Interview: Caring for an Elderly Parent

As discussed in a previous post, in 2012 39% of adults in the U.S. served as a caregiver for an elderly family member. The numbers of caregivers are expected to increase as the population ages. I sat down recently to talk to one such caregiver, Nance R. Nance lives in West Michigan and is trained in psychology and pastoral counseling. She works as a Licensed Professional Counselor at Psychology Associates of Grand Rapids. For about six years, she has also been quite involved in caring for her elderly mother. Here is how she describes the needs her mother had and how she helped meet those needs:

Bob: Can you tell me a little about the things your mom has been through and what changes you see as a result of them?

Nance: My father passed away in 1993 and my mom became a snowbird between Oregon and Arizona for a number of years. Around 2007 we noticed that she felt she could no longer do that. She decided to live year round in Oregon tapping into the Senior Center there, and I assisted with other needs long distance, flying out frequently. In 2009 she decided she needed to leave her home, stop cooking, and give up driving. We moved her to Grand Rapids. She knew she wanted to live near us. My older brother had assisted her when she was in Arizona, but my younger brother in Oregon is disabled. She thought it would be best to be near us because typically daughters tend to be more attentive. She wanted to live in a community where activities were available to do things she enjoyed and where she could meet people that were in the same stage of live with her. She moved into an independent living facility and enjoyed being able to go to Bible study, a book club, exercise classes, and having a dining room where she could go to have three meals a day.

She made a big life change and did so successfully, then. How old was she when she made the move?

She is 86 now, so she was around 82. She was willing to make new friends. In the same month she moved in, a pastor and his wife moved in across the hall and another moved in down the hall. They all got to know each other and ended up creating a table at lunch together. She had almost an instant community. The pastor and his wife kind of took her and the other woman under his wing and look after them.

So things went very well at first. I understand she’s had some difficulties, though.

She has a degenerative disease CMT, (Charco Marie Tooth named after the doctors who discovered the disease) where from her elbows down and her knees down her nerves have degenerated and they no longer fire on her muscles causing neuropathy. Because the nerves no longer fire on the muscles it is important that she walks to keep those muscles working. She knows she needs to walk, and uses a walker. She’s learned to adjust and adapt. If her strength is low, she thinks, “Well, even if I can’t walk today, I’ll walk tomorrow.” She has always maintained an adaptive attitude; she does not dwell on what she cannot do, but what she can do. Her heart issues have become more prevalent; previously, she had a heart attack when she was in Arizona. Since 2011 her heart has gone into atrial fibrillation. That tires her, so she can’t always get to Bible study or book club. She has had bouts in the hospital as the heart problems have progressed. She has type 2 diabetes that she manages with her diet. We’ve seen how all systems work together. If there’s a problem somewhere, she tends to get a urinary tract infection, which in turn puts her in congestive heart failure and she’s back in the hospital.

It sounds like she managed her medical problems pretty well for a while, but it’s becoming harder to do so.

She didn’t develop congestive heart failure symptoms until recently, and that’s definitely affected her life. We have to constantly monitor her. If her weight goes up or down she has to take extra medication. Yes, it’s become harder. The other thing that happened this year is that she fractured her back due to osteoporosis and arthritis. That debilitated her more than anything because the pain was so excruciating. She had to relearn how to get out of bed. She was put on a pain medication that she was allergic to, so for a while she wasn’t doing very well cognitively. Before the injury, she had been able to manage her own medication, but now she’s lost that ability and needs help with that. Her life now feels smaller. She used to travel with me to other states, and now she can’t do that anymore.

How have these increased medical problems affected her emotionally?

At times she accepts it well, –“I can’t get to all of my activities, but I can get to meals.” Other days she feels frustrated that she can’t get to everything.

No longer being able to travel together is one way that the relationship between the two of you has been affected. Are there other ways?

When I take her shopping, it’s harder for her to do that, we can only do it for a shorter period of time. She likes to go out to lunch, but sometimes cognitively she’s not on her game, so she doesn’t feel fully present. Before, she was enjoying the environment and enjoying the food.

I’m sure it is hard to see those changes.

She wants me to come and just be with her for a period of time. She is feeling more dependent. She no longer feels as confident talking to doctors. She wants to call me before making any decisions on her health.

So she went from being a very independent person to wanting more support. It also sounds like she really finds comfort in your presence now.

She likes it if I call at the end of my work day.  She looks forward to hearing from me on my way home.  It can be hard because I’m the only relative here to provide caregiving.  My husband and daughter are here and sometimes they can step in, fortunately.

Sometimes an issue in families can be an unequal burden in caregiving. In your case, your brothers can’t help because they aren’t nearby.

I do inform them when she’s in the hospital. They want to know every step that’s going on. She has had much more illness since she’s been here. They are there for emotional support, but are unable to come out to provide physical support.

Having moved here, she doesn’t have long-term friends there to provide support. Are the friends she has made helpful to her?

Absolutely.  The one friend, who is 98 years old, will come and knock on her door before meals to see if she’s OK and coming to eat.  No, she doesn’t have her friends from her church and community, that’s a choice she did make.  She does lean on me a lot, since she only has her friends from the facility.  She’s made lots of friends there, but she calls mostly on that original group of friends she made.  They have been helpful to notify me when she has to go to the hospital, for example.  With my busy schedule, I’m not available as much as she would like.  When I have a day off, I try to devote part of that day or the whole day to her.  I tell her, “I’ll see you on my day off” and usually she’s OK with that.

We talked about how the relationship has changed and she’s adapted. Are there other ways that your life has been changed?

I’ve felt at times that I needed to go part time at my clinical practice to manage the issues going on with my mother. There have been weeks when I have cut back. At times, taking care of her has been like a part-time job. I’ve taken days off, or I had to go in before work and after work. It’s added some things onto my plate. I have had to rearrange my schedule, or spend my weekends in the hospital. Sometimes there are have been gorgeous days and I just look outside and say to myself I’d rather be out there doing something else, than be in the hospital all day. At times, I’ve left the hospital and told the nurses that I’ll be back in the evening, I’m going to take some space and time for me. We’ve been there a lot this year, and I need some breaks!

That advice that therapists give clients to take care of themselves, you’re actually following!

Absolutely.  The one friend, who is 98 years old, will come and knock on her door before meals to see if she’s OK and coming to eat.  No, she doesn’t have her friends from her church and community, that’s a choice she did make.  She does lean on me a lot, since she only has her friends from the facility.  She’s made lots of friends there, but she calls mostly on that original group of friends she made.  They have been helpful to notify me when she has to go to the hospital, for example.  With my busy schedule, I’m not available as much as she would like.  When I have a day off, I try to devote part of that day or the whole day to her.  I tell her, “I’ll see you on my day off” and usually she’s OK with that.

Are there any words of advice that you have for families who have an older relative who was more independent, but is becoming more dependent now, of how they should approach that?

What I’ve heard from a lot of people who have been in my shoes is sometimes when it is in that cascade of events; it can be an emotional roller-coaster for that last year of life or last two years of life. You have to ready to expect to be in and out of the hospital. Not every elderly person goes through that process, but a lot do as systems start to fail. The cardiologist talked to us about the fact that if her heart shuts down her brain will, too, and she won’t come back, so we have a DNR on her. Those are the decisions you have to make. You have to prepare yourself as to how you can manage it alongside your family life and your job in a way that can take care of you. This caretaking piece is like having small children; it takes that degree of energy. We’ve been fortunate. My mom has had moments when she’s been down, but we’ve been able to work through that. The situation is different from that of my mother-in-law, for example, who has been very reluctant to give up her car and she got in an accident. Just be aware that it will take an energy level that you may not realize beforehand. Be prepared for that.

Thanks so much.

Postscript: Less than three weeks after this conversation, I received word that Nance’s mother had died, so Nance has gone from the role of caregiver to that of grieving daughter. Like so many others, Nance took on the task of assisting her mother through her last years of life, and did all she could right to the end.

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About bobritzema

I am a fourth-generation American of Dutch ancestry and am trained as a clinical psychologist. In 2012, I retired from Methodist University in North Carolina to return to my parents' home and provide them with assistance. I maintain part-time therapy practices in Grand Rapids, Michigan, and Fayetteville, North Carolina. I currently worship at Square Inch Community Church in Grand Rapids. I can be reached at bobritzema@hotmail.com.
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