Caring for a Parent vs a Spouse

In this episode, Steve and Virginia explore the emotional and practical differences between caring for a parent versus a spouse with dementia. Virginia emphasizes the role reversal and challenges of managing her mother’s daily needs and finances, while Steve opens up about the loss of companionship and adapting intimacy in his relationship with his wife, Patty. They discuss the importance of communication with family members, the struggle of accepting help, and the emotional weight of caregiving tasks. Their conversation highlights the complexities of long-term caregiving and the importance of maintaining connection, patience, and open dialogue throughout the journey.

Chapters

• 1:14 Relationship Dynamics (Parent)
• 5:52 Relationship Dynamics (Spouse)
• 6:25 Long-term Partnerships
• 11:18 Decision Making with Family
• 16:41 Intimacy with Parents
• 18:57 Intimacy with Spouse
• 21:49 Closing Remarks

Transcript

Steve: 0:06

From the University of California, Irvine. This is UCI MIND's Spotlight On Care, the podcast where we share stories, experiences, tips, and advice on caring for loved ones affected by Alzheimer's and other dementias. Hello everybody, and welcome to today's podcast of Spotlight On Care. Wanted to remind you to make sure that you subscribe to Spotlight On Care, and that'll be the way that you find out when we're releasing a new podcast- you'll get an update. And today, we're going to talk a little bit about the differences between our experiences, both of us who are blessed to have cared for a loved one, but there's a difference between caring for a parent and caring for a spouse. And the more that we started talking about it and thinking about the conversations that we've gotten from all of you, we realized that there were some really unique things that maybe we should highlight in the area of tips, of things you can and should do if you're in those particular journeys, caring for your parent or caring for your spouse. So let's start off today with Virginia. Alright let's talk about category of relationship dyanmics. How did you see that operating for you when you were caring for your mom?

Virginia: 1:24

Well, you know, doing this podcast with you, Steve, it has brought to the surface the fact that there are a lot of differences between caring for a parent and caring for a spouse. And I think the biggest issue for me was the role reversal. My mom was always my mom. I went to her for advice, and she gave it to me gladly. We had a wonderful relationship. It rarely had its downside. Then, with the onset of dementia, I was having to do a role reversal. I almost became like her parent, and then the more she got into her disease, she became more like a child. And it took me, I don't know how, many years, to really get a grasp on the fact that I needed to act more like her parent for safety and many reasons. The differences between caring for a parent and caring for a spouse, I think, are very remarkable, and I often look back and think I could have taken better care of a stranger than I took of my mom, especially in the beginning, because I could get a hold of taking care of somebody else, but this was my mom, so the emotions really kind of messed me up. I had to do this huge mental shift. So not with a spouse, with a parent, many times they do not have a spouse at that point, and they need their child to help with the caregiving at first. And what comes into play are the activities of daily living, bills that need to be paid, food, preparation and purchase, household chores, taking of dailymedications. These are the things that I had to get a grip on with my mom, and you talk about the sandwich generation. I was still raising two kids. After a while, it was almost like another child to take care of.

Steve: 3:35

Let me ask you a question, Virginia.

Virginia: 3:37

Sure.

Steve: 3:38

As you were going through that process, you had to adjust. What did your mom do and what did she say, and how difficult was it for you or for her to accept this, and then what did you do to deal with that?

Virginia: 3:51

Well, you know, the beginning was the tough part, because she felt she was still in control. She thought she could drive just fine. She thought she could handle her finances, which became more and more of a mess. But in the beginning, I was telling her she needed help, and she didn't understand why. And I hired a caregiver to come in two days a week, in the mornings, and she would call me and say, "Why is this woman sitting next to me? I don't need anybody here. Why is she doing that?" And it's really hard to answer, because you feel like saying you really need help and she didn't feel like she needed help. So that is a process. As we went along, she

Steve: 4:37

So, patience. would admit certain things like, okay, I pointed out that she wrote some inappropriate checks for the wrong amounts, and it was kind of a mess. Bills were overdue, and she finally, after a while, admitted that she needed help, and I was breathing a sigh of relief at that point, but in the beginning, she didn't get it.

Virginia: 5:03

Patience.

Steve: 5:03

Yeah, patience.

Virginia: 5:04

Yeah. Yeah. There's also the issue of grief over losing the

Steve: 5:05

Just to wait. person that you thought you had- that she was an hour's drive from me. I found myself at home worried about her functioning through the day. It is a grieving over losing the person that you had. I remember the day Bob and I drove up for a visit, and she had purchased a puppy, and we looked in the living room, and there were piles, you can imagine, all over, because she didn't have the wherewithal to train a puppy to be potty trained and go outside. And we said, "Oh, wow, this is just horrible." And she goes, "What?" Yeah, really difficult.

Virginia: 5:51

Yeah.

Steve: 5:51

Maybe I can talk a little bit about how it was different for caring for a spouse as it relates to these relationships. And we're talking about this whole, maybe a segue into another question, but partners, especially as you age together, the closer and closer you become to your partner. And we've seen from our experiences with people in their 80s, even in their 90s, they're pretty much one-on-one together, and they rely on each other, and so the loss of one of those, or for the person who's the caregiver, is losing this person, and it's really, really painful, because it's somebody you counted on,it's somebody that you loved, it was somebody that you depended upon, and all of a sudden that partnership is gone. So it's a companionship issue, and we'll talk a little bit later. There's also the intimacy issue. So let's talk about another topic. What about your partnership caring for a parent, and how did that work for you in terms of your long term partnership?

Virginia: 6:51

Well, as I said previously, my mom and I had a wonderful relationship. Doesn't always happen with mothers and daughters, but it was wonderful with us, and she trusted me, and we rarely ended up in arguments. It was really, really a good relationship, and I wouldn't call it partnership. It's different with a parent, a child grows up and begins their own life, separate from their parents, often including a spouse and their own children and those it's just different when it's your parent. It's not really a partnership, as it is with a spouse. I always wanted her to have parental authority, and I don't think the term partnership really applied with us.

Steve: 7:39

Did you get in any arguments?

Virginia: 7:42

Well, the one argument, I still feel bad when I remember this, she had to go to the hospital with diverticulitis, and she was hooked up to, oh, so many tubes and monitors and things all over her body, and she kept pulling them out. And I had had it. I had no patience left. And I, this is terrible, but I pinned her arms down with my hands onto the pillow. I just pinned them down, and I said, "Stop, stop this," and she looked up at me like she was shocked, and then she said, "I'm sorry." Nearly killed me.

Steve: 8:20

Well, I think that's part of the whole process. You know, as you evolve as this caregiver, you know you're in charge, and she or he is not, but that's particularly difficult if you're the child previously.

Virginia: 8:32

Oh, it was horrible.

Steve: 8:33

So in terms of a long term partnership, for a spouse relationship, you had all these shared activities that occurred in your life, whether it was going on walks together, or whether it was taking trips together, and all of these things were a part of your life, especially as you age, you know, you just feel this incredible bond. And you don't really have work, and you don't have as many friends as you used to have, as I said earlier, you're a little bit codependent on each other. And so one of the things as this continues, is you need to reinforce, find places to reinforce this connection. Talk about shared activities. I was talking to a gentleman who was going through this, and I said,"You know, why not talk about when you dated? Remember that they're going to remember things you may not remember that are older memories." and so lo and behold, he said, "Yeah, we do a little bit of that. I can do more of it." And it's like, okay, remember talking about when your kids were young, the grandkids now, when they were young, or when, you know, you had your kids and they were young. And it's just like this opportunity to reinforce those memories that are older memories and stay connected to them. That's one thing you can do. The other thing is kind of a little what Virginia was talking about, about activities, business activities. How can you go over finances, even if it's just,"Hey, here's all the things we owe, and here's what I was thinking we ought to pay. And what do you think?" So all of a sudden there's a participation, it's a little bit of a collaboration. Ultimately, you're going to sign the checks, but you're allowing that person to participate in the process, so they still feel valued in terms of what's going on. So I think those are ways that I at least worked for Patty and I, we talked a lot about things that were mattered to us in our business life and in our personal life with our children, so it kept our relationship going.

Virginia: 10:22

Yes, you had a business that you ran, and she was what- the financial?

Steve: 10:28

She was the controller.

Virginia: 10:29

Controller?

Steve: 10:30

Yeah, and I had to fire her. Talk about a series of guilt that I felt, but the work was suffering, and I really wasn't working directly with her at the time someone else was and I didn't see it, and they eventually had to come to me and said, "This just is getting really, really bad." So that weekend, I said, "Hey, honey, you're not going to be able to go back to work."

Virginia: 10:51

You had a partnership during the day, and then you would go home, and your partnership continued.

Steve: 10:58

So I did talk a little bit about our professional life, I would talk about what was going on, especially early in the process, because she was interested in hearing about how things were going. She realized she couldn't be there day-to-day, but it somehow kept her involved. A little bit about this finding ways to connect. Another way we connected was some of the business things that were going on in our life.

Virginia: 11:17

Sure.

Steve: 11:18

So let's talk a little bit about decision making, and I guess we're talking over a lot of this at the same time, but you had siblings, and some people have had problems with siblings, whether they're step-siblings or whether they're real siblings. And can you talk a little bit about how that worked for you, and how did it work for your mom?

Virginia: 11:39

I was very lucky. I have two younger brothers who lived farther from where mom's house was, and of course, when she ended up in assisted living, I was, what, a mile and a half, and they still had a better part of 45 minutes to an hour to get to that place. But I was very lucky, because they knew I was the leader of this little team, and whatever I needed them to do, they did, without question. Even down to money, which was that can be such an issue with people uncooperative. Some siblings resent the person who thinks they're in the lead, then that leader person resents the fact that they're not involved enough, and maybe they're not local enough to help physically, but how about some things financially? And then it doesn't happen, and then it's a big mess. I happen to have been very lucky. The three of us have always been very close.

Steve: 12:40

But you also told me, as we were talking about this, that you were really good at keeping them informed, because you were there on a regular basis and they were there much less frequently. How did that work?

Virginia: 12:49

Yeah, it worked out very well, especially I remember the family meeting we called to convince mom that she shouldn't drive. And my brother, that's a big one, and my brother took the

Steve: 13:02

Lots of Bobs in your life. lead on that. But our main point was, "Mom, if you hurt someone or kill someone, there goes all the money that dad had saved for you in case you needed that money after if he went first," which he did. Then she kind of said, "Oh, you're right." And then, of course, the next day, she was asking for her car keys, but Bob took the lead. I'm married to a Bob, and my brother is Bob. My dad was Bob.

Virginia: 13:35

Yeah, there were lots of Bobs. My brother, Bob took the lead on that family meeting, and it went really well. We were all a little nervous. That's a big topic, taking away the car keys.

Steve: 13:46

Yeah, decision making for me as caring for a spouse. I think that I talked a little bit about that already, about involving Patty in those conversations, but as it related to dealing with my children, who were not all around. My daughter lived on the East Coast. My son lived in Ohio. I guess that's on the East Coast, at least they think they are. My eldest son was here in California. But especially for my daughter, it was really a challenge, because she and her mom were so close. But she couldn't be here. She was working full time, even more than full time, and so same thing for my second son. A little bit blessed for my eldest son, but I kind of got to a point where I used electronics. I mean, I literally, if we had a meeting with a doctor that they couldn't attend, and it was important to hear what he had to say, or if there was some change that was going on with her, I would send an email. Some of them were weekly, and some of them were every two weeks, but frequently I would just update them on what was going on, and sometimes it would be a call to ask questions. So the dialogue was pretty frequent. That's important when you have members that aren't nearby. But also, even I remember a guy who had, it was kind of a blended marriage, one of the guys in our support group. So he had daughters who were his daughters, and he had daughters that were her daughters. And so, lo and behold, he had this difference of opinion a lot between them. And he worked really, really hard at the process of communication. I think you can't write it off, because if you write it off and you say, "Well, that person just doesn't understand, I'm not going to talk to him," it's going to come back to haunt you at some point in time. So I think the tip here, on either side, really, is communication.

Virginia: 15:32

Did your kids ever disagree on something, you made a decision, and then did they ever disagree with each other or you?

Steve: 15:40

Not that I heard of, and the hardest conversation was when I was making a decision to place Patty in the community. And we were all on a phone together, you know, conference call. My son, who lived nearby Mark, says, "Yeah, I've been around mom, and she just is a handful. I mean, I took care of her for two or three days, and I don't know how you do that. So dad needs more help." I still owned a company. I still was working full time, so I needed some sort of help, but making a decision to place somebody, someone that you love, and I guess it's a deeper love, maybe it's hard to understand for a spouse.

Virginia: 16:17

A different love.

Steve: 16:18

A different love, that's a great way to say it. And I think that became really, really just a huge decision, because it not only was what was best for her, but it was an admission that I couldn't handle it, and that was really hard to accept. And to this day, I wonder whether or not I made the right decision. I know I did, but in the long term, you always question it. Well, let's talk about the question. When we spoke together, we talked about the whole issue of physical andsexual intimacy as being a huge difference between caring for a parent and caring for a spouse. So why don't you talk about the issues that you dealt with with your mom?

Virginia: 16:55

Well, of course, the sexual intimacy was not an issue, daughter, mother, but I'll tell you what was, it was the physical issues. The things you don't think about until you're faced with the difficulty, changing clothes; did I want to help mom take her clothes off and then put new clothes on? No, I didn't. Bathing is an issue. I felt really off when I knew that mom needed a shower. The clothes had to come off. You got to get her into the shower. She did that to me. I wasn't thinking it was something I should do, and fortunately, when she was in assisted living, I did not need to do those things. One day, I walked into her room, and there was my caregiver that I had hired, even separately to keep care of her because, well, she got up in the middle of the night looking for my dad and broke her arm. So I thought,"Okay, I need somebody sitting in her room with her all night long to make sure that doesn't happen again." That helper was there and a male caregiver was changing her depends while she was lying on the bed. I looked into her eyes when I walked in and looking back, I should have said, "Can we get a woman caregiver in here to do that?" Because I could tell that from her face, it didn't feel right to her and I should have said something. I also had caregivers ask me, "Well, you can change your mom's depends, can't you?" And my reaction was, it's not my place. I don't want to. I will help her sit on a toilet, but that's kind of what they were there to do. Thank God we could afford- my dad had purchased long term care insurance, and that helped out tremendously with the cost of her living and assisted living. But I didn't feel that those things were something that I needed to do or should do. It felt wrong.

Steve: 18:57

Yeah, I'll just segue off of your comment. I think that to some degree that part's a little easier. I guess there's a certain intimacy that you have with a spouse that you don't have as a child with your parent. And you know, whether it's you've seen each other naked, or you've been in the shower together, or whatever it is, I mean, certainly, handling bodily functions is is not easy, but I went through that, and it was okay because I got accustomed to it. I'd have to say that the changing the diapers was the hardest thing to do. I ended up having to do that with my mother for a brief period of time, and I relate to what you were saying. But I think, to some degree, on those kind of bodily issues, it was easy. I think the part that's not easy is this change in your relationshipn from an intimate standpoint- it's not there. It sometimes happens, and you really have to turn and let the lead happen from your spouse. That's what happened in our relationship. I mean, sex was pretty regular. And Patty was in her early 60s, so it wasn't like we didn't have sex. We did, but she didn't want to have anything to do with me. I mean, yes, hugging was good, and so I actually changed the way we made love together, and it became much more of rather than kind of a dual role, or, quote, unquote, guys are in control. It became, she was in control, and there was a lot more touching, and there was a lot more hugging, and all of a sudden it became a very special time for us. Didn't happen frequently, but when it did, I felt so good, and it was just like, amazing. So I think you have to change the way you make love. I know this is maybe hard to hear, but again, I think it was a part of making that relationship continue and finding a new way to connect.

Virginia: 20:51

I think it's so important that you just said what you said, because everyone out there thinks about it, but no one really talks about it.

Steve: 21:00

Yeah, I remember in our men's group, if any guys listening to this, I mean, a men's group, they're all like, afraid to talk. And eventually, what happened is a few of these kind of stories came out, and it was amazing to hear guys kind of take a deep breath and then share, and tears would flow, and some would say, "Well, I don't know what to do. You know, we used to have sex regularly, and now we don't have it at all. And what do I do about it?" And it required a change in behavior. And I offered that story, and I think that it was like, how do I say this? Women are different than men when it comes to sex and finding a way for them to really, really thoroughly enjoy it, and you're really the person making it happen, not them. I took great joy in that as I got accustomed to it.

Virginia: 21:47

Nice. Yeah.

Steve: 21:48

Well, I hope this was interesting for all of you. We,

Virginia: 21:49

Nope, I think we covered it. I think, believe that this is what makes our Spotlight on Care podcast sing is, is that we come at this from different points of view, and we thought we'd just share some of our experiences and some of those that we've heard about. So don't forget to subscribe, because this will be an opportunity for you to get informed about when the next podcast is coming out, and when you subscribe, we might even be out there asking if there are topics that you'd like us to talk about and find someone to interview. So thanks so much for listening and anything you want to add Virginia?

Steve: 22:25

Goodbye for now. Spotlight on Care is produced by the University of California Irvine, Institute on Memory Impairments and Neurological Disorders, UCI MIND. Interviews focus on personal caregiving journeys and may not represent the views of UCI MIND. Individuals concerned about cognitive disorders prevention or treatment should seek expert diagnosis and care. Please subscribe to the Spotlight on Care Podcast wherever you listen. For more information, visit mind.uci.edu.