LUFKIN, Texas (KTRE) - The holidays can be a time of joy for some families, but when a family member is dealing with health issues like dementia, it can put a burden of grief on the holiday.
“Thank you for all the ways you make our Christmas merry, bright, and full of love. Merry Christmas, with love.” Sherry McClung reads from a card that she found a few months ago while cleaning out her husband Gene’s items. Gene is battling Alzheimer’s.
“I found this, a Christmas card that he had never given to me. He had forgotten all about it,” McClung said.
This last year hasn’t been an easy one for both of them. Sherry and Gene celebrated their 32nd wedding anniversary at a window at the living facility Gene is in. When she was able to see him for the first time after nearly 260 days, she was in full PPE.
“It’s very difficult to describe. Seeing him in the window, knowing he’s there, knowing he’s healthy enough. He doesn’t have COVID. I don’t have COVID. And then when we’re finally … this is a man that you’ve been married to for 32 years, he’s the love of your life, and to finally just get to hug him and just rub his hair back, and just to be able to be a part of that,” McClung said. “Because when you’re a caregiver, it’s like somebody took your whole life away from you. And now, finally, you’re actually able to touch him. It was just exhilarating I guess is the only way I know how to describe it.”
Visits she was used to and now with the holidays coming up, McClung said this year looks very different.
“First of all, even if you’re an essential caregiver, you can’t just go visit them as you would want. You have to call first and make an appointment, and then you have to go through, whether you need another COVID test, they have to check everything out again to make sure you’re safe,” McClung said. “Sometimes, they would make me wear full PPE if they had any COVID in the building or anything going in to see him.”
However, McClung said she may have found a plan.
“I found out yesterday that IHOP will be open from 5:30 a.m. til 10 p.m., Christmas Day,” she said “So I think we’re going to be going to IHOP.”
McClung is not alone in this challenge. Kathy Spetter the Family Services Manager with the Alzheimer’s Association reminds people to communicate with family members about how they want the holiday to look. She said caregivers can adjust their expectations.
“You don’t have to do everything you always have done. In fact, give yourself permission and make a decision now that you’re not going to try to do everything that you’ve always have done because it just creates so much stress, it robs you from the joy of the holiday season,” Spetter said.
It’s also important that caregivers remember to make time for themselves. While they can be so consumed in caring for others, Spetter said they have to think of themselves as well.
“There are things they can do; they can retreat to their own room when they need to retreat to their own room. Lower their expectations of all of the things that they have to do, in terms of household chores,” Spetter said. “People are oftentimes trying to balance doing things for other people as well. Many caregivers might also be taking care of a grandchild.”
There is also a 24-hour, 7-day-a-week hotline that Spetter encourages family members to use where they can speak with specialists who offer confidential support.
“Those that are caregivers, it looks like there isn’t any hope, and yes, it’s the same as someone with cancer, and it’s not one size fits all. Alzheimer’s has a full spectrum, just as cancer does, and someone had told me once that if you’ve seen or met one person with Alzheimer’s, that was all you did,” McClung said. “You met one person. Each one is a little bit different, and when I started out in this process, there’s no support, I had to call the Alzheimer’s hotline, and it was the only thing that got me through.”
She wants others to know that they are not alone, and it’s a difficult road. There’s no easy way to put it.
“It’s like you’re on a plateau, and you say, ‘Okay I’ve gotten adjusted to how he is here, or whoever it may be, is doing,” Mcclung said. “And then all of a sudden it drops and it puts you in a state of now what. Where do I go from here, what do I do?”
McClung said she wants to remind those going through this that it’s important for you to enjoy the moment, even if your loved one may not remember it.
“You still have the memory, even if he doesn’t. I mean he may even say to you, ‘Why didn’t you come to visit me?’ And you had. I mean I’d gone through, and some of it is, ‘Why don’t you love me anymore?’ And through the COVID, that’s been the hardest part, to say, ‘Why don’t you care for me anymore? Why don’t you want me anymore?’ When you want them with all of your heart, but they don’t understand, they can’t reason all of this,” McClung said.
This year, through their personal battles and a pandemic, McClung said that she has learned to be grateful for the little things.
“This Christmas is different; these Christmases have been different, but it’s okay. It’s okay. Because I’m going to enjoy whatever it is we do have,” she said. “If that means going to IHOP, guess what? I can count that as one more meal that we’ve had together instead of just sitting outside that window.”
McClung hopes that those who have been impacted by the disease can come together even if it’s virtually or on social media to be there for one another during this difficult time.
“I just want people to know that we here in Lufkin need to really get behind whomever is going to lead this (support group) and support the Alzheimer’s group,” McClung said. “Because if there’s ever a group of people that need support and don’t have any, it’s that.”
This Tuesday the Alzheimer’s Association is hosting a free holiday, dementia, and COVID-19 call to offer support and tips to those who may need it this week.
To register call, 800-272-3900 and for more resources, you can visit https://www.alz.org/help-support/resources/holidays