PUBLISHED: FORGETTING TO REMEMBER

FORGETTING TO REMEMBER

Alzheimer's Disease

by India Holland

VIDEO--A day in the life of MARY ALICE RUSH-Alzheimer's patient-by India Holland

Mary Alice Rush, 93, was diagnosed with the early stages of Alzheimer’s at age 89.  She is cared for primarily by her daughter, Angela Tucker, who lives with Rush in Cedar Square, North Carolina.  Tucker does share in caring for her mother with her siblings.  When asked about what happened to make her think her mother may have Alzheimer’s Tucker said, “she was forgetting things, feeling lost.  She didn’t know where she was in her own bedroom.  She also started burning food, she is an excellent cook. That was a big sign.”   

Tucker recalls Rush as once being a vibrant, talkative, funny person.  Now she is a little quieter. She doesn’t like to go out very much. She doesn’t like crowds.  This behavior is typical with the onset of Alzheimer’s disease based on the Ten Signs of Alzheimer’s from the Alzheimer’s Association.  Rush is showing some of the signs of Alzheimer’s.  Nancy Rush,  Rush’s daughter, says there are changes in her personality and mood sometimes.

 “I know I can’t joke and play with her like I use to. It might upset her. I feel sad. I miss that about her.” 

Doreen Miles, another of Rush’s daughters, said she was not sure how she feels about the diagnosis. “She knows who I am right now. I haven’t thought about how I feel about it.  She is just mom to me.”

Tucker mentioned she has withdrawn from social activities. “We use to go to the grocery store, or Dollar General, that was our thing.  She doesn’t like to go out in crowds anymore.”  Another sign is the patient will get confused with time and places. Tucker added, “She does get her times mixed up. She may get up between midnight and 3 a.m. and thinks it’s time to get up for the day. I have to try to get her back to bed.  I sleep very lightly now.”

As a caregiver it also can be challenging.  The Alzheimer’s Foundation of America (AFA) determined that live-in caregivers sometimes feel guilty about how they feel regarding their life and the impact this new role has had on them personally.

Julie Reynolds, a consultant for the AFA, says “It is ok for live-in caregivers to want to take some time for them. They need to have some down time to separate from the normal day-to-day life of caring for someone else and take a moment for them.”

“It is a challenge for the patient but it is even more challenging for the caregiver. What would you do if your parent had dementia... and the stress and strain of caregiving was becoming too much? What if you had a case of caregiver burn-out?  What if you needed some help in the form of a break?  Caregivers often feel that they have to do it all,” Reynolds added. “They feel that if they don’t, they’re giving up on their loved one.  It’s only natural to feel that way.”

Tucker relies on a Medicare counselor to share her feelings with.  “She allows me to vent,” says Tucker. “ It’s helpful. I go through things on a daily basis and I need to talk to someone who understands.”

Statistics from the National Institute of Health (NIH) determined in 2006, there were 26.6 million sufferers worldwide. In 2010 experts from NIH reported approximately as many as 5.1 million Americans have Alzheimer’s disease and the number of people with Alzheimer’s doubles in every five-year intervals.  Alzheimer's is predicted to affect one in 85 people globally by 2050 according to the Alzheimer’s Disease Education and Referral Center.  Since the disease is different for each person, predicting how it will affect the person is difficult.  Neurosurgeon and Nutritionist, Russell Black, M.D., from the Alzheimer’s Disease Education and Referral Center reported on average, the life expectancy following diagnosis is approximately seven years and that fewer than three percent of Alzheimer’s patients live more than 14 years.  

As of 2012, more than 1,000 clinical trials have been or are being conducted to find ways to treat the disease, years after diagnosis according to the Alzheimer’s Foundation of America (AFA). 

 “The causes and progression of Alzheimer's disease are not well understood,” explains Reynolds.    “Research indicates that the disease is associated with plaques and tangles in the brain. Current treatments only help with the symptoms of the disease…slows them down.  There are no available treatments that stop or reverse the progression of the disease.  Alzheimer’s disease is the most common cause of dementia among older people.”

Alzheimer's is a crippling disease for a person and their family.  It robs the patient of their memory and the family of the loved one and peace of mind.  That is why a family who has been impacted by this illness should consult an elder attorney.    Dennis J. Toman, J.D. of The Elderlaw Firm in Greensboro, N.C. is an advocate for the vict 3

ims of Alzheimer’s.

Toman is an elder law attorney.

 According to Toman and aplaceformom.org, a residential living facility for patients with Alzheimer’s, suggest families of Alzheimer’s patients should consider hiring an elder law attorney who handles issues involving power of attorney, wills and trust.

 “Alzheimer's is a cruel disease...and because it can turn your life upside down for years...sometimes it's called "The Long Goodbye," said Sheila McDonald, a paralegal for the Toman Elder Law Firm.  “We provide options to help families in our area cope with this awful disease.  The Alzheimer's Resource Kit is a resource that we offer for free that will help families plan stress-free care for them and their loved one. Plus, it will help them discover ways to pay for their care without going broke.”

There are many legal and financial issues that can develop when a family member has Alzheimer’s.  According to McDonald it is crucial that there be a financial and legal plan established for the loved one.  Families must have clearly written legal documents that outline everyone’s wishes. The documents should authorize another person to make health care and financial decisions, including plans for long-term care. If the Alzheimer’s patient has the legal capacity -- the level of mental functioning necessary to sign official documents -- he or she should participate in legal planning.

She discussed some steps a family should take when looking at the financial impact of Alzheimer’s. The Alzheimer’s resource Kit their law firm offers for free gives steps families need to take to build protections around their loved ones so they can achieve the goal of never being out of money or out of options. She says benefits are available to families to help pay for the cost of in-home, assisted living, or nursing home care for years. 

 “Honest, legal strategies are right for the family and they can avoid being unnecessarily impoverished,” said McDonald.  “Some of the valuable resources available to help seniors are right here in our community.” 

“Alzheimer’s is a disease that impacts an entire family,” says McDonald. “Acclimate the whole family to the disease.    A prepared family is a happy family.”