Almost everyone has heard of Alzheimer’s disease and stories about the difficulty in providing care for those with Alzheimer’s.  There are numerous types of dementia, but Alzheimer’s makes up 60 to 80% of all dementia cases.  My comments will deal only with Alzheimer’s.  Let’s 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’s the bottom line: Alzheimer’s is a degenerative, non-curable disease of the brain that slowly kills off parts of the brain.  The end result is possible early death and/or institutionalization—that’s 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.  Cognitive skills are lost over time.  Mobility and incontinence often become issues.  Ability to do one’s own personal care dissolves and others, usually family, are left to do all personal care.  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, the Alzheimer’s person will have to be moved to a memory unit in a care facility.  In Colorado Springs, that’s currently around $5,500 per month for an assisted living facility and $7,000 per month and up for a skilled nursing facility.  It can run higher as care needs increase.  Two statistics of note: in the US, 10% of people age 65 will have Alzheimer’s before they die.  For those at age 75, the number is 25% and for people 85 and older, the number is 50%.

Alzheimer’s care giving is a scary and expensive business!

This discussion is intended for existing caregivers and presents a description of the caregiver’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 need to be done.  They provide a wealth of information and support.  Maturation is my focus because the mental health issues associated with long term caregiving are rarely addressed outside the academic circles of psychology.  Maturation in caregiving is about the mental health of the caregiver.  Mindful participation in the maturation process can lead to a more full and healthy life when the caregiving is complete.  The caregiver needs to understand that there will be anticipatory grief.  In the early stages this grieving can be with the Alzheimer’s person and will definitely be ongoing with the caregiver.  This is natural and often appears 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.

The first maturation phase is as a pre-adolescent: curious observation without response.  The second is as an adolescent: noticing a problem and seeking diagnosis.  The third is as a young adult: engaging an identified Alzheimer’s person—sees need to fix/correct—relationship can be adversarial.  The fourth stage is as a maturing adult: fully understands Alzheimer’s person is in his own world—person’s actions not seen as directed at caregiver—chooses to step into the person’s world.  The fifth stage is as a mature adult: acknowledges his life is not the disease—owns his life—lets go of attachments to results different from the disease’s reality—is open to the joy of life and brings that to the Alzheimer’s person.  What follows is a description of the maturation process I have observed in other caregivers, gleaned from professionals in the field, and have personally experienced.

My journey with Pat

Here’s a bit of my context.  My wife, Pat, and I have been married for 52 plus years.  She is in late middle stage of Alzheimer’s.  She does not know who I am other than my name is Larry, she loves me dearly, and is totally dependent on me to take care of her (her words).  This focusing on one person is typical of Alzheimer’s disease.  In October of 2012, Pat woke one night at 2 AM, was totally disoriented and didn’t know who I was.  In that waking she seemed to have lost over 52 years of memory.  She lost the memory of us being married and her time reference reverted to when she was living at home with her parents.  She did not know that she had any children or grandchildren.

Pat has been exhibiting Alzheimer’s symptoms since 2006.  She’s had a number of mental traumas; each causing her to drop over a cliff edge to a state of lesser capability.  While her social skills are currently exceptionally good, she can’t tell you what we talked about two minutes ago.  She no longer drives.  She doesn’t remember how to run the microwave or the laundry washer and dryer.  She can be quite delusional and highly anxious although her antipsychotic medications usually suppress these issues.  While the Pat I married appears to have psychologically died in 2012, I am committed to taking care of the person she’s become until she dies.  It’s as if I’m caring for Pat’s twin sister.  Our relationship is that of loving caretaker and care receiver.  A huge loss—not just for me, but for any family—is that my wife and I will no longer be able to share birthdays or anniversaries.

There are many self-help books for the caregiver—they typically describe what to expect, and sometimes, give possible responses to various situations.  This is needed information, but you still have to work out the details for yourself.  The self-help books don’t 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 don’t 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, you must decide to run from it, fight it, or embrace it.

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

The caregiver, usually a spouse or an adult child, goes through as many changes as the Alzheimer’s person.  The constant changes are the triggers for the caregiver to mature into mentally healthy caregiving through the choices (s)he makes.  There are many responses; some can be toxic and others can lead toward a healthy relationship.  It’s 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-Pre-adolescent.  Alzheimer’s starts long before any symptoms appear.  Current research is indicating about twenty years before anyone notices—the care receiver notices first but covers them up.  When the symptoms finally do appear to others, before formal caregiving, they are observed out of curiosity as a child might.  You notice some lapses of memory of your loved one—they’re not significant and are infrequent.  This stage can go on for quite some time.  The memory lapses will become more frequent and more significant.  For me, this went on for over five years.  As this stage progresses, denial is a major characteristic.

Second Stage-Adolescent.  As the memory lapses become more frequent, recognition dawns that there actually is a problem.  Over a three year period 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 in this stage.  I knew that I could manage (control) what was going on with Pat’s life and so the reports were just filed away.  During this time her doctor prescribed “memory” medications—they had little discernable effect.

There can be heroic efforts to do everything possible to negate the cognitive impairment and memory loss.  A sense of impotency and guilt drive trying to correct the person in their “misunderstandings”.  The caregiver tends to see the other person doing these strange things to them and they need to be corrected and set straight.  These corrective actions are useless as they don’t make sense to the Alzheimer’s person and may cause creation of new—fictitious—memories leading to push back and fighting.

Here’s an example from my experience.  Pat wanted to visit our son and family and felt that she could do it.  I thought my wife would be able to travel alone.  Even though there had been numerous episodes of her being quite confused, I thought that she could handle the trip—with written help prepared by me.  I was in denial that she was as seriously affected as she 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.  She forgot to use the cheat sheet and couldn’t process the GPS’s 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 hadn’t learned that her world was not rational or logical.  I was thinking in my context and hadn’t learned yet to step into her world.  My engineering background was still talking.  From the travel experience I realized that I needed to get a much better understanding of the situation—I needed outside help that 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 that I was being forced into a caretaker role and a condition I didn’t really 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?  Many times the concerned caregiver rushes to a specialist hoping for a diagnosis of something curable.  Specialists are not in the business of long-term care.  The primary care doctor must become involved up front.  If that doctor is not practiced in geriatric care, I suggest that you get a new doctor.  Why?  The primary care doctor will be guiding and managing your loved one’s 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 territory.  By putting the medical management in place, the caregiver is transitioning from the “do something/fix it” role into an acceptance of doing ongoing caregiving of an Alzheimer’s person.  I requested a diagnosis and Pat’s two neuropsychological evaluations and the 2012 overnight memory loss led to an MRA scan.  That scan showed parietal and frontal lobe mass loss confirming the Alzheimer’s diagnosis.  I had transitioned into walking the path with Pat, an identified Alzheimer’s person.

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.  (S)he finds that his time to connect with the people, relationships, and activities that helped define his or her world is shrinking.  The caregiver realizes that (s)he is totally responsible for this other person’s life, something that was shared before.  The caregiver realizes that this is going to be a long-term effort.

Fourth Stage-Maturing Adult.  The Alzheimer’s person will regresses in many ways to being like a three to five year old.  You now are a single parent of this “young child”.  Did I say “child”?  Yes—this person used to be your spouse, but her capabilities and personality have almost ceased to exist.  They are now only fleeting glimmers of that person.  Hopefully, during this stage, the caregiver’s maturation will 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 can easily lead to burnout and collapse.  The caregiver’s life becomes the life of the Alzheimer’s person.  This is a toxic, destructive path where the stress of caregiving can literally kill the caregiver before the Alzheimer’s person.  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 doesn’t mean the caregiver will use the resources available.  Usual excuses include: “There’s just too much to do!”  There’s a sense that, “I know this situation, she’s my spouse, and I can take care of her better than anyone.  Why do I need to call in help for me?  I’m 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.

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

Fork Two: On the split’s other path, the caregiver realizes that his or her life is more important than the Alzheimer’s person’s.  Be careful with this statement.  Besides supporting the Alzheimer’s person, the caregiver’s primary responsibility is self-care.  Choosing to own his or her life is the main focus.  This does not mean that the Alzheimer’s person’s life has less value than the caregiver’s.  And, it does not mean that the caregiver can run rough shod over the life and property of the Alzheimer’s person.  It means that the caregiver is now the most important person for the care receiver’s care.  The Alzheimer’s person is no longer a player in his or her own support.  The Alzheimer’s person is slowly dying and there is nothing the caregiver can do about it.  The caregiver is responsible for the safety, comfort, and general health, i.e., compassionate support and that’s it—heroic efforts only lead to frustration and wasted effort.  This can sound cold, but it’s the reality of the situation.  The caregiver must have the legal and financial issues resolved for the Alzheimer’s person’s estate.  This requires professional legal help and is beyond the scope of this essay.

The situation is “the way it is” and the caregiver has to own his life.

Stage Five-Mature Adult.  The caregiver has an obligation to 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 has to own his life.  That means his or her life is not the Alzheimer’s person’s life.  That means connecting in close relationships with people, and engaging with old or new activities.  These actions have to be about the caregiver’s life rather than a diversion from caregiving.  The caregiver has to have “me” time and the price is paying for day (respite) care—in-home or in a facility.  Sometimes, to maintain his or her sense of identity and alive-ness, 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 a more compassionate caregiving.

Not losing your life is the mature, mentally healthy path.  Engaging 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, expressing itself as freedom knowing that he or she has done all that could be done.  This is true of any death situation.  Every change in capability for the Alzheimer’s person is a loss with a grief.  Often by the time the Alzheimer’s person passes away, most (not all) of the grieving has been completed—similar to caring for a person with any major long-term disease.  Because the majority of the grieving can be over, the caregiver often moves quickly on to a new partner.  Very often the adult children are confused or sometimes even incensed—they don’t understand why the memory of mom or dad is being let go so quickly.  They haven’t walked the path the same way as the primary caregiver.  What they really don’t understand is the caregiver’s long goodbye experience.  The long goodbye is anticipatory grief—others and the caregiver’s children don’t have this because they didn’t experience the caregiver’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 a lot as well as, “does it really matter?”  Learning patience is essential—the maturation process doesn’t 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 can be considered a ministry.  Your caregiving is limited 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 the 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 about you.  This is the gateway to freedom; freedom to live and own your life, freedom from other peoples’ expectations for heroic efforts.

Mindfulness: The ability to bring non-judgmental awareness to all that is occurring within and around us, moment by moment.

There are numerous ways to alleviate the stress of caregiving.  My main tool is practicing Mindfulness as it helps me avoid the normal knee-jerk, negative response when something pops up with my wife.  The process is to stop, take a breath or two, non-judgmentally observe what’s happening or being said, and then skillfully respond.  This approach has helped me to step into Pat’s world with compassionate responses.  By avoiding the stress vs. suppressing it, the caregiver can survive the years of caregiving and emerge a stronger person—alive and contributing to the world around him.  This is the mature caregiver.  Maturing here means accepting that the Alzheimer’s person 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’ve let go of my attachment to “doing everything possible” for Pat.  I’m OK with the way it is because I do the best I can.  I don’t feel any guilt for “not doing enough.”  I’m letting her live her life as normally as possible.  Let the grandkids come—the chaos of four kids from four to fourteen will be great and fun and traumatic.  I provide compassionate care to soften the edges, but she does not need to be protected from life.  Pat’s Alzheimer’s is the way it is—it’s not her fault and it’s not something she’s chosen to do.  Even with the unexpected daily stresses, there’s nothing to be angry about.  Anger is based on unmet expectations—attachments to certain outcomes without regard to the way it really is.  I smile a lot now and feel that I contribute much to Pat when I bring that smile rather than anger, stress, and depression to our relationship.  Each care-giving situation has its unique qualities and the outline here is maturation as I’ve experienced it.  Each person will have his own way to experience the maturation process, but will still have the same choices.  How you choose is up to you.

Larry Patzer
January, 2014

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