My beloved husband, Larry, came into my and my four sons' lives like a Beacon of Light and continued to shine his Love on all of us as the years went on. Larry was the most kind, compassionate, understanding, honest, wise, and intelligent man I knew and was a friend to all. He had the power to make anyone feel welcome, safe, and seen. Family, friends, children, and dogs were the only things that really ever mattered to him.
In 2015, Larry was diagnosed with Alzheimer’s disease.
Our family had no choice but to watch as this devastating disease slowly progressed and stole away the husband and father we loved so dearly. Throughout the years, we did our best to hold on tightly to the moments when life felt “normal” and when times were tough, we were always there for each other, looking back on the stories and memories with Larry that we cherish so deeply.
Larry would always tell his family to “take care of each other” and I think those words embody the essence of who Larry was; a selfless man whose first priority was always to make sure his loved ones were supported and well taken care of.
As Larry’s primary caretaker, I learned a lot about caring for someone with Alzheimer’s disease, as well as caring for myself so that I could be there for Larry and our children. Today, I want to share parts of our journey and some of the lessons I learned in hopes of helping someone else who is going through a similar situation. Here is what I learned:
In the later stages, the Alzheimer’s patient is not the same person anymore.
One painful realization I had while navigating this journey was that towards the end, Larry was not the same person we knew anymore. While it wasn’t his fault, it did dramatically change our lives.
If you are caring for someone with Alzheimer’s, it’s crucial that you get the support you need to take care of yourself so you can provide them with the best care possible.
In our experience, Larry’s disease progressed over the span of eight years, and was in the later stages by the time he passed away. It was utterly heartbreaking to slowly lose the man we loved, not in the physical sense but mentally and emotionally. In the beginning, Larry’s personality and behaviors were the norm and Alzheimer's behaviors were the exception, but as the disease caused more destruction, the Alzheimer’s-related behaviors became the norm and Larry’s true personality coming to the surface was the exception. We all fought trying to maintain Larry’s identity for as long as possible, but eventually it was out of our control, and we had to face the heartbreaking fact that he wasn’t with us in the same sense any longer.
It is important to redirect the Alzheimer’s patient.
When a person with Alzheimer’s sets their mind on doing a certain task or activity, like going to the store by themself, it can be very difficult for them to focus their attention elsewhere. If it’s not safe for them to do what they want, it’s often hard for them to understand why. As a result, they may get frustrated and argumentative. This isn’t unique to Alzheimer’s patients, as most people without Alzheimer’s don’t like being told what they can or can’t do, but when you add in the other symptoms an Alzheimer’s patient is experiencing, like memory loss and confusion, emotions are heightened and very distressing for them. Because of this, it is never a good idea to engage in an argument. Instead, redirecting them to something else that they’re interested in and can do by themselves may help reduce stress for both the Alzheimer’s patient and their caretaker.
Compassionate lying is sometimes the most humane thing you can do.
When we first started dating, Larry and I promised to always be honest with each other, so this lesson was particularly painful to learn. Although lying is not something most of us ever want to do, compassionate lying is sometimes necessary and in the best interest of the Alzheimer’s patient.
Just a few weeks ago, I was planning on visiting one of our twin sons in Philadelphia for his 21st birthday. I knew it was important for Larry to be there with us, but based on the two previous trips I had taken with him, I knew taking him on this trip would have been extremely difficult for both Larry and myself.
I faced a difficult decision… I could either be honest with him, which would have broken his heart and potentially made him feel as though I was betraying him or forgetting about him in some way, or I could compassionately lie and tell him this was a business trip. Over the next two weeks, I thought about the outcomes of each option, consulting with a therapist, our family doctor, and our sons and daughter-in-law. I really struggled with the idea of lying to him, as our relationship was always based on trust and honesty, and I struggled with wanting to be an honest person, but knowing the honesty would be hurtful to him.
Facing this decision led to a thought provoking discussion that had me wondering- who was this really about? Was it about me and the guilt and discomfort I would have felt having to lie to Larry, or was it about doing what was best for him and his well-being?
As difficult as it was, I made the decision for Larry to stay at home with a caretaker. In the weeks leading up to the trip, I realized I had to get comfortable with the discomfort of lying to him, and I was able to cope with my guilt by reminding myself that these difficult circumstances warranted my decision and compassionate lying was the humane thing to do.
In the end, Larry passed away the day before I was to leave for the trip, so I was ultimately spared the discomfort of following through with my decision.
Ask questions about periods of their life that they do remember.
Depending on the situation and the stage of Alzheimer’s the person is in, they are likely not aware of their recent experiences or what’s happening in the world. This can make it challenging to have what feels like a meaningful or productive conversation with them. Rather than talking about recent experiences, events, or topics, reflecting on older memories that they still remember can help the Alzheimer’s patient feel more in control and can help you feel a sense of normalcy.
You can’t give what you don’t have.
Taking care of someone who has Alzheimer’s can be physically exhausting and emotionally depleting… But while physical exhaustion can typically be resolved in one or two nights of good sleep, dealing with emotional exhaustion is much more complex. No amount of good sleep can heal emotional depletion, so you must find ways to help your mind and heart rest and recharge.
We all understand that if we only have $500, we can’t give someone $1,000, no matter how much we may want to. It's a concept that seems logical and easy to accept, but some of us have a harder time understanding the concept when it comes to emotional “currency”.
Maybe what you could give six months ago is now way past the capacity for what you can give now, and that’s okay. The challenges of caring for an Alzheimer’s patient increase exponentially as time goes on. As with anyone, your needs are not static… they are ever-changing and will fluctuate as you transition through different phases of your life. Be willing to adjust your expectations for yourself.
While it might feel selfish or wrong to take a trip by yourself, go out for the evening, or close your bedroom door and act like you’re not home while you take time to regroup, it’s often what’s best for your own well-being, which then allows you to be a better caregiver.
Don’t let the least qualified person (in this case the Alzheimer’s patient) make the decisions.
For many people with Alzheimer’s, resistance to change can be their way of trying to retain their independence and a feeling of control over their life. In our situation, Larry was someone who always had control in his life and had a powerful personality.
When it came time to consider hiring a caretaker to come to the house when I wasn’t there, Larry really resisted and was very vocal about not wanting someone in his home. Larry continuously made the point that he spent much of his life being on his own. However, it came to the point where if he was home alone, he would sit in front of the tv, understimulated, and not eat. I tried discussing it with him on multiple occasions but he didn’t have the ability to discuss it in a logical, strategic manner.
After interviewing multiple at-home care agencies, I made the decision to hire the one that was the best fit for us and scheduled a caregiver to come to the house. I didn’t make a big deal out of it, gave Larry little or no explanation as to why, and acted, to the best of my ability, as if it were normal. After a year of Larry’s push back before I made the decision and going through the process of finding the best care provider for him, he accepted it very easily and even formed a beautiful relationship with Irene, his primary caregiver. Larry came to view Irene as he would a granddaughter, and she has struggled with the loss of him as well. The hope is that she always remains a close family friend.
In hindsight, I realized I should have made the decision much earlier. At times, it felt counterintuitive to make even the most basic decisions for him and I felt horrible having to go against his wishes, but I understood that oftentimes his wishes were not in his best interest.
Caring for an Alzheimer’s patient is experiential.
No matter how much you read about it, talk about it, or even spend time with an Alzheimer’s patient, you can’t really understand what it’s like until you live it. Our struggles with Larry’s sleeping pills are a prime example of this.
Larry had a long history of sleep issues. Early in his Alzheimer’s diagnosis, the doctor had him discontinue his use of Ambien, a common sleep aid that can alter the brain over time and increase confusion among Alzheimer's patients. Unfortunately, Larry had become emotionally dependent on Ambien, so when he could no longer take it, he formed an obsession with sleep aids.
After trying multiple sleep medications, such as Trazodone and natural over-the-counter options such as melatonin, nothing worked. His anxiety and fixation on sleep aids became overwhelming. After exploring every available option, we settled on medical marijuana in capsule form. The results were life-changing… he started getting high quality sleep, and instead of sleeping his usual four to five hours, he was able to sleep seven to nine hours and wake up refreshed.
However, while the sleep problem was solved, a new problem emerged. The medical marijuana capsules worked most effectively when taken two hours before bedtime. The sleep pill became a major issue in our lives because Larry could not remember that he had taken the pill, and he would obsess about it and ask for it over and over and over, sometimes every two to three minutes, for hours. He would say things like, “You didn't give me the pill,” and, “I lost the pill.” He would sometimes even accuse me of lying about giving him the pill.
Early on I tried being logical with him and saying things like, “Larry, why would I go to the medical marijuana dispensary and spend hundreds of dollars on pills and then not give them to you?” But, unfortunately, as I mentioned earlier, logical points usually don’t resonate with an Alzheimer's patient.
Sometimes at the end of a long day of dealing with the reality of caring for an Alzheimer's patient, running a business, and just trying to get through life resulted in feeling emotionally depleted and physically exhausted by the time we got to our nightly pill drama.
Eventually, nighttime became a time of immense stress and challenges for the both of us… For Larry, his compulsion to take the pill and not remembering he had already taken it was causing anxiety for him, and his repetitive attempts to take another were resulting in insurmountable stress for me. There were more nights than I care to admit that as he fussed about the pill, I sat on the sofa, weeping.
I would like to say that I always handled these situations beautifully but the reality is, I did not. During the times when Larry was lucid and like his true self, he would express how grateful he was and that because of the love and support he had, he was better able to accept his Alzheimer’s.
There are lots of things about caring for an Alzheimer's patient that are experiential. You can read about it, talk about it, even spend time with them, but until you live it, you can’t really understand it.
“The heart remembers long after the mind forgets”
Despite his Alzheimer’s, right up until the very end, Larry never forgot his love for his family, friends, or the people he cared about. The morning before he passed, as we sat on the bed, he said what he almost always said, “I’m a very lucky man,” and I responded with, “We are all so very fortunate.” He was and always will remain a gift to our family.
He will never really be gone until his name is spoken for the last time… He will live on for generations.