When a person is diagnosed with Alzheimer’s Disease or dementia, it is a life changing experience for the person as well as for the family and friends who become caregivers. Since Alzheimer’s Disease is on the rise, the number of people serving as caregivers is also increasing. The Alzheimer’s Association reports that nearly 5.4 million people are struggling with Alzheimer’s Disease. This progressive form of dementia causes problems with memory, thinking and behavior and is the sixth leading cause of death in the United States.
Vicki Rostos Giba is one of the many people who have stepped up to care for a family member with Alzheimer’s Disease. Giba, 53, spent six years caring for her father with Alzheimer’s Disease until he recently passed away at the age of 89. She lives in Aurora but cared for her father in his Chicago home and frequently had to be away from her own family.
“The hardest part is that the disease gets worse and you lose more of the person every day,” she explains. “It’s not about you. It becomes all about the person you are caring for as you try to find things they can connect with. My dad loved watching Westerns and so we watched Westerns together for hours.”
The Alzheimer’s Association estimates that in 2014 alone, people provided 18 billion hours of unpaid care to those with Alzheimer’s Disease and other dementia. About two-thirds of these caregivers were women and many were “sandwich generation caregivers,” the term given to middle-aged people who are caring for dependent children and aging parents at the same time.
Joining the ranks
There is no one best way to care for someone with Alzheimer’s Disease since its symptoms and progression are different for every person. But there are a few general tips for getting started. To begin, spend time getting familiar with Alzheimer’s Disease. The Alzheimer’s Association website has many tools to help including a free six week class entitled “Savvy Caregiver” that helps caregivers develop the skills and confidence to give the best care possible. Here are some tips from caregiver manuals.
Practice patience
Things will take longer than usual when caring for a person with Alzheimer’s Disease. Trying to hurry the person will most likely cause more confusion. Establishing a schedule that is followed daily will make things go more smoothly. Try to reduce distractions like television when doing activities like eating so it is easier to focus on the task at hand. Come up with ways to allow the person to be involved in everyday activities like laying out clothing in the order it should be put on. Allow them choices but limit them, so instead of saying “what would you like for lunch?,” ask “would you like a ham or turkey sandwich for lunch?”
“You need to reassure the person because they are worried,” says Giba. “One minute, my dad knew exactly what was going on and the next minute, he was lost. Sometimes it is better just to agree with them. My dad is from Greece and when I would come home from work, he would ask if I took the bus or the donkey. Sometimes, I told him I took the donkey because I knew he would like that. I could see that sometimes he couldn’t communicate what he was feeling but I knew he could hear me, even if he couldn’t respond.”
Be flexible
As the disease progresses, the caregiver will need to come up with creative ways to get through the day. For example, if the person wants to wear the same shirt every day, consider buying several identical shirts and rotate them. Allow time for the person to finish tasks and thoughts instead of doing it for them. Don’t be condescending when things go wrong. Giba says her father often tried to answer the phone using the television remote. She would simply help him get to the phone without trying to correct him. She says it is important to help the person maintain personal dignity by letting him do things on his own. Change the usual expectations and be happy that the person set the table, even it the fork is on the wrong side of the plate.
Safety is key
Take steps to protect the person you are caring for by doing things like removing scatter rugs, extension chords or other trip hazards. Lock up things that could cause harm like medicines, cleaning solutions or sharp tools. When caring for someone who smokes, make sure there is supervision to avoid mishaps with matches.
Prepare for the future
When a person is diagnosed with Alzheimer’s Disease, it is wise to have a discussion about future plans before the dementia makes this conversation impossible. Talking about long-term care options, health care costs, end of life issues and naming a power of attorney may not be pleasant but having plans in place make it easier to make decisions later.
Care of the caregiver
Caring for someone with Alzheimer’s Disease can be overwhelming since it is such an unpredictable disease. As a caregiver, it is important to schedule a break even it it is just a few hours away at a time. The Alzheimer’s Association website has several tools to help including a caregiver’s stress check to help determine if the care is becoming too overwhelming. There is also a Care Team Calendar where others can volunteer to help a specific caregiver by preparing meals, running errands or giving respite care. There are also adult day care centers in many communities, which can be found at the website. Talking with others about being a caregiver through a support group is also beneficial. Other caregivers understand the challenges and can often offer suggestions. Support group options and other helpful information can all be found at alz.org/illinois.
