Caring for Elderly Parents: A Few Lessons Learned
These were some of the most challenging, yet most meaningful experiences of my life! Challenging vs meaningful can change moment by moment, however. My husband and I cared for his parents and my mother for 10 years. It was actually more than seventeen years in all because, before they needed a higher level of care, they still required quite a bit of assistance on a constant basis, from a distance.
Our parents had survived the Great Depression and World War II, and had all lived their entire lives in New Jersey. In 2007, we relocated to North Carolina for a job transfer. Our sons were 6 years and 18 months. Certain at the time that our parents would all join us, we envisioned the same type of family relationship here as we had enjoyed with them there, while acknowledging that we would become their caretakers as they needed. They were all 81 years old and living independently when we moved. We offered to buy a bigger house that would accommodate some or all of them, but they were convinced they would never need it. So, we purchased the home that was right for our family and in our budget. We would care for all three somehow, while also raising our two small children. Although my in-laws professed they would move near us “someday,” my mother was adamant that she would not. Being a nurse and an only child, I assumed (hoped and prayed a lot!) that she would change her mind once she really thought about it. We didn’t realize then that my in-laws had no intention of moving either, and that all of them were already beyond the age of making a transition smoothly.
Lesson learned: You can’t make your parents move if they are still mentally competent and refuse to do so. The fear of change and the loss of independence are realities. Transitions become increasingly difficult with age.
So began our road trips, two to three times a year, from NC to NJ and back. We’d spend a week fixing things that needed attention at their respective houses, cleaning, and helping them figure out things like the TV remote or email. Each time, we hoped they’d reconsider their decision to stay put. All of their neighbors and extended family assured us not to worry, they would come. We called several times per week, and they would tell us how “well” they were doing, while we could see with each consecutive visit that they were doing less and less well.
Whenever we visited, all they wanted was for us to “sit down and have a cup of tea.” Reminiscing, telling stories, eating homemade cake, and drinking tea. This is what made their day, and ours too. These were wonderful moments. It’s just that they also each had a long to-do list that genuinely needed attention, and our vacation days from work were limited. A week isn’t long when there are two homes, an hour apart, and two travel days included. So, a mixed bag of guilt, gratitude, and the warmth of going home filled our hearts. Each visit brought to our attention more indications that they really needed additional, regular assistance. But they all flatly refused, saying they were fine. They didn’t tell us that they’d had many minor (and major) car accidents. My father-in-law assured his doctor that he was only driving locally during the day. He would then take Mom on long trips and drive home on highways late at night. The doctor wouldn’t consent to recommend that he stop driving, since he believed Dad was telling the truth. Most people do not want to give up driving, and many will do anything to prove they’re still able. My mother eventually stopped driving, relying on her 96-year-old friend to take her to doctor appointments and food shopping, while insisting this was normal. Sound crazy? We thought so…she didn’t!
Lesson learned: Have that cup of tea. Time is short, and they are worth it. You will cherish these moments. Acknowledge that your elderly parents still are the parents (they are) and resist the urge to parent them. Be extra kind and respectful whenever possible. This builds trust, and that will help lead to meaningful conversations and lessen fear. You can suggest, but in the end, you can’t live someone else’s life for them. Try to remember to give them, as well as yourself, plenty of grace.
Although my mom eventually agreed to hire a lady to clean her house every other week, my mother-in-law would not. They had a support system of sorts, albeit mostly made up of people their age or older who still had their own grown children nearby to help them.
This back-and-forth travel continued for seven years. Finally, my in-laws, with the utmost reluctance, agreed to move near us. However, by age 88, their health had severely declined. My mother-in-law had worsening Alzheimer’s and was legally blind from macular degeneration. My father-in-law had decided to stop taking his statin and, subsequently, had a massive heart attack, which left him with about a quarter of the heart function he’d had. Needless to say, the move was not pretty, and their ability to adapt to a new living situation was poor. Their judgment was not as clear as it had been. Our boys were now 13 and eight, and we had just begun homeschooling them weeks before the big move. Whew! Amazingly, they scored higher on their standardized tests at the end of that school year than in previous years. God is good!
My in-laws had arranged to live in an “independent” apartment for people 55+ before Dad’s heart attack. Now, the meals available for lunch and dinner (a primary reason they were there since Mom was no longer able to cook) were way too high in sodium for Dad. The cook once had a family emergency, and no meals were available for over a week. My husband and I went several times a week, brought groceries and meals, poured Dad’s meds, checked his blood glucose and INR (he was on coumadin), and performed many other medical and non-medical tasks that are not provided in an “independent” facility. This lasted until I fractured my ankle and was unable to drive for 3 months. We needed a place that could handle their care when we weren’t able.
Lesson learned: “Independent” means independent! These facilities cost much less than assisted living, but do not provide any medical care. If something were to happen to the caregiver, who would take over until you were able?
So, another big move for the folks who had only moved once before in their entire lives. We chose an Assisted Living Facility that was highly recommended by a trusted friend whose parents had lived there happily for years. It was lovely for about a year, until it was sold and converted from a nonprofit (where funds are spent mainly on residents) to a for-profit entity (where fewer funds are spent on residents). Once again, the food went from home-made by a chef to mainly processed, high-sodium choices. Way too much for Dad! In addition, most of the staff left with the change in administration. We learned that this happens quite often!
Lesson learned: The facility may change abruptly, so have a “plan B” just in case.
The last Assisted Living Facility they lived in was the best, and it was only ten minutes from us. They had to downsize further (a huge obstacle for my mother-in-law, who literally felt like a part of her life was being taken every time a piece of furniture that posed a fall risk had to be removed).
These facilities also have a sliding scale for monthly charges, depending on the level of help the resident requires. Medication administration, blood glucose monitoring, and help with dressing or bathing all raise the cost significantly. They stayed here together for about two years until their dementia worsened much further, and they eventually had to be separated. In all, they lived in North Carolina for seven years.
None of this is easy. There is no clear blueprint. You, the child, often feel exasperated or exhausted. It seems like there is always some drama or scare, phone calls in the middle of the night, a fall, a trip to the hospital, a medication change that wasn’t communicated. The parent is also experiencing many of these emotions, along with feelings of guilt for needing help, fear, and a good bit of frustration over the loss of independence. These are often compounded with some level of dementia. The term “growing old gracefully” is not always possible, even when every effort is made. Our parents often expressed the wish to be young again, living with dignity in their own home.
This doesn’t even begin to touch on the fact that much of the caregiver’s attention is stretched between your elderly parent(s) and your children (if you still have young ones). This is a tightrope walk in itself. Our sons are now grown, and have asked my husband and me if we are “going to do this to them someday.” If we’ve learned anything, hopefully the answer will be “yes” (as in, you may well need to care for us in some way), and “no” (as in, we plan to move close to one or both of you while we are still mobile, willing, and better able to adapt). It takes two generations of mature people to make healthy decisions and cope with life as it is, rather than how it was expected to be.
Lesson learned: You, the caregiver, need support and time for yourself. Whether your loved one is at home or in a facility, it can take a huge toll on your health, your marriage, your children, and their relationship with their grandparent if you don’t get some support! It’s like they tell you on an airplane - put the oxygen mask on yourself first before you attempt to help another. You deserve it, and it will help preserve your relationship with your parent as well as your own physical and mental health.
It can be emotionally draining to spend time with parents when they are depressed about growing older and losing their health and independence. You can’t make them young again. Sometimes they need to vent, too. If they have dementia, they often have moments of clarity mixed with confusion. Caregiver burnout is real. Reach out to extended family, friends, or community resources whenever possible.
As for my mom, at 92, when her friend could no longer drive, she unexpectedly decided to move to Florida near her much younger cousin, also a nurse. Now she was just as far south from me as she had been north in NJ. But her cousin was wonderful and had a huge support system in place after 40 years of serving as a parish nurse. I flew down about every ten weeks and stayed a week to help out. My in-laws were still living nearby in NC at this time. The extra support of extended family made a huge difference! My mother lived in an apartment with lots of assistance for a year and a half, until she fell and fractured her hip. This was during COVID, so nobody could visit her in the hospital where she had her hip repaired. She was transferred to rehab after surgery. Complications necessitated placement in a skilled nursing facility. Although this wasn’t the quality of life that anyone would wish, her cousins were 5 minutes away. My visits also eased my cousin’s burden somewhat and allowed me to connect with the staff caring for my mom. Together, we were a team! We trusted each other, and my mother trusted us, too. This is very important. You really need an advocate(s) nearby when in any kind of healthcare facility. We would pop in unexpectedly and often, which I recommend doing as much as possible. We also hired a private aide whom my mother loved, who came in three times a week to check on her, help with meals or baths, and keep us in the loop. This was not very expensive and provided my mom, cousin, and me with a real sense of peace. My mom was difficult and had lost her filter by this time. She was often verbally abusive to the staff. This is also common amongst the elderly. Having family close by to keep the line of communication open with the staff and express gratitude for their care is of utmost importance. I’m forever grateful to my cousin for being willing to partner with me in caring for my mom to the end!!
Thankfully, our parents granted my husband and me Power of Attorney and a Health Proxy years earlier. They also permitted us to manage their finances when they were no longer able to do so. This allowed us to honor their wishes in every way possible. We appreciated their trust in us and stewarded their affairs with respect and integrity. Managing someone else’s healthcare, living situation, and finances is a weighty responsibility.
All of our parents have since passed away. We miss them! We don’t miss the caregiving that much. However, looking back, we know that although we didn’t handle everything perfectly, we did our very best. We are grateful to have been there for them. They often said how much they genuinely appreciated the love and kindness we gave them. They trusted us, and that is huge! Those words last a lifetime!
Biggest lesson learned: If at all possible, try to move within about 15 minutes of one of your children, way before you think you need to. You will be able to adapt much better and may even live independently for longer. It will make a world of difference to your children, as they most likely will be your caregivers one day. It’s not easy to think of that, but it is usually the reality. Have the difficult conversations with them while you are younger. Do the mature thing and make it as easy for them as you can. They will thank you, and you will likely thrive much longer and better for doing so.
…and remember to have that cup of tea.
