My father was a truly a great man. He was a caring human being. He went to church, worked hard, was a great provider, and helped many others during his lifetime.
He never forgot about how blessed he was. He believed those less fortunate were likely not afforded the same opportunity in life. I am sure he would be outraged by today’s politicians who like to refer helping the less fortunate as “stealing from the rich to give to the poor.” In those days my father just felt it was the right thing to do.
He was a CFO of a major international manufacturing firm. He hardly ever used a calculator (PC’s weren’t around in those days) doing most of the number crunching in his head, sat on numerous boards, supported local charities, was a non-smoker, drank the odd glass of sherry, spoke multiple languages, read books, played puzzles, loved the arts, music, bridge and traveled. His favorite past time was spending time at the lake cottage.
Alzheimer’s disease took all of that away from him at the ripe young age of just 69. The following seven years became one of our families darkest periods instead of the “golden years” that he had anticipated. It was a seven-year ordeal that saw every fiber and raw emotion within our family exposed. We struggled together, and we also struggled individually, as does most every family who is victimized by Alzheimer’s.
We did not have a vote the matter. The disease chose our father. And by extension it chose to impact every member of the family.
It progresses to the point that there is a loss of control of the body’s functions. This impacts human dignity and relegates “once great individuals” like my dad (and more famous victims like Margaret Thatcher and Ronald Regan) to forced feedings through plastic tubes, sponge baths and diaper changes which are performed by family members or nurses.
It is humiliating. Most victims would likely choose to “free oneself” along with family and friends from the physical, emotional and financial hell of being hand held and force fed by a 24-hour ward of caregivers. They would choose to take that final trip quickly rather than this tortuous path. It is also an unnecessary burden to the individual and every family member. But by the time they are diagnosed with Alzheimer’s they no longer have the opportunity to render such a decision. That is a decision that has to be made in advance.
For me, I have already made my desires well known. I need to die with dignity, never wanting to encumber my wife and other family members from the “prison sentence” of caring for me, as I pass from loving father, husband, grandfather, to a total stranger and invalid requiring 24-Hour care year-after-year. I must have the ability to make my own decision to “Move On,” when I am of sound mind and able to do so. I also respect everyone’s decision when it comes to such matters. It should not be a law or a government-mandated decision; it must be yours and yours alone. There are many things government or local laws should steer clear of and this is certainly one of them.
Another burden for family members of an Alzheimer’s patient is individual guilt. It is an endless list: decisions to be made, things they did, or did not do, but feel they should have done, how they missed that anniversary, wedding, birthday, or said no to something important when asked to attend or participate, to their ability to help with the care, or not help. And this all while a loved one recedes into his/her own world of darkness, which is far removed from the life the rest of us are living.
For many, it’s this same guilt factor that further complicates the issues when hard decisions must be made. It’s not uncommon for family members/relatives to start pulling back into their own little groups, that are tabling opinions as to who should care for mom or dad; should they stay at home; should they be institutionalized, and if so, what home or hospice … to asking “are we sure mom or dad really know what’s happening.”
The emotions will be flying from all sides. Everyone’s intentions are genuine, and it’s a natural reaction when it everyone’s own emotions are being stretched to the breaking point, it makes even the simplest actions tough on everyone. And it’s these family fractions sparring among themselves (for what they all believe to be the right course of action) that ends up tearing families apart. But however it impacts your family, guilt and raw emotions will play out.
When mom or dad has been diagnosed with Alzheimer’s, many family members don’t understand the process. Denial sets in -- “can’t be happening, “we can fix it,” “the doctors are wrong,” “dad looks fine.” Then dad forgets the name of his wife and then your name and soon is found wandering in a store. Or a friend calls you to say that dad has been knocking at their front door for 10 minutes.
In my case, I went through the 12-step program, except with me it was the “staircase of guilt” that had me searching my inner soul, where I asked myself over and over again, why?
Expanding on my experiences, I hope that it can better assist others when coping with their loved ones when a family member is diagnosed with Alzheimer’s. Be prepared for the pressures that will be felt by the primary caregiver (opposite spouse) and then by those who will also become involved in the process. These pressures will seem insurmountable at times, but like everything else, you will address them one-by-one and do the best you can. Never underestimate the mental stress, physical fatigue and in some cases, the financial burden (a cost that can easily reach $100K/year) that are all likely to come into play. Everyone will deal differently with AD, and it is also important to understand this.
I recommend that you first seek out someone you know who has already experienced Alzheimer’s in their family and talk to them. Trust me you will learn a great deal from anyone who has previously traveled this same road.
Remember to treat your mother or father (or other family member) with the utmost of respect at all times. You may not know when a victim of Alzheimer’s is tuned into what’s being said in the room or to what’s going on, as opposed to being somewhere else at that moment in time. For that reason it is best to never discuss anything in front of your family member that pertains directly or indirectly to them.
I can remember at my mother’s funeral, with my dad 5-plus years into his declining state of mind, sitting in the church pew surrounded by family. Well into the service when the eulogy was given for my mother, I remember that my father’s grip on my wife’s wrist nearly broke her hand as he squeezed it so hard. No facial gestures, but looking into his eyes, no doubt existed that my father was “tuned in” and very much aware of the service taking place, and for the loss of “the love of his life.”
It’s important to understand and to accept that not every family member or relative will be as strong as you, or capable to deal with the disease in the same way as you. Taking care of your loved one becomes a total team effort, where everyone assumes the role they feel most comfortable. Ironically over time, every family member is likely to become a caregiver to each other -- it just seems to work out that way.
One may not be capable to handle baths or feedings, but are able and willing to take them for a drive, or walk them down the front walkway and back, an exercise that alone could take an hour or more. AD patients don’t go anywhere very quickly, if at all. I remember it took my dad 30 minutes to walk down a short flight of stairs. Don’t get anxious, AD is a long and ever-changing process. When you participate and devote your time, you are making a meaningful difference. The role of the primary caregiver takes a huge toll, so make sure that this person (whoever that spouse may be) gets regular breaks and downtime to recharge their engines. The need to take care of the caregiver is also of paramount importance. Family members must realize that “both parents” need equal but different types of caring and assistance. No one can ever underestimate the physical and mental fatigue, the stress and emotional tug-of-war that is always present.
When it’s all said and done, in hindsight, their seldom is a right or wrong. Just a need to stay focused, calm, caring and well rested. Caring for a loved one with Alzheimer disease is a fulltime job and it’s exhausting. Never give up, always stay loving and remember the good days, even though they will grow farther and farther apart.
I remain a firm believer that from time-to-time, that glimmer of light in the dark does turn “on” and how vitally important it is that your love and respect is also in the “on” position when that happens. Don’t run the risk. Don’t ever cheat yourself out of these rare, but truly great moments. And always remember that over time, everything has a way of healing itself.
I am sorry to say there is nothing bright and happy about Alzheimer’s. As one of the world’s fastest growing diseases among baby boomers for which no cure currently exists, I do hope that by the sharing of my personal experiences that I can help the next million families whose father or mother may be diagnosed with this treacherous disease.