So Many of Us.

I just found a group on Facebook composed of more than 700 people, all having been touched in some way by dementia or Alzheimer's. First of all, let me say that while I see what an amazing tool Facebook can be; dear god, I can't be the only one who finds it an eternal mystery am I? Anyway, I've only been in communication with this group for two days of so but its been long enough to experience how lovely, generous, and welcoming they are. Its also been long enough to see yet again just how many of us are affected by these terrible diseases.

It's evident that several of the members are themselves suffering from dementia of some sort. I can only honor the bravery of these people who are feeling their very selves retreat and be destroyed before dementia; they are still managing to get the message out as much as possible and tell the world what this horrible experience is like. I can't imagine that sort of courage.

And then there's the day to day courage of all the unpaid caregivers who are caring for their loved ones; who have chosen to give up money, free time, and many other things in order to do a thankless job that can be filled with nasty surprises and heartache. I guess they live for that one moment of grace when a loved one remembers them or laughs with them. Although I don't see my Dad every day, I know how wonderful that moment can feel.

I'm the only one in my social or family circle who has a loved one with dementia, and it can be hard not to have that person who knows exactly what I'm talking about or feeling. (I do thankfully have my lovely fiance, who knows something of what its all about.) So it's kind of a treat to find this great group full of people who get it. Thank you to all of you who have welcomed me so warmly and who understand so well.

Corvairs and Conversation II.

So we continued on, Paul driving and asking the occasional question of Dad, me crammed in the back, trying to interact with Dad while simultaneously fearing a repeat of the vomit incident, and Dad, sitting stiffly upright, looking forward out the windshield. We journeyed down to Marymoor Park and drove all the way around, stopping from time to time to look at something but never getting Dad out. Frankly, we were afraid we wouldn't be able to get him back in the car!

It was a little sad for me to be at that particular park with Dad, since we had spent many summer weekends there as a family when I was little. I remembered biking along the bike paths with my family, eating picnics on the sunny fields, and taking walks through the park. I even got married for the first time at the park; a day that Dad was able to fully share, since the dementia hadn't yet struck him. It was a little bit of a bittersweet visit.

But, having made a loop of the park, it was time to turn around and take him back up the hill to his home and what is now the reality of his existence. We pulled in to the driveway of the house and I crawled out of the back seat and hurried over to open his door. He was already starting to try to get out of his seat belt but having trouble. It was heartening, in a way, that he recognized his new home enough to know it was time to get out. His caregiver came out and eased him out of the car and took him back inside, and it was time for us to head back to the city. I have no idea how much of the car he recognized, whether he remembered owning one, or even knew what the heck we were talking about. Probably to him, he was riding in just another vehicle. I think he at least enjoyed the company. But it occurs to me that we don't do these things for our dementia-struck loved ones, we do them for ourselves, to make ourselves feel better, and to touch, if we can, what used to be our loved ones.

Corvairs and Conversation.

I think I've mentioned before how mechanical my Dad was and how much he loved cars. He could fix absolutely anything that went wrong in a car, even something like a cracked block had no chance against his mind and talented hands. He had several classic cars when I was very little, the last one I can even vaguely remember was a Corvette, but I have pictures of other classic Corvettes and Corvairs that Dad loved. Yesterday, my fiance and I took Dad for a ride in our classic car, a 1965 Corvair.

It was a beautiful sunny day, even hot, as we pulled into the driveway of Dad's AFH. We went inside and found him dozing on the couch, but when woken, he seemed to be having one of his good days. I think he was happy to see us. We dragged him up off the couch with the help of his caregiver and headed outside. He's looking good after the stresses of the surgeries, but I was still surprised and a little sad to see how slowly he's walking now, how carefully he places his feet, almost shuffling along.

Outside, we showed him the car. My fiance even opened the hood to show him the engine, something he would have paid rapt attention to in the past. It seemed hard to keep his attention now, we would point something out and he would pay attention for a second, then start looking at something else. His mind has really traveled far away into the disease.

His caregiver eased him into the car and we were off, rumbling down the quiet neighborhood street in the warm sunshine. My fiance, who is a wonderful person, would talk to him, mentioning things about the car or asking him about cars or experiences he had had, even though most of the time we waited in vain for a response. We were able to get a few comments on things, though, and it seemed like he was enjoying being in the seat of a car he had once loved. It was really nice to see him there. TBC

Visits.

I have a new hospice patient who I already really like. This patient is quite elderly, but still really sharp and lucid. I'm not supposed to mention that I am specifically a hospice volunteer, but I wonder if he knows I'm here because they judged him to be within six months of death. Is it a hard thing I wonder to be so close and know it intimately? Most of us spend so much time in denial of death, I wonder what it's like not to be?

My patient is full of wonderful stories, fascinating stories even, all about what Seattle was like at the turn of the century and all the things my patient could remember about living here back then. Service in a World War, marriage and children, what the city looked like before the sprawl and the Viaduct. I could sit and listen to this person for hours, and I think they are glad of my company and the chance to talk.

Coming in and out of the facility, I see all the other residents who are sitting around or walking up and down the corridors, trying to stay busy. I would imagine that not a lot of these people get visitors, yet I bet they have lots of fascinating stories, too. Stories that lie within these people and don't get told. I just feel for these elderly citizens who no longer have visitors with those all important ears to hear their stories. Even someone just to visit and exchange a smile with. It's just a shame, that's all, that these people brave people who lived and worked and built this country are sitting, forgotten, in facilities all over the country.

Inspections.

I got a call the other day from a state worker who had just been visiting the Adult Family Home where my Dad lives. He apparently visits the house regularly to make sure that I’s are dotted and t’s are crossed in all the charts and paperwork that need to be filled out and managed. Every single thing that residents do has to be recorded and set down in a chart, including the care plans that the state mandates are updated every quarter.
The inspector had several questions for me about how I found the care to be at the house, whether I thought Dad was being taken care of properly, and whether I thought the owners were doing a good job. I told him that from everything I had seen, the house seemed like a very competent, comfortable place that was taking good care of my Dad. He seemed satisfied. After I hung up, however, I had an attack of the apprehension that I feel on a regular basis.

There was no way I could care for Dad on my own, my chronic condition alone makes it impossible. So I had to relegate his care to someone else, a facility that seemed clean and well-managed to me, and caregivers that seemed caring and competent. But it doesn’t stop me from feeling fear. How do I really know?

I don’t live with these people, I don’t see Dad on a daily basis, and I have no closed-circuit cameras making sure that everything is going fine. They have those for parents now to check in on their kids-I wonder whether its only a matter of time that we have them for our elderly! And I hear so many horror stories. People who know I have a parent in care seem to delight in telling me the latest terrible news about a facility doing terrible things to its residents. I have to trust in others and hope that a state inspector will catch any problem. That sometimes seems like a thin basis on which to establish trust, but I had to trust someone. And I’m grateful that the state sends out inspectors who actually do their jobs.

To all those people who wonder if they did the right thing by putting their parent or loved one in dare, I’m with you-I feel your fear and apprehension. Try to forget the horror stories and rely on your instincts in picking a place. Chances are very good that you’ll find a place where the people will love and care for your loved one but it’s still a hard thing to trust in.

Realities.

I just finished a really great book, sort of a memoir, written by a psychologist who visits the elderly in nursing homes, assessing their mental states. The book, Nasty, Brutish, and Long, written by Ira Rosofsky, is fascinating, detailing not only his experiences with the elderly, ill, and dying, but his personal experiences with his own father residing in a nursing home. What he has to say both gives me hope and makes me fear for all of us.

Strangely enough, it was a little like reading my own book. We wrote very similarly, at least to me, and a few of his observations or experiences matched mine! We both wrote about how amused we were at the euphemistic names given to dementia wards; flowery, nurturing names that don't refer at all to what actually goes on in the buildings they name. My experiences, fortunately, are with the more upscale facilities, and he describes so many incidents in which families are forced to put their family members in cheaper, less-staffed facilities and spend their assets down to qualify for Medicaid. What kind of country are we living in where our elderly are forced into these less than ideal situations, and their families are forced to make terrible choices?

He also talks about the pharmaceutical companies and how they are practically minting money at these facilities, since the average elderly person is taking up to ten different prescriptions a day! The American people, through Medicare and Medicaid, and private families are paying for the drug companies to get rich. It's disturbing. And I haven't even started on the staffing! TBC

World Events

So much has been going on in the world lately, its hard to take in. It's made me think of all the things that have happened in the world since Dad stopped being aware of it. I remember years ago when I lived with him, I took him to vote in a presidential election. I knew it would be his last time voting, although I'm sure he wasn't thinking that. I want to say it was one of George Bush's elections, and as Dad was a life-long Republican, I'm certain he voted for Bush. I didn't look at his ballot at the time, but the election officials didn't seem to mind that I helped him to the booth and gave him a little advice on voting. Remembering this makes me a little sad now-it was the last time he performed a task I'm sure he took very seriously. The last time he was involved in the world.

Since then we've had 9/11, and the Afghan War, and the Iraq War, and The War on Terrorism...Yikes. And now, Osama Bin Laden has been hunted down and killed. And my father has no idea who Bin Laden is nor why it's so important to us as a country that he was found and killed. I don't even think he was aware at the time of 9/11 what was happening. These are all events he would have been interested in and thinking about; they would have been important to him. I don't know what fills his mind these days, but it's not these incredible current events. And how sad is that? I find it terribly sad.

What's even sadder is how many other families share this sadness. Our lives have continued, we've continued to be delighted and saddened and horrified about the world and what is going on around us. But the lives of our loved ones who have dementia have essentially stopped short. They will never move past the last event they're able to remember. In fact, they've started going backward, and are delving back into memories of big events that happened years and years ago. I guess the one thing I'm thankful for is that Dad was spared the anger and heartache we've all lived through these last years. It is sad, however, that he can't participate in the joy now being shared throughout a country he loved and always participated in.