I’m 44 years old, and for the third time in 25 years I am witnessing someone close in my family live with dementia. In the early 2000s it was my grandfather. We moved him to a local nursing home that, at the time, was new to offering memory care, but has since become a full memory care center.
In conversations with him, I learned of his past, because he thought it was the present.
Often, my family members would correct him: No, this isn’t your friend, it’s your daughter. No, you aren’t at your first job, or a sporting event when you were in high school, or serving in the military.
We hadn’t been educated on leaning into his memory loss and enjoying his memories with him. We also witnessed his decline when he became combative, or cried a lot, and eventually returned to a child-like state and ultimately stopped speaking. It was very hard.
Two more family members with dementia later, here are some of the things we do that I wish we had done then:
- Have the conversation. If they want to be in the past, be in it with them. It’s usually a short-lived moment and correcting them simply doesn’t help. If they think you are someone you are not, use your judgement on whether correcting the person will be helpful at all.
- Call visitors and other folks in the room by their names when you speak to them or when they first enter. Help the person know who they are looking at or with whom they are interacting.
- Make lists they can look at for daily activities. With one family member, the list included brushing teeth, getting fully dressed (listing what to put on), where the kitchen is to get breakfast, and more. We also left notes such as “it’s your wife’s birthday today!”
- Let them look for things. If they think something is lost, they will search and search. It’s when they get agitated that they will require a new distraction.
- Stay calm. Getting frustrated with a dementia patient scares them, puts them off of talking to you, and only causes everyone stress. They will bring up the same memories on a daily or even hourly basis. Your patience is key for calmness for everyone.
- Keep photo albums near their usual sitting spots, and create new ones online and have them printed. Recently, I made my uncle a photo album with current photos of every person in the family and put their names under the photos with their relationship to him. He looks at it daily and shows it to others. He also loves thumbing through albums showing his “old days” ... photos of him playing baseball and in the U.S. Air Force, for example.
- Support their significant others. If the dementia patient isn’t your spouse, and theirs is the main caregiver, offer to step in and let them have time away. Caring for this person has become their whole life. They need breaks, and sometimes just someone to listen to them cry about it. Even better, take the patient out of the home and with you for a little while. The caregiver may simply want alone time in their own home.
- Tell the neighbors the person has dementia. If you think the person might be outside alone from time to time, neighbors need to know they have dementia and could maybe use a watchful eye or someone to show them the way home. It takes a village.
- Make things a little safer. One of my co-workers has a mother with dementia who likes to use her stove. She has forgotten items she put in it. We all know what that can lead to.
- Don’t ask them whether they want to do something that is essential, but give them options on what they need to do. Here’s what I mean: Instead of asking, “do you want to get a shower?” and giving them the option to refuse, ask if they want help preparing to enter the shower. Don’t give the choice if they are someone who will often say no to something that must get done. If you aren’t comfortable supervising a shower, it’s time to get some in-home nursing support.
- Try to keep them safe around staircases and steps. It’s hard to know their full awareness as the days move forward. Steps can be forgotten or missed.
- Know when it’s time to get help. Do not let things get overwhelming. There are many resources for finding out next-step options such as in-home care and assisted living facilities.
If you care for someone with dementia, in my book, you are a superhero. It is truly life-altering for the caregiver as much as the patient. Exhausting and mentally taxing. But we love these folks and we want their time with us to be as pleasant as possible.
Hopefully hearing from people who have gone through this helps a little.
Mandy Gambrell is an editor for Cox First Media. Email her at mandy.gambrell@coxinc.com.
Some resources
Dementia Society of America: Request a free dementia information package, ask a question and get a free subscription to Better Brain Nation Magazine. Write to: Dementia Society of America, P.O. Box Box 600, Doylestown, PA 18901 or go online to dementiasociety.org.
Alzhiemer’s Association: Offers a 24/7 helpline. The website is alz.org/help-support/caregiving. There is a place on the site to find local support and events. Also see alz.org/dayton and .alz.org/cincinnati for local chapters.
Council on Aging in Southwestern Ohio: Visit help4seniors.org. The main office is located at 4601 Malsbary Road in Blue Ash (Hamilton County) and may be reached by phone at the toll-free number, (800) 252-0155. Council on Aging administers the Elderly Services Program in Butler, Clinton, Hamilton and Warren counties via contracts with commissioners in those counties.
Local Veteran services: Many local Veteran service agencies provide caregiver support. Go online to the National Resource Directory at https://nrd.gov or call (800) 827-1000.
National Institute on Aging: Online at nia.nih.gov.
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