I still don’t know what happened! In hindsight, maybe there were signals I missed. But without experience in this stage of the disease, I couldn’t have predicted, and I’m not sure anyone could have predicted the sudden changes in Marcia over the last 10 days that have changed my life. One of those signals I wrote about in my last post, which described the “cracks in her strong façade”. The crying and the occasional aggression towards me were appearing, but almost overnight, things changed in every aspect of her life. Crying became a constant and happened several times every day. Marcia virtually stopped eating and drinking, and she went from predictable 9:00 – 6:30 sleeping to hardly sleeping at all. And in one day, she went from wanting to hug me, to an almost rage at the sight of me. She was having hallucinations and was hospitalized for five days for what the hospital called “delirium”. She went from being comfortably living at home to having to be placed in a dementia unit at a local rehabilitation and nursing center indefinitely and likely permanently. In my Facebook support group, people often ask how one knows when it’s time for placement and those that have been through it often say “you’ll know”. I found that to be true in our case too. I just never expected it would go from “I know it’s out there” to “I have to do this today”, and frankly this hardly seems real. I haven’t felt these emotions, grief maybe, since she was diagnosed four years ago.
Two weeks ago on a Friday, Marcia went to the Day Center. Once home, she cried often, then laughed, danced in our living room with a friend, then cried some more. While I’ll never know what’s really happening with Marcia, I believe the dancing and laughing are remnants of who Marcia really is: a fun, upbeat and positive person who loves music. I believe the crying is cognitive awareness and severe depression over what’s going on with her. I think her tears are frustration and self-grief over what is happening to her and her family.
The next day crying was joined by anger and tantrum-like behavior and what could be described as obsessive compulsive rubbing of her thighs, knees and legs that could have been the beginning of hallucinations. Then on Sunday, she went from hugging me, to hitting, pushing and pinching me. Her sleeping pattern changed and she got up 5 times between midnight and 6:00 a.m.
The next night she wouldn’t let me touch her and wouldn’t come upstairs with me. When she would sit, she would sit in one place for just a few minutes, go to another part of the room and sit for just a few minutes before moving again. When she wasn’t sitting, Marcia wandered around our living room, hallway and laundry room knocking pictures over and pulling things off the wall. I sort of followed her around, hiding pictures, knives, knobs from the stove, and keeping her away from the staircase. Finally she fell asleep on the couch around 4:00 a.m. and I got a few hours of sleep too.
The next night saw more of the same. Aggression towards me, throwing things and an outburst towards my son left me angry at Marcia and wondering what I should do. I called the Alzheimer’s hotline and they suggested I call 911. I was going on three nights of little to no sleep and was concerned about Marcia’s safety, my son’s safety and the impact this was having on him. I was sure Marcia would have to sleep this night having not slept much two nights in a row. The night started off promising with Marcia sleeping from 8:30 until almost midnight. But after midnight she wandered around our bedroom and bathroom or sat on the edge of the bed jiggling her legs until about 4:00 a.m. before falling asleep on the floor. Three nights with virtually no sleep, little food or water and significant increase in hallucinatory behavior. At least confined to our bedroom, I worried less about what she was doing though I couldn’t even try to sleep. The next morning I called 911.
While in the hospital, they checked for urinary tract infections, dehydration, infections/bleeding of the brain and anything else that might explain the sudden change in behavior. MRI’s, CT scans, EEG’s, blood work, etc…showed only further deterioration of the brain due to Alzheimer’s, but nothing that we could treat. Marcia was restless all the time and fell out of bed once, and appeared to bruise her hands and wrist by aggressively twisting and wringing her hands. It now looks more like Dementia with Lewy Body than typical Alzheimer’s. DLB is another kind of dementia with a different look, including slumping posture, hallucinations, rigid muscles and shuffling walk. Marcia has all of these symptoms, but there is not a test that will determine if this is accurate, only the best guess of experts. Her neurologist will see her in a few weeks, but has had DLB on his radar screen since June. The outlook is no different from Alz, and she might have both. The truth is that it really doesn’t matter what label is put on her illness because the progression is unstoppable, though with medication, we hope to see her rest at night and be alert during the day.
Marcia has been in the Rehab and Nursing Center for 6 days now and is going through rehabilitation to help her walk and improve her ability to swallow. For now she’s confined to a wheel chair and can’t eat solid foods, or drink anything that hasn’t been thickened (she has “delayed swallowing”) because they worry about her aspirating. She doesn’t speak but recognizes friends and greets them with a smile and sometimes a hug. And she still cries every day and has a stuffed animal that she has torn apart already. Seeing her there in a wheel chair, with 43 other people who have at least 20 years on her takes my breath away and leaves me emotionally spent every time I visit. I don’t have any regrets or guilt about the decision to place her and have had wonderful support from family, friends and even strangers from my FB support group. Ryan and I are sleeping better and home life is a lot less stressful, and we are enjoying our daughter being home for spring break. But I feel an incredible emptiness and sadness knowing Marcia is in a facility where she doesn’t want to be and that she is likely very lonely, scared and depressed. But there is comfort in knowing she is being taken care of by professionals, is safe and that my kids are less stressed at home.
One last point to this incredible turn of events has to be around the support I have been given. My last post I mentioned I would talk about how family and friends often disappear from the lives of families experiencing Alzheimer’s, and that was my intent until the series of events of the last 10 days or so occurred. I will say that we have experienced the disappearance of some friends. But we are truly blessed in the PRESENCE of friends. Marcia’s close friends (I’ve called them “my other wives”) have been with us every day and have significantly helped Marcia adjust to the hospital and the Nursing Center, while helping me in ways I just can’t find the words to write. Our family has had wonderful support through meals, visits, cards, emails and Facebook postings from our church, friends and coworkers. I’ve had college friends visit from PA, DE and NC, visits planned by friends from Western PA and MA, and coworkers and friends who don’t live close to us offering to help and empathizing with what we are going through. I am humbled by the support, more than I could ever put into words. All I can say is “thank you” all.