When someone learns that a loved one is afflicted with Alzheimer’s disease, it can seem overwhelming.
Phyllis Bross, a retired attorney from Land O’ Lakes, understands the feeling. Her mother and aunt were both Alzheimer’s patients, and she now runs the Alzheimer’s Association/Caregiver Support Group that meets monthly at the Land O’ Lakes Branch Library, 2818 Collier Parkway.
Based on her own experiences, Bross said, generally, when a caregiver learns about the diagnosis, he or she feels lost.
“You’re worried about your future finances, and providing medication, and other kinds of support and help for your loved one.
“You know you don’t have a medical background, so you’re wondering: Should someone else be taking care of him or her? Or, should I do it because of the familiarity and the love for the person?” Bross said.
Because they don’t know what to do, most people begin sorting things out by turning to a support group for help.
“I think that’s a great place to start,” said Bross, who, in addition to her legal experience, has an undergraduate degree in social work. There are all kinds of support groups available, offered by the Alzheimer’s Association and other groups, she added.
There are definite steps that caregivers can take to help themselves, Bross added.
While the loved one is competent, it’s important to ask: “Do you believe you can trust me … to take care of you, to take care of your money/the family money, to take care of your health, to make end-of-life decisions for you?” Bross said.
If the answer is yes, the next question would be: “Can we go to an attorney, an elder law attorney and discuss you’re possibly providing me with a durable power of attorney?” Bross said.
Taking that action will simplify later decisions that will need to be made, she said.
She also suggests organizing a family meeting, so you can find out their level of support and if they can help you make decisions.
It’s also important to start asking questions early, Bross said.
For instance, when visiting an elder law attorney, ask about the possibility of your loved one qualifying for Medicaid, in case the family ends up not being able to afford all of this care that’s going to be needed.
It’s also important to become aware of long-term care facilities that may become necessary at some point.
“Look at facilities. Even if you’ve promised your loved one you won’t put them in a facility, you don’t really know how sick they’re going to get,” Bross said.
Sometimes, no matter how much a caregiver wants to keep his or her loved one at home, it becomes impossible.
In short, Bross recommends: “Try to get as much information as you can. Try to get as much support as you can. Try to get things rolling.”
Beyond needing help with feeding, bathing and other physical needs, Alzheimer’s patients sometimes become difficult to handle.
“Their temperament changes very often. They might become abusive,” Bross said.
She advises to prepare for “the worst-case scenario.”
Bross also recommends a book called, “The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer Disease, Related Dementias, and Memory Loss,” by Nancy L. Mace and Peter V. Rabins.
“People in my Alzheimer’s care group call it their Bible,” she said.
It is important to provide support to caregivers, Bross said. In addition to the physical, medical and financial challenges they encounter, there’s an emotional toll, as well, Bross said. “It’s a terrible disease.”
It’s important to provide support to help caregivers through “their sadness and depression,” Bross said.
“It’s such a hard job,” she said.
Alzheimer’s disease
Memory loss and confusion are the main symptoms of Alzheimer’s disease, but those also can be symptoms of other health conditions. A medical diagnosis is necessary to pursue appropriate treatment and to rule out other possible, sometimes reversible, conditions.
People with Alzheimer’s may experience these types of symptoms:
Cognitive: mental decline, difficulty thinking and understanding, confusion in the evening hours, delusion, disorientation, forgetfulness, making things up, mental confusion, difficulty concentrating, inability to create new memories, inability to do simple math, or inability to recognize common things
Behavioral: aggression, agitation, difficulty with self-care, irritability, meaningless repetition of own words, personality changes, restlessness, lack of restraint, or wandering and getting lost
Mood: anger, apathy, general discontent, loneliness, or mood swings
Psychological: depression, hallucination, or paranoia
Other common symptoms: inability to combine muscle movements, jumbled speech, or loss of appetite
Source: Google fact sheet
Practical tips for caregivers:
- Join a support group.
- Attend summits and seminars to learn about financial resources and research studies.
- Create a binder to keep track of medical information, financial information, legal information and questions.
- Be aware there are all sorts of potential sources for funding and research, including federal, state, county, local, universities and nonprofits.
- Ask family members how they would like to help and divvy up the tasks, accordingly. Someone may be willing to handle providing transportation, while another provides financial support. Someone else may be able to do practical chores, such as cooking, cleaning, yard work and so on.
- Observe the patient’s status and record it in a journal — to help keep track of the patient’s changing condition.
Practical ways to help caregivers:
If you’d like to help a caregiver of someone afflicted by Alzheimer’s disease, here are some ways you can help:
- Offer to give them a break by volunteering to watch over the patient, while the caregiver does shopping, goes to a hair appointment or does errands. (This may not be possible based on the patient’s condition or willingness to accept your care. If that won’t work, another option would be to provide a gift of paid-for respite care.)
- Bring over dinner or provide gift certificates for meals.
- Watch a movie at the caregiver’s house.
- Take some nice photographs of the caregiver and their loved one, so the caregiver will have them later.
- Provide emotional support, through a poem or a loving letter.
- Step in to help in practical ways, such as yard work, house work or other chores.
Source: Phyllis Bross, facilitator of the monthly Alzheimer’s support group that meets at Land O’ Lakes Branch Library
Other sources of help include:
- The Alzheimer’s Association: 24-hour hotline: (800) 272-3900; or visit ALZ.org
- The Florida Department of Elder Affairs: (800) 963-5337; or visit ElderAffairs.state.fl.us
Published November 29, 2017
