Caring for Dementia and Alzheimer's: A Personal Story
Caring for Dementia and Alzheimer's: A Personal Story
Meet Larry and Jill Ellis of Denver, Colo., winners of Homewatch CareGivers' Family Caregiver of the Year Award in Denver. The Ellis family has been through the ringer when it comes to dementia and depression, and while their story provides inspiration for families in similar situations, it also reminds us that caring for parents with Alzheimer's has taken a toll on the entire family.
"It was difficult, but I could not imagine caring for our parents any differently"
Alzheimer's is a maddening disease, not only for the afflicted, but for their family care giver as well. In a recent study, the Alzheimer's Association estimates that more than 65 percent of care giving spouses die before their Alzheimer's-afflicted husband or wife. While dealing with dementia in others, almost 30 percent of family care givers suffer from clinical depression and emotional stress.
In October of 2007, Larry visited his parents, Harry and Freddy Sue, in Texas and found a sad scenario of recognizable symptoms of Alzheimer's. The house was a mess it appeared that neither parent was able to clean or even do laundry on a regular basis. His mother was clinically depressed from taking care of a husband. "It was a dangerous situation for them," Larry said during a recent interview. "His dad would turn on the burner on the stove and then forget about it. And in spite of the fact that the pan would burn and smoke, he would not even hear the smoke alarm." Steps were taken immediately to move Larry's parents, who were showing signs of dementia, into an assisted living residence in Denver, where they could be cared for around the clock.
In 2008, the Ellises traveled to Florida to check on Jill's parents, John and Jeannette (Jenny) Senning, who had recently moved to an independent living facility. What they found was eerily similar to what Larry had discovered with his parents Jill's father, who was battling Alzheimer's, had no clue who Jill was. Her mother had been in bed for three weeks, immobilized by a profound feeling of helplessness.
As with Larry's mother, Jenny was clinically depressed as a result of trying to care for John on her own. Managing dementia related situations such as John nearly swallowing hearing aid batteries thinking they were his pills became to much to handle alone. Additionally, John would not let anyone help him if he did not know them, thus putting the full weight of responsibility to address his symptoms of Alzheimer's onto the shoulders of his wife. As a result of Jenny's unresolved depression and deteriorating health, Jill made a snap decision to bring her parents to Denver. After stabilizing their health, a family decision was made to build a new wing on their home to make the assisted living transition easier.
"It was difficult, but I could not imagine caring for our parents any differently," said Jill. "We love having our family close to us and in our lives every day, which is one of the reasons we moved them to Denver from Texas and Florida when things started breaking down for John and Harry, in terms of their dementia."
With both sets of parents under their close care, however, Larry and Jill quickly realized the difficulty of tending to aging parents who are dealing with dementia. Having no experience with Alzheimer's home care, the Ellises reached out to Roger Rhodes, owner of Homewatch CareGivers of southwest Denver. Rhodes had recently given a Pathways to Memory seminar at a local church that the Ellises attended. According to Larry, the information Rhodes provided them at the seminar and in follow-up discussions was "shocking."
"We were only marginally prepared for all the decisions we faced," Larry said. "Roger provided us with a checklist, which served as a road map of what to watch out for and the difficult decisions we were facing. Jill and I have made those decisions as needed, every day, over many months and years, and they continue to be made." According to Larry, Rhodes helped direct the Ellises to a specific elder law expert who helped them prepare the legal documents to make financial management easier, provided them with awareness regarding Alzheimer's aid and attendance, and helped them understand the world of home-health assistance. "That was a huge learning experience," Larry said. "We had no idea the plethora of problems that we would face with my dad being uncooperative in his dementia, and even getting hostile at times."
Jill's mother has experienced a reawakening as her depression disappeared, because she is no longer alone while trying to care of her husband's symptoms of dementia. She now seeks tennis partners, conducts most of the cooking for the Ellis family, and manages her huge flower and vegetable garden in spare time. Sadly, Jill's father, John, lost his battle with Alzheimer's, passing away in January 2010.
Larry's mother, however, has been through a hip replacement, pacemaker installation and most recently, a broken wrist which occurred in the hospital during physical therapy. His father, meanwhile, continues to struggle under the weight of his own dementia. According to Larry, his father has "lost all inhibitions and is far more impulsive than in his earlier life."
During a typical week, Larry is forced to deal with his father's dementia head-on. On any given day, Harry might open a bank account and start writing bad checks, or be seen by others conducting himself with inappropriate public behavior. His hygiene has slipped, and he chews tobacco, leaving a trail of tobacco behind wherever he goes, forcing the Ellises to clean their carpets frequently.
The Ellis family continues to plow forward without using much outside assistance, minus a four-month rehabilitative stretch where Larry's mother needed someone to administer medication while Larry and Jill were at work. In addition to Jill's mother providing assistance by providing needed energy and serving as the family cook, the Ellis' adult children also serve as caregivers." One cannot do this alone and stay sane," said Larry. "Jill and I get away as often as we can, hopefully at least once a month and go to our little mountain cabin near Estes Park, leaving our kids in full command. Without that, we could not manage."
Despite all the extra time and work required not to mention the emotional burden the Ellises say it is worth it to be able to ensure that their parents are cared for and loved in their final stages of life and Alzheimer's. The Ellis family agreed to share their story with us because they want to encourage others to take part in the lives of their own aging family members, and hope to help other baby boomers realize that they, too, can make a tremendous difference in their family members' quality of life.
"Our friends can't comprehend taking the steps we have taken, but for my parents, their quality of life is so much better in Denver than it was in Texas," Larry said. "The move made perfect sense to us."
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