Benson’s Syndrome – Has Taken Her at Only 62 Years Old

Our oldest Sister has died, only two months after mom died. I was hoping that she would not decline, that if we did not speak of mom’s death, in essence it could be blocked by her dementia.

Her symptoms were spread out over a decade. She had aches and pains, then severe back pain, followed by poor eyesight. She was diagnosed with sciatica, the fibromyalgia, later cataracts. She was a grade schoolteacher, held a master’s degree. Seemingly one day, she started forgetting things. Her principal advised her to seek disability. About a year later she was approved and was put on disability. Then suddenly, she couldn’t operate her phone, nor navigate her TV remote. Mom and I insisted we take her to her doctor; we had a whole list of things to discuss. The hurdle was HEPA. After much cajoling, my brother-in-law allowed us access. Once there, my sister, barely walking at a snail’s pace could not even remember her birthdate. Her doctor revealed that a year prior, during an ER visit when she fell out of bed and ‘didn’t feel right,’ her scans revealed dementia. Mom and I were silent, not wanting to alarm my sister. She sat silently at that time she had a tick of smacking her lips. Finally, when asked she said that no one had ever told her that.

Fear Of Nursing Homes

Immediately, she became petrified of being put into a nursing home. I promised her that this would not happen, over my dead body and I meant it. After breaking the news to her husband, who claimed he was never told either, so mom and I got to work. We knew caregivers had to be put into place. She kept saying she did not want to be home alone, that if she knew she was going to lose her mind she did not want to live. Yes, it was awful.

Fidgeting Uncomfortable Repeating

Once home we researched the dementia diagnosis and prepared ourselves for the following weeks appointment. Mom agreed to watch her for the next weeks with dad until caregivers could be found. I was prepared to pay out of pocket, and I did so, until her needs became too great. Eventually all of her disability went to paying various caregivers. Early on, I took her to a counsellor. Afterall, what could I tell her about dying? During our research it became apparent that her lifespan was cut down by a third. We kept this to ourselves, knowing that upsetting news brought on hallucinations. She began seeing ants everywhere. My BIL went through the motions of insecticides to appease her. Her clothes itched or felt off. She couldn’t dress herself, nor bathe, nor brush her teeth. Make-up irritated her. She couldn’t find the toilet seat. Her stare was far off, never making eye contact but in the general direction.

Eating – Food For thought

Almost immediately I told her that she must eat. I told her “Food for thought” which she repeated. Mom was cooking breakfast and lunch for her, and we had hopes for 5 more years. By the time caregivers were onboard, she wanted to go out to lunch and shop, etc. It was costly for the first 4 months or so, but I was happy to keep her occupied. During that period, I cleaned her home a few times due to her inability. She grew accustomed to various caregivers, just wanting company. She always wanted visitors, anything to keep her mind preoccupied. The TV was on constantly; it was her crutch. She needed her little dog beside her for comfort. But eating became worrisome for us. She mostly refused her caregivers; she would only eat for mom and dad.

Benson’s Syndrome

A year later, for it took that long to get a neurologist appointment, she was finally diagnosed with Benson’s Syndrome. This rare disease affects the back of the brain, mainly sight, so that you cannot determine precisely what you are seeing. Also, it is early onset affecting those in their 50’s. She was 60 then. Looking back the symptoms started decades prior, so all of her ailments if strung together would have pointed to this. Once I looked into this and did some calculating, I knew we did not have long with her.

Mom

Mom’s unexpected stroke left me and my BIL with a decision to shield her of mom’s condition. Mom could not speak, and she talked to my sister several times daily on the phone. He covered for her, until it became clear that mom was dire. When mom was pulled off the ventilator and struggled to breathe, my BIL situated my sister as close as he could to mom’s side. Try as I might, I’ve retained the image of my sister trying to reach in the direction of mom, saying; “Mommy don’t leave me!”

Doomed

Afraid after the burial, that she would rapidly worsen and preoccupied with Dad, I tried to sparingly speak to her. Unbeknownst, due to her lack of eating and drinking, she had another UTI which had to be treated. It worsened and she was hospitalized for dehydration. When I visited her, she was starving, I fed her and I stayed there until she fell asleep. She came home for a few days, but had to go back in, this time for another infection and more dehydration. She never came home.

I Didn’t Realize She Was Dying

Still dealing with mom, helping dad and sorting things out, for Christmas was coming, I thought she would stabilize and come home. Afterall she just ate 1200 calories for me. The next day when I visited her in a different hospital room and she was unresponsive, a nurse told me that she was actively dying. She had hours maybe a day to live. I had no idea.

Missed Signs

On a prior visit, on a different ward, she was twitching jerking. I was told that was from lack of food. Starvation. They fed her with an IV to stabilize her. She pulled out her catheter twice. She had to be video monitored. On one occasion, when we were alone, she was sleeping. She roused and I became worried when see looked at the foot of her bed and said sweetly: “What’s your name? Oh, you’re not allowed to say.” I said, “Oh, no.” She replied: “what?” I said, “I didn’t want you to decline so soon.” I also told her of all the accomplishments she achieved. Her smiling reply: “No I didn’t!” Now, on the hospice ward, during which I fed her ice cream and candy, she paused and said: “Comfort Me!” She was distressed. I did my best and told her not to be afraid. She went back to jabbering nonsense, then once again panicked asked: “Comfort me!” I tried, but it did not cross my mind she was dying. Once the nurse told me, I cried. The nurse said she had been seeing children. My oldest sister who was so good at handling all of our family functions, orchestrating countless functions was dying of starvation. She was vivacious, social and compassionate. And it came down to me to tell everyone that she had hours or days to live. This was on a Sunday. Our priest who had already spent time with her on the other floor, came immediately. Later he told me he gave her the apostolic pardon. Her friends from out-of-state came. Her former husband, friends and extended family, too.

Lights Flickering

In her room a recessed light to her left started flickering. It wasn’t like that prior. It did this for an entire day, then righted itself. As with mom, I prayed as many rosaries as I could, and in Latin. I knew by this point that I could not move the mountain of God and concentrated on sparing her soul from penance. I whispered into her ear that she was a success. I told her that if she found herself in darkness, to look for the light. Call out to Jesus or Mary or Joseph. I repeated this for several days when alone with her. Again, as with mom, I noticed that several men could not stomach to see her. So, her visits with the men in her life were brief, usually 15 minutes at best. She never again was coherent. She was on medication and any agitation, grimace or leg movement warranted increasing her pain meds.

Six Days Later

My sister died six days later on her grandsons second birthday, at 1:20 A.M. My BIL called me at 1:30 A.M. He was at home when the nurse called him. He wasn’t going down to the hospital. I called my other sister and being upset; she wasn’t coming either. I woke up Dad, and he tried to dissuade me, too. I called the nurses station and asked if I could come. She met me at an entrance and granted me access. There my sister was in her dimly lit room at 1:55 A.M. Death is not pretty. Her mouth was open to her chest. She was sallow from starvation, and she was gone. Never again will I speak to her, nor will she enjoy her retirement, nor dote on her only grandson. I knelt by her bedside and sobbed. The nurse came in and said: “Oh, honey.” I stayed a half hour and prayed and paced and took pictures of her, for me. Michele, all of my days I will miss what could have been. May the Lord God in Heaven please take pity on the soul of my sister.