Alzheimer’s

Nobody Brings Casseroles

Recently, another friend got in touch because she heard of Mom’s diagnosis. She was telling me that a friend of her Mother’s recently died with Alzheimer’s, but that no one really knew what was going on until the woman was too lost within herself to visit effectively.

When my Aunt Jane was diagnosed, I didn’t stay away on purpose, at least not at first. Her disease progressed rapidly, though, and she was dead three and half years after a diagnosis of frontal lobe dementia. My Dad kept me abreast of her decline and I realized fairly early on that the chances that she wouldn’t recognize me were pretty high and that wasn’t a reality I was prepared for. Not visiting her was a shitty thing to do, to her and myself and, especially, her family. But as we’ve learned, I don’t always make the right decisions, more frequently the selfish ones.

I think I’m learning, though, that dementia and, especially, Alzheimer’s (the word seeming to make all things worse) make selfish normal. People hear of Mom’s diagnosis and call me, not Mom, because it’s easier and they’re afraid of how they might find her. Mom doesn’t want anyone to know because of pride, which is a selfish emotion. So in the end, she is more alone. No one visits, no one offers help, no one brings casseroles.

Slowly, people will, of course, find out. Alzheimer’s is too big a secret to contain. But I suspect by that point, she will be past the need for casseroles and into the need for Mom-sitting. She will need less conversation and more listening, more simple companionship. And that’s a shame. Because now is the time when people could wring out their last memories of her. Now is the time for coffee and shopping, for singing with her at church, for a glass of wine in the afternoon, even if a little guidance is required. Now is the time to say, “Hey, I know your mind isn’t what it used to be, but that’s ok, I’m here and I’ll continue to be.” She won’t remember that for long, not when you’re bringing casseroles to her husband for a little respite care. I just wish that everyone, perhaps Mom especially, could put aside selfish long enough to make room for gratitude and love and friendship and all the good we could be doing now to give us things to hold onto later.

Loss

I was watching a Sports Center Special this morning and heard this question: “What would you do in the last hour of your life?”

I’ve been thinking a lot about death recently. One might think my focus would be my Mom as Alzheimer’s very slowly takes her. But it’s much more mundane than that. I’ve been thinking about our cat, Cas, and how my daughter, who is in loving obsession with her, will handle it when Cas inevitably dies.

I know, I know: don’t borrow trouble. I’m a worrier, a condition would could via psychology be traced back to events in my life, but which is more likely a property of personality. I was reticent to get a pet. I remember how painful the death of my childhood pet was and wanted to protect my kids, my overly sensitive Sweet Girl especially, from that eventuality. But here we are, in a place where she is so completely attached that I fear Cas’ death will overwhelm her.

At this point, I think my Mom might die before Cas. Strangely, this doesn’t worry me as much, perhaps because we have time to prepare. Perhaps because she will go so slowly and in such a painful way, for us anyway, that we will be relieved when she goes.

Or perhaps it’s because Cas’ death is smaller, more manageable. Her death will happen, be managed, and pass. Whereas Mom’s death will linger, for the rest of our lives. I remember where I was when my Father told me that our cat died, but the aftermath is lost. The aftermath of my Grandmother’s loss still lingers. And that’s the difference.

The question this morning struck me: “What would you do in the last hour of your life?” If given a choice, I’d be with my kids, doing anything they wanted. Unfortunately, we usually don’t get to know that it’s the last hour of our lives. We may know with Cas, but we may not with Mom. In either case, I’m not sure it will matter. Their losses will be deeply felt, possibly with relief, in both the short term and the long. And whether in the longest hours or the last of my life, I will be there for my children, helping them through.

Silver Linings

Over the past couple of days, I’ve received my brother, Cool Dude’s, report on his visit with Mom and Blue Man. His verdict on Mom, that she is unable to care for herself, was not very interesting or surprising, though satisfyingly vindicating. Let’s be clear that I wish I were wrong, but the facts are the facts and having him see her first hand, witness what I’ve been saying, understand and regurgitate my verdict was a relief and the sort of, “See? I told you so,” that siblings often need.

What was very interesting and in some ways surprising were his conversations with Blue Man and the conclusions reached. Blue Man and I have had a very complicated relationship through the years and I won’t go into that now. Suffice it to say that Mom’s illness is bringing us back together and we are finding ourselves allies, becoming friends. Yet I don’t talk to him about the big stuff unless he brings it up. He has a temper and I am unwilling to rouse it. My brother, however, can have desperately needed discussions with Blue Man without poking the dragon. I think part of it is a male thing as my Aunts drive Blue Man insane, too. That’s neither here nor there, though.

Through the brief times Blue Man and I have discussed Mom, when he has brought it up, he has said she is doing well, her only issue being confusion over dates and times and a problem operating the microwave. With my brother, however, he went into much more depth, revealing a lack of denial in which I was afraid he was living. This is all very good news. The question is what he will do about it. Will he work to get them moved out of their huge house and into the retirement facility where they put money down years ago? The very nice place they chose to spend the last years of their lives? The place with a well appointed memory unit? Or will he continue to let Mom call the shots and have the process drag on to a crisis point at which we may have to take over?

Mom is having knee surgery in January, something I believe she needs, as I am fully behind the idea of quality over quantity in end of life scenarios, but something which I’m almost certain will worsen her Alzheimer’s. I hope that Blue Man is ready to deal with further decline and take stronger action in moving if the worse case scenario happens, if she becomes too bewildered to be of much help in the decision making process for things from what to do with the china to where to place the couch in the new place.

I’ve never been very good at silver linings, I will admit. But if there is one here it is that my brother and I are communicating and working together. We have never been very close, the twelve year age gap making me always feel closer to my cousins than to him. I think my roles as the younger sibling and the sister have always made me yearn for a closer relationship while his life as a well-respected academic, with no kids, who travels all over the world with people telling him how awesome he is has left little room nor need for a kid sister. Now, however, we are coming together, as I think so often happens, to care for our Mother and I am thankful for whatever relationship we are forging. I am also thankful that Blue Man and I are repairing our relationship, however tenuous, and that my Aunts and I are growing closer through this process. Having a parent with Alzheimer’s is unbelievably difficult. In the middle of the pain and grief, however, some good things can come.

Approximations

A couple of months back, Little Dude got this dragon cake pan from Think Geek. I can’t remember the circumstances, some Black Friday deal, I think, but as the ins and outs of making a tasty cake without frosting were daunting to this not-so-great-baker, we had yet to use it. But last night, I had an epiphany.  I could use my rum cake recipe, with which I make our annual Christmas morning breakfast (hey, you booze your way and we’ll booze ours) to make one cool dragon!

So this morning, up at 4:30 to start cleaning and baking, I made two rum cakes: one the traditional bundt with cherries and pecans on top and one with Dude’s dragon pan. I was so excited to do something *so fucking cool* for him on Christmas Eve! I pulled it out of the oven, inverted it, and …….. well god dammit, it looked like a blob. After much consideration, I have decided this was my fault (duh). I layered the bottom of the pan with butter and brown sugar, as I always do with rum cake, and I’m sure the brown sugar took away the fine detail of scales and wings and other features, leaving only hints at what the cake might have looked like. In the end, Little Dude sort of grunted in the general direction of the cake and went straight for the banana bread, anyway. Figures. At least Sweet Girl liked it. I think it’s half gone already.

As I sit here having my I-got-all-my-cleaning-done-three-hours-before-company-gets-here beer, I’m reflecting on the cake and thinking about how it’s such a great metaphor for my Mom right now. She’s been calling me several times a day, using me much like that brown sugar, as a buffer, not between batter and a pan, but between her and my brother. I’m much more comfortable for her. I make her feel more grounded. Whereas my brother, who is visiting with her, makes her feel more unstable, more confused, more like she really has Alzheimer’s. He escapes her crazy by running errands; he must have been to the grocery store four times each day. And each time he goes, she calls me.

Mom has always been the strong one, the social butterfly, the family rock, the Matriarch. And now, she’s going squidgy on the edges, needing support and reassurance and a touchstone. Just as my mistake made the dragon an approximation of itself, so the Alzheimer’s is making my Mother an approximation of herself. For now, I’m actually thankful for the approximation, for one day I won’t even have that. At least she calls, at least she needs me, at least I know, for now, that she loves me and those are the lifelines I will cling to.

In our atheist house, we still say Merry Christmas, though we acknowledge that we really  celebrate the Orgy of Greed. Whatever you celebrate, may I say Happy Holidays, from now until next December 24.

 

Rum Cake

  1. 1 Yellow Cake Mix (I like Duncan Hines, but whatev)
  2. 1 box instant vanilla pudding (the small one)
  3. 1/2 cup each cold water, vegetable oil, rum
  4. 4 eggs
  5. 1 stick of butter
  6. 8 or so maraschino cherries
  7. 1/2ish cup light brown sugar
  8. 8 or so pecan halves

Pre-heat oven to 350 degrees F. Cut up the stick of butter into smaller pieces, put in a bundt pan, and put the pan in the oven until the butter melts. When the butter has melted (fiveish minutes), take the pan out. Place one pecan, flat side up, in each of the larger wells in the pan. Place a maraschino cherry in the smaller wells so that the pattern alternates, pecan / cherry / pecan / cherry / etc. ALTERNATELY … if you don’t like cherries (even though they’re pretty for Christmas), just sprinkle chopped pecans all over. Carefully sprinkle a half a cup or so of brown sugar on top of cherries and pecans. This is the glaze that will hold them in place. I’ll use as much as a cup if it seems like I need it. If you’re using chopped pecans, just use 1/2 cup.

Mix all cake ingredients, cake mix – eggs, until well blended. Carefully pour over nuts and cherries. Bake in pre-heated oven for 45 minutes to an hour until toothpick comes out clean. Invert onto plate immediately. Serve warm or cool. Store at room temperature.

 

Perspectives

As we get closer to Christmas and my Mother by turns frustrates me, makes me angry, and amuses me with her forgetfulness, confusion, and personality shift from sweet Southern lady to downright bitch sometimes, it seems everyone has his or her own perspective on how I should deal with her.

Big Dude wants to solve every problem. This is who he is and I have to respect that. He’s very type A, a former Navy pilot, and a fixer by nature and training. He gives advice problem by problem on how to lessen the burden on Mom and on me. I love him for it, but sometimes it makes me want to throw dishes at his head. Sometimes I just want him to listen and sympathize. There are no answers to this, I think, save patience and maybe a bottle of wine.

Cool Dude, my brother, wants to me cut her off at the pass. He wants me to tell her that we’ve already talked about things, but to me, that still leaves her without answers. It’s not her fault she doesn’t remember. He wants me to tell her, when she’s being a bit nasty, that I won’t listen until she can be nice. This I understand. And yet I feel like I owe her for all of the years she’s dealt with my bipolar disorder. He gets that, he does. But he and Mom have a different relationship, one in which he could say to her, “Back the fuck off, Mom, you’re being a bitch,” and she would. Because she thinks if she makes him mad, he’ll disappear. He’s spent so many years barely present in her life while I’ve been there, almost every day.

My daughter’s therapist, whose own Mother has dementia, suggests I take the, “That’s interesting, Mom” approach when listening to my own Mother talk. I actually did this yesterday when Mom told me that they had put up their Christmas tree the day before. The tree’s been up for a good ten days to two weeks. “Oh, nice Mom, that’s cool.” So I changed the language a bit, but the spirit was there. I think this one could work.

I think one lesson is that I’ll have to find my own way, maybe drawing pieces from everyone’s advice and maybe just forging my own path. But I find myself needing to vent, especially when I get so frustrated by things Mom and I have gone over a million times and that she still gets confused about. I know in those moments people will still offer advice.

Another lesson here is that I need to do more listening and less advice giving. When friends vent about their marriages or kids or their own parents, I need to just sit and listen and be with them in that space more. I admit I’m a fixer, too, but maybe I need to ask if they want advice before I jump in with it. Maybe I’m as guilty as Big Dude and Cool Dude of offering solutions when an ear and shoulder are really all that’re needed.

Purple Lady, Big Dude’s Mom, is headed here in a couple of days to spend the Holiday. She’s a retired social worker and not shy about giving advice, though in the most passive aggressive way possible.  I bought four bottles of wine yesterday. I might need more. Donations welcome.

Room to be Angry

For a couple of weeks now, my Mother and I have been discussing two gifts from Sephora that I sent to her house, one for her and one for my brother’s girlfriend, whom I call Canada Girl. Each gift was wrapped identically, in Sephora gift boxes, black and gold striped beauties that each came with gift cards, in separate shipments about a week apart.

Let me be clear that Mom’s confusion over which gift belonged to whom was probably my fault. I should have known better than sending two gifts wrapped identically when she is getting more and more confused about things. It didn’t occur to me, honestly, that with gift cards included, the question of ownership would be such a difficult one. I could not have been more wrong.

Mother has questioned me almost daily about these boxes. We have talked on the phone, texted, and emailed about this issue. I finally sent her an extremely detailed email explaining how to determine which box belonged to her and which to Canada Girl. Finally, on the phone yesterday, I lost my cool when she told me that she had opened each box. Her excuse was that the gift cards were inside the boxes. This is not the way Sephora (or any other company) does things. At some point, she must have done this herself to try and keep the gifts straight and then forgotten. The end result is that she has opened one of her Christmas presents and with that news, my frustration boiled over.

I didn’t yell at Mom, I didn’t cuss, but she could clearly tell that I was frustrated. She could plainly hear the impatience and annoyance in my voice. I was simply maxed out. And then, then, she asked if she should wrap the gifts because the boxes, while beautiful, were black and gold, colors she clearly doesn’t associate with Christmas. I had to get off the phone and fairly abruptly ended the conversation.

About thirty minutes later, I got an email from Mom. She apologized for her confusion over the Estee Lauder boxes, which only made my frustration worse. She then asked if she should have Canada girl take her box home, leave it at Mom’s, or toss it. I immediately called my brother and left him a message telling him that I really don’t care what Canada Girl does with the box; she can do a ritualistic burning in the backyard for all I care. I’m just over it.

I’ve said before that I always judged people who got angry with their loved ones with Alzheimer’s, but that now I completely understand. I also realize that the healthy thing is to give myself room to be angry. But it’s a hard thing to do. I feel traitorous. I feel ungrateful for all the years Mom has borne my own mental illness with patience and grace. I feel like the worst daughter, unable to repay her years of steadfast love, knowing this will only get worse.

Minor Victories

I had a minor victory yesterday. Mom and I had a discussion about her Alzheimer’s and she neither shut down nor got angry!

Mom’s having knee surgery in January. This is her second knee replacement and it’s something she must do to relieve every day pain. Her doctor and I have discussed that the general anesthesia is almost certain to make her more confused, in other words, make her dementia worse. It’s his belief that she should go back to “normal,” whatever that currently is, after about a month.

I discussed this with her yesterday, asking her to make sure that she discusses this issue with both her orthopedic doc and anesthesiologist. She listened and simply said, “Ok, I’ll be sure to do that.” There was certainly an edge in her voice and tension developed in the conversation, but she didn’t shut down nor did she fuss at me. So that was a victory!

I believe firmly in quality over quantity in end of life scenarios. I don’t know how many years we have with Mom. It could be three it could be twenty. In any case, she needs this surgery to have quality of life and that’s what’s important. And we need to be friends. Having conversations like this and coming out the other end on a positive note is exactly what I need.

Things to check out: This article on post-operative delirium for patients in general, with a section on dementia patients, specifically.

Book recommendation: The Other Brain: From Dementia to Schizophrenia, How New Discoveries About the Brain Are Revolutionizing Medicine and Science by R. Douglas Fields  Research on glia. Not super fast reading, but worth it.

Music for this post: The “Great Piano Concerti” Prime Playlist at Amazon.com. Because Mom would love this and I do, too.

Sandwich of the day: Classic chicken salad in a pita. Something Mom and I could agree on. If you have a Publix, Lowe’s or Costco, you know you can get some good Chicken Salad there. No need to make your own!