Share stories of mental decline of patients, heartache of caregivers
Mildred “Muney” Davis is described by her son as a “real lady”: she taught her son to hold doors open and she never used four-letter words.
ALZHEIMER’S DISEASE She worked for her husband Lou’s business, and volunteered her time for the Jewish Chronic Disease Hospital in Brooklyn, and was president of the volunteer organization of the Mildred Davis Unit, not named after her.
But once she moved from Brooklyn to a new residence in Manhattan in the 1970s, things weren’t quite so familiar to her. She would begin to pretend she recognized business associates when in fact she didn’t know who they were, she would get lost even though she was one block away from home, she put too much dish detergent in the dishwasher and caused a flood, and the proper, well-to-do woman cursed at a woman wearing a fur coat.
Although the disease was fairly unknown at the time, Muney Davis was eventually diagnosed with Alzheimer’s disease when she was in her 60s.
Her son, Robert Davis, recalled instances when the family noticed something was wrong but assumed it was just old age, as many people did back then. The North Brunswick Township councilman said that she would ask a question and then ask the same thing a few minutes later. During a cruise, she was confused several times about where she was. She was misplacing items around the house.
“In the beginning, you kind of lose patience when someone asks you the same thing over and over again,” Robert Davis said regretfully. “But you have no idea.”
Muney Davis was tested at Mount Sinai Hospital in New York and was diagnosed with the most common form of dementia. However, the doctor told Lou Davis, “Your wife has Alzheimer’s and there is absolutely nothing we can do about it. It just gets worse,” Robert Davis said.
“The doctor gave my father absolutely no help,” Robert Davis said. “The most frustrating thing is, there is nothing you can do. It literally is a death sentence. The person goes from being an active person in society to pretty much a vegetative state.”
Lou Davis’ cousin was a top neurologist and psychologist in New York and prescribed different experimental medications for Muney, but nothing worked. Instead, Robert Davis watched his mother get progressively worse.
“She needed someone with her all the time. She would forget things. Her personality changed,” he said. “I think the most difficult thing is that here you have active people who are always out there doing things and all of a sudden they’re sliding into dementia.”
Muney Davis eventually became bed-ridden and had to be fed intravenously. Her husband had taken out an insurance plan years before that allowed her to have round-the-clock nursing, but the cost of her overall care was $1.5 million, Robert Davis said.
Yet despite all of the medical attention, Muney Davis passed away 18 years after her initial diagnosis, at the age of 82. Albert Einstein Hospital in New York performed an autopsy on her brain, but it was determined there was nothing significant that could be used in Alzheimer’s research.
“We did it because we felt if there was something they could find that did help somebody else, then the death of my mother wouldn’t be in vain,” Robert Davis said.
Robert Davis said that the caregivers suffer the brunt of the disease because they need to be with a patient 24/7. He said his father would come home every night and talk to his wife, and if she would utter just a word or two, he would think there was improvement. He refused to put her in a nursing home, although the couple’s two children made the difficult decision to move her to a facility a few years before she passed away so that she could receive the constant care she needed.
“It is very hard for a person to accept that,” Robert Davis said of watching a loved one decline, especially seeing his mother for over a decade not being able to recognize people. “It is affecting them physically, but mentally it affects the caregivers and family and friends.”
Lou Davis, who had never given up hope for his wife’s improvement, lived for nineand a-half years after she passed. His son called him “tough” and one of the strongest people he knows.
Another person Robert Davis called his “pillar of strength” is his own wife, Linda, who was also in pain from watching her mother-in-law suffer.
Linda Davis said her relationship with the Davises was better than her relationship with her own parents, and said she was always treated like a daughter instead of an in-law.
“Eventually you look at what’s the quality of life and you know this was a very vibrant, active, involved woman … and to see her decline, to see her finally in a home in the fetal position, it hurts,” Linda Davis said. “As much as I loved her, I had to let her go. She was just existing.”
Linda Davis said the family was also very concerned about Lou Davis, because of the energy and time he put into caring for his wife.
However, to cope with his situation, the elder Davis had joined the New York chapter of the Alzheimer’s Association and helped raise over a million dollars for research.
Robert Davis is now involved with the Greater New Jersey chapter.
Robert and his sister, Barbara, are also participating in The National Cell Repository for Alzheimer’s Disease study through the Department of Medical & Molecular Genetics at Indiana University School of Medicine. Blood samples are being used to obtain DNA and cell lines for research purposes, though it is not a diagnosis of Alzheimer’s, and half-hour memory tests are given. Family history is provided as well because the study requires that two relatives have had the disease; Robert Davis said he believes his mother’s sister had it as well.
“We all forget things but when you have someone in your family, it’s definitely in the back of your mind,” he said, “but you can’t worry about it. You’ll drive yourself crazy.”
The Davises advise others to get tested right away if something is suspected, to find facilities for patients so that caregivers can rest, for all family members to be involved and share the responsibility, and for those affected directly or indirectly to attend support groups. Alzheimer’s patients die twice: the first time, when they lose all sense of themselves and their surroundings, is the most painful.
The second time, when they pass on, is a relief.
Teri Tumbleson, of Sayreville, said that was the best advice she was given when her mother, Santa Restivo, was diagnosed seven years ago with the mentally debilitating disease.
Tumbleson said her mother, who was 74 at the time, had been doing “silly things” her family would laugh off prior to her diagnosis, such as putting too much soap detergent in the washer, or donating a lot of money to different charities.
However, when the situation came into question, Restivo was taken to a neurologist in March 2002 and through a process of elimination, mainly by ruling out a carotid sonogram, MRI and EEG as negative, she was diagnosed with Alzheimer’s.
Restivo continued under the care of the neurologist for the next year-and-a-half, and was given memory tests to check what state and county she lived in, what floor she was on, the season and month, and what time it was.
Tumbleson said her mother only scored 14 correct out of 20 questions.
“I was extremely upset because I couldn’t believe how bad she was at that point.
The neurologist prescribed a host of medications, including Exelon to slow the dementia symptoms, Lexapro to calm her bouts of crying, Seroquel to help her sleep, and something to quell her dizziness.
“There is really no solid proof that any of these medications do what they say, but I wouldn’t take the chance [of not using them],” Tumbleson said.
In the meantime, Restivo was getting worse, asking to “go home” to her childhood home in Brooklyn, walking outside and upstairs of her Sayreville home late at night thinking she was going to her upstairs bedroom in Brooklyn, forgetting she ate and consuming portions such as 10 bananas or a loaf of bread, placing dirty knives and forks in a plastic bag in a clothing drawer, hallucinating, and acting out in an agitated manner.
“It used to bother me. I would think, why doesn’t my mom realize and say what she has to say. … I used to think, if it were me I would tell everyone what was happening.… It frustrated me that she didn’t know this. It made me angry,” Tumbleson said of her initial reaction.
But then, she realized that she could not blame the former stay-at-home, quiet mother who had changed into a loud woman who would curse and yell; instead, she had to blame the disease.
Then, in March 2003, Restivo went to see a geriatric psychiatrist at the University of Medicine & Dentistry of New Jersey University Behavioral Healthcare.
She was referred to the Carrier Clinic in Belle Mead for two weeks. While her relatives were not allowed to see or call her, she was detoxified of all her medications and given new prescriptions.
She was prescribed Exelon, and also Respitrol, Zoloft and Depakote to calm her.
After the end of those two weeks in May, Restivo was discharged and placed at The Chelsea Senior Living Facility in East Brunswick. Tumbleson was so impressed with the facility, she said if something happens to her, she wants to be placed there.
She said her mother loved it too, calling it her “apartment,” and thinking it was her “job” because in the beginning she helped push wheelchairs and serve food.
The recreation director there kept the patients active: they played card games, drew pictures, sat in the garden and took bus trips.
However, as time went on, Tumbleson said her mother began coloring out of the lines and stopped writing her whole name.
Restivo began to revert back to her childhood, looking for her mother, wanting to cook dinner for her husband and asking for her young kids.
Tumbleson also said when the sun went down, all of the patients would begin to whine, cry, yell and try to leave, which was known as “sundowning.”
“It’s just a heartbreaking thing,” she said. “You never go back up. You know there is no cure and you’re never going to get better. You stay at a plateau and then drop down.”
The spiral downward led to Restivo’s admittance to a nursing home in Matawan in 2006: she stopped using the bathroom, she was falling out of bed and she eventually needed a wheelchair.
During this time she was also going through hospice.
“She wasn’t hurting, but who was hurt most was the people around her,” her daughter said. “But she’s my mom. She took care of me growing up, so I can take care of her now.”
The Alzheimer’s progressed quickly: Restivo couldn’t chew and finally stopped breathing.
She passed away in April 2007 at the age of 79.
Tumbleson said the experience has taught her a lot about Alzheimer’s, and that despite dealing with her father’s heart problems, her grandmother’s stroke and her mother’s-in-law lung and breast cancer, Alzheimer’s is the toughest to deal with.
“I’ve gone through things but [Alzheimer’s] has to be the most terrible disease that there is. It could last 20 years, it could last two years, you never know. Everything just gradually stops.”
Tumbleson said she learned that anyone with an inkling of a problem should get tested; that all doctors should be informed of a family history of Alzheimer’s; that a geriatric doctor should be sought to deal with the elderly instead of a general practitioner; that a living will and power of attorney documents are necessary before the patient declines; that family members must make sure that Alzheimer’s patients are not overmedicated; that patients are spoken to because despite not being able to respond, they most likely can feel your presence and hear your words; and that caregivers need their own time to rejuvenate themselves for their own health and well-being.
She also recommended the resource book “The 36-Hour Day” by Nancy L. Mace and Peter V. Rabins.
Tumbleson said that she does not feel any guilt because she knows her mother is with her father in a better place, and because she knows she did everything she could to help her mother.
“I knew that wasn’t a life because she wouldn’t want to live like that. I don’t want to live like that,” she said.
Yet thoughts do linger with Tumbleson about the future of her relatives, because her aunt, father-in-law and possibly her grandfather have suffered from it.
“The only thing that bothers me to this day is when I forget things. Will I get this?” she said rhetorically. “They have to find something for this because way too many people have this disease.”
10 warning signs of Alzheimer’s disease
1. Memory loss
Forgetting recently learned information. A
person begins to forget more often and is
unable to recall the information later.
2. Difficulty performing familiar tasks
Finding it hard to plan or complete everyday
tasks. Individuals may lose track of the steps
involved in preparing a meal, etc.
3. Problems with language
Forgetting simple words or substituting
unusual words, making their speech or
writing hard to understand.
4. Disorientation to time and place
Can become lost in their own neighborhoods.
5. Poor or decreased judgment
May dress inappropriately, wearing several layers
on a warm day or little clothing in the cold.
6. Problems with abstract thinking
May have unusual difficulty performing
complex mental tasks, like forgetting what
numbers are and how they are used.
7. Misplacing things
May put things in unusual places — an iron in
the freezer or a wristwatch in the sugar bowl.
8. Changes in mood or behavior
May show rapid mood swings — from calm to
anger — for no apparent reason.
9. Changes in personality
May become extremely confused, suspicious,
fearful or dependent on a family member.
10. Loss of initiative
May become very passive, sitting in front of
the TV for hours, sleeping more than usual or
not wanting to do usual activities.