Month: August 2008

In an earlier entry I showcased a video which told a fictional story about a young Lisa and her mother with Alzheimer’s. In that entry I commented on Lisa’s youth. But if you watched that video, you surely noticed the mother’s age as well. She appeared in her forties or fifties. A little inaccuracy in the story, you think, right? Nobody in their fifties could get Alzheimer’s, could they? That is just a disease of old people–those in their sixties, seventies, and eighties.

Right?

Unfortunately, no. While the vast majority of Alzheimer’s victims are in their sixties, seventies, and eighties, not all of them are. And for those who suffer from early onset Alzheimer’s it can be particularly devastating for them, and their families. Someone who should have many more years of productive life are incapacitated and left depending on their spouse, or young adult children. It is hard on loved ones, not only to lose someone so early to Alzheimer’s, but because such Alzheimer’s victims can still be physically healthy–a trait which can making caring for them especially difficult. An eighty-year-old man has a lot less energy to cause trouble than a fifty-five year old man. As a result it, can be a particularly difficult nightmare to take care of someone who is relatively young and losing their mind to Alzheimer’s.

The New York Times has a very old article about just such a circumstance. It is called Another Name for Madness and was written in 1983, when everyone knew much less about Alzheimer’s. The author writes about her mother who, at 54, is suffering from Alzheimer’s.

The article begins:

In the autumn of 1979, my mother killed the cats. We had seven; one morning, she grabbed four, took them to the vet and had them put to sleep. She said she didn’t want to feed them anymore. It occurred to me that she might be going mad.

A few months later, she disappeared. When she returned, after four days, she had no idea where she had been. By now, she, too, knew that something was wrong. Over the next two years, she was subjected to periodic memory tests and physical examinations by a battery of general practitioners, gynecologists, neurologists and other physicians. Day by day, she became more disoriented. She would seem surprised at her surroundings, as if she had just appeared there. She stopped cooking, and had difficulty remembering the simplest things.

Finally, in September 1981, the neurologist who by then was in charge of the case, told my sister, Margaret, what he had suspected for some time: My mother had Alzheimer’s disease.

I strongly suggest you read the article, particularly if you are a caregiver for an Alzheimer’s patient, and especially if you are caring for someone who has early onset Alzheimer’s. The article may not teach you anything new, but it will let you know someone has gone through what you are facing. And sometimes knowing that we are not alone is what we need most.

I wanted to quickly say thank you to those who came by from Jane Gross’ NYT blog and commented. I did read all of your comments, even though I didn’t respond to them all. It was interesting to see people commenting from Ireland, Germany, and all across America.

One common thread I noticed in a number of comments was a concern about my own well-being. To those who are concerned, let me assure you that I am in good health, and I am looking after my health. I could write an entire post about how I tend to my own health–and maybe I will later–but I haven’t the time for that right now. So I thought I would briefly assure those of you who were concerned, and tell you all, “Thanks for coming by!”

The short film above, “My Name is Lisa” by Shelton Films, is a fictional account that portrays caring for someone with Alzheimer’s Disease. It won 3rd prize in Youtube’s 1st international short film competition. Perhaps some of you had already seen it. If you didn’t just watch it, I strongly encourage you to watch it now before you read my comments.

Okay, you watched it? I have a few comments.

I think it is a great short film on Alzheimer’s Disease. It does an excellent job of conveying certain feelings, some more obvious than others.

First, there is the emotional impact of discovering that the mother is sick: sick with Alzheimer’s and slipping away from the young girl. The impact of that was probably lessened for you, since I gave away what the film was about. To truly appreciate how that was pulled off, you have to watch the film the first time not knowing what it is about (as I did). There is a sense of confusion that changes to growing horror as realization sets in. Anyone who has dealt with a parent who succumbed to Alzheimer’s has dealt with that very confusion and horror in their own lives as the true reality of what they were dealing with became apparent. The film captures the essence of that discovery powerfully.

Second, the film captures the emotional arch of care-giving. Lisa starts out amused and bemused by her mother’s antics, but that quickly changes. Frustration and fears begin to mount, along with emotional exhaustion. Any caregiver recognizes this progression. I think the incident where Lisa blows up at her mother during the pizza delivery is particularly painful to watch because it stands in for the places and times where we have each failed in this way–either thinking, or even saying the equivalent of, “Why can’t you do it? You can’t do anything!” Each of us has felt some of the secret shame after such actions–as sure as the mother’s sad uncertain smile comes–because we know how wretched they are in their inability, and our anger and unkindness becomes like an awful accusation of our own failures. And anger cannot stave off the loss, personified when Lisa’s mother asks her, “Who are you?” For someone caring for their parent there is perhaps nothing more crushing than the sense of loss when Alzheimer’s finally robs them of the parent-child relationship. But that is not the end. The final step in the emotional arch comes as the film draws to a close and we see Lisa and her mother eating sandwiches. Acceptance and peace has been reached, the end every caregiver should hope and strive to reach. As Lisa says, “It’s okay, Mom.”

Finally, I think a lot of people get hung up on the “unreality” of a young girl caring for her very incapacitated mother. I think such fixation misses the powerful symbolic value of the film’s portrayal. Many adult children caring for their parents have, at one time or another, felt like little children again in the face of their parent’s dissolution. The enormity of the thing faced makes us feel small again. I am certain many adult daughters have felt like little Lisas, alone, afraid, and overwhelmed in caring for their parent. Choosing a young girl to portray the caregiver conveys this sense very well. A caregiver can look and say, “Yes, that was me. That was what it felt like.”

In care-giving, sometimes we are all like Lisa.

Last Wednesday . . .

It happened suddenly, unexpectedly, as most disasters do. A great crash–like one expects to hear when an entire bookcase collapses–sent me rushing out of the bedroom. I found Grandma sprawled on the hall floor, a container of greeting cards scattered everywhere. For the briefest microsecond, it is as if everything is suspended. What, why, how, and how bad?

A quick glance shows no obvious blood on the floor, no clearly broken bones. Grandma is conscious, and, if looking a bit stunned, does not appear to be in any significant pain. A flicker of relief, then, grasping the conclusion that no bones are broken and no critical crisis has unfolded. But still, why the unexplained fall? A sudden stroke?

“What on earth happened?” I asked, over-loud in my alarm and relief.

“I stumbled on the top step coming up the stairs, and hit my head,” Grandma said, clamping a hand to the front of her head and making it to a seated position. “I’m all right. Am I bleeding?” She took the hand away to look at her fingers. “Yes, I’m bleeding.”

I came over to look, feeling both greatly relieved that she did not appear seriously hurt, and still appalled at how loud a crash she had made hitting the wall. A quick look at her scalp modified my assessment. Thick red blood welled up from a gash that was no tiny scape. Oh, great, I thought. Though clearly not a serious wound, it was not something that could be covered over with a little band aid. As a scalp wound it would be–in short order–bleeding profusely. I needed to get something to contain the blood (quickly), prepare for the possibility of a panicked Grandma, and figure out how I would get her to the appropriate care.

Because–of course!–this had to be one of the few days in the year when the car was in the shop for repairs and we were without a vehicle.

I launched into action, trying to think, take care of Grandma, and answer her questions all at the same time.

Ice pack and washcloth for the head first. “No, Grandma, it isn’t serious. It’s just a scalp wound that will bleed a lot. No big deal.”

Go to the emergency room? Call an ambulance? I’m already familiar with the ambulance and emergency room routine from past experience, and I’m loathe to take that path unless I must. It is expensive, and time consuming, and Grandma hates it as much as I. First I call Doug to see if he can take Grandma to the emergency room, or a walk-in clinic. Nobody picks up the phone. I know Grandma is growing increasingly agitated as she discovers the growing amount of blood, and wants assurance that everything is being taken care of. I call Mom and Dad. With a thirty-minute drive, getting help from there is less than ideal, though the one sure standby. In a few short minutes Dad is on his way down, and Mom and I have agreed that a walk-in clinic is a better idea than the emergency room.

I explained to Grandma the plan of action, and stress to her that it is fine and there is no hurry, and it is okay for us to wait until my Dad arrives. I sensed she was trying to not panic. By this point she has two handfuls of blood and wanted me to help her get off the carpeted hall floor so she wouldn’t drip where it would be difficult to clean. I got her up and seated in the kitchen. By this point the bleeding had slowed, and would soon stop, and a ride was on the way to take her to the clinic. As far as I was concerned, everything was under control and set. But I realized Grandma might not feel that way.

“Dad will be here shortly and it is all right for us to wait,” I told her. “But if for some reason you want to go right away, I can see if there is some neighbor home that will take you in.”

“Okay,” she said. “Well, maybe you better, because I’m concerned about all the blood I’m losing.”

Two handfuls of blood was nowhere near a dangerous amount. If you donate blood you give more than that. But if you don’t understand that, or are panicked by the sight of blood, all the assurance in the world won’t help. I understood her sentiment, and as much as I didn’t relish knocking on neighborhood doors, (Would you mind driving my Grandmother to the clinic? Is it okay if she gets blood on your car?) I dutifully complied.

I probably would not have made inquiries if I had never spoken with any of the neighbors previously. It wasn’t a true emergency, and I didn’t want to make that much of a cold call. But as it happened, I had spoken in passing with two different neighbors who–on learning of the elder care situation I was in–had both graciously offered, “If you need any help with anything, just ask.” I would never want to ask a briefly met neighbor to bring my bloodied grandmother in to get stitched up–but they had offered “any help” and, well, now I was asking.

One of the neighbors didn’t appear to be home, so I went trudging up the street (not so much as knowing their name, much less their phone number), taking the parked truck as a good sign that the second neighbor was home. It was mid-afternoon and the front door was open to let in the fresh air, revealing the middle-aged neighbor lounging on the couch, perhaps just home from work. It felt awkward, to say the least. I knocked on the door and quickly plunged into an explanation, trying to not think about how much of an imposition I was creating, or what he was thinking. Thankfully, Art, (as I later learned was his name,) did not look horrified or as if he really regretted his previous offer. Saying he needed to pull himself together and would be down shortly, he quickly agreed to help.

I returned to Grandma and began the hasty preparations to get her ready to go–mostly consisting in trying to dig up her insurance cards which were in “some purse.” Shortly, she was on her way to get four staples in her scalp which would hold an approximately 3-inch gash shut.

She left for the clinic, and in the silence of the house I let out a mental breath. In the end, only a small disaster. It was nothing. It could have been much worse.

And it is nice to have good neighbors.

If you are new to this website it means you have probably come from Jane Gross’s post about me over at the New York Times. Welcome!

If you would like a quick overview, you can take a look at the about page. That is a good place to start.

You can also go directly back to the first post, and start reading the story of this adventure from the beginning. Reading in chronological order makes the best sense.

If you don’t have time to read through the entire story contained on this site, there are three posts which pretty well sum things up. They are, in order: The Next Great Adventure, Full Circle, and No Going Back.

I can’t promise how often I will post updates, but if you would like to keep following this story as it unfolds, you can subscribe to my rss feed on the sidebar, or subscribe by email.

If any of you are interested, you can contact me by e-mail, or leave a comment on this website. Please be aware that I am still caring for my Grandfather 24/7 so I will not be able to respond to many comments or e-mails (if any at all). I trust you will understand. But I will enjoy hearing from any of you, even if I can’t respond.

I hope you find the story contained in this website interesting, and perhaps even encouraging.

Thanks for visiting!