Dealing with Alzheimer’s and Dementia in the Family
Meredith Heath-Bratton has an M.A. in Teaching English as a Second Language and has completed all the coursework for a Ph.D. in American Literature
Meredith Heath, aunt to nephews A, B, and C, erstwhile graduate student, and coffee master extraordinaire, writes about her feelings of loss during a period of transition in the lives of her nephews. An avid aunt for nearly six years and surrogate aunt to countless (no, really) other nieces and nephews, Meredith spends much of her free time with “the babies.” When not playing with the little ones or serving a hot cup o’ Joe at the local coffee shop, Meredith can be found researching family history, reading texts from the literary canon she missed during ten years of college, and wrangling ideas about how to return to graduate school without paying for tuition.
I’ve been mulling over this topic for weeks, and I haven’t been able to conjure an appropriate introduction. Sometimes I tire of writing as though learning how to be a good aunt is a series of hurdles, yet I think many parents and other caregivers in children’s lives dedicate much time and attention to the difficulties they perceive in their own lives and the general community about them, all the while hoping to turn these same obstacles on their proverbial heads for the sake of their children, nieces, nephews, and godchildren.
And so I write with a heavy heart as my thoughts turn toward my own grandmothers. At 76 and nearly 84, both are rapidly losing their memory at the behest of dementia. While neither has yet to forget her own children or grandchildren’s names or faces, the changes we have encountered in their demeanor and mental agility have been nothing short of heartbreaking. Until I was met with the opportunity to interact with my grandmothers at this stage in their lives, I thought Alzheimer’s and dementia suggested merely losing one’s keys or forgetting a name. What my family and I have discovered is that the implications of these diseases are much more profound.
This altered behavior is confusing at best as we try to reconcile the women we’ve always known with the characters to whom we’ve been introduced as of late, so I recently requested some official information from our local Alzheimer’s Association chapter. Counselors and physicians can give you advice, but I wanted some clarity from an organization dedicated to assisting memory loss patients and their loved ones. If I hadn’t already witnessed some of these behaviors in person, my incredulity would have only been surpassed by my dread of things to come. As it was, I read and nodded in assent as the material confirmed what experience has taught.
How My Nieces and Nephews Are Affected
My nephews are still so young that they will probably never remember either of their great-grandmothers as they were: spirited and healthy, if elderly, adults. Even if they don’t remember these beloved ladies at all, one day we may have to explain why we made the decisions we did regarding their care, and the guidance I received from the Alzheimer’s Association will likely come in handy.
Younger children may readily accept that Grandmother forgets their names because she is sick and her illness affects her ability to remember. Older children and adult nieces and nephews will certainly benefit, however, from more detailed explanations of the ramifications of memory loss, especially if their loved one’s actions spill over and affect them personally. The Alzheimer’s Association identifies the following behavioral categories as typical indicators of Alzheimer’s and dementia:
-Aggression
-Anxiety/Agitation
-Confusion
-Repetition
-Suspicion
-Wandering/Getting Lost
-Trouble Sleeping
Categorically speaking, some of these symptoms can be interrelated, such as depression/anxiety and trouble sleeping. The pamphlets I read also reported that repetition may stem from the individual’s sense of boredom or confusion and suggested redirecting his or her attention to a new activity or posting helpful reminders in conspicuous locations in order to help the patient recall important information. The experts also remind caregivers not to take outward aggression personally, as when, for example, a typically mild-mannered person begins cursing or making untoward accusations. They also remind caretakers not to leave memory loss patients alone or unsupervised, as their decision-making skills are impaired and they may be tempted to wander away or utilize appliances in an unsafe manner. Lastly, but not in the least unimportant, caregivers are encouraged to strive for their own mental and physical health in addition to that of their loved one. An unwell caretaker will eventually become unable to assist their charge, thereby defeating the purpose of caring for someone else’s needs.
How Nieces and Nephews Can Help
Extended family members, including our nieces and nephews, can be of help in these endeavors by offering to give other members of the family breaks from the long-term responsibility of care. Primary caregivers will suffer the brunt of their aging loved ones’ memory loss and need time and space to re-energize. I can testify: both of my parents are caretakers for their respective mothers, and the stress has certainly taken its toll these last months. Visits, phone calls, and reassurance from our other family members have certainly been of help. Even a listening ear or a simple hug for the caregiver can provide the encouragement for him or her to carry on with daily tasks.
When our nieces or nephews question why their grandparents appear to have sudden personality changes, we have to remind them that this is the result of the disease. When these alterations become hurtful, as they often will, my advice is two-fold. For the benefit of the patient, we have to look beyond the behavior to identify the emotional provocation (i.e., Is my grandmother worried/upset/anxious? How can I alleviate her fears, however irrational they may be?).
For the sake of our own emotional well-being, we have to preserve the sanctity of our outward behavior despite the inner turmoil we will inevitably face as we wrestle with visibly losing the ones we love. We have to learn to blame the disease, not the person. It is often easy to confuse the two. From my personal experience, it would seem that dementia has exacerbated negative components of my grandmothers’ respective personalities, almost as though these characteristics have remained obscured their entire lives until dementia relieved them of their inhibitions. But this is certainly not true. While I feel upset with my grandmothers for the attitudes they cop with us, I know that, on any other given day without memory loss, neither of them would have behaved as they do, certainly not to the degree of difficulty they pose for us now, often on a day-to-day basis.
Moreover, I find that it behooves us to be candid about our emotions and experiences as we filter through our circumstances. As I spoke to the Alzheimer’s Association representative on the phone, he emphasized several times the confidentiality of my call. At the time, I shrugged my shoulders. I am not ashamed that my grandmothers have dementia; what fault of it is theirs – or mine?
But when I began to write this article, I was startled by my own reticence to relate the specifics of my family’s situation because, quite frankly, dementia automatically puts you on the witness stand. Your decisions regarding your loved ones’ care march under their inaccurate evaluation, and no matter your good intentions, you cannot reason with a memory loss patient when she is convinced otherwise. The specific symptoms of the individual will differ, though understanding the patterns of memory loss is helpful. Then, too, every family’s circumstances vary in terms of manpower, finances, and other resources, therefore a decision which may be best for one family may not suit for another. So while you, the thousands of other aunts and uncles reading from the grand scope of the World Wide Web, needn’t hear the particulars of my grandmothers’ dementia, sharing the details with a support group or counselor is of benefit if we are to reconcile our troubles with the patient to the anger we must certainly feel toward the disease itself.
Having done so myself, if my nephews one day ask me about Mama or Grandmother, I can share with them about their great-grandmothers without restraint, knowing that I have given due respect to the women my grandmothers have always been. I won’t be excusing any of their seemingly hurtful actions, but rather explaining how to love someone despite pain you may feel. And if, God forbid, dementia rears its ugly head in generations to come within our own family, the example we have shown will demonstrate to my boys how best to care for their own loved ones in the future.
Photo: Ambro
Published: July 9, 2013