At some point, we parents start caring for our own parents, usually while we still have kids in the home. This season of life can be filled with joy and precious moments you’ll want to hold on to for the rest of your life. But, it can also be fraught with challenges, misunderstandings, fear, and change. These often arise due to sickness or disease that your loved one suffers with. Of the diseases that hit the hardest, Alzheimer’s and dementia are some of the most devastating. And we need to talk about it.
More than six million Americans are living with Alzheimer’s Disease and there are even more suffering from other types of dementia. Chances are you know someone who has been affected by this awful disease in some capacity.
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My father was diagnosed with early-onset Alzheimer’s when he was only 59 years old. He was a brilliant internal medicine physician. It was heartbreaking to see his mind deteriorate. He passed away in 2017 at the age of 65.
Although my dad died before I had children, it is important for me to talk to them about the disease. They will surely know someone with Alzheimer’s in their lifetimes — and they will also ask about the PawPaw they never met.
Talk to Children About Alzheimer’s
Alzheimer’s is a type of dementia, but there are others that also affect our elderly population. The disease isn’t just memory loss. It affects how the brain works and how the person thinks. This is important to explain to older children so they understand that it isn’t as simple as forgetting who you are or what year it is. They will eventually have personality changes and perhaps outbursts.
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We can let children know that, although there will be changes in how our loved one acts, we should still spend time with them. They will feel that love and kindness. Looking at photographs and listening to music are excellent activities.
Some children may worry that they or other family members are more likely to get the disease as well. This could be true, but it isn’t certain. We should be hopeful that there will be better treatments, and even a cure, in the near future.
Keeping communication open will be helpful. We need to allow everyone to have big feelings, as this will naturally happen as the disease progresses. A journal is also a great tool in navigating feelings about this challenging situation.
There are several books that could be helpful. Why Did Grandma Put Her Underwear in the Refrigerator? by Max Wallack and Carolyn Given is a great option for explaining the disease to ages 7-10. Weeds in Nana’s Garden by Kathryn Harrison is suited for ages 3-9. For teens, When the Brain Dies First by Margaret Hyde and John Setaro, and The Dementia Diaries: A Novel in Cartoons by Matthew Snyman are great options.
National & Local Resources
The Alzheimer’s Association is the nation’s largest Alzheimer’s non-profit. They promote advocacy, prevention, and treatments while trying to find a cure. They believe that the first survivor of Alzheimer’s is out there. How unbelievably powerful and hopeful!
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There are local chapters around DFW that offer volunteer opportunities and fundraisers. The biggest annual fundraiser is the Walk to End Alzheimer’s, which occurs every November.
Alzheimer’s Texas is a privately funded organization that provides support to Texans. There are caregiver and early stage support groups, as well as a 24/7 help line. You can also find volunteer opportunities on their website.
Dementia Friendly Fort Worth is a hyper local organization with a purpose to provide education and understanding to this feared illness, while also providing support to both caregivers and diagnosed individuals. One of the ways they offer support is hosting activites for those living with dementia over zoom. Dementia Friendly Fort Worth also has a list of organizations and businesses who have pledged to be “dementia friendly,” meaning they train staff to be understanding and welcoming to this affected population.
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James L West Center for Dementia Care offers residential, respite care, and adult daycare. Located in central Fort Worth, this is a nearby place to volunteer time engaging with the residents and daycare participants. The center provides much-needed relief and support for hardworking caregivers.
