Role Reversal: Caring For Aging Parents
The first relationship we have in life is by and large with our parents, our caregivers. They bring us into this world, they love and nurture us, make sure we are cared for, fed, protected. As we grow into adulthood and begin our lives, those relationships change to advisory, usually respect filled roles as the heads of our families. But, what happens when our parents advance in years and their care falls squarely on us as their children, all the while maintaining those familial roles?
This is never an easy transition for families and can become a great stress for all parties, especially when it seems to happen so suddenly. It feels like one minute our Moms or Dads are perfectly active, then the next they are dependent upon others in ways we never could have imagined. Our own Kellie Clausen experienced just this type of transition in her own family in recent years. We spoke with her at length about this personal transition for both she and her Mother and what she learned about this process both as a provider and the only child in a role reversal.
"I think one of the things for my generation is that there was no preparation for this. You have child rearing classes and education and articles for these things, but there is no preparation for taking care of your parents." said Kellie when we asked about how ready she felt to take on the role of caregiver for her Mother. "There's no 'This is how it's going to fall out' or 'This is the preparation you can make.' Now maybe if you're lucky you talk to your parents about it. But none of us are really prepared for what's going to happen when that parent who yesterday was just fine, and today they are someone who needs total care. Or someone you need to make all of these hard decisions for that you may or may not have discussed in the past."
Kellie's own circumstances meant that her Mother lived 8 hours away in Nebraska. That being said, Kellie's mother was active, still had a job as the Church Secretary in her small town and was the caregiver for Kellie's step-father. "My mother was a citizen, she was an active professional woman, had worked all of her life. She was seventy-four at the time and was a young seventy-four, she was active, she still had a job at the time." Kellie's mother had even recently been home to Wyoming for a visit, and had driven herself back the long drive to Nebraska,
But things in life all too often change quickly. "She called me one Sunday morning and said 'The weirdest thing happened to me this morning, all of sudden I couldn't talk. Everything I said was jumbled for about five minutes.' and I said, 'Mom I think you're having a stroke, you need to go to the emergency room.' And she said: 'Oh, don't be ridiculous I'm fine.' I said, 'No that worries me that you're having a stroke you need to go to the emergency room.'… but, she didn't."
Receiving a call from her mother's doctor's office that following day, Kellie was informed her mother had indeed now suffered a full blown stroke. "By the time I got there she had lost most of her function. Long story short you now have to make the kind of decisions that are like 'Okay, what are we going to do for rehab?" At that point we thought we were going to rehab completely. This happened in November; my goal was for her to be home in April to plant her flowers. As it turned out she did not regain most of her function, she was never able to speak again, she was never able to walk again. Her entire right side was paralyzed. So we had to then make the decision of what are we going to do? Her husband is elderly, he was quite a bit older than her, and he was flat not able to make that decision and he said repeatedly, 'We've talked about this and if anything happens she wants to go back to Wyoming where you are.' Well, obviously that was the only thing that was going to work anyway. So we made arrangements to bring her back."
Arriving back in Wyoming then presented it's own unique set of challenges. Kellie and her husband Robert had recently built their home and had endeavored to make it wheelchair accessible in the event Kellie's mother someday needed to come live with them. However it wasn't handicapped accessible. "I had always said, 'Oh Mom you don't have to worry about that you can live with me, I have the resources to take care of you.' Little did we know that she was going to be so incapacitated that one person could not take care of her. And my husband and I made the decision that I would stay working because it was this balance: okay this number of people who have health care won't have the service that I provide if I quit my job to take care of this one person. Not to mention this is my life, this is my career."
"So we made the decision that she would go into longterm care. And we thought at that point it was just going to be rehab; that we were just going to get her back on her feet. But that changed our lives, that remade what our lives looked like. Even when someone is in longterm care, even though they have someone there 24 hours, you don't leave someone you love alone in this scary situation where she can't communicate."
When aging or elderly parents are asked: "What if this happens, where you are not able to take care of yourself what do you want to do?" they will say, "Whatever you do, don't put me in the nursing home." Which for some is their nightmare. Kellie summarized that this is an unfair statement to make to your children, due to so many unknowns that exist as we age: "We had no choices, I was not physically able to lift her, and I'm strong for my age, but I was not physically able to lift her, take her to the bathroom." They also had to look at the constraints of their home. "We built a house we thought was handicapped accessible, it is wheelchair accessible but not handicapped accessible. So I would've had to completely remodel my house in order to even give her a shower, which is fine I would have done that if it had been possible for me to do it." They also weighed the idea of a nurse or caregiver coming in: "We talked about that. We could hire someone to come in, we could do all of those things. But ultimately I was not able to do the other part of it and stay working. I could've done it, but I would have had to quit my career that I have invested my life in. That was a decision we had to make."
One of the most important things you can do as a family is to have these conversations. Kellie advises, "Please talk about these things: 'What if you're not able to go to my house? If you have to go to long term care, what kind of things do you want to avoid? What if this is a worst case scenario?' But just talking about those things and getting them out there, and just having the parents say 'Just please don't ever send me to the nursing home.' is not a solution. There just may be times where you have to go, There just may be times where you have to [ask your parents], 'So, what do you do? Where do you want to go? Which [places] do you like? What have you heard [about them]?'"
Another essential consideration is knowing key information, where documents or other items are located and successfully having both medical and legal Powers of Attorney. Knowing even just "Where's the check book, where's the paperwork for your insurance, where's the paperwork for a thousand other little things. The bank: making sure that the bank has someone else's name on those accounts. Because one account that she had, my name wasn't on it, so it actually took me ten months to get everything taken care of. To get that little piece, and it wasn't tiny, but that one piece cleaned up and out of the way." Along with the added concerns of her mother's medical care in real time, Kellie was now taking on all of the financials and making sure she was up to speed on all other aspects of her Mother's care. Kellie recommends "making sure you know where all of the Medicare paperwork is, and making sure that there is someone else's name on the vehicles.
Knowing what prescription meds your parents are on, and where are they located. Older people have a tendency to keep medication(s) so when you go to their house to go through their meds, you don't have a clue what they are actually on because there are all of these old meds too. My mom was really good about keeping a list in her purse, by the time I got to Nebraska the medical staff had those all written up. But those kind of nuts and bolts things that you don't really think about." There are many day to day items we as a whole can take for granted: water bills, electricity, the mortgage or rent, car payments, property taxes, investments… all of which have to be decided upon. Not to mention if your parents are no longer going to reside in their home and are transitioning to long term care, listing and selling their home or giving thirty days notice on their apartment or other living facility.
And all the while all of these newfound decisions are happening for your parent or parents, you also have many other demands: your marriage, your kids or grandkids, community responsibilities, your employment. "I was fortunate I had a job where I could say, 'Hey, my Mom is in this situation I have to be gone for three weeks. I don't know how long this is going to take but I know I won't be back in the short run.' And my workplace said, 'Go, we will cover and make it work.' But what if I had a different kind of job where they said, 'Okay, but we're going to have to replace you if you do.' And that is a reality, and is very possible that it could happen. So there is that concern as well."
By midlife, most of us are looking forward to many things: travel, more funds to do more with our homes or hobbies, new energies to devote to careers, passion projects or our communities. What we might not be counting on at that time is having the responsibility of directly caring for parents who are advancing in years. "When my kids were little I read this article that said 'most women in their twenties and thirties would spend more time caring for aging parents than they would caring for their own children.' At the time, I read that article and thought 'Oh that's ridiculous." Because when you are in the throws of small children you're like this is going to go on for ever. But I did the math and I actually had children in my home for oh, about 21 years. We cared for parents for about 25 years, not contiguously admittedly. But from the beginning from when my Dad got sick to when my mom died, there were four parents in that process that was about 25 years. So indeed I did take care of aging parents longer than I cared for [my] children."
This is your parent you are caring for, not one of your children. "I would say it's one of the crises of middle age, to have to make those decisions. Because the dynamic of caring for parents is totally different than caring for children, because when you are caring for a child, you are the power source. When you're caring for a parent, they're still the power source. Oh, by the way, they are still your parent, and you still respect what they want to do even if it's not the best for them." With a laugh she added, "And they lie! They don't tell you things, they make things up, they diminish things, because they don't want you to be distressed by things. They are trying to protect you and they think they are still in control."
Living in the upper Rockies region, Wyoming and the surrounding states can often feel isolated, this is especially true when it comes to looking at senior services or services for the aging. "It is hard. I was fortunate because I was on the inside; I am a part of healthcare I kind of had a clue what was going on. But some of the hard things were 'Where are we going to go for rehab?' when she was in Kearney, Nebraska and I wanted her in Wyoming where I knew people. But getting her from Nebraska to Wyoming — it ended up we could not make that trip. And when I look back on it all, that was one of the huge crises: which services are we going to employ? And how do you decide? How do you decide between long term care where she was [in Nebraska], and long term care here? Making that transition, and you know there are not a lot of services that help with that."
Most hospitals employ social workers to help families navigate this new area of their lives. There aren't a lot of advocacy agencies or educational resources by and large available prior to a family needing assistance prior to the need becoming present in real time scenarios. "There are certainly resources out there, but a lot of the recommendations come down to the social worker in your hospital or in your nursing home. And they are usually overworked. I got a lot of help from the social workers at the hospital in Kearney, Nebraska; they were wonderful."
There are no hard and fast rules for caring for your parents in these situations, especially when you add in other family members, siblings or people around you who also will have input. The waters in these times for a family often turn murky, and open and thoughtful communication not just from child to parent or parent to child but as a whole family becomes key. Another consideration is communication between the family and their parents' caregivers and medical providers. Decisions have to be made at times minute to minute to help with the continuous care for our parents. But having a plan for all scenarios, honest thoughtful dialogue, and mentally, financially and physically preparing are all ways we can help our parents and our families transition into these scenarios with greater ease.
Our many thanks to Kellie Clausen for opening up and sharing her own personal experiences of caring for aging parents.