“I have always been very close to my mum. Watching the center of our family shrivel into a shadow of her former self has been torturous. Hallucinations, incontinence, seizures, and loss of language are all part of Mum’s life now. As a family member, Alzheimer’s Disease makes you feel so out of control.”
Love hurts, especially when a family member is coping with an Alzheimer’s or dementia diagnosis. When you learn about the condition and its devastating impact on family life, as Amanda Franks did above, you go through an extremely challenging process.
The Stages of Grieving for a Family Member with Dementia & Alzheimer’s
It may take time for the diagnosis and reality to set it, and the experience can also cause strong, conflicting emotions in family members. Additionally, it can initiate a process of grieving, mourning the loss of the person you knew and for the life you thought you were going to have together.
Guilt is another common feeling. You might feel guilty for losing your temper when strange behaviors started surfacing at the beginning of the disease. You may also feel guilty because you can no longer care for your loved one and must seek the help of a skilled nursing facility specializing in memory care.
You might also feel anger because the situation is so unfair and anxiety when trying to convey what is happening to younger children, and even teenagers, who may have trouble coping with the situation. Finally, there’s the feeling of helplessness in trying to deal with a progressive condition that has no cure.
“Alzheimer’s and dementia affect everyone it comes in contact with, especially closest family members,” says Adriann Ruffin, Director of Nursing at Pathways Memory Care at Villa Toscana, in Houston, Texas. “Families facing this life-changing diagnosis should help each other – and their loved one – finding the sources of support they need and sharing information.”
The Help You Need in a Memory Care Facility
As with all Stonegate Senior Living-supported properties, the staff at Pathways Memory Care know how to help families navigate the troubled waters to find the support they need. They understand that dealing with the progressive disease can become overwhelming.
Take, for example, Dawn Revere, who gave up her job to look after her husband, who contracted early-onset Alzheimer’s, at age 50, and finally succumbed four years later. “This experience caused me to be an emotional wreck, but I knew I couldn’t fall apart,” Dawn says in her testimony on the Alzheimer’s Prevention Registry. “I was his rock. I did everything I could to protect him and give him the best care possible.”
Providing care to a loved one with dementia can become too much for many people. Statistics show that seniors with dementia are three times more likely to be hospitalized or go to a specialized senior care facility than those without. They wind up requiring the kinds of professional long- term support and services just not possible for most untrained family members to provide.
At Pathways Memory Care, they rely on Warchol Best-Abilities Care Model to ensure a “loved one is able to live to his or her emotional, spiritual, and functional potential at every stage of dementia.” As with all Stonegate memory care facilities, it provides special programs to slow down memory loss and enhance quality of life for every stage of the resident’s experience of Alzheimer’s or dementia.
Addressing Family Conflicts Constructively
As your family copes with a loved one’s Alzheimer’s or dementia diagnosis, it’s important to remember the stress of the situation can bring out strong emotions and cause family conflicts (or magnify existing ones) about how to move forward constructively.
The Alzheimer’s Association points out that family members may respond to the stressful situation in different ways. While you may not agree with someone’s reaction, it’s important to listen to what they have to say carefully, so you can understand and respect their point of view.
Keep in mind also that the conflicts can be big ones. For example, one relative may be in denial about the situation. Another could feel resentment because they live closer to the afflicted family member and may be saddled with more responsibility as far as care. It’s important to listen to other family members’ concerns without judgment, so you can learn to work together.
Of course, you cannot just make such differences of opinion disappear. Keeping lines of communication open, scheduling regular meetings to discuss the situation and dividing the caregiving responsibilities will help everyone to stay focused and play a part in helping, according to their capabilities.
You must also be aware that the stress of the situation could require further help. As the disease progresses, pressures can mount for family members when difficult decisions need to be made. It can be useful to talk to other people who have faced similar circumstances, through a local support group or an online one.
“If tensions and disagreements are ongoing, you may want to seek help from a trusted third party, such as a spiritual leader, mediator or counselor,” advises the Alzheimer’s Association. “Sometimes, an outside perspective can help everyone take a step back and work through the difficult issues.”
Dealing with the Costs of Care
Often, the greatest pressures put on families are associated with care costs related to Alzheimer’s and dementia. WebMD points out that in 2017 “the lifetime cost of care for a person with Alzheimer’s stood at $329,360. Families bear 70 percent of that cost through out-of-pocket expenses and the value of unpaid care.”
Statistics also show that dementia caregivers spend nearly twice as much out-of-pocket ($10,697) as other caregivers ($5,758), and more than 40 percent of these have a household income of $50,000 a year or less.
- Ongoing medical treatment;
- Treatment or medical equipment for other medical conditions;
- Prescription drugs;
- Personal care supplies;
- Safety-related expenses;
- Adult day care services;
- In-home care services; and
- Full-time residential care services.
In 2019, the median cost for a non-medical home-care aid is $22 per hour. Assisted living facilities can run up yearly bills of $48,000 per year. A semi-private room in a nursing home can cost $89,297 annually, and a private one, $100,375.
To deal with these kind of pressures in caring for an afflicted relative, families have to look to a number of ways to finance care. These can include:
- Medicare benefits;
- Medicaid & HCBS waivers;
- State non-Medicaid assistance;
- Respite care;
- Non-profits and foundation assistance;
- Assistance for veterans;
- Reverse mortgages;
- Life insurance conversions;
- Alzheimer’s care loans;
- Assistance for medications;
- Personal savings; and
- Low-cost community services.
To navigate the kind of resources that might be available to help you finance the care of your family member, two good places to start are Paying for Senior Care, created by the American Elder Care Research Organization, and the Alzheimer’s Association’s Paying for Care.
If family members cannot agree on who should pay for the care, and how, then it might be worth turning to a professional elder mediator to find a resolution. The AARP provides an excellent guide on “How to Choose an Elder Mediator,” including ways to source one.
While love for a person with Alzheimer’s or dementia may hurt, getting them the right care can help ease the pain. Ultimately the best care for a person with Alzheimer’s or other form of dementia is not to concentrate on the loss ahead but what they have left today. By not focusing on the disease and instead focusing on the person and their remaining potential, the experience for the family can be easier to navigate.