My brother, Joel, was a wonderful person who could be charming, humorous, caring, and kind. At the same time he could not protect himself, use the phone, bathe himself, or do most of the things we take for granted.
My mother took care of Joel until almost her last breath in 1995 at the age of 86. Two weeks before she died, Joel moved into a group home and lived there for 16 years. Joel had Down Syndrome and was essentially healthy for most of his life. But by the time he reached his late 50s, signs of Alzheimer’s disease were apparent, and then he had severe aspiration pneumonias requiring prolonged hospitalizations in ICUs and Respiratory Care Centers. After the first bout, he was able to return to his group home, but after the second one, he was too debilitated. He then moved into a specialized group home for those who required more skilled nursing care. He lived there until his death in 2013 at the age of 64.
Joel made the adjustment to group home living with the kind, intelligent support of the direct support professionals (DSPs) who helped him to grieve by exposing him to the idea that “mommy was in heaven, no more pain.” He would pick up the phone and pretend to be speaking to her, saying, “mommy died, no more pain,” and he would bend over and imitate my mother walking in pain from the bone metastasis secondary to breast cancer. Joel’s DSPs supported him through his grief, all the while easing his transition to the group home after living with my mother for 48 years, integrating him into this new family who made him so very welcome.
DSPs receive intensive pre-service and ongoing training in everything from fire safety to CPR to medication administration as well as whatever specific skills are needed for each individual they support.
Joel depended upon his DSPs to support him with everything from bathing, dressing, transportation, and eating, to more complex skilled care like feeding him so that he did not choke, providing care of his tracheostomy, changing his dressings, managing him during his seizures and his many behavioral challenges, especially of negativism, fear, and depression as his Alzheimer’s worsened. DSPs do this while also cooking, cleaning, laundering, ironing, shopping, and all the other things that make a home operate safely and efficiently. Most importantly, they do this with respect, love and care.
Joel loved his staff. He could not tell you what day or time it was, but he could tell you when different staff were expected to come in. He would eagerly await Rena on the weekend, saying over and over again, “Rena, 4 o’clock.” Rena would allow his head to rest on her chest and make him his favorite hot chocolate.
Another DSP he called “Rose Honey.” And he would go to the door and greet each arriving DSP with hugs and kisses and help them to take off their coats.
Over the course of the years many DSPs left for better paying jobs. For example, Bruce, who was the only one that Joel would let cut his hair, which Joel preferred to do standing up in his room because he was afraid of moving barber chairs. And then there was Sean, who cried when Joel was critically ill, and Thomas, who always encouraged Joel to call me between my visits. When each one left Joel was sad and more withdrawn.
Each of these young men took jobs in transportation for better salaries and benefits, so that they could adequately support themselves and their families.
Each time a DSP left, there was a palpable pall in the house. The people who lived there had to accommodate to another loss of a favorite person. There would be an increase in wanting to stay home, testing of new staff, and a general sadness. I felt the loss, too. I cannot say enough about how I came to depend upon Joel’s friends, his DSPs. They cared for him, and by extension for me, through some of the most intimate and stressful times of our lives.
Most importantly, they gave Joel a very full life.
Now, it is our obligation to pay them a fair wage so that they can have a reasonable life without having to work multiple jobs or leave for better pay in another field. We must fight for funding for higher salaries for our DSPs in the New York State budget, and the mandate must be to give DSPs more than the minimum wage to justly compensate them for the difficult and demanding work that they do.
Thank you.