Moving From Home to Home: When Is the Right Time?
For me, becoming my father’s caregiver was a natural progression of sorts. My parents moved in with my family and me shortly after my mother’s cancer diagnosis. Almost concurrently, my father received a dementia diagnosis. It was practically seamless some might say. Perhaps only those who have never had their world upended would say that; everyone else in the world would agree that hindsight allows one to see and feel the seams, the unraveling, and the fear.
Ultimately though, after the initial shock wears off, taking a step back and beginning to live with Alzheimer’s becomes manageable - never easier - but survivable. At least, it did, and it has for me so far. As his caregiver, I’ve learned to approach my father’s care in stages much like the illness itself. In the interest of not miring anyone down in the day-to-day intricacies and idiosyncrasies of the disease because the only thing completely guaranteed about this illness is that it is never the same for any two, twenty, or two thousand people afflicted with it, I’ll reduce the number of caregiving stages to three.
Stage one: Where’s the manual?
After the initial dementia diagnosis, very little changed right away. Dad was Dad. My job as his caregiver was first and foremost to ensure that he remained active and as independent as possible. Since my father had already retired, a set-in-stone schedule was not a consideration. However, I knew that for the sake of sanity, we needed to find a rhythm. What I quickly learned is that schedules and routines are paramount to maintaining household and mental stability, both for the person with Alzheimer's and the caregiver (not to mention the rest of the family).
Moving across country
In our case, my parents had made the decision to move across the country to live with me and my family to meet their healthcare needs more fully and to begin the process of acclimating Dad to living with someone other than his wife of nearly fifty years. (Given my mom’s status of terminal lung cancer, she considered where and with whom she could receive the best care while addressing and procuring great medical and emotional care for Dad.)
It was an easy decision for me because I had always enjoyed my parents’ company; we were extremely close. I was a daughter who was fortunate enough to have parents who became people I liked to hang out with. So, the first step or stage of acceptance seemed very natural to me. Mom and Dad cared for me, and now I would do whatever needed to be done for them and whatever they wanted to make my father’s transition to both living without his lifelong partner and living with his illness as seamless as possible. Dad required it, and my mother needed to know that someone “had” Dad while she fought her own battle.
My primary goal as his caregiver
Caregiving for someone with Alzheimer’s, in the beginning, is akin to being a covert babysitter. You know when your newly minted adolescent decides that he or she can stay home alone, but deep down you just can’t let that happen? You secretly arrange for the neighbor or a good friend to pop in, call, or invite your independent-feeling preteen for a fun outing. Well, the same scenario happens with the caregiver of someone with early-stage Alzheimer’s.
One of my primary tasks as Dad’s caregiver was to keep him engaged and safe while affording him the courtesy and dignity that a man of his intellect and years deserves. Reinforcing and encouraging those tasks that he could do independently became a primary focus of my daily caregiving during this time period. Basic hygiene, meal preparation, and household chores that did not require multiple steps were areas that allowed him a sense of autonomy and required minimal or easily masked oversight on my part.
My goal as his primary caregiver and his daughter was to accept his lapses in memory not to draw attention to them. Making sure that Dad maintained a healthy lifestyle including exercise, diet, and medication management - none of that required a manual. Much of being a caregiver in the early stages was intuitive, at least it was for me, and I imagine it is for many who tend to their loved ones or others with whom they share a deep emotional or familial connection.
That being said, one of the most critical jobs of the caregiver during the early stages is to become educated as much as possible about the disease. Knowing what to look for, particularly in terms of changes in mood, behaviors, and habits (dietary and sleep, specifically) and keeping track of those changes becomes a large part of the caregiver’s daily routine.
Stage two: No two days are the same
If you really think about it, no two days are the same for anyone, so why should it or would it be any different for someone with Alzheimer’s and his or her caregiver? Once it begins to sink in with each change in behavior or missed memory, the caregiver needs to adjust his or her expectations and mental timeline.
I read a great deal by this stage, and I had lived through watching Alzheimer’s in other loved ones. Nothing though can really prepare you for the changes during this stage other than living through them. And the funny thing is that although the cognitive decline happens rather steadily and somewhat sneakily, it is not until a major event occurs usually that the caregiver recognizes the progression of the illness. That was most assuredly the case for me with my father.
When he threw his cell phone across the room after missing a few calls due to failing to turn it on, I knew Dad was:
- becoming aware of his illness, and
- heading into the next phase.
He had always been a very even-tempered man with a pleasant disposition; it took a great deal to get him annoyed to the point of noticeable frustration. (After all, he had worked for a municipality and dealt with the public for decades. Anyone who has ever been in that situation knows that maintaining a “never-let’em-see-you sweat” demeanor works to his or her advantage.)
Knowing when to call in outside help
The trickiest part of this stage is knowing when to call in outside help. Dad became stubborn and often resistant to going places and doing things that he would have otherwise enjoyed.
During this stage, I as his caregiver became increasingly stressed as his sleep patterns became random despite trying to maintain a schedule. Obviously, staying awake to oversee his care - primarily his safety as he was a wanderer - grew problematic and tiresome. I could not stay awake 24/7 and function.
Sundowning (increased confusion as the day nears an end) coupled with changes in his ability to understand and retain hygiene practices even with written and verbal cues weighed heavily on me. Unlike in the early stages when Dad could follow written step-by-step directions, he would miss or completely and unintentionally disregard any prompts. The disease really rears its ugly head as it becomes apparent that the person with Alzheimer's impulsivity and frustration are uncontrollable.
In my father’s case, he did things that might seem defiant had a child done them, but it was clear to me as his primary caregiver that Dad’s level of awareness was diminishing. He wasn’t purposely breaking fixtures or seeking to snack incessantly. He could not remember. For me, this was the most exhausting stage, physically and mentally. I relied on good friends and family members for any help they could give. Sitting in the house with him while he watched tv, taking him for ice cream while I went to my own appointments, or having him help with garden weeding or supervised dog-walking all offered temporary reprieves in the day for me and for him.
Transitioning to offsite caregiver
I managed his in-home care without any consistent outside hired help or nursing care for six years. I never envisioned that I wouldn’t care for him in my home. Dad belonged with me; he chose to be with me. I treasured that decision, and I wanted him to stay under my watchful eye as his daughter and his advocate surrounded by love. Unfortunately, that could not happen. When the night-waking became a daily occurrence and the safety issues became insurmountable, I through happenstance found a skilled nursing facility close by.
In fact, I only placed Dad originally for four days and nights of respite care after a long talk with my own healthcare provider and an invitation from an old friend to take my first solo vacation in over five years. Upon my return from my getaway, the residence staff queried as to how I had cared for my father so long at home by myself. Easy answer: he is my father. With conflicted senses of guilt and relief, I acquiesced and agreed to have him stay on a trial basis which ultimately transitioned him to his new home and me to my new role as offsite caregiver and full-time advocate and daughter.
Stage three: The longest day
Almost seven years of having my father at home with me and nothing could have prepared me for the abrupt changes that would ensue after he entered a skilled nursing facility. Some people with Alzheimer’s are placed much earlier, in assisted living first and then transition into full-time memory and nursing care, and that works for them and their families. I never contemplated that option.
Thankful to be his daughter again
In fact, I never considered that the day would come when his care would require more than my two hands, able body, and all the love a daughter could hold for her father. I never imagined that both he and I would need more - more skilled nursing care for him as his mental decline worsened and control over his bodily functions and mobility diminished.
Dad required more care as the disease progressed, and most certainly needed more eyes on him. And I needed more- more time to breathe, think straight, advocate, educate, and love. Although I’m still his health care surrogate, power-of-attorney, and primary caregiver, I’m thankful for the chance to be his daughter again.
The nurses administer his medications and check his vitals. His aides tend to hygiene, daily routines, and meals. There are activities on varied levels depending on cognitive ability. I am fortunate to be able to see him daily and do so eagerly.
Dad and I are making the best of it, and as difficult as it is on the Alzheimer’s patient as he enters a world of his own, the caregiver’s role remains huge. I’ve become his voice. No one understands my father, his quirks, his likes and dislikes, better than I. As his caregiver, I ensure that he continues to live a life where he is treated with dignity and respect and afforded comfort and joy. As his daughter, I make sure that Dad knows he is loved and respected unconditionally.
My primary job as caregiver
My primary job it turns out is not a job at all; it is a way of life. Yes, the third stage, which is now in its fifth year for me and my father, has been trying and incredibly sad, but it has also been the most meaningful, reflective, and memorable. The little things – a kiss on the cheek, holding his hand, stroking his forehead as he falls to sleep, or just sitting with him to remind him that he is the man I love and have always loved - make the longest day one of life’s greatest gifts.
In each stage of Alzheimer’s, the caregiver is tested, tried, and tired. In each stage of Alzheimer’s, the person with Alzheimer's is also tested, tried, and tired. You come at the illness from two different places, but you both always connect and move forward on the foundation of great love. Love makes wherever he is feel like home to both of us.
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