Dan’s wife Denise was in her 50s when she first showed signs of Alzheimer’s disease. Today, eight years later, Denise lives in an assisted living community and had to be moved from one community to another in the midst of the COVID-19 pandemic.
What a year 2020 has been.
Alzheimer's disease is not going away, and the pandemic has not stopped its effects, except to make things more difficult.
Care communities here in Georgia went on lockdown in mid-March. My family initially did some window visits with Denise, through a big bay window where staff could park her wheelchair. As Denise was on the first floor, we could also go directly to the window in her room. Sounds okay, right?
I tell you, that was the worst thing I've ever done. Denise is nonverbal at this point. She would make eye contact and reach out, and want to touch me. We couldn’t hold hands, just look at each other through thick glass. Simply, it sucked. It was so difficult. It was a sad sight on both sides of that window.
The other challenge we had during the COVID-19 pandemic was that the care community she was in closed down. We got a letter in mid-April saying we had to be out by the end of May. And because of the pandemic, a lot of places could not and would not take new residents. Denise requires such a high level of care that many places simply said they could not accommodate. Finally, after about two weeks of interviewing 15 care communities, we found a new one.
Denise has declined so much being in social isolation. I honestly thought we were going to lose her. She lost about 15 pounds over an 8-week period. Once she was settled in her new care community, she bounced back, but she is still only 91 pounds today. We are limited to front door visits, separated by 6 feet, as she sits on a covered porch. It is something, which is better than nothing.
We chose Denise’s current care community because the individual caregivers have so much experience with Alzheimer’s disease. The least-tenured person has been there for nearly a decade, others over 20 years. They know how to handle someone as far along in the disease as Denise.
A couple of months ago, I went for a door visit, and the staff told me that they had played a Carmen Miranda movie, which Denise reacted to at several points. Her family liked Carmen, and as a former avid swimmer, she likely had a connection to the images.
I am so pleased with the care she has been given. It’s a critical component, getting to know her caregivers, sharing information about her idiosyncrasies. Sometimes we could go in and help feed her and relieve them for a bit; we can't do that now. We know it can be as tough for the staff as it is for families. We appreciate them and their work more than they know.
Hope for Caregivers
I do everything I can with a positive attitude, and I share the same message with other caregivers that I have had all along: Keep visiting your loved ones, even if it is harder to do so. It is more important now than it ever has been before.
The people we love who are living with dementia deserve to see us, and we deserve to be a part of their lives. Support them as much as you can. Work with your loved one’s care community. If I have to put a hazmat suit on to see Denise in person, I will do that.
Call the 24/7 Helpline
, and get involved in a support group and stay connected to that support. The group l lead through the Alzheimer’s Association has been a Godsend throughout this journey. We stay connected throughout all our personal challenges; the more normalcy throughout the pandemic, the better. We have had members lose their spouse during this time, and it is so important to support those folks and know that this is real. It's happening to people around the world.
There will come a time when we can be face-to-face, so keep advocating to open up care homes safely over time. Don’t give up.
Cherishing the Special Moments
We've had a lot of ups and downs on this journey. Denise has been in memory care for four years now. But even in the lowest moments, I know there is still a little bit of her that recognizes me and my family.
One day not too long ago, our daughter put our grandson Leo on FaceTime. I explained to the caregiver who was with Denise that she was there the day Leo was born. Denise looked at Leo and said “Nice boy.”
She is still connected. Sometimes she reminds us in these little ways through these small, special moments.
Some part of every person affected by this disease is still in there. And that's why I encourage people to keep visiting and keep getting support, no matter what we’re up against.
Post update: Denise lost her brave battle with Alzheimer's on September 26, 2021.