This has been a challenging few months, and it seems the only way I’m going to get myself unstuck is to write about it. Maybe then I can move forward.
Those of you who have been reading our blog for a while know that we’ve been dealing with my elderly parents for several years. (It sounds kind of awful to say “dealing with my parents” but that is the truth.) We visit them every winter in Florida for a couple of months, and in accordance with their wishes, have done our best to help them stay in their home.
This past winter, we got them set up with home health care nurses, made the house as safe as possible, and waved an exhausted goodbye. Two weeks after we left, my mother fell, broke her arm, and ended up in the hospital.
And it has been a crazy, no brakes downhill ride from there. Here’s the abbreviated version: Hospital. Rehab. Pneumonia. Back to the hospital. Back to rehab. Numerous falls. Countless phone calls every day trying to manage my mom’s care, and much more difficult, trying to manage my dad’s life.
Without my mom at home, my dad’s life and mind unraveled. He couldn’t figure out how to use a calendar, and couldn’t make sense of time. He stopped cooking, ate all of his meals at the local Mexican restaurant, slept at random times, forgot to pay bills. I tried every tactic possible to get him to move into assisted living with my mom, all to no avail. His answer to me was the same as it has always been: “The only way I’m leaving here is feet first.”
My sister visited from Jacksonville, took him a month’s worth of home-cooked meals, and tried to get him to go home with her. Nope. He wasn’t having any of it.
For more than three months, I started every morning with a phone call to my dad, helping him organize his thoughts and his day. And followed that up with several phone calls throughout the day trying to keep him on track. I hired a private care nurse to watch over him and keep him out of trouble. That wasn’t enough. He refused to stop driving, refused to take his medications (he especially hates what he calls his “pee pill”), and refused to use a walker. His life was spiraling out-of-control, and it felt sometimes like he was dragging me along with him.
My sweet, loving, thoughtful dad turned into a giant pain in the ass. Not intentionally; but his insistence on remaining in his home and his inability to acknowledge his limitations and to make wise decisions made life hell for me, Eric, my sister, my uncle (my dad’s brother, who is 15 years younger), and his neighbors. It is astonishing how much havoc one 91-year old can wreak. All while continuing to be just as loveable as he’s always been.
And you know what? There wasn’t a damned thing we could do about it. The law—rightfully so—heavily favors the rights of the elderly. But that also means that we couldn’t make the decision to have his driver’s license taken away, nor could we insist that he move to a safe situation. Because he had never had an accident (yet), and he hadn’t burned down the house (yet), we had no legal recourse, unless we pursued guardianship (a long, expensive, difficult, and demeaning process). Consequently, we all lived in terror of what might happen.
My dad truly believes that he is just as competent as he always has been. But he even lost the ability to comprehend if it was day or night. I’d call him at 8:00 p.m., and he would tell me that he had just gone out to breakfast and didn’t understand why it got dark. “It’s 8:00 at night, Dad,” I told him. “You probably fell asleep in your recliner, woke up at 7:00, and thought it was morning. But it’s really nighttime now.” His response? “Maybe it’s night where you are, but it’s morning here!” How do you reason with that?
I spent a very surreal few months trying to maintain my sanity.
And then, it all exploded in one epic day when I had 26 phone calls and six texts trying to deal with my dad. It started with our morning phone call when he told me his buddies at the Mexican restaurant noticed that his arm was swollen. I asked his nurse to take him to the emergency room, where he was diagnosed with cellulitis, an infection that can be life-threatening. When I spoke with the doctor, she said, “Oh, your dad is the sweetest man! I’m giving him a prescription for antibiotics and sending him home.”
My response? “Oh God, NO. Please do NOT let him go home.” I explained to her the craziness of the last few months and pleaded with her to admit him to the hospital, with the goal of getting my dad into the rehab facility with my mom. Once I filled the doctor in on the details of what had been going on at home, she was in complete agreement.
Here’s a little known tip: If you can get your elderly parent hospitalized for three nights with any kind of condition, they can then be transferred to a rehab facility for three months under Medicare coverage. I knew it was the only way we were ever going to get my dad out of his house.
I felt incredibly relieved and absolutely terrible. My dad has not returned home since that day in early August. Because if he had, I would not have been able to pry him out of there. With the blessing of my sister and my uncle, and to the immense relief of my dad’s neighbors and friends, I made arrangements for my dad to be transferred into the rehab facility with my mom.
A couple of weeks later, my sister and I made the decision to transfer both of our parents five hours away, to an assisted living facility in Jacksonville just a few miles from my sister’s home. It’s a beautiful facility, and my sister made it cozy with artwork and familiar belongings from my folks’ home.So, how did it go? So much better than we expected! My mom and dad were totally fine with the medical transport that we arranged. They loved their new home! My sister, their granddaughter, and their great-grandchildren greeted them and they had a wonderful reunion. My sister and I marveled at how easily they made the transition.
And then, late that night, my sister called, exhausted and emotional. She had just gotten a call from my dad, who was yelling, “Get me out of this death mill!” Because in his mind, he does not belong there. He then proceeded to call 911 to get him out. I called the nurse on duty, made sure he was okay, and said, “Unplug his phone.”
Let’s add ‘tenacious’ and ‘resourceful’ to my dad’s personality description.
Since then, life has still been a rollercoaster, but thankfully, a rollercoaster with a safety bar in place. It is an enormous relief to have both of my parents in a safe environment, but that doesn’t mean the challenges are over. My sister visits almost every day and is doing everything possible to help them adjust, and I call just about every day. We are both navigating these unfamiliar waters as best we can, supporting each other, grieving, and finding what humor we can in the insanity that our parents have visited upon us.
Eric and I will return to Florida in December. We have a daunting task ahead, dealing with my folks’ home, their vehicles, their boat, and the enormous mountain of stuff that they accumulated in 71 years of a rich, full life together. And, of course, we’ll be traveling back and forth to Jacksonville to visit them.
I am quite certain that my mom and dad never intended to put my sister and me through this special kind of hell. (Or if they did, I really wish I had been a poorly behaved child because at least I would have felt like this was justifiable payback on their part.)
What You Need To Do To Protect Yourself And Your Loved Ones
No one prepares you for the emotional stress of caring for an aging parent, and it’s made much more difficult when certain legal documents are not in place. I don’t pretend to be an expert on this at all, but we’ve learned a lot in the past six months.
So I’ll wind up this post with a few things that you should do NOW to protect those you love. And if your parents are alive, light a fire under them and make them take care of business. Of course, should you want to make life miserable for those you leave behind, feel free to disregard all of the following:
• Make a will, but don’t stop there. My parents thought that a simple will was sufficient. It is most definitely not.
• Sign a HIPAA authorization form at your doctor’s office. This will allow your doctor to share medical information with whomever you designate. Without this authorization, the doctor’s office won’t even acknowledge that they know the patient. (Guess how I discovered this?)
• Make your healthcare decisions very clear by filling out an advance health care directive (also known as a living will). This enables you to make your health care wishes known before a medical crisis arises and only goes into effect if you are incapacitated and unable to speak for yourself. My parents created a living will when they made their will but hadn’t updated it in 40 years. A living will needs to be updated as you age because life circumstances change.
For example, intravenous feeding might be appropriate for a younger person who has suffered a traumatic accident and is expected to recover, but not for an elderly person simply to extend their life. Give a copy to your doctor and your loved ones. While you’re at it, sign a do-not-resuscitate order (DNR) at your doctor’s office and give a copy to your loved ones. This makes it very clear to medical personnel that no ridiculous measures will be taken to bring you back to life. Here’s an excellent resource: Advance Care Planning: Healthcare Directives.
• Add trusted loved ones to your bank accounts so that they will be able to access your accounts in the event that you are unable to pay bills, etc. Thankfully, I was able to accomplish this last winter with the help of the very kind and understanding bank manager at my folks’ bank. This has enabled my sister to take on the enormous task of sorting out and paying my parents’ bills. This step also avoids the expense of probate when the time comes (AKA when they die).
• Name beneficiaries on retirement accounts (not only your elderly spouse). This also avoids the expensive and unnecessary hassle of probate.
• Set up a durable power of attorney (POA) so that in the event you are unable to make medical or financial decisions, the person(s) you’ve chosen can make those decisions for you. If you don’t have this established, court actions can step in and assume control. You need a POA for everything from medical decisions to ridiculous things like having cable television disconnected.
After many, many hours of conversation over the past couple of years, I convinced my dad to set up a POA for my sister and me while we were there last winter. Without this, we would have been screwed. A person suffering from dementia cannot legally sign a power of attorney document, and we accomplished this in the nick of time. Don’t wait until it’s too late.
• Even having power of attorney, you cannot force someone to go into an assisted living facility against their will. The reality is that my dad could leave the assisted living facility at any time and take my mom with him. The saving grace is that no one believes he is competent living on his own, so we’re relying on a combination of reassurance and distraction to keep him content. And we never tell him that he cannot go home—we just tell him that he needs to be where he is now “for a little longer.” Here is a very good article explaining the difficulties and strategies involved in moving an elderly person into an assisted living facility: How to Legally Force a Loved One to Move to a Senior Living Facility.
• Deal with your lifetime accumulation of material possessions. If you can’t do this on your own, hire someone to help you clear out your junk. Seriously, do not leave this job for your loved ones. It is not how you want to be remembered.
A Note On The Photos In This Post
The photos here remind me that we did indeed have a fabulous spring and summer, despite the many hours we spent immersed in the vortex of parental care. It has been a long haul, and it’s not over yet. But we’re doing our best to enjoy every single day, and to live our lives fully around the challenges.
In upcoming posts, I’ll be writing about the places we visited and the wonderful adventures we’ve had. And hey, maybe with several months in Florida sorting through my parents’ stuff, I’ll have some time to catch up! :-)