The decision to place Robert in an assisted living facility was not an easy one. It isn’t easy for anyone but, to be honest, it was not only gut-wrenching but I was pretty hard headed about it. Denial is a highly regarded trait in my family and I wasn’t about to give it up now.
Before moving Rob to his Care Facility, Robert lived in a town 90 minutes away from me. He lived with Judy who is several years older than Rob and also suffers from epilepsy. They have been together for twenty years or so although Rob actually tells people they have been together for 35 years. That puts him at, um, age nine when they got together. It’s quite amusing to watch the listener puzzle through the math once Rob says this but I know how important it is to Rob to think he knows how long he and Judy have been together so I usually let the listener remain puzzled, and eventually, slightly alarmed.
Rob and Judy talked about marriage for many years but both would lose some government assistance if they married. They are very religious which made the decision for them not to marry all the more disheartening for them. They purchased rings anyway, lived together, cared for one another, went to church together but, ultimately, never married.
Rob’s mental ability declined over the years due to the seizures, brain surgeries and head injuries and Judy’s has never been much better. Despite these obstacles, they took care of their household, walked to the grocery store together, somehow got to doctor appointments and church on their own and managed their medications by themselves.
For many years, this arrangement worked just fine. There were instances where one or the other would end up in the emergency room because they had a seizure on the way to the store or at home and hurt themselves, but there weren’t any major mishaps.
Our father lives in that same town and, for years, I had no problem letting Dad help Rob with anything extra that needed to be handled such as finances and occasional transportation needs. Now, if you actually knew my Dad you would question my sanity for leaving even the slightest bit of responsibility to him. “Responsible” is not a characteristic attributed to my Dad. By anyone. Ever. I knew this then, I knew this as a child and I still know this. But, denial came in handy at the time and I was able to concentrate on my own family and career until it became painfully obvious that I needed to step in to help my little brother.
In November 2008, Dad brought Rob and Judy to my house for our annual Thanksgiving dinner. My other brother came with his family, my husband’s family came with their wives or girlfriends, our girls’ boyfriends were over – it was the usual chaotic family Thanksgiving. Good food, great fun and lots of family drama.
Rob showed up with a black eye (which Dad failed to notice). Neither Judy nor Rob have very good memories or communication skills so it was difficult to piece together the story surrounding the events leading up to the black eye but we did the best we could.
Apparently, Rob and Judy walked to the store. A homeless woman befriended them on their way home. Judy invited her to live with them. Homeless Woman readily agreed and took it upon herself to become “caretaker” for Rob and Judy in exchange for room and board. One day, Judy had a seizure and was convulsing on the kitchen floor. Rob was caring for her as he had for years (kneeling beside her and keeping her from harm). Homeless Woman didn’t think Rob should do this and tried to move Rob; he resisted; Homeless Woman punched Rob in the face.
My other brother and I huddled and formulated a plan to remove Homeless Woman from their home. We contacted the police, Adult Protective Services and an attorney. We staked out Rob’s home in order to talk to Homeless Woman and convince her to leave. In the end, my other brother paid Homeless Woman to leave their house.
My involvement in Rob’s care was now essential and no longer deniable. Once this immediate crisis was resolved, I contacted social services to see about getting in-home care for Rob and Judy. Obviously, they were past the point of being able to make good decisions for their care and well-being. I stressed that they were both mentally challenged and that I should be at any meeting a social worker had with them. Soon thereafter, a Social Services representative came to visit Rob and Judy without my knowledge and left when Rob and Judy told her they were able to take care of themselves. She had no choice but to believe them.
During this time, Rob was also battling a severe infection that had resulted from a recent surgery. He was participating in a medical study for an electrical stimulus device intended to stop seizures before they occur and Rob’s infection spread to the area of the device which was implanted just under the skin in his chest. Rob called the medical study nurse to say the device was coming out of his skin. He had not noticed an infection in that area until it had eaten away so much skin, the device was physically coming out of his body. He landed in the emergency room immediately.
The infection spread through the device, up the electrical leads to his brain. More surgery ensued as did a long-term hospital stay during which he received a course of round-the-clock intravenous antibiotics.
My intervention may have come too late. Eventually, I had Rob transferred to a Skilled Nursing Facility near me. I was able to visit him every day (probably trying to assuage my guilt for not realizing he needed help long before I finally recognized it). Rob stayed there for a couple of months while receiving even stronger antibiotics, battling his severe infection.
While at the Skilled Nursing Facility, I had several meetings with the out-placement director. I still thought Rob could go home once the infection was cleared up and he and Judy could continue managing on their own, with my assistance on the weekends, and, hopefully, a few hours a day of some competent in-home care. The out-placement director told me this was not advisable. I don’t even think he was that nice about it. He flat out told me Rob could not safely live on his own. I continued to think they just didn’t know Rob, that Rob had been able to do fairly well, until recently, on his own. I also argued with the facility about the “mental retardation” notation on Rob’s chart. Sure, he was slow to answer but that was because his brain was in a fog and not able to process conversation as quickly as others. He was not retarded and what an archaic description! I was incensed he was saddled with this label.
While visiting Rob everyday, I slowly began to realize that he really could not take care of himself. He did not make safe decisions. His short-term memory was terrible. He occasionally couldn’t make it to the bathroom on time. Yet, he did everything the nurses asked of him. He was polite. He dutifully took his medications and ate all of his meals. In fact, he ate as if he hadn’t eaten in ages. I eventually realized that Rob needed more help than I could give him on the weekends or a caretaker could give a few hours a day.
The nurses at the Skilled Nursing Facility loved Rob. He was a sweetheart and they cared for him with extra attention due to his seizure activity. Amazingly, neither the nurses nor residents feared him even though he was probably the only resident who would fall backwards without warning – sending little old ladies scurrying out of his way.
Even faced with all of this information and new insight, I struggled with the decision to send him home to live with Judy or find a suitable Assisted Living Facility for him. I hated to take Rob from Judy and worried what would happen to her if we found a Care Facility for Rob. I fretted about taking away his autonomy but had to weigh that against safety and health concerns.
Rob couldn’t decide what he wanted to do either – some days he wanted to go back home to Judy and other days he wanted to live in a Care Facility and have people make his meals, give him his medications and keep him healthy.
Our Mom had died nine years earlier and I wondered what she would have wanted for him. Would placing Rob in a Care Facility have upset her? Would she want that for her youngest son? Dad thought it a terrible idea but his notions of Care Facilities had been formed 60 years ago as a child when he saw his grandparents warehoused in a facility. Plus, he had proven he wouldn’t be much help if Rob went back home.
Ultimately, I decided to place him in an Assisted Living Facility near me. I told Rob (and myself) that this would be on a trial basis and we would see how things went. I couldn’t make a permanent decision so approached it as a temporary solution, which I’ve come to realize, almost a year later, that this was the best possible choice for him.
Dad visits once a month and brings Judy with him which is probably the nicest thing my Dad has ever done in his life.
Rob is long past his infection and has become quite active in the Care Facility. He gained a lot of weight because the boy does like to eat. My visits have dwindled to two to three times a week and I have to time them so as not to interfere with bingo or church (Rob kicks me out if it’s bingo time).
I still have pangs of guilt for placing him in the Care Facility but guilt is as much in my blood as denial so I’ve learned to live with it.
I don’t know how Mom would have felt to have her son placed in a Care Facility but my dear sister-in-law did say to me recently that Mom would have been happy with the facility I chose for Rob. She said Mom always knew Rob would need that level of care if he lived long enough.
Those kind words were almost enough to squash the guilt. Almost.
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Trish Hughes Kreis is a freelance writer and full-time Legal Administrator who coordinates the care of her disabled youngest brother, Robert. She advocates on behalf of Robert in order to keep him as healthy and happy as possible and has managed to persistently navigate the maze of social services and government programs available to help him. Most importantly, she keeps Robert in a steady supply of Word Search books and 7-Up and entertains him by being on the losing end of many card games. She can be contacted at firstname.lastname@example.org or through her blog www.robertssister.com.