker Family Caregiver Interview pt.1, Dekker Family Caregiver Interview pt.2
Who did you provide care for and what were their conditions?
Jennifer Van Camp: We cared for two people, back-to-back. The first was my dad, Bill Dekker and we cared for him at home from 2004 until his passing in 2011. He had FTD or Frontotemporal Dementia. In 2011 my sister, Janet Dekker began to exhibit symptoms like what our dad had exhibited at the beginning of his disease. And she moved into our parents’ house a few months before our dad passed away. We cared for her until she passed in early 2021. It’s been long process and we all (the family) pitched in to provide care.
Talk about the transition into becoming a caregiver. When did you first realize that you were a caregiver? And what was that process like?
Claire Saban: It was a slow process. It really was just taking care of your dad. And that is all it was. Go over and take care of him for a couple of hours. We all took turns and luckily there is a lot of us. For me, I never felt much like a caregiver to him, I just visited a couple of days a week and took him for a drive or something. For my brothers and mom their may have been a more significant caregiver experience because they lived their with him and with Janet. I just came a couple of days a week.
Kathy Dekker: And it was very gradual. I feel the same that I was not a caregiver at that time, but you just went over to support and do what needed to be done. And I think with dad we did not have a full understanding of what was coming, with Janet we had an idea. So, it made it even more gradual because with Janet we were able to prep for it in a way but with dad we did not have experience so there was not one set time where we recognized ourselves as caregivers we just helped along as best we could. Its important to note that our family is large we have 12 siblings who were able to help out and support, so our experience maybe different than others because of that.
John Dekker: The term caregiver, I think its something that the outside world calls you, so you don’t see yourself as that, you are just doing it. For example, I applied for a job and in the interview the interviewer mentioned that another candidate was coming off a stint as a family caregiver. And I thought, “Well I’m not a caregiver”. But I guess that is how the outside world looks at us. I am still not sure that caregiver is the correct term, but I obviously am as far as the world is concerned.
Danny Dekker: Well, a lot of people are caregivers, anyone with a child is a caregiver. And everybody takes care of family, its just what you do.
Can you talk about the type of care that you provided for Grandpa and Aunt Janet i.e. Medication, services, therapies? What was a day of caregiving like for you? Was any, or all, of this care particularly difficult? Which parts?
Danny Dekker: You just take it as it comes in terms of what needs to be done, and you find a routine that works. We certainly gave them medication, at least a couple of times a day, that the doctors prescribed for whatever issues had come up. Just like anything else you have to get them dressed in the morning, give them their medication, feed them, take them to the bathroom, shower them. When they were more capable, we would take them for a walk or a ride. But you just work it all into a routine what works best for you and what you think is best for them. You might find you have to adjust it, but you have to adjust your whole life.
Margaret Dekker: At some point we had to figure out how to give the medication that they did not want to take. When my dad, who did not have dementia, was living with us we gave it to him with ice cream. With Janet we ended up having to crush the medication and put it into the straw of her smoothie, because neither Bill nor Janet would cooperate with you to take the medicine. During the day we always had Bill and Janet on our mind. Everything we would do was around, “Is there somebody with them?” Everything you do from when you get up, to when you go to bed, involves the person you care for. For us, because it was gradual, nothing was a shock to us. If people came in off the street it might seem strange because as their condition went downhill, we became stronger. You don’t think about it, you just do it. We did not think about ourselves as caregivers, but we definitely were.
Dementia is a degenerative disease, how did care requirements for Aunt Janet and Grandpa change as the disease progressed? Did you find that you had to adapt and learn as new symptoms arose?
Jenny Van Camp: At the beginning I felt like I was going a couple times a week to give them (Margaret, Danny, John) a break, as opposed to giving direct care. I was going down to Fremont to make sure they had what they needed. But then as dad’s condition progressed, I became more of a caregiver. But at the beginning I felt like I was there more to visit with you guys. Even if I was not providing as much direct care until closer to the end.
Margaret Dekker: You were caring for the caregivers.
Kathy Dekker: I felt the same way, especially with dad. I was there more to visit with him and be with him. Also, to be there to give support if he needed to be fed or something else that I could do. But with Janet, I was much more involved. It is almost like caring for a baby, as things changed along the way you just adapted and changed how you cared for them. You do not even think about it, you just react.
Danny Dekker: In terms of care, you would just try things, and if they did not work, you tried a different way and adjust. The fact I was there more often because lived there, people coming in and helping out. It helped a lot, having all the people around. And it was not what was best for you, but what was best for them. Because the main goal was for them to be comfortable.
Claire Saban: And there were a lot of opinions. And we had to take everybody’s opinion into consideration when we made some of the decisions, not all, but some. But we mostly tried to take Danny, John, and Mom’s opinions into consideration because they were the ones there 24 hours a day.
John Dekker: And you need the opinions whether you want them or not. It forced you to constantly reevaluate the care you were giving, which everyone was doing anyway. There was a constant evaluation of what you were doing because you just want to do the best job you can. That means often accepting the new issue that you are dealing with and handling it the best way possible.
Margaret Dekker: Having us talk about it and look back on it, we see it differently than when we were doing it. I appreciate the fact that we can get together and think about it. Because we didn’t think about when we were doing it. In hindsight, we see that we came together, that we were a team and we have differences of opinion. And you see a lot of funny things when caring for someone, and its alright to laugh about it and to share that with each other. And it is important to remember that we are taking care of the whole person not just the body, life is funny, and it is OK to laugh and enjoy moments. That’s what keeps you going.
What impact did providing care for aunt Janet and Grandpa have on you? Physically, Emotionally, Mentally?
Kathy Dekker: The emotional part was much more difficult. Not knowing what was comfortable for her and her not being able to communicate to us about it. So, I was constantly thinking, “Is her arm hurting?”, “Should I move her?” Because she can’t tell me and if her arm hurts the way mine does when I sit like that then she might be in pain. So, for me that was the constant struggle for both of them. And it gets worse at the end because you knew you might be putting her in an uncomfortable position. It got emotional when you had her by yourself because that’s when you realize the loss. That you were losing the relationship with her. But it was also the best time because we still had our moments together. They were different than before the disease but still our moments. The physical things were no problem, both physically ad emotionally, losing them was the hardest part.
Margaret Dekker: One big difference between caring for Bill and Janet was that the care for Bill was much more physical. Whereas Janet was more passive. At times the boys were physically having to control Bill. Janet did not battle with you as much. That makes a big difference for how you cared for them.
Margaret Dekker: We also hired care at a certain point for Bill. We were able to hire someone to come in and help with care.
Claire Saban: We also had to wait until we were ready for that. Because that is like another level.
How was that decision to hire outside care reached?
Claire Saban: I think for everybody, we were concerned about how the caregiving was affecting mostly mom, Danny, and John. And we also had to make sure that they were comfortable having someone come into their house and provide care. Because you watched the wear on them, and it was very difficult.
Jennifer Van Camp: Sam, I can tell you that I wanted care earlier, at no point did we want them to be anywhere except for their home. But watching the impact on my siblings and my mom. I wanted them to have help because I could see that it was taxing them so much, as caregivers, and they just wanted to do the care themselves. And they felt like they could do it. Because we all have such a good relationship, we all wanted to be there for Janet and dad. But I could see that they had completely put their lives on hold to be caregivers. Stopped working. Stopped going out. Because it really was around the clock care, to the point where somebody had to sleep in the room with Janet and dad. I could see that they were not eating, were not as active, they had smaller social circles. Because the person at home is their number 1 priority. And I wanted them to have some more support.
John Dekker; I think also when we made the decision to bring in outside help, the disease had gotten to a point for dad where he wasn’t really recognizing us as much. At that point we kind of realized that someone else could be doing as good of a job and it did not need to be us specifically. At a certain point it did not matter to dad if it was a stranger watching him or us because he did not recognize anyone by that point.
Margaret Dekker: We were very fortunate that the people we brought in we very dependable and kind. And I was comfortable with the person who was providing care for him. That when I left to go out to eat, that I felt those people were taking care of him and not just parking him in the corner and ignoring him.
Danny Dekker: Having help was huge. We have a large support system. And we still needed a break. When Jenny or Claire would come down, just being able to go out into the yard to mow the lawn without worrying about them was huge.
Kathy Dekker: I t really is 24-hour care, because it was early on in the disease that Janet fell out of bed and broke her nose and broke her arm. So, it shows how they really need 24 hours of attention. For us we are lucky enough to split it up amongst our large family, I don’t know how other people do it.
Margaret Dekker: And that makes me remember that was why we hired outside help. So that we could mow the lawn, I could take a shower, I could call someone on the telephone.
Danny Dekker: If we did not have a family support system, to suggest that we get outside help for care, I don’t think we would have done it.
Jennifer Van Camp: We talk about it all the time, that we can’t imagine how people who do not have as large of a family as ours do it. Or if you don’t have a great family relationship, how difficult that could be.
What were some of the other resources you utilized to educate yourself on this disease? (Classes, Books, Seminars, Support groups) Were you able to find benefit in advocacy groups or organizations helped you through your time as a caregiver? Do you wish there were more support resources?
Margaret Dekker: We did go to an Alzheimer’s support group, even though our family did not have Alzheimer’s. There we heard stories about people who had a very difficult situation. And that made kind of recognize how lucky we were to have the support system we had. There were some people at that program who really did not have anybody it was just them and the person they were caring for. So how do we help those people? Because they really need it.
Kathy Dekker: And at that program, mom and Danny were able to share some logistical things with other caregivers that the program did not necessarily touch on. Stuff for day-to-day like, how to keep them calm when you are showering them, how to sit them in a chair when they are fighting you to sit in the chair. A lot of that we kind of figured out on our own, and the program did not provide a lot of that type of information. Although I think things have changed a lot.
What was your experience with the healthcare system throughout your time as caregivers? Did you feel like your voices, questions, and concerns were being acknowledged? How was treatment and care paid for?
Kathy Dekker: Well, I remember taking dad to a doctors appointment, well it happened with Janet too, and telling the doctor that dad was anxious. And he kind of talked over us about it, until dad tried to take the sink off the wall. With Janet, I was staying with her at the hospital after her first seizure, and the nurse kept giving Janet directions. Well, she couldn’t really comply with any directions at that point in the disease and the nurse got upset with Janet because she was not following his directions. I think that just comes from the ignorance that people have with the disease.
Margaret Dekker: Janet had disability from social security and that paid for a lot of what she needed. Luckily anything else that we needed we were able to pay out of pocket. Hopefully the training for caretakers of dementia patients has improved. Most people we had were very good. But some of them did not understand dementia. They might say, “Oh I know what you are going through my grandpa repeats his stories”. It’s not the same. You are losing this person inch by inch. People do not realize how deep dementia is. And people who deal with them really have to understand that the whole person is disappearing. Although sometimes Janet would look at us like, “What are you thinking people?”.
Claire Saban: Janet was lucky because she had a savings. So, if anything was not covered that’s where the money came from. And her medicine was the majority of the cost. She was only the hospital a couple of times. I would say that her social security disability was enough to pay for her medicine, probably not much else. Most of her medicine was not covered by insurance.
Margaret Dekker: What kind of financial support you get and how do you get it, needs to be simplified. Because we were able to pay for anything that was not covered or paid for by social security out of out own pockets. But for the whole issue, a family of 14 is not common. There needs to be a better job done of, letting the people who need it know, that there are funds out there and that there is support out there. The information needs to be out there for people to find.
Kathy Dekker: For example, Sam, I thought that you had to be on death’s door to get hospice. But we benefitted for a long period of time from hospice care. Something to also stress is that most of the caregivers we had during hospice were understanding that in a lot of the care Danny and John knew what was right for Janet. And they were open to that, they did not seem to come in and tell you how you have to do it. I think that is really important that the caregivers know that the family know the person and know what is good specific to that person.