In caring for aging or ill parents, adult children face difficult and sometimes heartbreaking choices
Another holiday season has come and gone. We visited, we reminisced and we laughed, then we left our aging parents, our hearts heavy, wondering what the next year will hold. As we say goodbye, we wonder if that was the last one.
It’s something nobody wants to think about: caring for ill or elderly parents. It can be a grueling, frightening and lonely process to watch much-loved parents age, nearing the end of their lives. It can turn our own lives upside down.
Gladys Deutsch (right) spent years trying to convince her mother Mary to move from New York to Connecticut so the two could be closer together. Eventually, her powers of persuasion prevailed.
A popular face in the Elm City knows this all too well. Just three years ago, while former WTNH-TV anchor Kristen Cusato was working in California, her then-61-year-old mother, Linda, was diagnosed with Lewy Body Disease, the second most common form of dementia after AlzheimerÂ’s. This winter, Cusato left WTNH to become the Southwestern Regional Director for the Connecticut chapter of the AlzheimerÂ’s Association.
Â“I was having quite the life in San Diego at the time. When the doctor said she could no longer live alone, and could not drive, I knew what I had to do,Â” Cusato recalls. Â“It wasnÂ’t really much of a decision Â— it was right.Â” So she quit her job and moved back to New York to live with and care for her mother.
Â“We struggled to communicate, struggled with our new reality, as I saw what this memory-robbing disease was doing to my best friend, to a person usually so Â‘on,Â’ so full of life, so able to balance a checkbook to the penny,Â” Cusato explains. Before the illness set in, her mother was director of personnel management for Orange County, N.Y. and president of her local Rotary club. Three short years later, at the still-young age of 64, she is in a nursing home, unable to perform the most elementary tasks Â— unable even to speak.
Cusato recounts: Â“We were having a discussion one day while we were cleaning out her house in preparation for her move into an assisted-living home, she said something to me I will never ever forget: Â‘IÂ’m a good person, right?Â’ Â‘Yes, Mom, the best, the strongest person I know.Â’ She said, Â‘Then why did someone pour acid in my ears?Â’ It makes me cry whenever I think about it.Â”
When her mother first moved into assisted living, Cusato would visit every day as she and her brother prepared their motherÂ’s house for sale to help pay for her care.
Â“I learned that the caregiver needs to take time for themselves,Â” Cusato says. Â“You have to be healthy, both physically and mentally in order to deal with this. You have to work hard to balance your life.Â” After returning to the East Coast, she rejoined WTNH as a freelancer, commuting for several months until she was re-hired as the morning anchor. She then moved back to Connecticut and visited her mother every weekend.
Â“That was part of my self-preservation Â—Â working,Â” she says. Â“I was so busy in the early morning hours and had to be Â‘onÂ’ so much so that the time I was on TV was a perfect distraction to what was going on with Mom,Â” she says. Â“She had a heart attack in the fall of 2010, and I was appreciative of my employer giving me time to get back to New York to care for her, through several hospital and rehab stays.Â”
Â“Having an understanding employer is helpful,Â” Cusato adds. Â“I would suggest that if someone in your family is diagnosed with dementia, you sit down with your boss and explain what is happening. You may have to take some immediate sick time. This disease is unpredictable, and every person is different.Â”
CusatoÂ’s mother now lives in a Connecticut nursing home, on aÂ dementia unit. She doesnÂ’t talk, just a few words here or there, but rarely a full sentence, since her ability to process and form words out of thoughts is severely degraded.
Â“Imagine being trapped in your mind like that. ItÂ’s a horrid prison,Â” Cusato says. She still visits her mother nearly every day and it does not get any easier with time.
Â“SheÂ’s not eating, really, just drinking, and she doesnÂ’t know who I am,Â” says Cusato. Â“However, I know she is in there, so I talk to her like I used to, tell her about my day, share things, all in a positive, uplifting voice.
Â“I will admit how hard it is to have one-sided conversations with a confidante who I depended on for years,Â” she adds. Â“I give her nothing but love, because thatÂ’s what she gave me my whole life. I tell her how proud I am of her, and how I know she is working very hard at this.Â”
Living in California a few years back, Cusato had no idea what turmoil was about to hit. Little could have prepared her for the rapid progression of her motherÂ’s disease, but she urges others to educate themselves on the warning signs of dementia and other illnesses, and to prepare as best they can.
Â“My advice for younger folks dealing with aging parents is to give a lot of love,Â” says Cusato. Â“Offer support and comfort. They are confused about whatÂ’s happening to their bodies and minds as well. They still want to be useful and important to you, their children. Tell them they are.Â”
To adult children with parents suffering from dementia, she offers: Â“Bring the grandkids, ask their advice and donÂ’t argue when they are not correct. What difference does it make, anyway? If they think itÂ’s Tuesday and itÂ’s Wednesday or if they insist you havenÂ’t been to visit in a month and you were just there yesterday, tell them you are sorry and Â‘LetÂ’s go for a walk or look at family pictures!Â’ Or, Â“LetÂ’s talk about that great vacation we went on!Â” Short-term memory may be gone, but many memories from long ago still remainÂ…you just have to get them to come out.Â”
If there is any good news, it may be this: Â“You do not have to do this alone,Â” Cusato says. Â“Our helpline is open 24/7 at 800-272-3900. And our website is full of info: alz.org/ct. There are support groups, there are respite programs, education, things you can get involved in: Walk to End AlzheimerÂ’s! There are five generic ambien events] in the state. New HavenÂ’s and NorwalkÂ’s are in the fall.Â”
Though Cusato was forced to make quick decisions due to the speed at which her motherÂ’s illness progressed, many face a less black-and-white scenario and are better able to prepare Â— as they should.
Gladys DeutschÂ’s mother Mary was living in New York City when mother and daughter made the mutual decision to live closer together. Living in New York City all of her life, Mary was surrounded by friends and family, but as she got older that circle began to shrink.
Â“As she was becoming older and I had to participate more with her doctorÂ’s appointments, it was hard to navigate the distance,Â” explains Deutsche, who lives in New Haven. Â“Between her becoming more isolated after being very active until she was well into her 80s and health issues cropping up, it made sense for her to be closer to family
Â“It made sense Â— but it was still a very difficult process for her mother, who didnÂ’t want to leave her lifelong New York home.
Â“She was very familiar with [the city] and itÂ’s not easy when youÂ’re older to adapt to new places. We had talked about it for a long time and she was very resistant for a long time,Â” Deutsch recounts. Her mother kept saying only that she would know when the time was right.
Â“We all let her know that we missed being with her and we wanted to remain involved with her, but she wanted to remain as independent as she could be,Â” says Deutsch. Fortunately, Â“At a point, she said it was time. She moved into her apartment last year the day before Christmas. It started snowing and it didnÂ’t stop all winter. cheap ativan timing worked out right.Â”
Figuratively and literally, Â“ItÂ’s a journey and a process,Â” Deutsch allows. Â“The more you can keep the communication open [the better]. There was a lot of time when my mother really just didnÂ’t want to talk about it. Change is not easy at any point in your life, and itÂ’s certainly not easy when youÂ’re older.Â”
Today, Deutsch is comfortable knowing that her mother is in a warm and nurturing environment at Tower One/Tower East, a Jewish community for seniors in New Haven.
Â“WeÂ’ve done it, it was the right decision, and there are things that are great about it, but there were sacrifices,Â” Deutsch says. Â“She misses her independence, she misses her apartment and her [New York] friends. Even though not so many people are there anymore, she misses the life that she used to have. ThereÂ’s no way around that.Â”
Alternately, she adds: Â“If you move earlier, you have an opportunity to build a life in a new place. You have more of your faculties and valium generic resources available.Â”
Deutsch loves having her mother close to her and says itÂ’s been great for their relationship, since visits are easier and more frequent. Â“Even though there are more issues and needs to tend to, I feel I can be more supportive and providing in a way that is more meaningful and helpful to her. ItÂ’s less disruptive to my own life.Â”
Rebecca Olshansky, director of marketing/occupancy and community outreach for Tower One/Tower East, agrees that involvement and anticipation can help make a difficult situation easier. She suggests that adult children do research to determine what type of here situation would be best for their loved ones before a crisis arises.
Â“ItÂ’s good for them to visit and tour Â— see that this is who we are,Â” Olshansky says. Â“The walls speak for themselves. [Prospective seniors] have to feel that comfort level and I encourage people when they come to visit to speak with our residents. Our residents are engaging. We are fortunate that weÂ’ve had different generations of the same families living here over the 40 years weÂ’ve been here.Â”
Olshansky adds, Â“Look closely at your parentsÂ’ needs and what will help make their golden years more fulfilling and enriched and remember that life is not over.Â”
For one resident, moving to the towers meant resuming some of the interests he had as a young man.
Â“He moved here and he realized that this wasnÂ’t just a place to live, this was life,Â” Olshansky says. She tells a story of the resident who enjoyed photography as a young man, but when family and a career came along, his hobby fell by the wayside. Once he moved to assisted living, he had more time for photography. Â“WeÂ’ve coordinated two gallery openings for him,Â” Olshansky says. Â“Assisted living isnÂ’t the end of life!Â”
Olshansky encourages the families of prospective residents who ask when the time is right to not wait for the crisis moment. Â“Do your homework and come with your parents,Â” she says. Â“Let them be part of the decision. Help your loved ones plan their future. Since last winter, so many people were shut in and not able to get around in the weather. Not here Â— life went on here. We dined with friends, saw movies, played cards, and we never shut down.Â”
According to Joy DeMarchis, director of development at Mary Wade, a senior community in New Haven, there is an uptick in website visits during the months of November, December and January as grown children become more concerned for their aging folks.
Â“These are the three months when family members come home for the holidays and notice changes in their aging parents. It starts the discussion about what to do,Â” DeMarchis says. Mary Wade offers an assisted-living facility and short-term rehabilitation for people who have had surgery and need a place to stay to get better and go back home. Mary Wade also has a rehabilitation program for out-patient and in-patient care as well as hospice care for those nearing the end of life.
Explains DeMarchis: Â“Often times what happens is decisions for care for aging parents becomes a crisis with a rush to the emergency room followed by surgery. Now they canÂ’t come home right away, but what is going to happen?Â”
She adds: Â“Many will say Mary Wade is full, but thatÂ’s not the case. We do have a waiting list for skilled nursing, but not for the adult day center, assisted living or transportation.Â” DeMarchis points out that Mary WadeÂ’s transportation program goes door-to-door, not door-to-curb, and thatÂ’s important during the winter months when it becomes very hard to navigate slippery streets and sidewalks.
DeMarchis urges adult children of seniors to at least begin communicating with their parents about buy xanax online no prescription future: Â“It is mostly women who make the decision Â— if not the daughter, the daughter-in-law Â— and navigate the system,Â” she says. Â“It can be very confusing. It can be cumbersome and one of the hardest things youÂ’ll have to deal with.Â”
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