Today marks five months since my husband, Larry, who had Alzheimer’s disease, passed away unexpectedly, and over the months I’ve been reminiscing on the eighteen years we spent together and recounting the beautiful, painful, and bittersweet memories that make up our story. The process has been enlightening, healing, and at times painfully difficult, but also necessary.
In Larry’s case, the disease progressed slowly over the span of eight years and we lost Larry in many stages. You can read about the Five Stages of Loss, Things I Have Learned, The Grieving Process, and more on my blog.
From the beginning, my goal has been to honor Larry, keep his memory alive and raise awareness for how tragic Alzheimer’s is for not only the victim, but their families and caretakers, and help their families and caretakers feel seen, understood, connected, and supported.
I have found that although everyone’s circumstances are different, many Alzheimer’s caretakers have similar stories, experiences, challenges, and lessons learned. Connecting with other people who understand what it’s like to be a caretaker and lose a spouse has been very comforting for me… The Facebook group Surviving the Loss of a Spouse, Soulmate, is a great example of a group of people who have allowed me to see different perspectives on how people grieve and move forward in their lives after the loss of a loved one… Simply reading other people’s stories has been helpful for me. If sharing my journey through my blogs can help just one person, it makes it all worth it.
Last week on World Alzheimer’s Day, I shared some amusing stories on my blog, which you can read here, to raise awareness and compassion in a light-hearted way.
This week, I’m going to shed light on some really difficult scenarios that many people don’t talk about when it comes to caring for someone with Alzheimer’s.
Caregivers, the Invisible Second Victims
Alzheimer’s caregivers are often referred to as the “invisible second victims” because their challenges and contributions have historically been overlooked. The heavy burdens put on caregivers are underestimated and misunderstood, and people simply don’t have the awareness to know exactly what it takes and the emotional toll that comes with being an Alzheimer’s caregiver. In most cases, caregivers are not paid and well-trained professionals, they are family members.
The reality is, the majority of Alzheimer’s caregivers are adult children and spouses.
According to the most recent Alzheimer’s Disease Facts and Figures, an annual report released by the Alzheimer’s Association, “More than 11 million Americans provide care for family members with Alzheimer’s or other dementias. In 2022, over half of caregivers were providing assistance to a parent or in-law and approximately 10% of caregivers were providing help to a spouse with Alzheimer’s or other dementias.”
In addition, the report states that, “Caregivers of people with Alzheimer’s or other dementias provided an estimated 18 billion hours of unpaid assistance, a contribution to the nation valued at nearly $340 billion.
Alzheimer’s caregivers (and other non-dementia caregivers) are under these emotionally draining, physically challenging, and socially isolating circumstances because they care about this person and want the best for them. Larry and I always felt that taking care of family was the most important thing…in fact, we made it a theme in our family. Larry especially would frequently say, “Take care of each other” even if the boys were just running out to get food, when our oldest son and his family would be pulling out of the driveway, or when saying good-bye to the kids who lived out of town. Just like he would have done for any of us, taking care of Larry became and continued to be my priority until the day he physically passed. Even though they were some of the most difficult years of my life, I wanted to be the one to take care of him and especially keep him at home with me.
The Situations No One Talks About
For other people it can feel a duty or obligation to provide care, maybe because their relationship with the person was not healthy. When it’s a parent, they may have been abusive or neglectful, but the person who did those things is no longer present. That physical person is now an Alzheimer’s patient and may very likely be alone, confused, or suffering, or simply needs a lot of care, and having to balance the history with the reality is challenging… In those cases, it often feels like a burden. It’s not unusual for caregivers in these circumstances to feel resentful, angry, and it can feel like the abuse has just continued, albeit in a different way.
Now an adult child might have to care for a parent who never properly cared for them.
It is already extremely exhausting to manage every aspect of another adult’s life, from their every meal, to their medications, doctors appointments, hygiene, comfort, safety, and more. Adding a history of abuse, neglect, or even trauma to the equation amplifies the challenges and further complicates the relationship and decision making process.
Even if an adult child doesn’t want to care for their parents because of past abuse, full-time care is very expensive and something many people can’t afford. Therefore, it isn’t always a choice to be a care provider for someone with Alzheimer’s or another debilitating disease.
An article by Carol Bradley Bursack of the blog Aging Care that really stuck with me explains how a journalist called “Nancy”, was struggling with inner turmoil as her abusive mother and partially-absent father grew older and began needing care. Her mother was physically and emotionally abusive growing up and her father had been absent most of her childhood due to his career.
The article explains how Nancy had spent years in therapy trying to overcome her childhood trauma and forgive her parents. She knew her father was aware of some of the abuse but likely didn’t know the extent of it, and didn’t know how to handle it so therefore did nothing to stop it. She was able to forgive her father because he acknowledged his wrongdoings and they eventually formed a close relationship… When he needed care, Nancy felt confident that she could be involved.
However, her mother refused to acknowledge the abuse and denied that any of it happened… Whether that denial was conscious or subconscious, didn’t matter to Nancy… The fact of the matter was that her mother didn’t take responsibility for her wrongdoings or the pain and trauma she caused Nancy and certainly didn’t apologize or show remorse.
Nancy now had to figure out how to move forward once her mother inevitably needed care. Caring for her mother could mean triggering past trauma, experiencing more trauma, and potentially dishonoring her own boundaries, and would also require a lot of deep inner work to overcome her long-term resentment and newfound feelings of guilt for not wanting to be the one to take care of her mother.
Does an adult child have an obligation to care for the parent who molested them? While this may seem like an absurd question, there are adult children who have to find the right answer for their lives.
How do they decide whether or not to care for a parent who maybe had ample financial resources and squandered them away and now they don’t have the finances to cover their own care? Do adult children contribute financially? What if one sibling refuses to pay for the care? Do you bring the parents into your own home?
Is an adult child expected to uproot their life to be their parent’s care provider, or is it acceptable to set boundaries and limit their involvement?
The parent who is responsible for having abused or neglected them or someone else is no longer “here” mentally, even though their physical body is.
Feelings of guilt, resentment, fear, pity, and compassion are all very common, however they can feel contradictory and confusing, making it harder to decide how to move forward.
Caregivers for a spouse with Alzheimer’s also face unique circumstances that can be very difficult to deal with.
A client, we’ll call her Martha, recently shared with me that her husband with Alzheimer's would say to her, “You’re okay to look at but I want my Martha. She is beautiful,” multiple times a day. Keep in mind that Alzheimer’s patients often incessantly repeat themselves, so “multiple times a day” likely means dozens of times a day.
Larry and I had a phrase we would often say to each other: “I love you the mostess.” I never thought I would say this, but there is a limit to the amount of times you can hear someone profess their love to you. After hours of hearing the phrase every couple of minutes, especially while in close proximity, like on long car trips, it became very triggering for me. There were times where I would be driving for hours just quietly weeping. I would say to myself, “Who gets upset about being told that you’re loved?” I would feel guilty about those feelings.
During our years together, Larry and I would often ask each other, “Can I get you anything?” when we were sitting on the deck together, watching tv, or just hanging out. During the last several years, Larry would obsessively ask me, “Can I get you anything?” For example, if I would go out on the deck alone to read or just have some down time, he might come out every five to ten minutes to ask if he could get me anything. If I was lying down in the middle of the day just to get a quick nap, he might come in a dozen times in an hour. Even when I’d be in the shower, he would typically ask, “Can I get you anything?” a couple of times. It got to the point where the phrase “Can I get you anything” made me feel like I was going to jump out of my skin.
Another woman I met was taking care of her husband, Frank, with Alzheimer’s for five years and she was with him nearly 24/7. One day there was a knock at the front door and when she opened it, a woman was standing there. That woman turned out to be her husband’s twenty-five-year-old daughter who she never knew about (they had been married for forty years). She made the difficult decision to place him in a home… It was a very personal decision because the man who cheated and fathered a child with another woman was no longer the same man standing before her, but being his full-time caregiver with this newfound information was just too painful.
Another example was Leslie and Bill. They had been married for nearly 25 years and while they had no children together, Bill had grown children from an early marriage. As Bill’s Alzheimers got worse and his freedom had to be modified, his children began criticizing Leslie and even accusing her of lying about his condition. At one point, when Leslie was out for the day, they came into the house and removed Bill, taking him to one of the kids' own home nearby, exclaiming to Leslie that she was being unreasonable and things weren’t that bad. After a week, they tried to get back in Leslie’s good graces so they could bring him back home. By then, Leslie had had enough and said, “No, you took him and now you can keep him.” Within a month, Bill’s kids placed him in a facility… something Leslie was committed to not do.
These are just a few examples of the unique circumstances and family dynamics of having a loved one with Alzheimer’s that you rarely hear about and would probably never even consider when contemplating the difficulties of having a loved one with Alzheimer’s.`
Hiring Outside Help and the Challenges That Come With It
If a person chooses to or has to hire outside help, there are unique challenges that come with it. Alzheimer’s patients, who are confused about their surroundings and those around them, can have a tough time adjusting to new people. They may not be comfortable having strangers in the house and might not understand that that person is there to help them. If they do understand or remember the person is there to help them, they might not welcome the help and want to continue living independently, even though it is dangerous for them to do so.
At one point, the decision was made that Larry could no longer drive. Despite feeling sure that I had put the keys in a safe place, one day I was sitting in the parking lot of our local pharmacy when I looked up to see from behind, a man walking across the parking lot. There was something so familiar in the way he walked. I got out of the car to approach him and sure enough, it was Larry. In that moment I was afraid and I did something you’re not supposed to do with an Alzheimer’s patient: I got logical. I said to him, “Larry, did you forget that you don’t drive anymore?” He responded with, “Of course I drive. I just wanted to get out of the house. Can I get you anything?” To this day, I’m grateful that the circumstances lined up and that I was able to “catch him” driving. It worked out because no one was hurt. I came to the realization that I was really going to have to secure the car keys.
Another even scarier example involved a gun… Larry had a gun permit and he had carried a gun his whole life and had at one point even been a competitive marksman… carrying a gun was an important aspect of how he saw himself. Years ago, he had shared that it was part of his bravado and swagger. So I clearly understood taking his guns away would be devastating to him because when Larry looked at himself in the mirror, he still saw himself that way. However, in a single moment, I had to make a permanent decision, regardless of the impact on Larry.
We had been sitting together on the sofa when Larry got up to go to the bathroom. It was then I noticed to my horror that there was a loaded gun right under where my head had been resting just moments ago. He and I had multiple conversations and the family doctor and I had even discussed it, but that day I knew I had no choice and rather than trying to talk to him about it again, I quickly picked up the gun, went upstairs, and collected all the guns out of the safe, and hurriedly hid them away in a secret box in my closet.
For several weeks, although he didn’t ask me or say anything about it, I could tell by his “sneaky behavior” and his angst, he recognized the guns were missing but had no idea what had happened to them and was looking for them in a way that he did not want me to know. For nearly a year afterward, I found small handguns in unsuspecting places, for example on a shelf in the basement where childhood memorabilia was stored, in the garage where dog supplies were kept, and in his closet mixed in with his t-shirt collection.
One evening I went out with friends and left Larry at home with a trusted caregiver. When I returned, they were both very, very upset. He had been badgering her to leave and even tried to throw her out and call the police.The caregiver, a middle-age African American woman, was visibly terrified. I later had to explain to the chief of police in our community that if they received a call from an older gentleman at our address about an intruder, it’s likely not an intruder, but, ”He has Alzheimer’s”.
When I went on a business trip the month before Larry died, I kept getting phone calls from the caregiver that Larry was threatening to throw them out again. One caregiver was sitting in the driveway crying while I was doing a keynote address and got the phone call. The whole situation was stressful for everyone involved, including Larry, who at the time was feeling the strong emotions of losing his control and independence, which really upset him.
Reaching the decision to hire this at-home caregiving company came after all of these stressful and dangerous situations. For months, Larry refused to let a stranger into his home to take care of him… I respected his stance and let him stay home alone for as long as I could, but eventually after discovering he had accidentally locked himself out of the house and it had taken him several hours to process that he could walk to a neighbor’s to get help, I had no choice but to hire professional caregivers. I couldn’t leave him home alone knowing that next time, he might potentially leave the house and wander off or put the stove on and forget about it… Taking him with me everywhere I went was certainly not an option.
Eventually, we found a wonderful caregiver, Irene, who Larry eventually saw as more of a granddaughter and despite having a few challenging moments, they got along really well and Larry welcomed her company. He would walk her out in the evening when she left, worry about her driving at night, and be compulsive about keeping her preferred beverage well stocked, even if he couldn’t remember it was Pepsi. If it weren’t for Irene, I’m not sure what I would have done. I am eternally grateful to her for her care and dedication and helping Larry live as comfortably as possible in his last few months.
Unknown Life Expectancy, Another Unspoken Challenge
Another considerable challenge of the disease is that sometimes the Alzheimer’s patient has otherwise good physical health so you don’t have an idea of their life expectancy. For example, I have a family member whose mother, aside from having Alzheimer's, is in excellent health… Her lab work is nearly perfect. One of the major concerns is that the Alzheimer’s patient may need care for years, even decades.
According to the Alzheimer’s Association’s Alzheimer’s Disease Facts and Figures annual report, “Studies indicate that people age 65 and older survive an average of four to eight years after a diagnosis of Alzheimer’s dementia, yet some live as long as 20 years with Alzheimer’s dementia.” As the report says, “This reflects the slow, insidious and uncertain progression of Alzheimer’s.”
When you have a family member or loved one who has terminal cancer or another terminal disease, there is typically a projected life expectancy, although that can still be hard to predict and heartbreaking to hear, expectations are set and plans can be made… Will there be a last family vacation? Are there things that need to be worked out like words unsaid or an opportunity to make amends?
For example, I went on a work trip the month before Larry died. Had I had any idea that we only had a month left together, I never would have even considered going.
There is so much uncertainty… For me, when coming to terms with Larry’s rapid decline, I decided to have a “big” birthday celebration for his 79th birthday… I was afraid to wait until his 80th birthday. I expected that he would still be alive but had to make the assumption that he might not know “all these people” in another year. His 79th birthday ended up being his last, so I am forever grateful that we all had that special time to celebrate him together, even if there were times in the evening when he didn’t remember why we were there.
Larry had other contributing health factors that resulted in his passing, but for the most part they were controlled chronic issues. He had acute incidences of being sick but most issues were non life-threatening. He could have lived ten or more years, which would have taken my caregiving up to a full eighteen years. I can’t imagine the toll it would have taken on me mentally, physically, and emotionally to continue being Larry’s primary caregiver for another ten years.
As a caregiver, that in and of itself is a stressor because you have no idea how long to plan for care.
Still, his death was unexpected and the pain of not saying our final goodbyes is still very difficult for the family. An example of this was when I had recently asked a family member to come for a visit to spend time with him while he could still remember who they were and potentially be able to have some meaningful conversation, their response was, “It’s not a good time,” but that they would try to come in July for his birthday… The reality is they were in town a week later for his funeral.
All things considered, it’s no surprise that being an Alzheimer’s caregiver typically also has negative impacts on a person’s physical and emotional well-being. In my previous blog, I mentioned that the Centers for Disease Control reports that caregivers of Alzheimer’s patients are at a greater risk of anxiety, depression, and poor quality of life than caregivers of people with other conditions. Two separate studies reported the rate of suicide attempts in caregivers of patients with dementia are at increased risk ranging from 6% to 16% compared to those who are caring for non-Alzheimer’s and other dementia patients.
An Alzheimer’s caretaker is also more likely to neglect their own health… Not getting enough sleep, not eating enough or not eating balanced meals, and exercising less (if at all) are common examples. Personally, my physical health really declined while I was Larry’s primary caregiver because of the stress, physical demands, and uncertainty. For example, since Larry’s death, my blood pressure has stabilized and I’ve been able to make exercise a priority, so I not only feel better but I have lost weight and because of that, all my lab work has improved. I went into further detail about my health and how it has improved over the last few months in another blog, which you can read here.
The stress can be so intense that sometimes, caregivers pass before the Alzheimer’s patient. According to one seventeen year study published in the National Library of Medicine, “Eighteen percent of spouse caregivers of a person with Alzheimer’s disease or a related dementia died before their care recipients, even though spouse caregivers had a significantly lower risk of mortality than their husbands or wives with Alzheimer’s or a related dementia.”
As time went on I began to be concerned about what would happen to Larry if something happened to me, much like you would as a parent of young children. I went so far as to research and tour nearby facilities and had candid conversations with our adult children that it was my wish that, should something happen to me, Larry would stay in the house for the first couple weeks after my passing before being placed in a facility within our community. I took comfort in knowing that although he wouldn’t be able to remain at home, he would be well-cared for and the boys would see him through and support him for the rest of his life, even though it would mean potentially altering their own life paths.
If your abusive or toxic parent has recently been diagnosed with Alzheimer’s and is beginning to decline, understand that regardless of the history, you are not obligated to be their caretaker. Although your parents had their own trauma that may have impacted their parenting, they made their own decisions that ultimately continued the cycle of trauma and abuse and put you in this difficult circumstance. I understand that in many cases, people have no other choice because of the financial burden of hiring care. If that is the case, please know that there is hope. The fight against Alzheimer’s is ongoing and as research continues, new medications are being approved and placed on the market.
Hopeful News in the Fight Against Alzheimer’s
According to an article released by the Alzheimer’s Society in July, there are 141 drugs currently being tested for the treatment of Alzheimer’s. The article states that, “78% of these drugs are designed to try and slow down how quickly the disease progresses.” The three most promising drugs that have yielded positive outcomes in clinical trials are Lecanemab, Donanemab, and Remternetug.
The FDA released a statement announcing that these medications are in a new category of medications that target the fundamental pathophysiology of the disease.
The Alzheimer’s Society states that, “Donanemab slowed how fast memory and thinking decline by more than 20%,” “Lecanemab slowed down the decline in thinking and memory skills by 27%,” and, “Whilst the full results of Remternetug trials won’t be released for a while, early data has suggested that Remternetug may be more effective than Donanemab is.”
Lecanemab has been fully approved by the FDA and hopefully the other most promising medications will quickly follow suit.
This hopeful news comes after decades of little progress in the fight against Alzheimer’s, and although these medications aren’t a cure, they will undoubtedly help Alzheimer’s patients and their loved ones have more quality time together as it slows the progression of the disease. With the groundbreaking research and new information and understanding of Alzheimer’s, scientists will be able to continue the development of medications that are even more effective.