Aging Parents & Medical Limbo

Within 18 hours of my arrival “home” to visit my parents this week, we made three visits to the local emergency room with my Dad! I had planned a trip back to New York to visit my parents, who are both in their early 80’s, living in their own home. At the time the trip was planned and commenced last Wednesday, both my mom and dad were in fair health, except for some chronic disease and aging bodies. Without question, the most significant was that my mom’s mobility had recently changed and now she was limited to getting around with a cane.  When I arrived this accurately described their health status, but that was all soon to change!

In the middle of the night, within 13 hours of my arrival, we had to visit the emergency room! My dad experienced a concerning health problem at 3 a.m. that necessitated him waking my mom and me. We knew we had to visit the ER. So, we got in the car and went – with me driving. He was seen quickly, as the 30+ bed unit was not that busy. We were on our way home a few hours later. To make it really exciting (and frustrating), all this happened on their wedding anniversary – a significant one, marking many decades together!

But, less than 12 hours after that, we had to make another trip back to the ER for a problem with a piece of equipment they had given my Dad that was not functioning properly. Let me just say that there was no way we could ignore this problem. We asked for help from his primary care office before we went, but they instructed us to return to the ER.  So, we did. Luckily, this ER has a quick care area and he was seen there instead of being placed in another ER bed.  Again, we were serviced quickly and, we felt, competently. We were on our way home again in less than three hours.

Yet, about 24 hours later, we found ourselves back in the ER again, for the same malfunctioning piece of equipment! Without revealing too much, let’s just say that it was a combination of my father’s condition and a piece of equipment that was used to help manage his condition until he saw a specialist for a followup next week.  The equipment just was not able to do what it was meant to do for him! Instead of improving the situation, it was actually making it worse.

This time, on our third visit to the ER, he was placed back in a full ER bed. We saw yet another doctor and nurse and were again, promptly taken care of. They determined the problem quickly, worked to resolve it, and we were on our way again in the space of a few hours. These two providers were exceptional, especially since they helped reinforce some instructions/suggestions I had tried to give my parents regarding the equipment they had chosen not to follow.

Well, what can I say? You can imagine the stress! We were all just barely holding it together. My mom with her mobility issues prevented her from helping my Dad care for this piece of equipment and thus, himself when we were at home. She has also not driven in some time and does not feel confident behind the wheel any longer. There were trips to the pharmacy and grocery store, besides the ER.  My mom, despite her limited mobility, wanted to go with me on these errands. My dad was adjusting to a limited capacity due to this piece of equipment and his condition.  I was trying to help around the house to keep things flowing as normally as possible – things like laundry, fixing meals, helping my dad, and more.  Tensions were high. My mom felt I was doing too much. I felt like I wasn’t doing enough. They needed help!

Between the second and third ER visit, we were starting to wonder if some home health care was necessary. I made calls to their insurance company to check coverage and get referrals. I called their primary doctor’s office to make sure they were in the loop and again asked if they could help us with the problems we were experiencing. They said no, and referred us back to the ER or to the specialist we were referred to.  This lack of assistance was both difficult and frustrating. We were caught in medical limbo.

Through all this, I was both surprised and grateful that my skills as a former nurse were still very much intact.  I haven’t thought about my former life as a nurse in a very long time, but the skills I needed came back immediately and helped me manage the situation as much as possible. My sister is also a nurse, so by the time of her arrival, despite the ER visits being over, they were double teamed by two caring daughters with healthcare knowledge and expertise.

There is not much more I can write at this time other than I offered to stay through the holiday but my parents wanted me to return to Wisconsin to be with my own husband and sons, especially since there is an upcoming holiday. I was willing and able to stay.  Of course, with four of us involved, there were four opinions on this matter. The plan ended up changing several times, as my father’s condition improved. I think we were all okay with it when I left this morning. My sister also returned to her home in a nearby city, with the insistence (and necessity) that she return on Wednesday for my Dad’s appointment with the specialist.  To test this plan, my sister and I went out yesterday for a short time (three hours) and left them to try and manage. Of course, we were just a cell phone call away, but we were not called. They did fine, much to everyone’s relief.

Upon having this experience many things occurred to me. One is that I was meant to be in my parent’s house last Wednesday night. I am sure about that. The other is that our health care system is suffering, especially from a primary care perspective. You see, I was a primary care provider about thirty years ago. I saw patients, I prescribed meds, I gave discharge instructions and referrals.  Never, did we discharge a patient and leave them in limbo between the ER and their follow up with a specialist. I went as far as to ask my Dad’s primary doctor if they wanted to see him and the answer was no.  This is not acceptable. While I am glad I was there to help manage things and plan for the potentiality of certain situations, I shudder to think what would have happened if I had not been. And, there are many elderly out there for whom that is just the case. No one to advocate for them, no one to place those phone calls, no one able to offer to stay with them, and no one to interpret what was instructed or question when the care just doesn’t seem right.

Unfortunately, I have aging parents who are 800 miles away.  As society has become more mobile, with many adult children living far from their parents, we all find ourselves in the same boat. It is scary because one of these times it might actually sink.

7 Thoughts

  1. I can relate to this post. My mom was in the hospital for an extended time at the beginning of the year, and is only now are my folks adjusting to her new normal. Walking with a walker, compression socks, limited mobility and unable to leave the house for long periods of time. They are taking it in stride, but it’s hard to see them age. And to be so far away from them.

    Liked by 1 person

      1. Yes. This was my first trip to see them in two years. They were here for Matt’s graduation in 2017 and then I went to see them in the fall of the same year. Last year, we went back to NYS for Ben to visit our alma mater and stayed in Buffalo but my folks did not make the trip in (90 minutes by car to my sister’s house). So, there was a missed opportunity there. Jim was back last spring and saw them for a day. But, you are right not often enough and that makes the aging so much more apparent.

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  2. My father had some pretty serious back surgery in May. As I read this, I felt the same “oh sh*t” feeling I felt when my Mom emailed about my father getting to the phone, dialing 911, and tell the dispatch about “intruders” and “gun shots” My brother called a couple of nights earlier as he was driving up to help Dad up the stairs.

    They are now looking for a place in town, closer to the hospital, and their primary caregivers. My brother is 90 minutes away, I’m 60 minutes, so if something DID happen, we could be there quickly, but it’s still the “what ifs”.

    It’s hard to seem them age……

    Liked by 1 person

    1. Thanks, Darin. Yes. It is very hard. Luckily, my sister is only about 90 minutes away from them. But, still. She is trying to talk them into moving to her town so she can be closer to them. They are resistant – which I understand as well. I am just glad I was there when I was! Have a nice Thanksgiving!

      Liked by 1 person

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