Suddenly, everything is different. Normal changed overnight and people are adapting to new ways to communicate, to acquire supplies, to work. For some Boomers, the challenges of isolation and social distancing aren’t just about self-isolation, it’s about hunkering down with adult dependents with special needs.
Mary Jean Hartel on her recent 70th birthday with daughter Ruthanne
Adjusting to the new normal of buying online and telecommuting for work presents a steep learning curve for all of us. When caregiving for adults, the changes can be even more stressful.
Typically, the caregiver is managing medications, healthcare equipment, and regular outings to doctors’ offices. A consistent supply chain is mandatory for those dependent on life supporting items. For others with special needs, the challenges are emotional or intellectual, and disruptions to routine are excruciating. Individuals who thrive on schedule and structure can react adversely to even slight changes, and upheavals like sheltering at home are painful and hard for them to understand.
Depending on the situation, some caregivers have found isolation to be a burden, while others are finding the forced slow down a relief, and plan to make it permanent.
Mary Jean Hartel provides care for her 32-year-old daughter with Downs Syndrome. Ruthanne, who is normally very active in the Athens area Extra Special People programs, has had a difficult time understanding why she can’t see her friends. Before Covid 19, she would bowl, swim, and work a job during the week.
“She used to go out every day,” says Hartel. “Now she asks, ‘Mom, am I stuck at home today?’”
This spring, Ruthanne was anticipating the release of movies and several birthday parties. Every day is a challenge for Hartel explaining why, once again, some event was canceled.
“She lives in the present so it’s hard for her to understand. She misses her friends and her activities,” says Hartel. “There was a look of pure joy on her face when she understood that everyone is stuck at home, not just her.”
Fortunately, Ruthanne enjoys posting on Facebook and that has provided some contact for her along with some Zoom get-togethers. Around the house, Ruthanne is independent and finds ways to occupy herself, but with such an active lifestyle, Ruthanne misses her daily outside-the-home world.
In the past, Ruthanne liked keeping up with current events but her mother has stopped reading her the headlines because the virus has made her fearful of going out. Explaining complex information to Ruthanne is an ongoing challenge – “I try to stay calm and explain the best I can why things have changed.” Hartel deals with her own stress by walking more – a habit she hopes to make permanent
Less stimulation – More peace
For some the shutdown has been a positive experience. The mother of a 19-year-old son with autism says the confinement has decreased the stress in her home.
“I had already started working from home to save money and to be around more because I felt like he wasn’t getting enough attention. I have more time to spend with him, and when he comes knocking on the door, I try to relax, keep calm and accept the interruptions. Overall, the shutdown has been a positive a thing for us.”
Linda and Perry Thompson
Likewise, says Linda Thompson who is the primary caregiver for her ailing husband Perry, a former helicopter pilot and Vietnam war veteran. Almost a decade ago, Perry was diagnosed with frontotemporal dementia, an umbrella term for a group of uncommon brain disorders.
“Staying at home has reduced Perry’s anxiety. He’s calmer with less stimulation,” says Thompson. “Perry is a true hero. He sacrificed a lot and saved lives. There are people who would not be alive today if it weren’t for him. He’s a good man and deserves the best care I can give him.”
But that care involves a lot of sleepless nights and because it’s a condition that alters quickly, staying on top of behavior changes is a full-time job. One unexpected benefit of the shut down is that Thompson has been able to communicate with Perry’s physicians more directly online. She believes this technology has helped his doctors better understand their situation at home.
Thompson says that although she misses the opportunity to meet with friends, she is adjusting well to the slower pace.
The extrovert suffers
For others, the slowdown hasn’t been as beneficial. Often the caregiver’s lifeline is community support and during these times of isolation, much of that support has disappeared. Whether it’s in-home help or regular meetings with friends and family, caregivers rely on the emotional bolstering they receive from others. Finding new outlets for reaching out is not only a challenge, but for some it’s absolutely vital.
Isolation has been hard for Susan Brown while taking care of both her brother, who has dementia and her sister who has multiple physical issues.
“I don’t get to see my friends. I’m an extrovert so after I saw one of them, I felt so much better,” says Brown. Now she relies on infrequent visits outdoors to meet her need for community.
During social distancing Brown had to weigh the option of continuing with the in-home assistance she receives from two caregivers. Before isolation, Brown says saved her sanity. “I could leave, go to the gym, do shopping. It was a big decision and risk to bring in the germs,” says Brown, but the need outweighed the risk.
Life has gotten easier for her brother. “He didn’t understand why he had to get dressed and go to the doctor for prescriptions. Now they can see him and prescribe online,” says Brown.
Brown’s sister is not as happy. She lost her weekly bridge game and with the library closed, Brown could not bring her the usual stack of books on a regular basis. Luckily, the library has begun to partially re-open and books can be picked up outside.
For the long term, Brown expects to be taking precautions for a while. “You just have to bear with it. You have to take care of yourself so you can take care of the people you take care of.”
“I’m also walking the dog a lot – he thinks it’s wonderful!”
