The Crowsons found out quickly that Frederick County offers a significant number of services for Alzheimer’s patients and their families.

Susan Crowson is a baby boomer, whose father Warner Howe, 90, was formally diagnosed with the disease a year ago following the death of Susan’s mother.

The Howes lived in Memphis, Tenn., but Susan, her husband, Nat, and their teenage daughter, Christine, decided as a family to bring Susan’s “Pop” to their Maryland home.

This meant help. And back in Frederick, they found it.

Making Connections

Warner had not been diagnosed with Alzheimer’s before his daughter came home for the holidays in Memphis in December 2007.

Susan’s parents were “fiercely independent” explains Nat. They had excused and covered over Warner’s declining memory loss, according to the Crowsons.

Susan says that the night her mother died was when she realized her father wasn’t the same man she once knew.

“We were in my parents’ apartment, two adults saying goodnight and separating to get ready for bed,” says Susan. “I realized that my father didn’t understand what to do. He was asking me, ‘Where are my pajamas?’ He didn’t believe that anything in the apartment – in the closets – belonged to him.

“I was shocked! He was lost inside of his own home,” says Susan.

To try and find answers, Susan went online. While researching, she learned that a medication her father was prescribed for “light memory issues” was a drug often given to Alzheimer’s patients.

Warner’s doctor affirmed Susan’s diagnosis.

Susan began thorough Internet research on the disease, as well as on Frederick’s Alzheimer’s resources.

“The Department of Aging offered the most practical help,” says Susan. “As I spilled my story to them, they grabbed on and referred me to the Alzheimer’s Association Family Care Coordination (FCC) program.”

Nat Crowson simply calls the FCC program “Peg,” referring to FCC’s coordinator Peg Stahler.

“This program has been the single, most-powerful tool in what we have been able to accomplish as a family living with Alzheimer’s,” says Susan.

Personal Service

The FCC’s program brings registered nurses together with families in need of support for “home visits, patient assessments, recommendation of local services and assistance in completing a plan for ongoing help and referrals to community agencies,” says Cathy Hanson, program coordinator of the Alzheimer’s Association western Maryland office based in Frederick.

Within a month of discovering the FCC program, Peg and Susan met. Following Peg’s assessment of Warner’s disease, the family came together for a meeting with Peg.

According to Nat, Peg was very receptive of all of the Crowsons’ questions, “painting a picture” of Alzheimer’s and how things would most likely progress for Warner.

From the beginning of the journey, Peg helped the Crowsons on every level. Nat explains that before his mother-in-law passed away, Susan came to him and asked, “Can Pop come and live with us rather than be alone?” With Susan making the decision to be her father’s primary caregiver, the family began looking for a new home that would accommodate their needs alongside Warner’s. Peg went over their plans with them, even offering to help them look at houses.

Nat explains that Peg has helped “put words in our mouths,” meaning that she has encouraged them to keep conversations and statements simple and focused on the “right now.”

“With Alzheimer’s, many patients are only aware of the moment at hand, one moment at a time,” explains Susan on what she is learning about her father’s disease. “For Pop, each moment is new. Peg has specifically helped us separate what we hear and see that is my Dad versus what is his Alzheimer’s.”

Christine recalls a time of conflict with her grandfather where Peg’s advice really made a difference.

“I was with him, telling him it was time to go to bed, but he noticed that it was me and that I was younger than mom (who was usually his caretaker), so he would not listen to me,” says Christine. “It was so hard, because I want to love and respect my grandfather, but I needed him to do what I was asking him to do. Peg said afterwards, ‘Don’t take it personally.’ That has really stuck with me. That was his illness talking.”

The Continuing Journey

Peg Stahler of the Alzheimer’s Association FCC program has “always had our best in mind” according to the Crowsons.

“We call her and she helps us figure out how to choose what is best for the family while still being good providers for my dad,” explains Susan.

At one point this year, Warner was active in Daybreak, a local adult day services program. He was also attending church with the whole family on Sundays.

“Although these activities were good and appropriate, it became a task to get Pop to go,” explains Susan. “Peg helped us understand that sometimes the best choice is to choose for him to simply not participate in some things.”

Susan says that her father works best with “prompting,” since he is very task and time focused.

Nat explains, “We have a good routine set up for Warner with time structures and written notes to confirm when things will happen during the day.”

From the beginning, Peg explained that it would be important for each member of the family to have time on their own. One thing the Crowsons chose to do was move in to “their” home before moving Susan’s father in with them. The house includes a family room on the lower level where Susan, Nat and Christine have movie nights each week without Warner. Nat and Susan try and have times out together, even recently celebrating their 25th wedding anniversary.

The Crowsons were able to set up Warner’s space to look like his former apartment, even renting furniture for the initial move and then replacing it discreetly with his own things once they arrived in Maryland.

Nat says they go out with Warner for drives on nice days, as well as spend many hours on the back deck watching the flight paths of airplanes over their house.

“We discovered that Pop can’t do anything for pleasure, most things have to become about helping me out with something – a task,” explains Susan. For instance, she’ll leave small, 30-piece puzzles out in Warner’s space, then thank him for helping her put them back together.

“Pop helps me fill his pill box with vitamins and medications, and we do Sudoku together,” says Susan.

Warner’s Alzheimer’s demands constant attention.

“Mainly, I’m just being a companion to him,” says Christine. “We’ll sit together. I’ll be reading. He’ll be doing puzzles.”

The FCC program not only provides unlimited visits and an evaluation service for families in need, but also referrals to local supportive agencies. With recommendations from Peg, Susan has found “incredible caregivers” who help part time several days a week so that she and Christine can home school and she can work at her Internet-based job.

“Skilled and companion-care options abound in this area,” says Susan.

Susan has also taken advantage of caregiver support groups in Frederick County.

“Local facilities that include Alzheimer’s units offer support groups, some of which I’ve visited,” explains Susan. “I discovered the groups open to the public that are organized by the Department of Aging, and have continued going to these for support, even taking my dad along with me for the quarterly sessions that are open to caregivers and their patients.”

Advice for Adult Children

Susan Crowson’s parents were confident they could take care of themselves. Susan remembers her mom using the word “dementia” in a conversation once about Warner, and she and Nat had both witnessed memory problems that he was having.

“But my brother had just taken Pop to the doctor less than a month before my mother’s death and I had not heard of any significant changes,” says Susan. “It’s really important for adult children to get involved with their parents’ doctors, diagnoses – to know everything. I even interviewed all three pharmacists that filled prescriptions for my father. They were invaluable, helping me put the pieces together of what was happening with Pop and confirming the diagnosis.”

In addition to medical information, Susan says it is “paramount” to have discussions about a “most delicate but most important” topic with aging parents – finances.

“Getting access to account numbers and passwords is vital,” explains Susan. “Once health issues, especially those involving memory, set in or once someone is gone, the adult child is responsible.

“Finding people and resources who will help will have you a lot more prepared and a lot less anxious.”

Frederick County’s Dept. of Aging may be reached at 301.600.1605. The Alzheimer’s Association Family Care Coordination (FCC) program may be reached at 301.696.0315. Daybreak Adult Day Services may be reached at 301-696-0808.