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Still Jean A day in the life with alzheimer's

Mary Jean Williams, an 80 year old elderly woman living with Alzheimer's disease in Lebanon, Ohio, is cared for by her husband, Allen Ray Williams. Allen has cared for Jean since her diagnoses in 2008.

It is estimated by the Alzheimer's Association that "15 million Americans provide unpaid care for the 5.5 million people living with Alzheimer's or other dementias." www.alz.org

"Alzheimer’s disease is an irreversible, progressive brain disorder that slowly destroys memory and thinking skills, and eventually the ability to carry out the simplest tasks," according to the National Institute on Aging, a division of the U.S. Department of Health and Human Services. www.nia.nih.gov

The Alzheimer's Association states that "the disease will cost the nation $259 billion in 2017 alone."

As Jean's condition worsened Allen made the decision to hire a home healthcare agency to assist with Jean's care and give Allen a much needed break. According to the Alzheimer's Association, "Alzheimer's takes a devastating toll on caregivers. Compared with caregivers of people without dementia, twice as many caregivers of those with dementia indicate substantial emotional, financial and physical difficulties."

Jean with her caregiver, Sarah, from the agency Allen hired. They spend their days listening to music, dancing and eating lemon cookies, Jean's favorite. Jean is a huge Josh Groban fan. She also enjoys country, classical and bluegrass. Allen and Jean were always involved in the music at the church they went to.

Up until Allen brought in outside caregivers he spent 24 hours a day, seven days a week for seven years caring for Jean alone, which has taken a toll on his health, finances and emotional state.

Allen holding a football manufactured at the AMF Voit Rubber Company, in Santa Ana, CA, where he and Jean first met in 1964. Allen showed his extensive collection of race cars collected over the years as he and Jean travelled to races across the country as a hobby.

Allen and Jean had their first date on New Years Eve in 1964 shortly after meeting at work. They were married a few years after and have been together ever since. Allen is living the "In sickness and in health, until death do us part" portion of his vows. Jean was diagnosed with Alzheimer's nine years ago and taken care of solely by Allen for the first seven of those nine years.

Allen Ray Williams and Mary Jean Williams starting their day as Allen ties Jean's shoes after bathing, dressing and feeding her earlier in the morning. They sometimes start the day as early as 2 a.m. depending on the time Jean wakes up, and end the day sometimes as late as 11 p.m. depending on what time Jean falls asleep at night.

In less than two years Allen has already spent approximately $36,000, including $8,400 for a four week respite stay at a local nursing home, for Jean's care.

"We were always conservative," Allen said.

These expenses have all been paid out of pocket since Allen and Jean do not have any health insurance.

According to the National Association of Social Workers, "One-fourth of older adults have no supplemental insurance coverage for their health care needs."

"What am I going to do if I run out of money? I don't know, I'm going to go broke," Allen said. "I can go another two years and then I'm in trouble."

Jean sitting and holding her babydoll. Her doll is one thing that calms her and puts a smile on her face. Allen shared that Jean always loved children.

Starting in 1987 Allen worked as a construction superintendent for CATO, a clothing store company, traveling across the country building CATO stores. Jean signed on, and traveled with Allen in their travel trailer helping her husband build each store.

Allen attributes their savings, investments and stocks in CATO for him being able to afford Jean's healthcare costs thus far.

He and Jean spent a year volunteering at a nursing home in Greenback, TN while living there after transferring for a job.

The time spent with the nursing home residents is what Allen said prepared him to deal with his wife's condition. He spoke briefly of their time volunteering saying he had a realization at that time.

"No one comes to see them," said Allen.

The house Allen and Jean purchased 16 years ago as their forever house. Keeping up with maintenance of the property is especially challenging considering his wife's condition.

Allen thought of downsizing, but opted to stay in their home to keep Jean's surroundings familiar after consulting his family doctor. Keeping up with household chores and finances presents a challenge for Allen. Having the home health caregivers in the home three days a week helps, but doesn't ease the strain of worry.

"What if I get sick? Who will care for Jean? I don't know," Allen said.

The view from the William's front door looking out into the front yard. This door, along with all other doors, usually stays locked at all times to keep Jean from getting out and wandering into the busy roadway they live on.

Aside from the financial challenges of taking care of a loved one with Alzheimer's, the level of care required makes it difficult for a caregiver to do anything but care for their loved one. People living with Alzheimer's must be watched 24 hours a day and seven days a week. When asked what one of the biggest challenges was Allen stated, "Trying to get everything done that needs done. I don't have enough time."

Allen takes Jean to the grocery store to buy groceries. He must take her with him everywhere he goes since she can not be left alone for her own safety.
Allen has had to make modifications all over his home to accommodate Jean's condition. He has added extra locks doors and handrails on stairways, as well as adding padding on corners of furniture.

Allen takes care of all household chores, including cleaning, cooking, laundry, yard work and maintaining their camper trailer and pool. This alone is a full time job, but Allen has two full time jobs, the house and Jean. Home health caregivers are in the home three days a week for eight hours a day which does help, but there is still a large burden on Allen.

Allen preparing to cook Jean's dinners for the next week. He preps individual portions so the caregivers can just reheat them when they feed Jean. He spends about 2-3 hours a day in the kitchen cooking and cleaning while caring for Jean.

He has trouble getting enough sleep at night, because he must wake up to check on Jean. He has been woken to the sound of glass shattering as Jean had accidentally knocked over lamps and things off the walls. He now has a nightly routine of going around the house and taking certain items down off the walls and placing items such as his computer and lamps on the floor.

Allen spoke about the difficulties of trying to handle everything he has on his plate. He explained how before he had in-home care for Jean he would wait till Jean was asleep and then rush out to mow the yard, but stop to check in every 15 minutes.

"How do I even mow the yard," Allen said.

Allen mowing his 2 acre yard while Jean's caregiver is in their home. He is thankful that he now has peace of mind while taking care of outdoor household chores.

He is now able to take care of these kinds of tasks while the home health caregivers are in the home. This is the ultimate reason for bringing in outside care, just to give him a break to get away or do needed chores.

Allen and Jean headed to town to run some errands in Lebanon, Ohio where they live.

Allen also takes care of scheduling all of Jean's appointments. Whether he is driving her to the beauty shop, doctor or simply going to the grocery store he has a sense of fear come over him when they leave the house. He told how when Jean first began to experience symptoms from the disease she would try to escape out of the car when they went somewhere.

"She would open the door while we were going down the road. I mean she was strapped in, but it still scared me. I would have to pull off on the side of the road every time," Allen said.

The most difficult part of someone dealing with a loved one suffering from Alzheimer's disease is the day that they no longer remember who you are. Allen shared that Jean doesn't always know who he is, but that he can tell that she knows he is supposed to be there. He said what he misses most is sharing and talking.

Allen shows Jean their wedding picture, and she doesn't seem to recognize him.

Allen and Jean's life was forever changed when she was diagnosed with Alzheimer's in 2008. Allen shared that they had plans to take their travel trailer across the country and see what they didn't get to see in their earlier years.

Jean studies their wedding picture while sitting with Allen. You can see the padding he has put on the furniture to help protect jean from bruises of skin tears.

" My biggest disappointment is that you work and plan what you will do when you retire," Allen said. "Our plans were to travel and see the rest of the country."

As Jean realizes who Allen is she smiles.

"She is my wife, my best friend, my companion," Allen said. "and you lose all of that, but she is still Jean."

Credits:

Matt Sells

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