The Visit from Mom

My mom was with us for a week. I've been trying to get her to do this for a really long time, to come down to see us and stay for longer than a couple of days. Mom is nearing 90 and shouldn't be living alone in her little cottage, really, so I'd hoped she would decide to stay indefinitely at some point. Though, of course, she is steadfast in her determination to die in her own bed and in her own house, as so many folks are.

So, she came down for the baby shower [see The Nana Diaries] and planned to go back home after "Bob's 4th of July Party" on July 7th. I "took the week off" from my paying job.

Here is what I learned about the feasibility of caregiving for two adults, one with a memory impairment due to Alzheimer's, the other with regular, run-of-the-mill aging issues (lack of good balance when standing or walking, for instance, and refusal to use a cane or a walker, but willing -- on very special, few-and-far-between occasions -- to be pushed hither and yon in a wheelchair). It can't be done 24 hours a day by one person.

By the end of the week, I was ready to run away from home. Not only that, but I was desperate to go back to work. Now, I ask you:  Is that normal? I was exhausted physically, mentally, emotionally, and every other "ly."

Because my mother was visiting, I went out of my way to plan interesting and pleasurable outings for us. Most were mainly for Mom, since she rarely is able to come down to see us. She's always wanted to see Filoli. She loves to window shop in high-end stores (Broadway Plaza), and one thing she unfailingly wants to do is to go to the beach to hear the ocean roar (Muir Beach). Things that would be a change of pace for my husband as well as being entertaining for all.

My husband was increasingly confused, asking the same questions over and over. "Where are we going?" "Why are we going there?" And then again. He was more agitated than normal, and more on edge than usual. There was some shortness and irritation, especially towards the end of the day when we were all tired (Is this "sundowning?"). And he became an attention hog. He was showing off for my mom, as well as being progressively more negative as each day passed. He seemed jealous of the time I was spending with my mother. The week was capped off with an explosive outburst at Bob's party that helped me to understand that, sometimes, the person in my husband's body isn't exactly the guy I married. Or maybe he is, but without appropriate filters to modulate behavior. His worst attributes were on display without the benefit of his wonderful side's veneer.

When Mom left for the ride home on Sunday afternoon, it was like someone had waved a magic wand over my husband. Relative calm returned to our home, along with good humor. I guess what they say about routine and maintaining a schedule and not doing too much bears consideration. Either that, or the 21 days of prayer and fasting for breakthrough at the church, which ended the day Mom left, have produced...breakthrough. I hope so!

I see now that under the current circumstances, Mom would have to be crazy (or desperate) to agree to move in with us, especially since she cared for Dad all those years when he had dementia. This makes me sad, because I wanted so much to do this for her. But why would she willingly come and watch me deal with what she dealt with, reliving all those memories over and over in living color? How unhappy would she be?

I'll continue to visit her regularly, as I have been doing, as long as possible. And I'll let her make her own decisions about what she wants to do and when she wants to do it. She's amazingly strong and sharp and resilient. And she's a grown-up. I love you, Mom.

UC Davis Study Update

Yesterday afternoon, we went to Sacramento for the second PET scan at UC Davis Medical Center. Why UC Davis Medical Center is in Sacramento instead of Davis is anybody's guess, and it's confusing for my husband. As we drive past Davis on the way to Sacramento, he always wonders why we aren't taking the freeway exit to the university.

I'm pleased to report that it all went very well. We've completed both PET scans and an MRI, and now we get to take a breather until next month. We are hoping that somewhere down the road, someone will benefit from all of this. Researchers are working so very diligently to identify markers, a gene, something on which they can concentrate preventive care. And, who knows? A cure later could be the result of a breakthrough today.

As stressed as I felt in my last post, it's truly amazing what a good week we've had. I am so thankful for rest, for encouragement, and for the prayers that I know are holding us both up. I am believing that this evil report regarding my husband's health will be completely overridden and invalidated by a miracle. That is my hope.

The Diary

"Keep a diary," the fact sheet says. It's supposed to relieve stress and keep things in perspective. The only problem is, I find myself simply incapable of sitting down here at my trusty computer and reliving the anxieties of my day. To put them "on paper" is to acknowledge them. To acknowledge them is to surrender to the diagnosis. Oh, I know that isn't truth, but it doesn't matter. It feels true right now. And that's why you're not hearing much from me.

I suppose this means I am still in the "denial" phase of my mourning. But I'm not. Not really. The fact is, I am about 1/4 inch from tears at any given moment as I try to wrap my head around what tomorrow might be like. And the day after that. I suppose it isn't good to dwell on the future, but how else am I supposed to plan? And the fact sheet says I'm supposed to plan.

So, I've told my kids that the study center wants his brain when he's done with it, so it can be studied. And I think of Henrietta Lacks and the HeLa cancer cell research. They've assured me that it's just going to be an autopsy, and they don't plan to do any ongoing research with the brain cells. But what if they do? Will his brain still be around long after I'm gone? I hope the research they are doing will help someone. I really do. Because answering the questionnaires on Tuesday was just about all I could do. I admit it:  I broke down.

You would, too, if they asked you to compare your loved one's capabilities now with his or her capabilities ten years ago. Ten years ago, everything was just fine. Ten years ago, the future was bright and shiny. Ten years ago, he was working as a middle manager for a huge corporation and directing the work of others. Ten years ago, he was...himself. Maybe the future questionnaires will be easier to handle, because they'll compare last month to this month, and the changes will be incremental rather than dramatic. I hope so.

Oh! I used that word. Hope. Yes, I do still hope. And I hope I can continue to do so. For all our sakes.

The Study @ UC Davis

We heard about a study done by UC Davis that is tracking Alzheimer's patients over a 5-year period in an effort to follow the progression of the disease. There are lots of PET scans and MRI's and cognitive tests and so forth involved, and it looks as though my husband has been selected for the study.

We know there's nothing in it for us, necessarily, except that feel-good feeling that you get when you help other people. But, who knows? Hopefully, they'll find out something that's key to discovering a cure for this terrible mess of a disease.

Yesterday, they started all the preliminary stuff. Blood work, baseline this and that and the other, interview him, interview me, compare the interviews. Let's just say it was fairly dismal and bleak.

Psychologically, in fact, it was very stressful for me. I think this is because I'm being forced to face the music, so to speak. I don't think I've been in denial (not just a river in Egypt) at all, but I do expect a miracle. Just because nobody else does, doesn't mean I can't. Or shouldn't. Right?

I believe in miracles. I believe in hope. I don't believe in accepting something just because everybody else thinks I really ought to, or because the odds are extremely unfavorable. My mom used to tell me that I always do things the hard way and am very bull headed. Well, I guess this is one instance where that'll be a good thing.

The Blues

The Blues

Caregivers all over the world:  Unite! Okay, whatever. Some days, the best you can do is try really hard to not think about how things could have been "if only." And this is one of those days. Bittersweet memories. Dreams dashed. A bleak outlook. The blues. So very close to despair.

Which reminds me of my favorite line from "Anne of Green Gables":  Says Anne (who has a flair for the dramatic), "I'm in the depths of despair. Don't you ever despair, Marilla?" Replies Marilla as she hurries up the stairs, "No, I do not. To despair is to turn your back on God."

Today, the pastor spoke about how God does not distance Himself from us; rather, our deception leads to performance that is never good enough, which leaves us trying to hide ourselves from God (good luck with that). We turn our backs on God; He never turns his backs on us. And so, I will not despair. I choose to hope. He has always been there for me, and He always will be.

The Support Group

Today, I dropped my husband off at the VA Clinic for his weekly memory loss support group. He's been attending this for over a year, each Tuesday. He likes to complain about having to go, and who hogs the conversation, and who is too loud, and who always arrives late...but he won't miss it if he can help it. He doesn't think it's really helping him so much, but it's "good for the others" to have someplace where they can meet and discuss their various issues. Some have memory loss due to disease, some due to accidents, some due to stroke or hemorrhage. But the camaraderie is valuable. It helps to know you're not the only one.

And so, today, we had our first meeting for caregivers. Just the caregivers of these particular patients, just so we can keep it real and keep it "in the family." We're going to meet once a month.

There's a Starbucks nearby, and we set up our little group at a small table. We will get bigger, I'm sure, but three is a great place to start. We shared our stories...the story of discovery, and the story of the event, and the story of the trauma. And, even though our guys (It's only ladies in "our group" so far) are each suffering from different things, there's much to share and much to have in common.

I'm looking forward to walking alongside these ladies as they walk alongside their husbands. I'm proud to know them and to be able to be in their company. They are amazing, strong, resilient women.