Maturing Into Alz

Everyone has heard of Alzheimer’s disease and stories about the difficulty in providing care for those with Alzheimer’s. There are seven types of dementia with sub variants, but Alzheimer’s makes up 60 to 80% of all dementia cases. My comments will deal only with Alzheimer’s. Let us face it: only the ones dealing with the disease directly really have a grasp of what Alzheimer’s disease looks like or what life is like as a caregiver. Here is the bottom line: Alzheimer’s is a degenerative, non curable disease of the brain that slowly kills off parts of the brain. The result is early death with probable institutionalization that is it!. Each person is unique, but progressive memory loss, disorientation, loss of identity, delusions, and not knowing who family and caregivers are, are universal symptoms. People with dementia lose cognitive skills over time. Mobility and incontinence often become issues. The ability to do one’s care dissolves, and usually the family must do it all for the Alzheimer’s person. The person can seem to revert to the mental capacity of a three year old in diapers. There is a loss of dignity for the care receiver and anger and resentment by the caregiver. In later stages, if the caregiver can no longer manage care at home, they must move the Alzheimer’s person to a memory unit in an assisted living facility. In Colorado Springs, it is currently around $6,000 per month for an assisted living facility and $8,300 per month and up for a skilled nursing facility. It can run higher as care needs increase. Two statistics of note from the Alzheimer’s Association: in the US, 10% of people aged sixty-five and older have Alzheimer’s. For those aged sixty-five to seventy-four, the number is 5%. For those aged seventy-five to eighty-four, the number is 13% and for people eighty-five and older, the number is 33%

Alzheimer’s caregiving is a scary and expensive business!

This discussion addresses existing caregivers and presents a description of the care giver’s maturation process. The focus will be on the five stages of maturation. A caregiver can follow written guidelines, hear experiences described in support groups, and attend classes by the Alzheimer’s Association. These provide a wealth of information and support. I focus on maturation because it addresses the caregiver’s mental health issues. Books publicly available rarely address these issues. Maturation in caregiving is about the mental health of the caregiver. The caregiver needs to understand that there will be grief, anticipatory grief, while caretaking. In the initial stages, the Alzheimer’s person can also experience anticipatory grief, but it fades as their cognitive abilities diminish. This is natural and can affect both the caregiver and the care receiver, appearing as anxiety, dread, guilt, helplessness, and feeling overwhelmed. When the care receiver is the caregiver’s spouse, long term care can easily lead to clinical depression for the caregiver. Mindful participation in the maturation process can lead to a fuller and healthier life when the caregiving is complete.

The first caretaker maturation stage is as a preadolescent: curious observation without response. The second is as an adolescent: noticing a problem and seeking a diagnosis.

The third is as a young adult: engaging with an identified Alzheimer’s person, seeing a need to fix/correct abnormal actions. The relationship can become adversarial. The fourth stage is as a maturing adult: fully understands the Alzheimer’s person is in his world with actions not seen as directed at the caregiver, and chooses to step into the person’s world. The fifth stage is as a mature adult: acknowledges he does not have the disease, owns his life, releases his attachments to results different from the disease’s reality, and is open to the joy of life and brings that to the Alzheimer’s person as best he can. What follows are descriptions I developed of the maturation stages I have observed in other caregivers, gleaned from professionals in the field, and have personally experienced.

My journey with Pat

It was in 2012, and my wife, Pat, and I had been married for 51 years. She was in the late middle stage of Alzheimer’s. One night in October, Pat sat straight up at 2 AM, totally disoriented, and not knowing who I was. “Who are you?” In that waking, she lost over 51 years of memory. She lost the memory of us being married and that she had children and grandchildren. It took two hours of calming and redefining who I was before she would go back to sleep. I was now “Larry, the guy who takes care of her.” Her new time reference was that she was twenty-one and believed her parents were still alive and lived just down the street.

She loved me dearly and was dependent on me to take care of her (her words). This focus on one person is typical of Alzheimer’s disease. Usually, when a major memory loss occurs, most of it can come back. Not so for Pat. Pat’s exhibited Alzheimer’s symptoms started six years earlier, in 2006. She had had recurring traumas, each time causing her to drop over another cognitive cliff to a state of lesser capability. Luckily, she had a cheerful disposition, but she couldn’t recall what we had talked about two minutes before. She no longer drove. She did not remember how to run the microwave or the laundry washer and dryer. She could be quite delusional and highly anxious, even with her antipsychotic medications. While the Pat I married appeared to psychologically die in 2012, I committed to taking care of the person she had become until she died. It is as if I were caring for a shadow of Pat. I was presented with the Pat I remembered and the one she had become. A huge loss for my family was that we would not be able to share birthdays, anniversaries, and other special occasions.

There are self help books for the caregiver; they typically describe what to expect, and sometimes give responses to various situations. They provide interesting information, but each caregiver must work out the details for themselves. The self help books do not directly address the caregiver’s mental health. All will say to “take care of yourself,” and suggest exercise, respite care, support groups, and maintaining social contacts. This is good advice, but these actions do not alleviate the stress of the new life thrust upon the caregiver and the ongoing attitudinal adjustments required for mental and physical survival. Alzheimer’s caregiving is an unwanted role. However, each caregiver will eventually choose to run from it, fight it, or embrace it.

Whether they like it or not, each caregiver matures into the caregiving role unfortunately, not all caregivers grow up.

The caregiver, usually a spouse or an adult child, goes through as many changes as the person who has Alzheimer’s. The constant changes are triggers for the caregiver to mature into mentally healthy caregiving through the choices they make. There are various responses; some are toxic, and others can lead to a healthy relationship. It is important to remember that in caregiving, as in the presentation of Alzheimer’s, there is an ebb and flow. A person can flip flop between healthy and toxic. Maturation brings more healthy choices.

First Stage: Preadolescent. Alzheimer’s starts long before any symptoms appear. Current research indicates brain deterioration can start twenty years before anyone notices. However, the care receiver notices symptoms first but usually covers them up. When the symptoms finally do appear to others, before formal caregiving, they observe them out of curiosity, as a child might. You notice lapses of memory in your loved one they are not significant and are infrequent. This stage can go on for an extended time. Memory lapses will become more frequent and more significant. For me, this went on for over five years. As Alzheimer’s progresses, the denial that the care receiver has Alzheimer’s is a major caregiver characteristic.

Second Stage: Adolescent. As memory lapses become more frequent, recognition dawns that there is a problem. Over three years, Pat had two neuropsychological evaluations indicating cognitive impairment. The second one also said “dementia.” My request for diagnosis notwithstanding, denial and naiveté were my hallmarks at this stage. I knew that I could manage (control) what was going on with Pat’s life, so I just filed the reports away. During this time, her doctor prescribed “memory” medications to slow down memory loss they had little discernible effect. Typically, their effect plateaus and then fades away.

There can be heroic efforts to do everything possible to negate cognitive impairment and memory loss (fight it response). A sense of impotency and guilt drives one to try to correct the person in their “misunderstandings.” The caregiver sees the other person doing strange things and feels the need to correct and set the actions straight. These corrective actions, e.g., “You must stop playing with knives!” are useless as they do not make sense to the Alzheimer’s person and may cause the creation of new, fictitious memories leading to pushback and fighting.

Here is an example from my experience. Pat wanted to visit our son and family in Fort Worth, Texas, and felt that she could do it. I thought my wife could travel alone. Even though there had been episodes of her being quite confused, I thought that she could manage the trip, with written step by step instructions prepared by me what could go wrong? I was in denial about how serious her mental state was. She was to fly to Ft. Worth, rent a car, and stay at a motel. I had listed each step on a cheat sheet. When she arrived, she forgot to use the cheat sheet and could not process my provided GPS verbal instructions quickly enough to make sense of them. Our daughter in law had to drive well into the country to rescue her (thank God for cell phones!).

Logic and rationality are not part of the Alzheimer’s world.

Pat’s trip was a huge awakening for me. I thought that if she had everything laid out, step by step, she would have no problem. I had not learned that her world was not rational or logical. I was thinking in my context and had not yet learned to step into her world. My engineering background was still talking. From her travel experience, I realized that I needed to gain a deeper understanding of the situation. I needed outside help, which was more than casual conversations with friends. Things were closing in, and I needed to get my head around what was going on. I was angry and resentful, feeling forced into a caretaker role, a condition I did not understand. Do I step into this new world? Am I capable of handling caretaking? Do I hand over that responsibility to someone else, or do I abandon the marriage? It was all very confusing with no immediate answers it was soul searching time. I was moving into stage three.

Third Stage: Young Adult. So, what to do? Frequently, the concerned caregiver rushes to a specialist, such as a neurologist, hoping for a diagnosis of a curable condition. Specialists are not in the business of long term care. The primary care doctor, at best, practices in geriatric care. If that doctor does not practice geriatric care, I suggest that you consider a new doctor. Why? The primary care doctor will be guiding and managing your loved one’s general treatment and medications until they die. Even under hospice care, the primary care doctor can still be in the loop. The primary care doctor needs to know the geriatric territory. I requested a diagnosis. Pat’s two neuropsychological evaluations and the 2012 overnight memory loss led to another brain scan. That scan showed parietal and frontal lobe mass loss, confirming the Alzheimer’s diagnosis. I had transitioned into walking the path with Pat, a person diagnosed with Alzheimer’s.

Caretaking is your primary job.

Caretaking sounds like taking on a second job. It is. The problem is that it is not a second job; it becomes your primary job. The caregiver begins to recognize that caregiving restricts connection with the world around him or her. He finds that his time to connect with the people, relationships, and activities that helped define his or her world is shrinking. The care giver realizes that he is responsible for this other person’s life.

Fourth Stage: Maturing Adult. The Alzheimer’s person will regress to being like a three to five year old. You are now a single parent of this “young child.” Did I say “child”? Yes, this person used to be your spouse, but their capabilities and identity have almost ceased to exist. They are now only fleeting glimmers of that person. Hopefully, during this stage, the caregiver’s maturation will increase to hit the major split in the road.

Making the choice for full maturity.

Fork One: The caregiver can continue to take care of the Alzheimer’s person. When the caregiver focuses on doing everything himself, there is the risk of becoming a martyr, and this can easily lead to burnout and collapse. The caregiver’s life becomes the life of the person with Alzheimer’s. This is a toxic, destructive path where the stress of caregiving can kill the caregiver before the Alzheimer’s person dies. This path can lead to a cocooned life where the caregiver is as isolated as the Alzheimer’s person. Even with people and groups around to help, it does not mean the caregiver will use the resources available. Usual excuses include: “There’s just too much to do!” There is a sense that, “I know this situation, she is my spouse, and I can take care of her better than anyone. Why do I need to call for help for myself? I am getting the job done! I can do it myself!” This will become impossible for most caregivers when the person needs continual help with “activities of daily living” such as dressing, toileting, eating, and bathing. This also includes safety issues, such as making sure the person does not wander off in the night or get up in the middle of the night and start cooking or starting a fire in the fireplace. This safety watch is a 24/7 requirement. However, the caregiver must sleep sometime.

The caregiver’s life/survival is now more important than the Alzheimer’s person’s life.

Fork Two: On this path, the caregiver realizes that their life is more important than the Alzheimer’s person’s. Be careful with this statement. Besides supporting the person with Alzheimer’s, the caregiver’s primary responsibility is selfcare. Choosing to own his or her life is the focus. Reality check: the caregiver will live, and the Alzheimer’s person will die. This can sound cold, but it is the reality of the situation. This does not mean that the Alzheimer’s person’s life has less value than the caregivers. And it does not mean that the care giver can run roughshod over the life and property of the person with Alzheimer’s. It means that the caregiver is now the most important person for the care receiver’s care. The person with Alzheimer’s is no longer a player in their support. He or she is slowly dying, and there is nothing the caregiver can do about it. The caregiver is responsible for safety, comfort, and general health, i.e., compassionate support, and that is it. Heroic efforts only lead to frustration and wasted effort. They are only there to assuage the caregiver’s sense of guilt about not doing enough. The caregiver must have resolved any legal and financial issues related to the estate earlier, while the person with Alzheimer’s is capable of signing their own name and is aware of what is happening. Items such as durable power of attorney, medical power of attorney, and title transfers may require professional legal help.

The situation is “the way it is,” and the caregiver must own his life.

Stage Five: Mature Adult. The caregiver must not lose his own life, or he will psychologically die along with the Alzheimer’s person. The situation is the way it is, and the caregiver must own his life. That means their life is not the Alzheimer’s person’s life. That means connecting in close relationships with people and engaging in old or new activities. These actions must be about the caregiver’s life rather than a diversion from caregiving. The caregiver must have “me” (away) time from the Alzheimer’s person by using day or respite care, either in home or in a facility. Sometimes, to maintain their sense of identity and aliveness, the caregiver chooses the close companionship and intimacy of another person. This can lead to discovering a new partner in life. This is not about abandoning the Alzheimer’s person it is about maintaining the fullness of the caretaker’s life, his mental health, and his identity. This fullness can lead to more compassionate caregiving.

Not losing your life is a mature, mentally healthy path. Engaging in this path can be arduous, especially with a spouse as the care receiver. After the Alzheimer’s person has passed away, the caregiver has the possibility to emerge with a sense of self, expressed as freedom knowing that he or she did all that could. This is true of any death situation. Every change in capability for the person who has Alzheimer’s is a loss with grief. Often, by the time the person with Alzheimer’s passes away, most (not all) of the grieving is complete, like caring for a person with any major long term disease. This is anticipatory grief, but grieving is not over; it is only reduced. It is not unusual for the caregiver to move quickly on to a new partner. When this happens, the adult children are confused or sometimes even incensed  they do not understand why the memory of mom or dad is gone so quickly. They have not walked the path for years, in the same way as the primary caregiver. What they do not understand is the caregiver’s long goodbye experience. The long goodbye is anticipatory grief others and the caregiver’s family do not have this because they did not experience the care giver’s losses.

Caregiving is about you, not the Alzheimer’s person.

The maturation process is accepting that your new role is just that, a role, not a burden thrust upon you to be angry about. The phrase, “it is what it is,” helps. Learning patience is essential the maturation process does not move forward without it. Patience is based on detaching your life from the person’s disease and your expectations of how it should be. As you mature, you learn that caregiving is an opportunity to contribute to another person in a way you would have never considered. If you are religious, it is a ministry. Caregiving boundaries are set by what you are willing and able to give. It maintains your dignity and removes any stigma of not doing enough. Here is a key point: insulating yourself from Alzheimer’s disease teaches you that the person’s disease is not about you; caregiving is about you. It is maintaining the quality of your life so that you can share that with your Alzheimer’s person and the people around you. This is the gateway to freedom; freedom to live and own your life, freedom from other people’s expectations for heroic efforts.

Mindfulness: Bringing nonjudgmental awareness and discernment to what is occurring before us and choosing a thoughtful response.

There are ways to alleviate the stress of caregiving. My main tool was practicing Mindfulness, as it helped me avoid the normal, unthinking, rapid negative response when something popped up with my wife. The process is to stop, take a breath or two, nonjudgmentally observe what is happening or said, and then skillfully respond. This approach has helped me to step into Pat’s world with compassionate responses. By avoiding stress vs. suppressing it, the caregiver can survive the years of caregiving and emerge as a stronger person alive and contributing to the world around them. This is the mature caregiver. Maturing here means accepting that the person with Alzheimer’s is in their own world a world where they try to make sense of their disjointed perspective in the physical world around them. In maturing, you choose to separate your world (life) from the Alzheimer’s person, or you make your life the Alzheimer’s person’s life. This is the major maturation pivot point.

To let go is to be mature as a caregiver.

I finally let go of my attachment to “doing everything possible” for Pat. I am OK with the result because I did the best I could. I did not feel any guilt for “not doing enough.” I let her live her life as normally as possible. I let the grandkids come; the chaos of four kids from four to fourteen was great, fun, and traumatic. I provided compassionate care to soften the edges, but there was no need to protect Pat from life. Pat’s Alzheimer’s was the way it was, not her fault, and not something she chose to do. Even with the unexpected daily stresses, there was nothing to be angry about. Anger is based on unmet expectations and attachments to certain outcomes, regardless of how it actually is. I smile now and feel that I contributed much to Pat when I brought that smile rather than anger, stress, and depression to our relationship. Each caregiving situation has its unique qualities, and the outline here is my experience of maturation. Each person will have their way of experiencing the maturation process, but will still have the same choices. How you choose is up to you.

¹ Source: Alzheimer’s Association
² Most Alzheimer’s patients last 3 4 years although, rarely, some have lived 20 years.
³ Source: www.memorycare.org 
⁴ Source: www.caring.com 
⁵ 2022 Alzheimer’s Disease Facts and Figures Report
⁶ I recommend The 36 Hour Day, as a general reference
⁷ According a 2018 Stanford study, 40% of caregivers die due to burnout before the Alzheimer’s person.
⁸ Understanding How Your Relationship May Change, Alzheimer’s Society of Canada

To request a free copy of this essay, click here.

Larry Patzer January 2014

Colorado Springs, Colorado

Copyright 2014, Coffee Cup Publishing

Larry is a Spiritual Director and was an on call chaplain for over five years, working primarily with families of individuals in end of life situations.

Click here to contact Larry with questions and comments.