There are millions of stories from families and individuals with Parkinson’s disease, and how a place like the Parkinson’s Project could help…30,000 alone in Washington state. Please read these testimonials to learn first-hand of this real need.
My dad, Harold Dewey Almy spent his life playing by the rules. He loved his country. This picture captures him in his Navy uniform. A white sailor cap covers his dark hair. A wide smile almost merges into the white stripes that stretch across his navy blue collar.
Almy also loved his wife and children. He lived his entire life being a good human being. But Parkinson’s was not good to him. It didn’t play by the rules. It ravaged his body and his mind.
It forced him to separate from his wife of 54 years. The facility they had chosen couldn’t care for him because of the Parkinson’s. He ended up in a nursing home. And even that didn’t last. The nursing home kicked him out because the medication the disease required caused behavior problems.
For someone who thought that doing the right things in life would lead to the right ending, it became a tragic end for him and his family.
I wish there had been a Parkinson’s Project for Harold Dewey Almy.
Jeanne Kieffer acted wild and crazy at times. She ran marathons. She skied. She biked. She traveled the world. Comfortable in her professional life as a career woman, she also felt at home gardening and staying connected to friends.
For Kieffer, any conversation often ended up with her having the last word. And she faced her problems head on. When she was diagnosed with Parkinson’s in 1992, she decided she’d do what she always did. She would fight to have the last word and face her future without flinching.
That’s why she’s supporting the Parkinson’s Project.
My mom, Eloise Holman, loved fishing, painting and close friendships. Her home in the city, and her beach home that overlooked the Pacific, always remained open to family and friends.
She seemed capable of handling it all. One moment she might be sharing a quiet, personal moment with her husband Fran. The next moment she would welcome a dozen or more people into her home for an impromptu dinner and discussion. All this kept her spirit vibrant and strong.
Those special qualities of hers continued even as the grip of Parkinson’s progressed and the challenges abounded. We searched for a facility that understood the complexities of PD. They wanted a place that would welcome individuality. And that offered a home-like community. We couldn’t find one.
That’s why I started the Parkinson’s Project.
The more I think of a place where Parkinson’s people can be taken care of the more I know you are going in the right direction. Everett sleeps at all odd hours, is awake so often in the middle of the night and then sleepy for part of the day. I don’t think the care givers understand his needs. Again I had to tell the new nurse that his [medication] is not given with protein, nor at meal time. She wanted to see it in writing because in school they were never told that and so it goes. Meal time is another hard time. [Everett] might not be able to eat when the rest eat and so it goes on and on with how different one with Parkinson’s can be from others in a regular nursing home.
In the fall of 1998 my mother’s Parkinson’s went from a slow 10-year progression to a speeding train of hallucinations, nightmares, and irrational behavior….
In the years to come, independent living became an issue….My sisters and I had to make the difficult decision to put mom in a nursing home. God bless the people who work in nursing homes and care for so many elderly and infirm patients at once. I just wish my Mother had not been one of them. A housing option geared for the entire particular physical, medical, social, spiritual and emotional needs of PD patients would have been a Godsend.
My mother was capable of more life than she experienced in the nursing home. And, yet the nursing home was needed to protect her safety and therefore her life—another cruel irony of PD. It gives me much hope and even joy to think of other families having a better option of a place for their loved one to live with Parkinson’s, really live.
My husband has a particularly bad case of PD. He has been in and out of nursing homes over the past year and is residing at a large boarding home facility in Shelton, WA near our home. They want him to move due to “attitude”. I am having great difficulty finding an appropriate placement where the staff would be educated about PD. The staff who work with him currently believe he is in full control of his attitude and movements. Can you help?
~ Barbara Whitener
I wake from a dream, tingling with excitement. In my dream a friend has taken me to the opening of a very special place. Like the Bailey-Boushay house in Seattle, which cares for AIDS patients, and a-typical assisted living houses, this is a home for Parkinson’s dwellers in the Puget Sound region. In my dream this dwelling is home to up to 25. There are state of the art physical therapy facilities. The rooms are filled with light, art, music and respect. An aquatic center provides water therapies available to out-patients as well as those who live here. Healthy foods are emphasized, with a rooftop garden where a labyrinth can be walked and a pebble walk marks reflexology points.
In my excitement I Google this dream and the first item that comes up is [the Parkinson’s Project]. I have all the sympathy for families and caretakers of Parkinson’s, even more with my fellow Parkinson’s people. I don’t have money to burn but want to help in any way I can. I may be selfish, but I hope that if I have special needs I will have such a facility available to me down the line.
~Carol Jane Bangs
My mother’s first Parkinson’s disease symptoms began more than 10 years before she was diagnosed. By then, in her late 30s, she was divorced and her children were off at school. At first she continued to live alone, but the combined effects of the disease and medication to treat it made that increasingly difficult. She suffered mild anxiety and depression and was often afraid. She had difficulty moving, particularly at night and worried that if there was a fire or an intruder she would be unable to react or call for help. It soon became apparent that she needed a safe home and assistance managing her disease. Having no relative who could provide this, she turned to the community and a series of rest homes, half-way houses and nursing homes. Most were designed to house much older residents, many living out their last days. Some served as temporary homes for people struggling with mental illnesses or addictions. One specialized in people with MS. Though some tried, none understood the full nature…of her disease or her needs as a PD person.
My mother needed a place with …people who were living full lives. She needed help with exercise, diet and lifestyle activities such as music, massage, art, cooking, book clubs, community outings and spiritual and religious pursuits. She needed those services (including meals) available during her “up” times so that she could participate as fully as possible. She needed a physical facility that had fewer staircases and slippery floors, and more soft landing spots. She needed a building and garden area that she could maneuver as her balance deteriorated and when she eventually needed a walker and then a wheel chair. She needed a place where family could gather, so that she could continue to participate in holidays, birthdays, anniversaries and other special family occasions. She needed a place her loved ones felt safe and comfortable leaving her. Eventually she needed help with personal hygiene, eating and getting around, including in and out of chairs and beds. At all times, she needed her medication at exactly the same time every day and compassionate doctors, nurses and staff familiar with, and constantly updating their understandings of, the realities and variances of Parkinson’s disease.
…[S]he never found a facility like the one the Parkinson’s Project is striving to build….I hope her story will encourage you to help build the facility that did not exist for my mother, but through your efforts can exist for future PD people.
The thing that baffles me most about PD is that it afflicts everyone who has it differently. Each patient seems to be treated differently for it, even by the same doctor. While it is possible for patients to compare symptoms and therapeutic options, Parkinson’s is essentially a lonely journey, one in which each patient must find his or her own way. This is one reason why an assisted living facility just for PD patients is such a necessity. It will allow patients to interact with each other on a daily basis, build a community that encourages them to deal constructively with their disease, and enhance the quality of their lives. I remember reading somewhere that PD people do better when they “walk” together than when they have to walk alone, literally and figuratively. That’s why the PD assisted-living facility must become more than a dream. I’m planning to hold out until it becomes a reality.
~Maureen Carleton, PD patient since 2004
My husband Bob was diagnosed with PD in July 1997….So much has been learned [about Parkinson’s care] since Bob passed away in May 2002. If a specialized assisted living facility had been available, it would have been enormously helpful.
My Dad was diagnosed with Parkinson’s 24 years ago. Fortunately, my wonderful mother spent many years as his devoted caregiver…. After her death, my sister and I, along with our husbands, took on the role of caring for our Dad. We were with him 24 hours, seven days a week for three months. We realized that this situation could not work out for us on a continuing basis, and talked my Dad into going into an assisted living facility. We sometimes regret this decision.
We have nothing but good things to say for this facility. However, his condition has deteriorated extremely fast in the last few months. It has been a constant battle to advocate for him and try to get the facility to understand this disease. Because of falls and confusion, he has very little freedom and needs escorts for everything he does…bathroom, meals, activities. Unfortunately, on his good days, which do come, he is still treated as an invalid. It is so difficult for us to constantly try to explain the ups and downs of this hideous disease and get him the support he needs….It is just not understood.
We look at this kind, gentle, and loving man who has always taken such good care of his family and feel as if we can’t help him the way we should or would like to. We watch him struggle and wish there was somewhere to turn to give him the support and help he deserves….
….[M]y Dad’s condition is declining. After 20 plus years of PD medication, his body just started rejecting the same things that have helped him. Confusion, agitation and even aggressive behavior caused many problems at his assisted living (completely out of character for him)….
There are so many residents at his facility with health problems, but none seem to be as confusing or difficult as dealing with Parkinson’s. I wish every person afflicted with this disease had an opportunity to reside in a facility that could deal with this disease physically, mentally and emotionally. I wish you nothing but success in your endeavor to fund a supportive living residence for these people. Please let me know if there is any way I can help.
From painful experience, I join in the quest for a specific Parkinson care facility. One short respite experience was a disaster for us because the agency felt the only safe area for my spouse was on the Alzheimer’s ward. He was safe, but we were all so sad.
My husband was hospitalized and then spent six weeks in a well-respected rehab facility. Neither institution could manage his medication schedule. The unique needs of medications and meal timing do not fit in the usual medical model.
The other disturbing aspect of care in the rehab center was the seeming lack of awareness of PD time. Parkinson time is slower time, teaching, requiring patience from caregivers, therapists, family, etc. The physical therapy skills that the Booth Garner Physical therapy team had taught us fostered my husband’s mobility, balance, gait and his ability to stand, sit and turn. It was heartbreaking to be in a rehabilitation center whose time schedule could not tolerate the time required for true rehabilitation.
An online support group strengthened my own care giving difficulties. We could be a model for the country, and the world….Thank you.
We called her “Nurse Thompson.” She left Kansas as a young woman to become a Navy nurse – a perfect calling for a natural caretaker. Years later, Mom would be the one needing care. When staff at her assisted living center decided that Mom needed more help at meal times, I moved Mom in with my son Ryan and me. We had a wonderful, grueling, rewarding and exhausting year and a half until repeated falls required a change. Our best available choice was a nursing home. I watched my mother’s life grow smaller until she was starting at the ceiling.
I wish there had been a warm, community-style setting were Mom’s PD specific needs could have been met. A place that would have helped her live up to her abilities, instead of focusing on basic needs. That place is my dream for other families facing PD and why I support the Parkinson’s Project.
My wife, Sheryll, was diagnosed with PD in 1973 and spent the next few decades hopeful, optimistic and never once complaining. She volunteered within the PD community and kept golfing until she could no longer stand.
As her condition progressed and falls became more frequent, we searched for residential full-time care to meet her PD-specific needs. One facility turned her away, citing that she needed too much care. We found the best available living situation, but if there had been a full-time care facility focused on Parkinson’s would she still be alive today?
I believe that if we had found housing with PD knowledgeable caregivers and staff – trained and willing to meet the needs of people with PD – her life would have been richer and perhaps longer.
~ Paul Harbaugh