More than 3 million cases of Alzheimer’s disease are diagnosed in the US each year. This diagnosis doesn’t just affect the patient but also the family who will care for their loved ones. Like most struggles in life, however, you don’t have to go it alone.
When Sue Amash and her husband brought his father to Houston in order to care for him, they knew that he had some sort of dementia. Although there is no definitive test for Alzheimer’s, Amash got a diagnosis for her father-in-law from his doctor after an evaluation, which included the Saint Louis University Mental Status Examination.
Amash said it was difficult because she and her husband were getting pushback from other relatives but that it was important to have a diagnosis in order to get him the help that he needed.
“We don’t do a good job about preparing for death,” said Amash. “Of managing the systems and resources that are out there. You’re sort of hamstrung, both emotionally and physically. But it doesn’t have to be perfect. You have to give yourself a break.”
Amash’s father-in-law lived with her and her husband for three years and then went to an assisted living facility for his last two years of life. Amash said that two of her biggest resources were the Alzheimer’s Association where she and her husband attended support groups and Houston Hospice who came to visit her father-in-law regularly to monitor his medication once going to the doctor was harder for him.
“It was a good thing that we engaged them sooner,” said Amash. “It made it easier later on.”
For those with a loved one whose memory loss is disrupting their daily life, the Alzheimer’s Association has information about warning Signs of Alzheimer’s disease. Alzheimer’s Association Support Group Specialist Kathy Spetter said that if you or a loved one is experiencing any of the signs, a visit to the doctor is in order.
“Early diagnosis gives you a chance to seek treatment and plan for your future,” said Spetter.
“You can learn how Alzheimer’s is diagnosed, what questions you should ask your physician, and the importance of receiving an early diagnosis,” said Spetter.
An Alzheimer’s diagnosis is a hard thing and Spetter counsels a time to grieve but also a time to build a care team. Making legal and financial plans at the beginning of a diagnosis will make things less stressful down the road.
“A care team is a group of people who you will partner with and rely on to provide you help, care, and support and connection throughout the course of the disease,” said Spetter.
Spetter stresses that there is no one-size fits all formula when it comes to Alzheimer’s care.
“Needs change at different stages of the disease and each family’s situation is unique,” she said. “Deciding on care can be a tough decision.”
At every step of the way, the Alzheimer’s Association has resources that can help families, such as Individualized consultation sessions to assist families with creating a care plan for their loved one; access to resources and support through their 24 hour HELPline (800-272-3900); Peer-led support groups for caregivers of persons with Alzheimer’s disease or a related dementia; Social engagement programs for persons with mild memory loss and their care partners; and Educational lectures, seminars, and conferences for community members and professionals.
“As a caregiver, you may find yourself with so many responsibilities that you neglect taking good care of yourself,” said Spetter. “The best thing you can do for the person you are caring for is to stay physically and emotionally strong. Being a caregiver can feel isolating. Caregivers should know that they do not have to do this alone. They can connect with a group of people walking through similar experiences for support, problem solving, and resources by participating in a caregiver support group.”
For lawyer Christina Lesher, helping her mother care for her grandfather through the disease – including the financial challenges – led her to become an elder care attorney.
“Talking about money is difficult with family, but you need to be able to step in when your loved one can’t do it anymore,” said Lesher. “A good elder law attorney can help you figure out what financial resources are available to you besides Medicare, like Medicaid and Veteran’s benefits. There are so many families walking through this and help out there if you know where to look.”
Other helpful online tools:
* Community Resource Finder: is a useful tool to find resources near you such as: Education Programs, Support Groups, Physicians, Elder Law Attorney, In-home Care, Adult Day Programs, Facilities, etc. You can find our website here: http://www.communityresourcefinder.org
* AlzConnected, which is an online support group center
* AlzNavigator, a service that can help give you an action plan based on your needs
* http://training.alz.org/, The Association offers a number of free Alzheimer’s and dementia courses available online, 24 hours a day.
* Medic Alert Safe Return is a 24-hour nationwide emergency response service for individuals with Alzheimer’s or a related dementia
* The National Academy of Elder Law Attorneys (NAELA): https://www.NAELA.org/
* For books related to Alzheimer’s, visit https://alz.org/help-support/resources/virtual_library