Stress? What stress?

Posted on September 11, 2011 by Jim

It’ll come as no surprise to anyone that care-giving is stressful.

But what does that really mean? I mean, in terms of what it does to you?

Following my care-giving for Martha Sr, I spent a lot of time “recovering” from being a long-term care-provider. Here’s an excerpt from something I wrote about 6 months after her death:

A month ago I wrote about slowly coming down from the prolonged adrenalin high which was being a full time care provider. Doctors have known for a while that such long term stress was hard on care providers. It’ll drive up blood pressure, screw with your sleep habits, and even compromise your immune system. Now they have started to figure out how that immune system mechanism works. Last night I caught a piece on NPR’s All Things Considered with UCLA professor Rita Effros about her research on this mechanism. What professor Effros said (no transcript yet, so this excerpt is my transcription):

So, in the short term cortisol does a lot of really good things. The problem is, if cortisol stays high in your bloodstream for long periods of time, all those things that got shut down short term stay shut down. For example, your immune system.

…

But let’s say you were taking care of an Alzheimer’s spouse, or a chronically ill child – those kinds of situations are known now to cause chronic, really long-term stress – let’s say years of stress.

…

(These care providers) were found to have a funny thing happening in their white blood cells. A certain part of the cell is called the telomere, which is a kind of a clock which keeps track of how hard the cell has been working. Their telomeres got shorter and shorter, and it has been known for many years that when cells have very short telomeres they don’t function the way they’re supposed to function.

There’s a lot more there, with additional links to various health studies and whatnot, but basically it’s been shown that care-giving of this sort increases the rate at which your body ages.

For me, that translated into several concrete health changes. I now have chronically high blood pressure (under control with medication), whereas my bp was ‘perfect’ before we started care-giving. I put on about 60 pounds, and have been struggling in the three years since I wrote that passage to get it back down. It took a full year for my sleep habits to even begin to return to normal. Et cetera.

I don’t want this post to be about me – just to use myself as an example of what happens to care-givers. It’s a sacrifice that we willingly make, though we may not know fully what it is that we’re doing to ourselves. And all I can say is that all care-givers should keep this in mind, and do everything they can to manage the stress they are under . . . whenever possible.

Jim D.

(This has been cross-posted from Daily Kos, with some minor changes. The full blog entry cited can also be found in the section of Her Final Year titled ‘His First Year’ which is about care-giver recovery.)

One for the record books.

Posted on September 10, 2011 by Jim

There’s been a number of comments on Twitter from people involved with care-giving cautioning about all the 9/11 coverage in the news this weekend, and the effect that it can have on someone who suffers dementia. Because if someone has dementia, they may not be able to differentiate between the retrospective coverage and what is happening in the world now.

It’s a very good point — you’ve gotta be careful. It’s not in the book, but we ran into this problem with Martha Sr fairly well into the progression of her Alzheimer’s on several occasions, until we figured out what was going on and started being *very* careful what we watched with her. One specific instance comes to mind…

Martha & Martha (my mother-in-law and my wife) had been watching some BBC-produced Soap Opera one evening. As was usual, following that Martha Sr would sit and ‘read’ for a bit before we got her ready for bed. When my wife went in to get her, she found her mom sitting there, a very concerned look on her face.

“Mom, what’s wrong? Are you OK?”

Her mom looked up, brow furrowed, eyes sharp. “I’m worried.”

“Why, what happened?”

“I think I might be pregnant.”

Jim D.

Giving permission.

Posted on September 9, 2011 by Jim

It may seem a bit strange to someone who has never been through it, but often someone approaching the end of their life almost needs the ‘permission’ of the living to go ahead and die. The hospice literature covers this, and it makes emotional sense. However, when you’re dealing with someone who suffers from some kind of dementia, you can never be sure how this will manifest or how to respond to it. From the chapter November: Endgame, taken originally from a blog post I wrote about three weeks before Martha Sr passed away, this excerpt deals with this directly:

“My mother has passed on, but Auntie has taken over for her,” said Martha Sr.

“Auntie?” asked my wife.

“Yes, Auntie. She has taken over for my mom. I was waiting for my mom to come for me, but she’s passed on, so Auntie has taken over . . .” a pause, uncertain look around the room. “. . . everything.”

“Well, OK.” My wife looked at me. We’d been waiting for this. Together, almost simultaneously we said, “Martha, if she comes for you, you can go with her. It’s OK.”

“It’s OK?”

“Yes, when Auntie, or your mom, or your dad — when they come for you, you can leave with them.”

“I can?”

“You can indeed. Until then, we’re taking care of you here.”

“But if they come, I can go?”

“Yes, you can.”

That wasn’t the only time something like this happened, of course. For months prior to her death Martha Sr was using “traveling” metaphors – taking a train, flying, going on a trip. In almost no instance was she really consciously aware (that we could tell) of what she was trying to say – these were just very natural and familiar terms to her. Thankfully, hospice had prepared us for how to deal with it – just another reason why working with a good hospice was truly a blessing.

Jim D.

Shelter from the storm.

Posted on September 8, 2011 by Jim

We usually think of the end of life for someone with Alzheimer’s as being nothing but a difficult, frightening time, filled with medical instruments and professionals, possibly in a hospital or nursing home. And it may well happen that way. But it doesn’t always. Here’s a passage from the chapter December: Passing that was taken from a blog post about a week before Martha Sr died:

The last few days have been oddly quiet. Martha Sr has slept most of the time, for all but 3 – 4 hours each day. My wife and I move through the house as silently as possible, even chastise the cats and the dog if they get noisy. We want her to have whatever peace and quiet she can.

When she is up, she is confused about where she is, who we are. We roll with it the best we can, though sometimes we’re caught off balance and react poorly. At least a couple of times we’ve played the “oh, here, let me call your mother” game again.

Today at lunch she was worried about where she had left her purse — she was concerned about how she was going to pay for her meal. I told her it was all taken care of, that she didn’t need to worry. She looked at me with such gratitude, the thanks not given a son-in-law of 20 years, but rather of someone offered unexpected shelter and food by a stranger on a long and difficult journey. Then we watched a squirrel play, and she laughed.

Yeah, it was sad, losing her. But not exclusively so. Hospice helped us find that, made it possible.

Jim D.

“Closure.” I’ve never liked that term.

Posted on September 7, 2011 by Jim

Ever. I’ve lost family and friends, gone through breakups and breakdowns, been hurt and been healed. And the idea of “closure” – that something is now done and in the past, makes little sense to me. We are a conglomeration of the experiences we’ve been through, how we’ve reacted, what we’ve learned. In some very real sense, we are the scars we carry, and we should be proud of that. My good lady wife of 24 years agrees with me on all of this.

But something happened this weekend which carried with it something of the notion of closure. It was just a manilla envelope which came in the mail. From the attorney of Martha Sr’s estate.

* * * * * * *

From the introduction to the ‘month’ of April:

Martha Sr and her husband Hurst had moved into their home in the early 1950s, and had raised their family there. It is a classic 1880s historic home, and still retains a lot of the original character. She loved it, and naturally it contained a wealth of memories for her. This was the primary reason why Martha Jr and I moved into the home to care for her as she started to become frail — she couldn’t stand the thought of leaving it.

But she was also worried about what would happen to the home after her death, and on multiple occasions told Martha Jr that she wanted her to have it — her two other living children were well established in their own homes, one of them (Martha Jr’s sister) out in California. I think that she was worried that when the time came to divide up her estate, the house would just be sold and the proceeds split among the siblings. So, she changed her will to specify that Martha Jr should receive half ownership of the house right off the top, the rest of her estate then divided in three parts.

But this was a somewhat dicey move, since she was already exhibiting some signs of the effects of Alzheimer’s. Still, the long-time family attorney went along with her wishes, and made the changes.

Then over the last several years of her life, she would repeatedly ask what was going to happen to the house, and kept suggesting that she should “talk to the attorney” to make sure that Martha Jr inherited it. It was something of a fixation for her, almost to the end. We were able to tell her that the arrangements had already been made, and that put her at ease — until the next time the matter came up.

After her passing, in order that none of the other siblings felt that we had manipulated Martha Sr into making this change, we re-jiggered the allocation of the estate so that things worked out to an equitable split, while still respecting Martha Sr’s wishes that Martha Jr wound up with the house.

* * * * * * *

You’ve probably already figured out what the letter was. It was the deed to the house. Most of Martha Sr’s estate had long since been distributed – but since the value of the house amounted to most of Martha Jr’s ‘share’, and there were some legal matters which needed to be resolved (a property line dispute which we’ve now settled by buying the strip of land in question) before it could be released, we’ve been just going along on the assumption that eventually we’d actually have legal ownership of the house.

Not a big deal. Not really.

Except . . .

Well, except having a place I can call my own has always been hugely important to me. It’s a psychological quirk of mine, tied up with having been orphaned at the start of adolescence. I very literally lost my home. The aunt and uncle who took my sister and I in, God love ‘em, told us to always think of their home as ours and did everything they could to make that a reality. But it still wasn’t ‘my’ home.

As noted above, my wife Martha and I sold our home here in town in order to move in with Martha Sr. For the last decade I’ve always felt like I was living in a place not my own. And while I never really expected it to happen, there were things which could have happened which would have forced us to move out with little warning. That kind of uncertainty has always weighed on me. It would be a little too much like losing my first home suddenly.

But now it is over. Just as we’ve finished getting Her Final Year published and are starting to get it out into the world.

Yeah, “closure.” I guess that’s about as good a term as possible for what I’m feeling.

Jim D.

(Cross posted to my personal blog.)

The benefits of caring.

Posted on September 5, 2011 by Jim

When you’re in the middle of care-giving – even when you’re just starting — even when you’re only *thinking* about care-giving — it can seem like an almost impossible and thankless task. Long, exhausting hours. Isolation. Financial stress. And all the rest.

And in that situation, almost anyone will have to wonder: “is this worth it? Does this really make a difference?”

Yeah, it’s hard to admit that. Just thinking such a thing seems like it is almost a betrayal. But it happens.

About two years after we started full-time, around-the-clock caring for Martha Sr (after years of just ‘helping’ her throughout the day), she developed pneumonia. Her doctor put her on antibiotics, and her condition deteriorated to the point where we entered hospice with her. Several days into that, I sent this message to the family about how she was doing:

Frankly, it is not good. We’ll know more after the hospice nurse is here in the morning to do a medical work up, but it is clear that Martha Sr has slipped considerably in the last few days. Her appetite is way down (eating maybe half of what she was, even with mild encouragement from us). Even with increased pain meds, she frequently complains of being in pain (another issue we’ll address in the morning with the hospice nurse assigned to us). All she wants to do is return to bed after being up briefly for meals. And her aspiration problems have continued to worsen.

I hate to be the one to bring bad news, but I think everyone should be thinking about what plans they need to make for the final days of her life. I would be surprised if we’re looking at more than a matter of weeks, perhaps less. Again, this could change – she could rally – and we will know more after the morning visit with the nurse. But I think you should be prepared.

The things is: that excerpt is from the chapter of “March” in our book. Yeah. That early on. Because she pulled out of that sharp downturn, ‘graduated’ from hospice, and lived for almost another two years.

Two years. Two years of seeing family. Two years of reading. Of laughing. Of watching the birds and squirrels play outside her favorite window. Two years of loving and being loved.

Yes, there were difficult times for her, and for us, in that two years. And every situation is going to be different. But proper care, as well as the right kind of support from doctors, nurses, hospice, and respite workers, meant that she lived that two years.

That’s the benefit of caring. It can be hard to remember that when you’re in the middle of things. But it really can make a difference.

Jim D.

PS: remember, the 10% discount on getting your copy of the book from our store is only good through tonight. Order yours now — or order one for a friend/relative. Use discount code ZZYCFFG2 at checkout.

Moments of happiness.

Posted on September 4, 2011 by Jim

One thing I worry about is painting too dark a picture of what it is to be a care-giver. Certainly, if you just look at my recent posts here, you might come away with the impression that it is nothing *but* stress, and challenge, and unceasing work. That really is part of the whole experience, and we chose to present that aspect honestly, along with an unflinching look at our failures and fears.

But that isn’t all there is. I have said to others that this experience of being a care-provider was the hardest thing I have ever done, but that it also made me a much better person. Why? Well, because of moments like this, from the ‘November: Endgame’ chapter of the book, originally written in November 2007:

After a particularly rough patch of it yesterday morning, I was helping her [Martha Sr] from the toilet to her usual seat in the front room, where she likes to sit and look at magazines. As we transitioned from the wheelchair to her comfy chair, and I got her settled safely there, she looked up at me, her frail thin arms still around my neck, her light brown eyes clear for a moment, and said “thank you, son.”

In the more than twenty years I’ve known her, in the twenty years I have been married to her daughter, she has never once before called me “son.” In fact, since my own parents died almost 40 years ago, no one has called me that. It was a strange word to hear directed my way. And it touched me like no other thanks she has ever offered.

I had a dream of Martha Sr last night – one of the few I recall ever having. I don’t remember the details, but I do remember that it was a good dream.

Jim D.

PS: remember, the 10% discount on getting your copy of the book from our store is only good through tomorrow. Order yours now – or order one for a friend/relative. Use discount code ZZYCFFG2 at checkout.

Set aside the burden.

Posted on September 3, 2011 by Jim

As I mentioned the other day, September is the first World Alzheimer’s Month. In recognition of that, we’ve decided to kick off the month with a special offer: 10% off paperback copies of Her Final Year this weekend only. Just go to our e-commerce store and post the code ZZYCFFG2.

In that post I also quoted an excerpt from the book, from the ‘month’ of September, titled “Beats having a heart attack.” I would follow up with an excerpt from something I originally wrote about a month later titled “I am not a saint.” Here’s how it starts:

I just lost my temper. I just had a full-fledged screaming fit, eyes bulging, veins throbbing, face beet red. At a 90 year old woman who knows no better, who is confused by the world around her due to Alzheimer’s, who is likely dying.

Why did I just do this reprehensible thing, and why on earth am I admitting to it in a public forum?

This gets to the very heart of why we wrote Her Final Year, and why I think others who are either care-givers, or who know someone who is a care-giver, should read it. I touched on this in another post I wrote last week, saying “Because it shows us making mistakes, failing to do this or that right, learning only too late (or almost too late) that we should have done something differently.” But that doesn’t really capture the sentiment in the closing paragraph of my “I am not a saint” piece:

So, why tell on myself, here, in this way? Because this is part of what it means to be a care provider. You lose your temper. You scream, you shout, you act in mean and petty ways. You will lose your temper, or your sanity, now and again. And if you are to be effective as a care-giver, you then have to catch your breath, forgive yourself, and get on with the task at hand. None of us are saints. We’re all frail, fallible human beings. You have to accept that, if you have any hope of getting through this. Because you can’t just take the day off to go relax, or turn this project over to someone else. You have to deal with your own outburst, then get over it as best you can. You have to keep going, whether you want to or not, whether you feel fear, or exhaustion, or shame.

In short, you have to learn forgiveness, for yourself. Because you can’t afford the additional burden of guilt.

Jim D.

The Crisis.

Posted on September 1, 2011 by Jim

Did you know that September – for the very first time – is World Alzheimer’s Month?

Yup. And the ‘month’ of September in Her Final Year is “The crisis.” Here’s part of the intro:

You’ll notice that this is one of the longer chapters in the book. Which is curious, because usually we think of a ‘crisis’ as a discrete moment or event, which happens suddenly.

But here is a deep truth to the care-giving experience: There comes a point where you enter into what feels like a perpetual crisis. And that period will last a long time — longer than you think possible.

We don’t talk about it much, but our country – the whole world, in fact – is facing a huge care-giving crisis, one which will cost more and last longer than most people realize. And that cost isn’t just in terms of money either spent for care, or lost because someone can’t do other work because they are caring for a loved one. Nope. There is also a huge cost in what it does to care-givers. Here’s an excerpt from my first entry in the month of September, originally posted on my personal blog in September of 2007:

And as I stood there at the sink, washing the dishes, thinking favorably on the option of having a heart attack, it sunk in that I was done. I mean, I’d been considering that a heart attack might be the best solution to my problems. Yeah, a heart attack. Hell, at 49, I’d probably survive it. It’d come as no surprise to anyone, given the kind of physiological and psychological stress I’m under. No one could blame me for no longer being a care-provider for someone with Alzheimer’s. Hey, it might even get someone to think about noticing my writing, since a tragic character (whether alive or dead) always gets more notice as an artist than does someone who has their life, and their shit, together.

So, that was that. I looked my own failure to continue right in the eye, and told my wife. I can’t continue to do this. I can’t deal with another day like this. Maybe later, but not now.

I thought earlier that I could do this indefinitely. But it has gotten so much harder in recent weeks. I don’t like to fail at something. I don’t like to set aside a job before it is done.

But it beats having a heart attack.

I didn’t ‘fail’, of course. Neither did I go on to have a heart attack. But there was a cost to the crisis, as documented in Her Final Year. Just as there will be a cost to the crisis we all face. But that cost will be less, if we actually face it, and do what we can now to resolve it. That’s why there’s a World Alzheimer’s Month. Spread the word.

Jim D.

Losing Proposition.

Posted on August 31, 2011 by Jim

The ‘month’ of June in Her Final Year is titled “Losing Proposition.” Here’s part of the intro:

What started out as short-term memory problems and some confusion is now progressing to the point where in some important ways your loved one is no longer who they were. The disease is stealing them away, bit by bit.

And that hurts. This is actually a major part of the reason that both John and Jim became the primary care-providers for their respective mothers-in-law: it was easier on them emotionally than it was on their wives. Because losing a parent is always hard, whether it happens suddenly or over time, whereas losing an in-law just doesn’t carry such emotional baggage.

I knew what it was to lose a parent. I’d lost both of mine in two separate events in early adolescence. I think it made it easier for me to cope with the slow disintegration of Martha Sr’s memory. For my wife, Martha it was another matter altogether. Here’s part of an email that she sent to her sister about their mom, from an entry titled “Every day is an adventure” in the June chapter:

This evening she was pretty far gone. (Sundowning.) I went to get her as usual at 8:30 to brush her teeth and get ready for bed. I was a few minutes late. She was sitting there waiting for me, with her magazines and puzzles put away. I poked the fire a bit and asked if she was ready to go brush her teeth. She said she was going to call, but couldn’t remember my name to call. I told her she didn’t have to call me by name. After I got her up into the wheelchair, ready to go to the bathroom, she looked thoughtful and then asked if my name was Martha. I said yes. She asked what my last name was, and I said it was the same as hers. “John?” “Yes.” “Well, why is that??” “Because I’m your daughter.” She thought about that for a bit and then said something like “but I thought I didn’t get the name John until after you were my daughter.” Huh?? So we talked about how she’d been Martha John since 1940, or for 66 years. I finally said that in 1940 she had married Hurst John and become Martha John. That rang a bell – she “had forgotten about him!”

Yeah, I can only imagine how much harder this must have been for my wife.

Jim D.