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Alzheimer’s and dementia stack the deck against us, as they rob us of the people we knew growing up; the people we have known throughout most of our adult lives, as our parents slowly become someone we learn to know anew -- often on a daily basis. Alzheimer’s and dementia are massive storm fronts that slowly dismantle the infrastructure of the brain, and with each storm surge more and more pathways to cognition, emotion, speech, executive functioning that allows us to access information and problem-solve, the ability to read and understand social cues and the like become distorted, eventually resembling bombed out bridges with no way to get information from one area of the brain to another.
Alzheimer’s and dementia take from us, and there is no way to prevent the onslaught of decline, which can last years.
It can be heart-wrenching beyond belief to watch Mom no longer understand the dynamics of shoelaces, or the importance of brushing her teeth; or Dad, as he struggles with comprehending conversations, or losing the ability to read while he holds the newspaper upside down.
In the beginning is when I believe life must be the most difficult for the person diagnosed with dementia. At that stage, they are still aware of who they are, their life story, and have some idea of the journey before them. The denial fear, anxiety, anger, depression, and any other emotions that become daily occurrences while Mom or Dad struggle with the simple activities of daily living begin to take their toll as cognitive functioning begins sliding on a slippery slope to oblivion; and there is no way to stop their chaotic slip-and-slide -- it is inevitable.
Oftentimes, family steps in and monitors Mom and Dad, usually at home. Sometimes, home health aides are hired to assist our parents at home, or we somehow manage to take care of them ourselves, as children sometimes do. Sometimes our parents move back home with us, too.
Caregivers deserve a special place in heaven when they take on this role for their parents, or spouse. I cannot fathom where any of them summon the energy to manage the 24/7 requirements of this population; yet thousands of them take on this task without a second thought, and often with inadequate support.
In some cases, the remainder of the family seems to have headed into witness protection and are nowhere to be found. I am not condemning family members for their choices, merely pointing out a situation that is not uncommon.
Sometimes, other family members are too overwhelmed by the diagnosis, or are estranged from their loved one to participate in their care. The caregiver is then left alone in the decision-making, not only in managing the day-to-day-needs of their loved one, but in deciphering what their long-term requirements will be, because at some point, despite all the love you squeeze into Mom or Dad, the decline usually requires something more than one person can manage.
Mom forgets she’s got something cooking on the stove, and nearly burns the house down; Dad becomes more confused and forgets where he’s driving and ends up in another town. Your husband climbs up on the roof to clean the gutters and forgets where the ladder is. Mom and Dad fall for a scam and lose most of their life savings. Grandma just spent $1,200 on dolls at the store.
The scenarios are as endless as humanity and the outcomes can result in trips to the ER, hospital stays, or worse.
This is a tremendous responsibility placed on caregiving shoulders that eventually stoop and bow under the pressure; again, on one hand I cannot fathom where someone summons the emotional resources to take on something as devastating as the needs of a loved one with Alzheimer’s or dementia; yet on the other, I grasp that it is done out of love and compassion.
I’m just not so sure that if it were me if I would have the emotional and physical energy necessary for the job. That does not make me inhuman, or uncaring, but merely honest in my assessment of self, and this is an assessment we all need to take if we are planning on taking care of a loved one with dementia. Don’t get me wrong, if I was needed, I would step in and provide caregiving for a loved one without hesitation; I’m just not so sure if I have the superhuman powers to maintain that role indefinitely.
Do you have the tolerance to manage difficult behaviors? Can you cope with the incessant demands of an adult that is cognitively a toddler? Can you manage changing, bathing, sleep and behavioral disturbances with a calm demeanor? Can you handle the 24/7 demands, often without assistance from others? Who do you have for support, that you can turn to if you need a break?
This undertaking is difficult at best, and without any sort of support system, it will take a toll on you like nothing ever has before.
Behavioral disturbances run the gamut with dementia.
Mom or Dad may become fearful as everything in their world becomes new. They become combative while showering, maybe due to sensory disturbances, or fear of water. Stripping off their clothes is another behavior, whether brought on by sensory and tactile overload, feeling constrained, or they are simply overheated.
Colorful, abusive, vulgar language is not uncommon. I’ve heard, “She never swore when we were growing up.” And “Dad, has always been a Christian, and never hit anyone, or said anything bad about anyone.”
Please don’t apologize for the behaviors of your loved one. Those behaviors are not a reflection of you!
However, they are a reflection of the diagnosis, and Mom stripping down to her underwear in the living room or Dad swearing worse than a sailor at no one in particular are showing us that their brains are failing.
It is ridiculously hard to not take these moments personally, so please hear me when I say this: Mom, Dad, or your spouse’s behavior are not necessarily indicative of who they were in the past, nor a reflection of them or you in the present.
They are dementia’s ugly stepchild coming out for a visit, and we must mitigate them to the extent we can, but be prepared that these behaviors could remain around for the foreseeable future.
While there are negatives to a diagnosis of Alzheimer’s and dementia, there are a multitude of positives.
Each stage of progression brings its own losses, yet there are rewards as well. We have the opportunity to repair broken relationships as the person we had issues with has changed. We await those crystal-clear moments when Mom, who had forgotten who we are, says, “I love you,” or Dad inexplicably climbs out of his recliner and walks for the first time in months.
We hold out for and embrace hope, because it is all we can do. Those bright, shining moments when clarity returns, and we catch glimpses of the person that used to be in the mirror that is now dementia. We revel in their story-telling and hang on to every word because we do not know if our loved one will speak coherently again. We polish Mom’s nails, or talk about the family with Dad.
I love the sparkly, child-like innocence that is so apparent with this population and how simple things bring out smiles wider than the moon, eyes glittering with joy over someone singing, and the “real” thank-yous of appreciation.
In some ways, there is a genuineness to this diagnosis, as our loved one is very real in the moment, albeit a combative bear in the next.
How someone lives with a brain in such a constant state of chaotic flux is something only those with this diagnosis know; and they cannot share that with us because they have lost the cognitive and verbal acuity to do so. Instead, we monitor them, watch their behaviors and look for clues.
I always say that negative behavior is a result of not being heard, and we often learn the answers from those least equipped to tell us.
As for the stress placed on caregivers, it is absolute and unequivocally present all … the … time.
They hold their tears back, then let them gush in private, because they believe they must remain strong “for them,” their loved one. They rail at God, question their own spirituality, demand answers. They give up everything for themselves to remain something for someone else.
They become exhausted to the point of oblivion, yet they endure, and they almost always respond with, “I’m fine,” when we ask how they are doing.
Caregivers endure because they have hearts of spun gold up to the task of loving someone utterly and completely to the end, because they take their commitment to others seriously. But most of all caregivers endure because of those beacons of hope, for the shining brightness of humanity that peeks through a beatific smile, a gnarled hand reaching out, or that flicker of recognition.
Caregivers remain because they recognize that humanity exists until the end, and that all human beings deserve to retain their dignity, to experience love and compassion, and be at peace in their final days.
I challenge everyone reading this article to either give a caregiver a break, or spend time at a local facility during this Christmas season.
The last thing a brain with dementia retains is music, and as this is the season of giving and music, come and belt out Christmas tunes for others! Honestly, they will not care if the dog burps better than you sing; but they will be everlastingly grateful that you cared enough to visit.
Lana Galbraith has an extensive background in crisis intervention, case management, working with at-risk teens and their families, and program development, as well as eight-plus years working in skilled nursing and assisted living facilities with a resident population that includes Alzheimer’s, dementia and traumatic brain injuries. Lana is currently taking a much-needed break from her doctorate in forensic psychology, while pursuing options to complete her dual licensure in mental health and substance use disorders.