My Personal Handbook to Help You Help Your Elderly Parent

Introduction

I recently lost my dad, 72 years old, to a 30 plus year battle with Rheumatoid Arthritis (RA), plus COPD and chronic heart problems. That’s just a fraction of the story. Just shy of four years prior I lost my mom to complications to lung cancer, she was just 68. My mom was my dad’s caretaker, even in the midst of battling cancer and enduring chemotherapy, she helped him with almost everything.  Dad was riddled with RA, having been diagnosed before the advent of modern autoimmune pharmaceuticals, that he had both hips replaced, one twice, all the bones in his toes removed, both knees replaced, severely crippled hands, and in his final four years the RA attacked his eyes.

 

When mom suddenly passed away, my brother and I were in a position needing to care for a parent that really could not care for himself.  Dad could not even tie shoes or button his shirts. What was worse, he was insistent upon staying at home and not moving into a much-needed assisted living facility.  While I knew he needed to be in assisted living I could empathize with the desire to stay in his own home.  This was going to be tricky. 

 

Technology Solutions - Security

The first thing I needed to solve for was the basic ability to know if he was okay. I could call and text constantly, but still less than an effective monitoring solution.  Living 30 minutes away, it was difficult to simply drop in, so I needed a more sophisticated solution. I reached out to my own alarm company provider, CPI Security, to determine if they had a solution to help me. They did! Cameras with night vision could be installed at numerous high-risk areas of the house for me to monitor 24/7. However, that wasn’t the key ingredient; a medical alert necklace connected to the system gave dad the ability to trigger the alarm if he was in medical distress or had fallen. If he triggered the medical alert alarm, the monitoring system could speak to him over a two-way loudspeaker. If he hit the alarm on accident, he could verbally cancel it. If he had fallen or was ill, and this is the best part, the PIN code door locks on the front and back doors would be automatically unlocked allowing EMT’s to enter the home without the need to break down a door. 

 

I want to stress, I realize this is not the most suitable. However, not only was it better than forever tainting my relationship with my dad by forcing into assisted living, but it’s also important to acknowledge that even 24 hour care at a facility cannot prevent illness or falls. For example, dad in fact did fall four times in four years. Two of them I was standing across the room, watched it happen, and could do nothing to stop it. Two of them, he was home alone, triggered the alarm, and was sent medical attention in short order. In today’s sensitive society, someone will certainly read this and suggest I was careless in my approach, but in dealing with family and aging parents, sadly there is no rulebook. The security system and the ensuing suggestions are how I managed the situation and created compromise with my stubborn dad.

 

Technology Solutions – Lights & Thermostat

On top of the integrated security system, I installed several other enhancements that would allow dad to easily do things such as turn lights on and off or adjust the temperature in the room.  The first thing was to install new ceiling fans that operated via remote control. I opted for indoor/outdoor fans designed for additional durability and included a wireless remote because dad couldn’t reach over his head to pull the chain. This would give him the ability to quickly cool down the room if he got hot. But I also wanted a solution for him to be able to adjust the HVAC temperature easily as well.  Sadly, even the thermostat on the wall was too high for him to reach.

 

For the thermostat I selected Iris by Lowe’s.  I liked it because the thermostat, light switches and the garage door could all be operated in the same iPhone app.  This gave dad the ability to turn lights on and off, which just like the ceiling fan and thermostat was impossible for him to do given the crippled state of his hands.  Admittedly, if I had it to do all over again, I would have utilized CPI security for these solutions as well.  That would have provided a single app on his iPhone that would provide the ability to control the security system, light switches, garage door, and thermostat all in one single app.  Our parents these days in their 60’s and 70’s are relatively proficient with their mobile devices, but still I could have reduced a little confusion by having all of these home automation technology solutions in one single app.  The cost would have been greater, but worth the price for simplicity for dad.

 

 

Finances

This is such a tough one to manage.  When mom first died, I was two months away from my wedding, was depressed, and now had two sets of bills to pay.  While my bills are largely automated and have been for some time, even at that juncture, mom paid all her’s and dad’s bills and did so via physical check. My recommendation to you is setup an online account at your parent’s bank.  This gives you the ability to monitor their spending for susceptibility to scams, but your sales pitch to them is your ability to automate the bill paying process.  Most banks give you the ability to receive an eBill without autodrafting the payment.  You can pay on demand as the bills arrive with no check writing, envelope licking, or stamp buying.  And of course full automation of bill payment can be implemented as well.  This took me some time on the front end, but saved so much time in the long run. Don’t skip this step.

 

 

Online Purchasing

Caution ahead! One thing dad fretted tremendously was the loss of ability to go to the store and buy things. As a result I set him up with AmazonPrime to give him the experience of freedom. In one to two days he could receive just about anything imaginable without the burden of asking someone to purchase it for and bring it to him. Final analysis suggests AmazonPrime was a good idea for all the obvious reasons.  The unintended consequences were the challenge. Online purchasing with AmazonPrime gave dad the comfort with online purchasing in general.  Between Fanatics.com and Nike.com, dad made thousands of dollars of purchases. Now we have the difficult challenge of cleaning his house of 30 years of collecting, plus 3 plus years of excessive online purchasing. 

 

 

In-Home Care

Security systems and home automation can only do so much.  Luckily for us, dad had a long term care insurance policy. His plan offered  $113,000 of skilled nursing or certified in-home care.  We chose of course in-home care, through an organization called Comfort Keepers, because that’s where dad wanted to be - home.  His care plan consisted of 6 hours of care per day, six days each week. Then on Sundays it was my turn.  In three plus years of this plan, dad used about half of the sum dollar total before he passed, one of my many regrets.  If he insisted on being at home, I should have forced him to allow Kim or Kathy, his in-home caretakers whom he did like, to be there more hours each day and on Sunday too. Occasionally I did travel on the weekend (though my wife and I, save our honeymoon right after mom’s death, have not taken a full week’s vacation in four years). We also needed to add a third person in the mix to give Kathy and Kim a break and the opportunity to vacation.  

 

Again, I believe a skilled nursing facility or assisted living would have the correct care model for a man as crippled and ill as my dad. However, now that he’s gone, I am extremely happy he was able to stay at home and we were able to create a model that enabled that. Staying at home also put dad in the situation to address his monthly mortgage. He had more than enough money in his retirement investments to pay off the house. Ultimately, he decided to pursue that option. Almost half of all Americans have a mortgage when they retire, and 20-25% of them never pay that mortgage off.  I know dad was proud to be a retiree from Southern Bell (AT&T) having never achieved more than a high school education, and still had the financial stability to own his home outright – even if for only the remaining year and half of his life.    

End of Life Medical Treatment

Not surprisingly, this is the most difficult one.  Around noon on Sunday September 30, 2018 while at Asbury Care Center, the rehabilitation center dad was at attempting to regain his ability to walk and stand, I received a call giving me an uneasy sense. I was standing on a ladder and didn’t answer the phone, but the voicemail was ominous.  “This is Asbury Care Center, can you call me at your earliest convenience regarding your father” the voicemail stated. I thought he had died. Of course, my return calls went unanswered, so I drove 100 miles per hour it seemed to Asbury just 4 miles from my house. When I arrived, nursing staff told me he had been unresponsive and had no pulse, but had come back around and was being transported to the hospital. He was on his way to Presbyterian Main, the facility he himself had actually verbalized to EMTs he wanted to go. After hours in the ER waiting room, we were able to meet with a doctor. After her analysis in dad’s presence, I followed her out of the ER room and asked “what’s the score here?” She bluntly told me it wasn’t good; “this visit was about to mark 3 ICU visits in September alone. We’re not quite in a hospice situation, but I don’t think rehabilitation is any longer an option,” Dr. McCrea told me.  

 

Over the next six days, I never saw or spoke to another doctor, despite my being there morning and evening almost every single one of those of days.  That ensuing Wednesday evening dad told me some disturbing things. He said the President (of the United States) had visited his room earlier, and said nothing but smiled at him. In addition, a little girl crawled in the bed and slept with him for a few hours as well.  Not to mention the additional patient he claimed had spent the bulk of the day in his room with her hospital bed lined up next to his.  I ignored the first two, but assured him that other patients were not placed in his room, ICU was very concerned about germs and would not do so. I asked nursing staff and was told it was ICU delirium – nothing to be concerned about. I sensed otherwise but didn’t push back. That was until Friday evening when dad called me and alarmingly stated, “I need your help! I’m at home and I can’t figure out how to get these lights on.” Alarmed I asked why he was discharged and who took him home.  That’s when the nurse, Brandon, spoke into the phone “Mr. Tompkins, you’re still in the hospital and all the lights are on.”  I asked Brandon to speak privately and told him this was not ICU delirium and that I suspected oxygen issues. He said they would run more tests, but that the metrics currently suggested he was properly oxygenated. I never heard back from Brandon or the hospital, and I never spoke to my dad again.

 

The next morning I was dreading going to the hospital.  What would I find? What condition was he going to be in? Was he going to lucid and upset with me for not visiting the night before after his call about being confused? At 9:44 am while sitting in my driveway about to go to the hospital, my phone rang; the number I didn’t recognize. I knew.  On the other end was ICU nurse Whitney describing to me some technical medical terms. I asked her to explain it as if I was an idiot, which I am. The nub of the issue? I was correct. While he was receiving adequate oxygen, he wasn’t able to breathe hard enough to expel the CO2. I now know it’s called Hypercapnia. His blood was being poisoned every time he inhaled and that’s why he was hallucinating, and why his vision was dimmed making him think the lights were off in the room.  I asked, “So what do we do?” Whitney informed the only solution was a ventilator, something dad, in his previous ICU visit just weeks earlier, articulated he did not want. I told her to hold off, but that I was already in my car and was literally 3.3 miles away. I arrived at his room somewhere between 10:10 and 10:13. He died at 10:05. I’ll never forgive myself for not being there in the one moment he really needed me – as he faced the unknown.

 

My guidance to you the reader if you find yourself in this situation might seem obvious to you, but somehow eluded me.  Six days earlier when Dr. McCrea said “we’re not in a hospice situation” I believed that to be true.  And here’s the thing. She wasn’t lying or misleading – there’s just no way to know.  Trust your gut in these situations. I knew that night in the ER when I asked Dr. McCrea the score, I should have known that analysis was a day-to-day and should not be considered a long-term prognosis. I should have been asking more questions every day. I should have requested meetings with doctors or learning what time of day I should be present in ICU room 11 to encounter the attending doctor.  I know there was no cure for what killed my dad. I know prolonging his life by pressing the staff days earlier that I suspected some sort of oxygen related issue, was only delaying the inevitable.  But knowing the truth, and that the clock was ticking a lot faster than I believed it to be, would have positioned me to be there before it was too late would have spared me what will now be a lifetime of anguish and regret.

 

Doctors and nurses can’t predict the future and give you a precise timeline to death. You also need to understand the death of your loved one is a part of their daily life. The urgency you feel isn’t the same for them, especially in cases like my dad who to them it’s boldly apparent he could slip away any minute. I still feel someone should have told me that. I’ve even contemplate legal action for the weeks of punishment I’ve already put myself through – I wouldn’t mind reimbursement for the lifetime of counseling I will need to attempt to move past not being there when I could have been. The point is, you may disagree that I did something wrong. You may disagree that I should seek litigation. But you can’t disagree that if I had it to do all over again, and that you’re reading this you may be in the same boat right now; that more information is always better, being a pest is better than being liked by nursing staffs, and getting in the driver’s seat of your parent’s final days is the ONLY option. I didn’t exercise that option in full and I have to live with that now. If you are amidst these circumstances, you can avoid my regret.

 

Final Analysis

It was difficult to have an aging parent unable to take care of himself all by himself at his house. But in the end, I am glad I was able to make that work, even if sometimes just barely.  I know at my end, I will want to the comforts of my own surroundings just as he did. All I can hope is he appreciated everything we all did to ensure safety mechanisms were in place, conveniences were created, and his best interests were always in consideration. I hope if you find yourself in a similar circumstance, some of this content can help you navigate a very difficult situation.