Approaching The Final Destination. The attached article focuses on one caregiving journey that is coming to an end. Chris McClellan’s caregiving journey is coming to a close because his partner, TLO, is approaching his final destination. Recently, another blogger that I follow, who was the caregiver for her husband, Chuck, came to the end of her caregiving journey because Chuck approached, and reached, his final destination.
Each caregiver/blogger that I follow has said the same thing in almost the same words that echo how Chris describes the tenor of the day-to-day life of a caregiver: “I’ve come to realize that what I might think is a routine day, is totally off the charts by normal standards. I’m sure most family caregivers can get in touch with that.”
Whether a loved one needs care because of cancer, as in TLO’s case, or Alzheimer’s, as in Chuck’s case, the lives of both caregiver and patient are forever changed once a diagnosis is pronounced. The 10-15 minute medical consultation in an exam room or a doctor’s private office thrusts the recipients into the as-yet-unknown world of living with a terminal illness.
My brother’s wife, Nancy, was diagnosed with mixed dementia when she was barely 65-years old. In the first article on my brother’s caregiving blog, he also characterizes diagnosis day as the day his life, and that of his wife, changed forever.
Normal becomes a shifting paradigm that can look different from month to month or moment to moment as a loved one’s disease progresses towards its final destination. Both caregiver and patient can’t recall – for one reason or another – what normal used to mean before the disease’s arrival in their lives. I know from personal experience with my father, that the caregiver truly can’t imagine life without caregiving – so all-consuming and life-changing is a fatal disease in ones life.
Normal? What does that mean? And in the midst of caregiving, you become aware that the only escape from this new and ever-changing normal is the death of the one for whom you provide care. What liberation! What freedom lies on the horizon!
No, that is not what the caregiver is thinking. He or she is focused on the here and now, because such focus is required in order to adjust to the shifting sands of normalcy.
But the end does come as it did with my father on October 13, 2007, with my sister-in-law on July 4, 2012, with Chuck in late February 2014, and as will happen with TLO once Chris and TLO’s journey comes to an end.
What we all would give for just one more day of abnormal normalcy with our loved ones.
But all journeys come to an end, and none of us would rob our loved ones of their final escape to a destination towards which their lives had been headed since their own personal diagnosis day.
Freedom from pain; freedom from physical and cognitive restrictions. Let it be.
A fellow Blogger, Frangipani Singaporenicum, submitted an excellent article, “Mom is Back,” about the hurdles experienced when her mother traveled by airplane back home after a visit with one of her daughters. Frangipani’s siblings weren’t fully aware of the breadth of their mother’s disease so they thought that the mother would be in good hands at the airport because they had arranged for an airport escort to get the mother to her airplane destination.
Unfortunately, what could go wrong did go wrong. “Frangipani’s” mother has mixed dementia, Alzheimer’s and vascular dementia, and found herself in unfamiliar surroundings when she became separated from the airport employee – a stranger in the mother’s eyes – who was supposed to assist her. Getting lost in an unfamiliar environment is something that comes quite naturally to those with any type of dementia. And as often happens when a person is lost, we try to get un-lost. That attempt brought her mother to another airline terminal where a kind gentleman, noticing her distress, found the assistance she needed to get on the correct plane at the right time.
Those of us who have children – and please bear with me while I make this comparison – know how easily a child can wander away from our purview. We make a quarter turn at the grocery store to get a box of cereal off the top shelf and “POOF!” our child is nowhere to be found. I’m very familiar with this feeling because it happened to me many years ago when my adventurous daughter wandered away – causing me near cardiac arrest – and was subsequently prevented from exiting the grocery store by a Good Samaritan grandmother who knew better than to let my daughter run out into the parking lot. “But I only turned away for a second!” That’s all it takes.
So too can a person with dementia wander away because of something that attracted him; or more likely, with your back to him, he didn’t recognize you any more and walked away to try to find you. “But how can I keep my eye on him at all times?” You just have to.
SOME TIPS OF THE TRADE.
Public restroom challenges. If you or your loved one needs to use the bathroom, find one of the family bathrooms that now exist in many public places so that your environment is controlled, and everyone’s needs are met. Don’t think for a second that you can say to your husband, “George, you stay here while I run into the ladies’ room. I’ll just be a minute.” Be prepared to call security when you come out of the ladies’ restroom because in George’s mind, you disappeared, and the time frame of a minute means absolutely nothing to him. And forget about sending your husband into the mens’ room by himself to meet his potty needs. You’ll be waiting, and waiting, and waiting, and he just a) may not do his business; and b) may not come out on his own. If no family bathrooms are available, stand at the entrance to the public restroom and announce yourself: “Woman entering with husband who needs assistance!” You’ll find that those within will cover up what needs covering and not call security on you.
Medic-Alert jewelry. The Alzheimer’s Association strongly recommends purchasing a Medic-Alert/Safe Return device which provides 24/7 emergency response service. At least if your loved one gets lost, they will be reunited with you sooner. This service is available in 50 countries, and in 140 languages. The service speaks for itself so please check the link attached to research the many benefits of this membership service that, quite frankly, brings priceless peace of mind and provides a healthy dose of safety for your loved one.
Now they see you – now they don’t. The examples cited above would not be complete if I didn’t add a personal experience from my days of being my father’s primary long-distance caregiver. My dad lived in a Continuing Care Retirement Community (CCRC) in Southern Oregon. When first diagnosed with Alzheimer’s he was very functional and remained in the assisted living apartment on campus that he had shared with his wife prior to her death in January 2007.
I stayed at a nearby hotel when I visited my father but spent most of the day with him on outings and/or spending time with him in his one-bedroom, one-bathroom apartment. At one point during an apartment visit, I announced to him that I was slipping into the bathroom, 10-feet away, and would be just a minute or two.
I was glad to have locked the bathroom door because partway during my “sit” dad was frantically jiggling the doorknob from the bedroom side of the door shouting, “Irene! Where are you?! Are you o.k.? What’s going on?!!” I was less understanding at the time and returned my own crazed shout of “Dad!!! Leave me be! I’m just going to the bathroom!!!” Knowing what I know now, I would have exited the bathroom and apologized for frightening him, and made every attempt to make him feel safe again. As Oprah Winfrey often says, “We do better when we know better.”
This unintended “peek-a-boo” event proved to me that my father did not have an understanding of the passing of time, but more importantly, that if he couldn’t see me, I wasn’t there. Back to the example of children, but this time, you’re the child.
You’re at play in your bedroom, having just left your mommy gleefully singing in the kitchen while she did the dishes. Your dolls are lined up on your bed, you’re engaging them in discussion, and all of a sudden you notice that mommy isn’t singing any more. You toddle out to the kitchen, and mommy isn’t where you left her!!! “Mommy! Where are you?! Mommy – I’m scared!!! Help me Mommy!!!!!” Your mother steps out of the adjoined laundry room and calms you down – “Irene, I was just five feet away; I didn’t go anywhere, I’m right here!” You run into your mommy’s arms and feel safe again.
Alzheimer’s and other dementia are very unpredictable diseases. What can be predicted, however, is that the onus will always rest on us to compensate for our loved one’s challenges. As I’ve mentioned in previous articles addressing dementia, we have the ability to adjust to the diseased person’s reality; not the other way around. It’s hard work for us, but it’s an impossible task for them.