Editor’s note: This is the third in a series about the toll of Alzheimer’s disease in Rim Country, based on the firsthand accounts of those affected. This story touches on help available through the Arizona Long Term Care System (ALTCS), part of the Arizona Health Care Cost Containment System (AHCCCS). ALTCS provides long-term care for those 65 or older, blind or disabled who need nursing home-level care. Many ALTCS participants live in their own homes or an assisted living facility and receive needed in-home services.
by Don LaFoon, Special to the Roundup
Reflecting over the past two years, long-term medical insurance would have reduced the financial stress I confronted after my wife, Janet, was diagnosed with Alzheimer’s. Unfortunately, applying for Arizona’s long-term care programs after Janet was diagnosed with Alzheimer’s took a year-and-a-half before we finally received benefits.
Janet and I met on a blind date after I got out of the Army. We went on a picnic in a park and I was impressed that she worked in a credit department at a bank, she was smart and on top of it. There were no sparks on our first date, so I did not call her for a while. However, when a friend returned home from Germany, he and his wife wanted to go out on a double date, so I called Janet and we went out to a movie in October 1953. I didn’t call her again until December 1953, when we went out to another movie. It was at this time we began a relationship, dated one another exclusively, got engaged and then married in September 1954.
Janet continued to work at the bank until our first child, a daughter, was born in 1956 and then Janet became a full-time homemaker. We had two more children, boys, over the next four years. For enjoyment, we took many family camping vacations in Iowa.
Janet was saved when she was 10 years old. She had a friend she met going to Sunday school one day, they clicked and skipped hand in hand to school. Her friend loved to read the Bible and Janet learned from her. Janet loved to read the Bible — it is very well marked up.
Janet had lung problems so her doctor told her that moving to a drier climate, like Tucson, would help her breathing. So we moved to Tucson and lived there until 1990 when I retired to Payson. We decided we were going to discover Arizona so we bought a travel trailer and began to travel.
Janet loved to collect things. One of her collections was old Mickey Mouse artifacts. We traveled to Show Low one time and shopped in antique stores. There was a 1930s dresser she really liked so she traded her Mickey Mouse items for the dresser.
In 2011, I noticed some changes in Janet. She was an incredible cook and wonderful with our finances throughout our marriage. However, one day I noticed Janet sitting at the dining room table just staring at the checkbook, not saying anything. Then her cooking became very bad, while cooking a meal, she would get distracted, sit in the living room and read, completely forgetting about the meal on the stove.
The Alzheimer’s Caregivers Support Group invites caregivers, families, service providers and members of the community to attend any or all of the following:
• First and third Wednesdays of the month from 1:30 p.m. to 3 p.m. at the Senior Center.
• Second and fourth Thursdays of the month from 6 p.m. to 7 p.m. at the Senior Center.
For more details, call Shirley, (602) 697-4870 or Mary, (928) 474-3560. The Payson Senior Center is located at 514 W. Main St.
In 2012, Janet began to give me trouble. Some days were good and others were bad. On the bad days she did not want me around and would tell me she did not like me. The hardest emotional day was in April, the day before her birthday. I went to Walmart and bought her a double chocolate frosting cake, ice cream and a meal. She destroyed it all. She took it out to the back yard, threw it all on the ground, kicked it, then she took all of my jewelry and threw it all over the back yard. I was surprised by my response, I got a basket and gave it to her and told her to collect all the jewelry into the basket. A while later, she came back and said she could not find it. But later, I found it buried throughout the yard. This was a very trying time.
In July, I found a doctor to look at Janet and by his analysis he diagnosed her with early stage dementia.
In the summer of 2012, she started telling me she was leaving me and I could not stop her. Janet began wandering regularly; there was one week that I met eight different police officers, who had found Janet wandering in the late evening or early morning. She said several times she was going home. I can only assume that meant Iowa.
Early one morning, she left out the back door without me knowing. I heard pounding on the side of the house so I went to check it out. She had fallen and was sitting on the bottom step. She seemed to be OK, so I took her into the house, cleaned her up, put new clothes on her and put her in her rocking chair. She was quiet all day. The next morning, she yelled from the bathroom that she could not get up, so I went in and realized something was wrong. I called 911 and when the paramedics arrived, they determined she had a broken hip.
When Janet arrived at the emergency room, it was determined she needed a hip replacement. We did not have medical insurance, so Crystal from Payson Care Center expedited insurance through AHCCCS for us. To this day, I am very grateful for her kindness, gentleness and genuine care about our situation. My personal out-of-pocket expense was approximately $8,300 out of a medical bill far greater.
On March 6, 2013, I had spent the morning with her. She did not open her eyes and her breathing was labored.
The Alzheimer’s Caregiver Support Group was being held in the afternoon that day, so I decided to go for support. I decided to only stay a few moments at the meeting and returned to Janet’s side. At 3 p.m., at the time the support group ended, Janet took four fast breaths and passed.
Just a week before she had said to a nurse “I want you to meet my husband!” She had been very aware and loving at that time, one would never guess she was failing from complications from dementia.
As a good wife, Janet did not drink, smoke, horse around and would go to church regularly. She took good care of our family life and because of her I was saved at the age of 39. I was not surprised when the doctor gave the diagnosis of dementia. I knew long before that something was wrong.
Her mother, aunts, grandmother and sister all passed from Alzheimer’s.
I had to watch Janet 24/7, I was tired and attempted to get in-home help. Sometimes they would show up, but most times I was left to manage her. I would bathe her, had to get her to the dinner table and I did some dressing of her. I became the housekeeper, cook, finance manager, home repairman — the things we did as a partnership throughout our marriage.
I have asked myself many times “could I have done more?” I believe I did the best I could; the disease overwhelms you. She began to change from a loving wife to moments of hatefulness. You do what you can, but it is a hopeless battle.
To find peace through this, I need to keep busy or else my memories will flow. You can’t brace for it, when the memories come, I have to catch myself and say I am here now so I must make the best of it. I volunteer every day at the Payson Senior Center and I continue to attend the Alzheimer’s Caregiver Support Group. I decided to be an advocate for stopping this disease, so I became certified as a speaker’s bureau member for the Alzheimer’s Association. The biggest take away I have is that if you do not have long-term care, get it. It will help bring peace and comfort to you and your loved one with the disease.
Plan ahead for long-term care
As we age, many of us will face a time when we can no longer care for ourselves. We will need to depend on the help of others. This is called long-term care, and it can range from simple assistance in the home to skilled care in a residential facility.
Long-term care can be very expensive — and the costs can get even higher when a person has a serious illness like Alzheimer’s disease. Individuals and their families typically pay for services such as respite, home health and nursing home care out of their own pocket.
To reduce the financial stress that can come from paying for long-term care requires advance planning. This checklist will help you anticipate the costs of long-term care and how to pay for them.
Gather financial & legal documents
• Medical and durable powers of attorney
• Bank and brokerage accounts
• Deeds, mortgage papers or ownership statements
• Pension and other retirement benefit summaries
• Social Security payment information
• Stock and bond certificates
• Monthly or outstanding bills
• Insurance policies
Explore financial resources
• Insurance — includes government insurance programs such as Medicare and Medigap; disability insurance from an employer-paid plan or personal policy; group employee plan or retiree medical coverage; life insurance and long-term care insurance. After symptoms of Alzheimer’s appear, it is usually no longer possible to purchase many types of insurance.
• Retirement benefits.
• Personal savings and assets.
• Government assistance — includes Social Security Disability Income (SSDI) for workers under age 65; Supplemental Security Income (SSI); Medicaid; veterans’ benefits; and tax deductions and credits, such as the Household and Dependent Care Credit.
• Community support, including respite care, support groups, transportation and meal delivery.
Review your own finances
• Review savings, investments and insurance plans.
• Assess the need to increase life insurance or disability insurance.
• Caregivers may want to consider long-term care insurance, which covers most costs for nursing home, private home, assisted living or adult day center.
• If the person with dementia is dependent under the tax rules, caregivers may be able to use their own workplace flexible spending account to cover costs.
The Alzheimer’s Association can also offer support at 1-800-272-3900.
TDD Access 312-335-8882 or Web site www.alz.org, e-mail firstname.lastname@example.org.