Remembering Mom - Honoring Dad
Unless you recently experienced the loss of a loved one, you may have trouble understanding this story. And unless that loved one spent the last seven or eight years of her life, suffering from numerous physical and dementia issues, you will have difficulty appreciating what my dad has recently gone through.
I am referring to my mom, who passed away in July of 2006 and her husband of 59 years, (my dad), who took much criticism in every decision he made regarding her care and comfort.
Mom’s medical chart resembled an American Medical Association Journal. Since 1990, she was hospitalized and, or treated medically more often than any other person I know. She suffered numerous TIA’s, mini strokes that wore her out both physically and mentally.
She suffered from adult on-set diabetes, heart valve malfunctions, blocked arteries, arteriosclerosis and congestive heart failure. Her trips to the hospital in Johnstown, PA were so numerous that local EMT personnel knew the address and location as soon as they got the call. In all, she suffered through at least three heart attacks, but in all probability there were more.
She suffered with bouts of both diverticlulosis and diverticulitis, so painful; it was all she could do to get up off the couch or to get dressed in the morning. She was also diagnosed with Irritable Bowel Syndrome and would bleed easily during flare-ups.
She was afflicted twice with poison ivy and in one of those afflictions, the rash made its way internally into her lungs, where it resulted in a secondary infection of pneumonia. Her lungs were drained in more than one instance and we almost lost her on two occasions in which she could not breathe on her own.
A fall on the ice about 15 years ago, caused some damage along her vertebrate and spinal column, and she never was quite the same physically after that. Another fall, down a set of in-door steps, resulted in facial reconstruction of her cheekbones by a plastic surgeon. She also was diagnosed with a concussion after that mishap.
Mom’s medical treatments did not go well at times either. Because of numerous blood thinners, tests such as catherizations would routinely cause excessive bleeding, and make her hospital stays even longer and more unpleasant than anticipated. The insertion of stents to treat blocked blood vessels had their own repercussions on her fragile body, and each time, her over-all physical condition seemed to worsen.There were times when her groin was not only swollen and black and blue in color, but also so sensitive, that she could not put clothes on due to the pain.
She survived breast cancer and survived surgery to treat not only the tumor, but to remove many of the nearby lymph glands that surgeons thought should be removed too.
Although it took place earlier in her life, mom had a complete hysterectomy too. Each additional woe seemed to compound her suffering and demeanor later on in life.
Mom loved to take small vacations when she could. Her trips to visit her daughter in Ohio were usually accompanied by hospital trips there too. It got to the point that she feared leaving the house because it seemed she always ended up getting sick somewhere other than home. Knowing that Mom enjoyed her visits, Dad would still take her on short trips to stay with and visit family. She seemed happier to go and her happiness was always a major concern for Dad, even though he too, feared she would fall ill away from home again.
I can remember Dad taking her to clinics or hospitals in Ohio, the Maryland shore and in Virginia while visiting or taking a small vacation.
She was plagued too with bouts of heartburn, so severe, Dad had to make calls for an ambulance over and over again. He thought she was in cardio-pulmonary distress. At times she was, but other times, an acid-reflux reaction was the culprit adding to her long list of medical woes.
Certain foods would almost always trigger these acid attacks. But with Mom’s memory, she would forget what she was permitted to eat, and which foods were forbidden.
On top of all this, two factors remained present regarding mom’s situation. One - she steadily declined in her mental awareness, and steadily declined in her ability to retain any sense of short-term memory. Although the doctors were never sure it was Alzheimer’s disorder, it was indeed diagnosed as a form of dementia in every sense of the word.
And two – Dad stood by her through thick and thin.
Dad not only coped with the general chores around the house, but also cleaned-up for mom following occasional accidents, which were becoming more and more common the last two years or so of her life. He also saw to it that she kept her dignity whenever possible – allowing her to shop, buy groceries, and maintain her own checking and savings accounts.
On numerous occasions, Mom would become disoriented in stores, but Dad would always remain close by to attend to her, without making it seem dramatic in nature. He never would call attention to her failing memory, and was constantly aware of her self-esteem. He regularly considered how SHE felt about her memory loss and displayed to her a patience level unknown to any of the other family members. We wondered how he coped.
Many times Dad would have to return the items that Mom purchased, because they were repeated purchases that Mom had forgotten about at home. When he did, he would not always tell her, trying to avoid embarrassing her further. When Mom did notice the items were being returned, Dad would joke about it, and go as far as to get a laugh (with Mom included) at the return counter in the store. The attendants there enjoyed the stories about some of Mom’s purchases and re-purchases.
He never missed reminding her about taking her MEDS or avoiding certain foods that were certain to disagree with her physically. He never complained, but the wear on him, both physically and emotionally was taking its toll. Dad was not a young man anymore either and at the age of 81, this was no easy task for him.
During hospital visits, Dad’s attitude did not go unnoticed by the personnel there. The nurses would admit that their repeated answers to Mom’s questions wore on them. They admitted on more than one occasion that they did not know how Dad could cope with Mom and her demands for both physical and emotional attention. Still, Dad did not falter. He pressed on.
On one occasion a nurse told my wife and I that Mom’s repeated questions reached the nurse’s patience limit within an hour. This nurse was in the HEALTH CARE business and trained to cope with patients like this. But Dad, not trained in health care, was exposed to this relentless questioning day after day, morning, noon and night for years. He somehow pressed on.
After Mom’s last medical (cardio-pulmonary distress) emergencies in late winter of ‘06, it became apparent to Dad that he could no longer care for Mom in the manner in which she needed. For my sister and I, it was a time, long over-due.
With Dad desperately seeking his own approval, and the approval of family and friends, he finally took the advice of both his and Mom’s doctors. With much personal aguish, he managed to allow Mom to be placed in a facility designed to care for patients with her needs. Mom’s dementia was worse than ever and she now required daily diabetic treatment and injections. She was given six months to live, and was under the care of a local HOSPICE.
Visiting her almost daily - dressed in his Sunday suit at times - bringing flowers and cards routinely, and always patient with her questions and repeated complaints, Dad pressed on.
A guilt that no doubt will haunt him forever is embedded in him to this day - a guilt that has no reason to exist. Dad did what he could, and nothing more should have been required of him. And nothing more should have been said, ever. It should be that simple. But it is not.
Some of Mom’s sisters, friends and one of her own grown children have made Dad’s painful decisions even more agonizing. Well-meaning, but not well-thought statements and remarks have made Dad’s last six months a living hell. Not only were comments made behind Dad’s back that hurt him deeply, but many were made to Mom, to her face.
As difficult as it is to believe, rude jesters and comments were even made during Mom’s viewing and funeral.
“Your mom deserved better," we heard from others.
“So does Dad," was my reply. “So does Dad."
Six months have gone by since Mom’s passing. I am just now feeling comfortable enough to put Dad’s story down on paper. It is extremely difficult to do so – even after months of time.
How can I be so sure about my feelings toward my Dad at this time? How can I be so certain of Dad’s feelings towards Mom? And how do I cope daily with his (our) decision to place her in a care-home, instead of continuing to care for her himself?
To answer that, I only have to glance at Dad’s notes, placed here in front of me, while I am writing this story. And, I quote…
“…She got really bad, suddenly. The whole family was called to the hospital. Her heart rate and breathing were slower and slower. I don’t remember what time it was, but she closed her eyes and went to a better place. Thank God, the family was there for her. She was at peace during the last minutes. I love her and miss her so much."
Husband, Chuck, July 25 th ‘06
Note: Dad too has since passed away - 2/20/12