Jim’s Story

My dad, Jim, died in May of 2016 from complications resulting from Alzheimer’s dementia. It was a long and sad end of the road for him, and for the rest of us. Although, by usual score keeping, he had lived a long life (he died at 85), Jim had spent his last four years on earth in a nursing home.[1]

If we could have accommodated him better at home, we would have taken that option. But, for us, it was infeasible. The nursing home was the proverbial lesser of two evils.

By all accounts, he had been healthy through most of his adult life. He was like a rock. For a while, it seemed like he was defying the aging process. Jim sported naturally brown hair well into his 50s. Except for the occasional, seasonal cold, he was exceptionally healthy decade after decade.

Things began to take a turn for the worse for him after a trying bout with appendicitis in his sixties. Given his age, the condition wasn’t immediately recognized for what it was, and he spent several days in the hospital.

After that, Jim just seemed a little older, a little more tired, and a little less bullet-proof than before.

Having been in maintenance and display since the 1950s, the work started taking an obvious toll. When he broke a toe after a heavy load slipped out of his hands, he took it as a “sign” that immanent retirement might be a good idea (from a physical standpoint, anyway). (For the financial perspective, stay tuned for a future post.)

Being 22 years my mom’s senior, he then found himself alone for most of the year. My mom is a school teacher, so they got to spend summers together (well…partially). But for nine or ten months out of the year, Jim was basically alone in the house.

He golfed once in a while. Though his list of available partners was exceedingly short – and shrinking yearly. Many of his older friends and acquaintances had moved, or moved on to the great beyond. Jim did utilize some of his new-found time for fix-it, home-improvement, and wood-working projects. But he also watched a lot of television, and he gained more than a bit of weight.

Something happened at around age 75. The doctor called it a “TIA” – a transient ischemic attack. The nurses termed it a “mini stroke.”

Jim had ignored feeling a “bit off” one evening. He went to bed as usual. When he woke up, one side of his body just wouldn’t respond correctly. His face displayed the telltale “drooping,” and his speech was slurred. It’s difficult to say for sure, but we think that’s when it all began. That was the point at which his dementia “set in.”

Both I and my sister lived out of state for some of this period. We were, therefore, out of touch a lot of the time, and largely ignorant of the many subtle (and some not-so-subtle) changes in his personality and habits.

There were a few odd things that we noticed. On several occasions, my parents visited and my dad’s fuse seemed to have shorted considerably. His little, red Ford Escort inexplicably started accumulating sticks. He called more frequently asking and re-asking the same questions (often about how to get the television working).

My (then-)wife and I moved back into the state in 2004. We slowly became aware that Jim was having some trouble getting around, remembering things, and generally taking care of himself and the house. He would lock himself out with alarming frequency.

At the time, we just chalked it up to being a natural part of the aging process – the so-called “benign senescent forgetfulness.” In retrospect, we know better.

In 2008, economic (among other) pressures finally prompted me and my wife to consider moving ourselves and our two children in with my parents. Without appreciating either the full medical or monetary picture, we thought we had constructed a viable plan.

Our primary idea was to pool resources for the mutual benefit of my parents and us. We also knew that Jim needed help. So an added benefit was that my dad would get some much-needed company and in-home assistance.

For one year.

That’s how long it was supposed to be.

The bright idea was for the four of us (six of us, including our young children) to move in together. We would help them fix up their increasingly dilapidated home. Then, after the allotted twelve months, we would vacate the premises, leaving half the structure empty and making it easier for them to get the house into saleable shape. What could go wrong?

Almost everything; that’s what.

I’ll just relate a few of the most salient things. Firstly, my now-ex-wife was laid off. That virtually destroyed any hope we had about limiting our little experiment to 12 months. Pre-layoff, we had options. Post-layoff, we were – for all intents and purposes – stuck.

Secondly, we had two young children: four and eight years old, respectively. At that time, I was also a stay-at-home dad and homeschooling parent. Additionally, I was working to finish a master’s degree.

Thirdly, and most pertinently, being up close with my dad on a daily basis revealed to me just how badly off he was.

Behaviorally and cognitively Jim was aggressive and angry. Many days I would wake to sounds of him screaming at my mom. He accused my kids of stealing from him, and rummaged through our possessions looking for items – many of which may not even have existed.

Frankly, I just thought that he had turned into a gigantic jerk. I feel terrible for having jumped to that conclusion. But I was ignorant regarding the signs and symptoms of Alzheimer’s Disease.

I was impelled to write a letter to Jim’s physician, outlining my concerns and requesting that my dad’s driver’s license be revoked. It was painful to be faced with the evidence. It was even worse to have to advocate for placing restrictions upon my own father.

Yet, it was necessary. I could not, in good conscious, turn a blind eye to my dad climbing behind the wheel of a car. He could have hurt himself. Even worse, he could have injured or killed another person.

Physically, too, he was having major problems. He was frequently out of breath and his complexion became wan and sickly. Many restrictions would have been advisable – not to say justifiable – on this basis alone.

We soon discovered that he had severe arterial blockages and colon cancer. It seemed likely that he was on death’s door. He underwent and emergency triple-bypass surgery.

In hindsight, it is tempting to wonder – if not wish – that we had not elected to get him that surgery. A heart attack would arguably have been a more “dignified,” and certainly a quicker, death than the slow degeneration that obtained due to his dementia.

You make the best decision that you can based on the information that you have at the time the decision has to be made. Plus, we loved him. How do you decide not to get your dad the procedure that his heart needs?

Not long after the heart surgery – I think just a matter of six months or so – he had to go under the knife a second time. Jim had advanced colon cancer and the doctors recommended a colectomy. Once again, we did what we thought was best for his wellbeing.

The two surgeries improved his life-expectancy. But his “quality of life” was another matter.

He had a horrendous time in the hospital. He kept trying to remove the apparatus for his intravenous medications. He wandered.

To our surprise, the hospital seemed ill-equipped for these difficulties. Nursing staff looked to the family to monitor Jim. We kept thinking that things would calm down once he came back to the familiar backdrop of his house.

Whether it was the psychological trauma of the surgeries, or the residual effects of the anesthesia, simply the Alzheimer’s running its course, or some combination of these, he returned home far worse off mentally than he was when he was first admitted.

Over the next few years, I made many changes to the home environment in order to try to manage my dad’s care. I will describe some of what I did in subsequent posts.

For present purposes, suffice it to say that Jim got progressively intractable. By necessity, I had the place locked down. My dad was not at all pleased about the restrictions. The atmosphere was oppressive.

If I wasn’t actually intervening to prevent my dad from some potentially harmful activity, then I was worried about having to do so. I felt physically ill much of the time.

I contacted the Alzheimer’s Association for advice several times. On one occasion, I was told to call the police when my dad became unruly. I did so a few times. The police appeared as surprised as I was by the advice and asked me, “What would you like us to do?”

I think that the idea was to calm my dad down by tapping into his (presumed) latent respect for authority. The mere presence of a uniformed officer might be enough to do the trick. Looked at this way, perhaps it was a success. Looked at as a use of municipal resources and tax dollars, it was arguably something else.

This state of affairs persisted for around four years. In many ways, I had to put my own life on hold. It contributed to the dissolution of my marriage. To make matters worse, each new week seemed to reveal weaknesses in the home “fortifications” that I had implemented.

I invested stolen moments to make calls for help. I invested adult daycares, assisted-living facilities, respite-care services, and the like. My options were unimpressive.

On one particular phone call, the representative explained that her organization’s benefits were only available to persons who had no family. When I asked about how I might find help for the overwhelming job of caretaker, she flatly said: “You’re it.”

I therefore persisted. I put my academic program on hold. I researched topics such as “how to deal with Alzheimer’s sufferers.” I tried to incorporate as many environmental and lifestyle changes as I could. Eventually, however, despite all the alterations that I had made and all the advice that I had been given (and that I had taken), it become infeasible for me to care for Jim at home. He was too combative an uncooperative. Everyone else was too apprehensive.

Nearing the edge of my rope, I put all of my energy into finding out about nursing homes. When my dad napped, or was settled in watching a movie, I made phone calls, collected information, scheduled visits, and the like.

The investigative process took months and had two main prongs. Number one, I had to work out the financial aspect. How much would the care cost? How could we pay for it? Were there programs in place to assist us? Number two, I had to work out the logistics. What facilities had available space? How far away would we have to go? How would we get him there?

Because of my parent’s lackluster financial situation, Medicaid was the only viable option. However, my dad still had a few thousand dollars in his investment account as well as his Social Security income. We therefore had to go through what is termed a “Medicaid spend-down.”

Basically, all my dad’s available funds would be used to pay for his care until he ran out of money. At that point, Medicaid would kick in.

My mom would be allowed to keep the house and one car. She had to spend down a portion of her own retirement account. And she lost my dad’s Social Security check, upon which she had depended.

But there was no other option.

And then there was a complication.

My dad did not have any power-of-attorney document in force. By the time my family realized the need for one, my dad was too far gone to sign one. In such a case, the only available course of action is to bring the matter before a court, obtain a declaration of mental incompetence for my dad, and a judgment granting my mom conservatorship and guardianship.

Thankfully, my cousin is a lawyer and agreed to take the case “pro bono,” as it were.

My dad was finally admitted into a nursing home in the summer of 2012.

Jim’s belligerence made it difficult for him to be integrated into the new setting. He was moved from floor to floor several times – once because of a “fight” with another resident. The clothes my mom brought for him were lost or stolen. He was usually dressed in garments that she did not recognize. His television and VCR were dropped and damaged. The VHS tapes went missing.

When he went in, he was able to walk around by him; he was “ambulatory.” Within a year of so, he was non-ambulatory. The attending physician had him on a litany of pharmaceuticals.

Yet, as I said, I could see no other alternative.

He lived for several years being pushed in a wheelchair from his room to the dining area and back. Occasionally, we would get calls that he had been found on the ground. In many cases the actual “fall” was unobserved, but the best guess was that he had tried to get up from his chair and lost his balance.

He survived a blood clot, pneumonia, and a handful of urinary-tract infections. He slowly lost his ability to speak, feed himself, and even chew his own food.

At the end, he could not swallow at all and he could only breathe with great difficulty. My mom and I were at his bedside – along with occasional support from a hospice nurse – for over a week before he finally passed. The family viewed his death as a merciful release from a body that his deteriorated brain could, seemingly, no longer control.

(For more details on my family’s experience with Jim’s death, see the post “How Does a Person Actually Die From Alzheimer’s Dementia?“)

[1] For a male, four years in a nursing home is about two years longer than most men will spend in such an institution. On average, men spend between 1 to 3 years in a such a facility.