As I mentioned Saturday, we now have someone coming in to stay overnight three nights a week. Seems like a nice woman, but it will still be a little weird to have a stranger here on Mondays, Wednesdays, and Fridays – and there’s a chance that it won’t work out with my MIL, if she freaks out over having this strange person help her in the middle of the night.
That was one of the main reasons we’d held off on taking this step earlier: we weren’t sure whether the trade-off of getting a night’s undisturbed sleep would be worth whatever disruption it caused my MIL that we’d have to deal with the rest of the time. But when we met with the Social Worker from Hospice, a nice woman by the name of Lori, she was fairly assertive that we needed to take this step, just for our own health and sanity. Getting an outside professional’s perspective helped, and affirmed what friends and family had been suggesting for some time.
The other main reason we’d held off in doing this was insurance. Now, let me get my biases right out in front: I think that most insurance is a scam, designed to scare people and sell them policies which provide little coverage and plenty of loopholes for the company to escape payment. I know that this isn’t always the case, and yes I have always had plenty of insurance – I just accept it as a necessary and unpleasant part of life. Our experience in this case proved not to be an exception.
See, my MIL has a long-term care policy which carried an option for an ‘alternative care plan’, meaning something other than a nursing home, which could be set up with the agreement of the company (and would save the company money, since it was a lot less than what a nursing home would cost). She’s had this policy for decades. Under the provisions of the plan, the company would pay up to $xx.xx dollars per day for in-home care assistance. We wanted to have them help pay for having a home-health aide in overnight a couple of times a week. Except that the cost of doing so was a little less than twice what the per diem specified in the policy. But hey, no problem – since it is overnight, the billing could be broken into two days, and fall under the specified coverage. Logical, right?
Um, no. Not as far as the insurance company was concerned. At least that was the position they took when they denied our request. My wife argued with them. For a while. Because honestly, we didn’t have the energy to fight with them over the long haul, given that we’re exhausted from being care-providers. It was easier to just curse the bastards and drop the matter – what the insurance company counts on, no doubt.
Except then we talked with Lori, and she made her point about us needing more rest. Further, she asked about any insurance policies that might allow for some in-home care. We explained the situation we’d gone through with the insurance company earlier this year. She nodded, asked to see the policy. Looked it over. Looked at us, said, “Let me handle it. The sad fact is, I have a lot more success than our hospice clients do with these things – the insurance companies know that they can’t just wait me out.”
Three weeks later, we had a tentative agreement in place. A week after that, the paperwork was all signed. The company will indeed pay for someone being here three nights a week, billed under the per diem for six days. Starting tonight.
Thanks, Lori.
Jim Downey
We found out yesterday that starting Monday, we’re supposed to finally have someone providing respite care for us overnight three nights a week (Monday, Wednesday, Friday). More on how that came about later.
But I wonder whether we’ll actually get there. Or, if we get there, whether we’ll be taking advantage of this service for more than a brief period. See, I think that there’s a good chance that my MIL may be coming to the end of her life.
For the last couple of weeks she’s had a sporadic fever of indeterminate origin. Not a lot, just a degree or so over her normal temp. And it would come and go. The hospice nurse has noted some congestion in her lungs, but nothing else which would account for it. But in the last couple of days it has trended higher, and been more consistent. Today it has steadily crept higher each time we’ve taken it, and doesn’t seem to be responding to any of the usual meds which will combat fever. It’s still fairly mild, just about two and a half degrees more than normal, but something is going on.
And in the last few days she’s talked more and more about being concerned that her family knows where she is so they can come get her. More than once she’s indicated that her mother “just left” and would be returning soon. When we tell her that everyone in the family knows where to find her, she’s happy. It’s as if she were a little girl, excited about getting to go on a trip, waiting for something to happen.
And we’re waiting with her, unsure how to proceed, wanting only to have her happy and knowing she is loved.
Jim Downey
I got back from my morning walk with the dog to find my wife helping her mom take her after-breakfast pills. Not just encouraging her, but actually placing the pills in her mouth for her, helping her hold up and drink from the glass of juice.
I changed the dog’s collar, put away his leash. Took off my knee braces and the little belly pouch I wear for walking the dog which contains some treats, a small bottle of water, plastic bags for droppings. Removed my light jacket and MP3 player. Went back into the kitchen and leaned against the counter opposite where my wife and MIL were sitting. My wife looked up.
“Another T.I.A.?”
She nodded.
* * * * * * * * * * * * *
From MedlinePlus:
Transient Ischemic Attack
Also called: Mini-stroke, TIA
A transient ischemic attack (TIA) is a stroke that comes and goes quickly. It happens when a blood clot blocks a blood vessel in your brain. This causes the blood supply to the brain to stop briefly. Symptoms of a TIA are like other stroke symptoms, but do not last as long. They happen suddenly, and include
- Numbness or weakness, especially on one side of the body
- Confusion or trouble speaking or understanding speech
- Trouble seeing in one or both eyes
- Loss of balance or coordination
Most symptoms of a TIA disappear within an hour, although they may last for up to 24 hours. Because you cannot tell if these symptoms are from a TIA or a stroke, you should get to the hospital quickly.
TIAs are often a warning sign for future strokes. Taking medicine, such as blood thinners, may reduce your risk of a stroke. Your doctor might also recommend surgery.
National Institute of Neurological Disorders and Stroke
* * * * * * * * * * * * *
They’re coming more frequently now. We saw the first (that we noticed) early this year. I was helping my MIL out to the car for a hair appointment, and all of a sudden she just slumped, slipping straight down, knees buckling to the pavement before I caught her.
The first time you see a T.I.A. hit someone, you’re completely bewildered by it. Well, at least I was. My MIL, who was capable of standing and stepping with care and help, and who is usually somewhat plugged into her immediate surroundings, just seemed to “shut down”. I got her in her chair, but she slumped over. She seemed unaware of anything around her, barely responsive to my questions and prodding. It was early in the day, but she was acting like it was the very end of the evening, when she would usually be deep into ‘sundowning‘, exhausted and ready for bed. So, I put her to bed.
Then I called my wife, did some research. I had thought it was likely a T.I.A., and brushing up on the available info confirmed it. So did my MIL’s doctor, who my wife called.
What to do? With someone of my MIL’s age, and with her other medical issues? Nothing really to be done. Bed rest, note it. Roll with it.
* * * * * * * * * * * * *
When we’d had a couple more T.I.A.s this summer, and with the other indications we’d seen (some of which I’ve mentioned), we decided the time was here to again seek Hospice. In the month since, my MIL has had several more T.I.A.s, about one a week. Each time, the treatment is the same: get her into bed, let her sleep it off. After a couple of hours she’s back to what passes for normal. We note it, and are sure to tell the Hospice nurse when she comes for her weekly visit.
A T.I.A. itself isn’t really that big a deal, as noted on that site cited above. It is, however, something of a warning. As the Wiki page on T.I.A. states under “Prognosis”:
Patients diagnosed with a TIA are sometimes said to have had a warning for an approaching cerebrovascular accident. If the time period of blood supply impairment lasts more than a few minutes, the nerve cells of that area of the brain die and cause permanent neurologic deficit. One third of the people with TIA later have recurrent TIAs and one third have a stroke due to permanent nerve cell loss.
* * * * * * * * * * * * *
So, we wait. For either another T.I.A., or a full-fledged stroke. And we try to make her days as comfortable and enjoyable as we can, within the constraints of our own exhaustion and need to pace ourselves for what could yet be a long haul.
And in the meantime, tomorrow is our 20th wedding anniversary. For the most part, observation of same is postponed until later by tacit agreement between my wife and I, though we will make a favorite meal and bake a cake. We have one another, the details will sort themselves out later.
Jim Downey
The Columbia Daily Tribune did a feature piece today about Alzheimer’s, tying a presentation by a local researcher to the experience that my wife and I have had in caring for her mom. Nothing really new in it, for anyone who has read my materials here, but I thought you might find it interesting to get another perspective on the matter. I think she did a good job with the piece.
A note: while I wrote a regular column on the arts for the Trib until the first of this year, I did not know the reporter who did this piece prior to meeting her for an interview about this story last Tuesday.
Jim Downey
Filed under: Alzheimer's, Artificial Intelligence, Augmented Reality, Expert systems, General Musings, Health, Hospice, Predictions, Press, Science, Science Fiction, tech, Writing stuff
Several quick items this morning…
First off, last stats I saw (yesterday morning), over 5,400 people have downloaded the novel. That’s like 1,200 this month alone. Yay!
Hits to this blog have also continued to rise – over 5,000 so far. So have submitted spam ‘comments’, of course, now over 2,000. Glad that the filtering software catches the vast bulk of that stuff.
A friend sent me the current issue of the American Ceramic Society Bulletin. Unfortunately, items he wanted to share with me are not available through their site, but with about 10 seconds of searching, I was able to pull up more complete information on the two things I wanted to mention. Sheesh – when will people figure out that hiding basic information behind a subscription firewall is not only pointless, but aggravating to the average person? Now, rather than linking to their content (and increasing their traffic/exposure/possibility for advertising), I’ll link to the other sources.
First of these is about the latest developments in transparent transistors. This is the thin-film tech I stipulate for the best computers in Communion of Dreams which are not based on the superconducting Tholen gel.
Second is how scientists have discovered a way to embed silicon nanowires right into living cells without causing damage to the cells. This is the basis of the mind-machine interfaces that I use for the computer and communications tech in Communion, though I don’t go into the details of it in the book.
In both cases the tech is further along than I had expected when I first wrote the novel, but it is good to see that my predictions about how things would likely develop were on track.
Lastly, there will be a newspaper feature about my wife and I caring for my MIL in the local paper this evening. I’ll post about it with a link probably tomorrow.
Jim Downey
The last couple of days with my MIL have been relatively calm. Given her behaviour on Monday, my wife and I have settled on a TIA as being the likely culprit, though of course that’s a non-medical opinion.
One odd thing we’ve noticed, though, is that particularly in the mornings after breakfast, while my MIL displays a marked tiredness, she’s been reluctant to take a nap. This is new – for the last couple of months a nap in the morning has been fairly routine for her. When we ask her after getting her dressed whether she would like to have a nap, it’s almost like she is fearful of the notion. She says that she’s worried about when she’ll get up, and how to call for help, et cetera. But there seems to be more to it than that.
In talking about it this morning following another such episode (my MIL did finally opt to have a nap), my wife suggested that perhaps she (my MIL) is actually concerned that she’ll go to sleep and not wake up, but that the idea of that hasn’t been formulated solidly in her mind. I have to wonder whether this is an unconscious awareness of her approaching death.
And here we run into one of the biggest problems in helping someone with dementia at the end of life – the difficulty in helping them understand what is happening, of allaying her fears. With someone still in full possession of their mental faculties, you can discuss what is happening either directly or indirectly, suss out their concerns, help them come to terms with it. My MIL doesn’t have the ability to process such things any longer, and to try and penetrate her mental fog with a clear message of an impending death would just be cruel; it would pointlessly and needlessly frighten her, without giving any sort of comfort or peace of understanding. All we can do is provide her such love, safety, and reassurance as we can, as we all stumble along this unknown and unknowable path.
Jim Downey
Filed under: Alzheimer's, Bipolar, Depression, Failure, Health, Hospice, Sleep, Writing stuff
This is pretty raw. I reserve the option to amend or delete it entirely later. [9/18 7:15 AM: I’ve added a postscript – see below.]
I’m worn out. I’m emotionally and physically bankrupt. I’m spent, empty. Just a dry husk.
It was a *very* long day. Started with the migraine I mentioned in my previous post. Then care-giving was really rough. Worst it’s been, and that’s saying something. I don’t know whether my MIL had another little stroke, or is fighting an infection, or is approaching the end of her life, but damn – every fifteen to twenty minutes today I had to go tend to her, see what she needed. It was always some variation on the theme of her “needing to get ready to go home”, or wanting to “look outside to see if her ride is here,” or “needing to call the people she usually lives with in order to let them know that she was here”. I tried everything I know or could think of – distraction, answering questions, asking questions, reassuring, re-directing, lying outright – and nothing, nothing, would stick. Ten or fifteen minutes after I had gotten her calmed down or focused on something else, or whatever, she’d call again.
And this, of course, on a day when I was really trying to concentrate, punch through the mild migraine, get some conservation work done. Some rather delicate conservation work, at that. Work which had been promised to a client two weeks ago.
And, of course, my wife had a thing this evening that she had to go do (my suggestion that she do so – no fault to her). She got home after I had my MIL tucked in to bed and was working on the dishes.
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.
Postscript:
Like I said at the outset, that’s pretty raw. And I’m going to leave it as is, though following 8+ hours of sleep I feel better and have a different perspective on things.
This is one of the functions that this blog serves for me: being a form of therapy, allowing me to express things in a way that allows me to vent and get some perspective. I get it off my chest, so to speak.
And it serves another, related purpose: to help others understand just how difficult and demanding it is being a care-provider for someone with dementia, to share with other care-providers my stories as a form of support. And here, I am talking about those who choose to be care-providers for friends and loved ones at home. Professionals who do this, God bless ’em, do not have the same perspective: they get to go home at the end of their shift (or even their double shift, in rare circumstances). Doing this at home means you never get to leave.
I am by no means a ‘weak’ person. Not physically, not intellectually, not emotionally. And yet you can see what effects the constant, unending wearing has on me. There’s a good reason why care-providers suffer huge stress-related illness, including, yes, heart attacks.
As I said, this morning I feel a lot better. The migraine is just wisps and echoes, and I hope it remains that way. I have this trip to meet with my new client and pick up the first lot of books, which means a couple of hours road time to allow the worries and cares to unspool behind me a bit. Just getting out of the house for the bulk of the day will help.
I do not know where we go from here. My wife and I discussed my exhaustion last night, when I told her that I was “done”. But since we were already going to change the care-giving package to allow me more time to concentrate on my conservation work in the coming months, it may be that we keep my MIL here at home and I just try and ride this out, knowing an end is in sight. (As I told the social worker for Hospice when we first hooked up, “I can sleep on broken glass for six months, if I know that’s the end of it.”)
So, no fretting – I’m better this morning. And while I cannot control what might actually happen to me vis-a-vis my health (beyond doing what I can to stay healthy), I’m no longer even contemplating a heart attack as a good alternative strategy.
Jim Downey
Filed under: Alzheimer's, Book Conservation, General Musings, Hospice, Predictions, Society, Writing stuff
Well, that’s a bit of a surprise. More than a bit, to be honest.
I wrote back in May about meeting with an institutional client concerning a large collection (some 7,000 volumes) they had recently acquired, and how the initial expectation on the part of the administration at this institution was that all the books needed to just be rebound to look pretty. I mentioned that my suggestion of proper conservation treatment was completely foreign to them, and that I really didn’t expect that they would want me to do the work for them.
Well, I guess the conservation treatment I gave the three books I worked on as an example of what I do changed their minds. Because I found out this morning that they want me to do the work.
Frankly, I’m astonished. And pleased. Also a bit scared.
“Astonished” I’ve explained. “Pleased” is probably self-evident: this is a worthy collection of significant historical works that deserves proper care, and I know I can provide that care. And this is a multi-year project, meaning some security in terms of income and planning.
“Scared,” though? Well, yeah. This means a lot of work – good work, granted, on my own schedule, but the client will (understandably) want a large volume of books cared for and returned on a regular basis. And right now I can barely manage to concentrate sufficiently to do conservation work for a couple of hours per week.
Now, they don’t expect me to start handling that volume right from the start. I had told them from the beginning that I would need to ramp-up how much work for I did them, as I met previous obligations to other clients. I didn’t tell them about the other major factor limiting my time and energy, though: caring for my MIL.
My wife and I discussed this issue when I was first contacted by this institution, because frankly there is no way I can do the conservation work at that level and still be the primary care-provider for my MIL. So now we’ll need to sit down and sort out how we proceed. I could basically swap places with my wife, in terms of my “working” four days a week and her being home here to care for her mom (she’s an architect, and with some logistical shuffling she could do a limited amount of work from home). That’s one option. We might also consider others, perhaps making more use of the services available through Hospice.
And, of course, my MIL could die this week or next and make all question of needing to worry about such things moot. But that’s not what I hope for, nor how we can plan. Rather, we need to plan as though she is going to be with us, and still requiring substantial attention and care.
So, this means change. Perhaps a little sooner, and in a different manner, than I had been thinking about recently. And change can be a little scary.
Not that it’ll stop me, or even much give me pause.
Well, speaking of such things, I have conservation work that needs doing . . .
Jim Downey
Filed under: Alzheimer's, Failure, General Musings, Health, Hospice, Publishing, Religion, Sleep, Writing stuff
After she finished doing the nursing assessment of my MIL, I escorted ‘Missy’ from the Hospice agency out to her car. We paused just outside the back door, and she looked at me. “You guys are really doing a great job as care-givers.”
She probably tells that to all the people they work with. It’s likely in the manual.
But you know, it was still good to hear.
* * * * * * * * * * * * *
Every one of family and friends we’ve told have been very supportive. “Glad you’re getting some help.” “About time you were able to find a good Hospice.” “Good that you can have some support.” “Maybe now you can get some regular assistance, even some more respite care in each week.”
But you know, it somehow feels like failure. Like we’re giving up, giving in, saying “we can’t handle this any more.”
I always knew this time would come. Just as I know that someday my MIL will die. Well, part of me knew these things. Part of me didn’t. It’ll take some time for the emotional reality to catch up with the intellectual.
* * * * * * * * * * * * *
I found myself while on my morning walk considering what it will be like. To be able to go visit friends without having to coordinate family coming in to stay with my MIL. To not have to listen to a baby monitor 24 hours a day. To get some real sleep night after night after night. Daring to think that I might once again have a life of my own.
Really, that’s how it is. You develop such tunnel vision – everything has to be considered in terms of one objective: being a care provider. Yes, you take breaks as you can, you try and get some exercise, some sleep, eat right. Maybe even do some writing or conservation work. But all of that is secondary. Distantly secondary. Because you have to be there for the person you are caring for. It is a sacred trust, perhaps the only thing I truly consider to be sacred.
But now I start to consider What Comes After.
And it frightens me.
* * * * * * * * * * * * *
Over 4,300 people have downloaded my novel. That’s an average of 600 people a month. Pretty good for what is basically word-of-mouth. I have a lot of work ahead of me to turn this into landing an agent, getting a publishing contract. If not for this book, then for the next one, on the basis that I have at least that much name recognition, that much of an ‘audience’.
I have the prequel to write. There’s a couple chapters already done that will need to be revised. And outlines for the rest of the book to be reworked.
I have at least two patentable ideas – one firearms related, one a consumer electronics item – that I need to pursue, see what I can do to either formally file a patent, or convince the appropriate large corporation to buy the idea from me with something less formal.
I need to earn some money, pay off debt.
I need to lose a bunch of weight, get back into something resembling decent shape.
And I’m frightened. For the last four years, none of these goals has really been paramount. So it has been easy to not succeed at them, and not take it as a personal failure. Soon, I will no longer have that excuse.
Can I succeed? Can I accomplish something lasting with my life?
* * * * * * * * * * * * *
A friend sent me the “Quotes of the Day” this morning. It contained one of my long-time favorites:
There is no expedient to which a man will not go to avoid the labor of thinking.
— Thomas A. Edison
Certainly true. One only has to look around at the world to see that. So very few people are willing and able to actually think for themselves. Oh, they may believe this or that, and call it thinking. But to actually stop, and consider, and understand? That is a rare thing.
I have been chronically tired for years now. And my ability to think clearly, or for any length of time, has been correspondingly diminished. I can point to this or that instance recently when I was able to think and work for short periods, once I had a bit more sleep and time to decompress. But it is a fragile thing. And I worry that perhaps it has slipped away. . .
* * * * * * * * * * * * *
Jim Downey
I’m tired. No, make that I’m weary – not just from lack of sleep, but that deep weariness of being on a long campaign of any sort, in this case three & a half years as a full time care-giver.
I wrote a couple weeks ago about our previous experience with Hospice for my mother-in-law (MIL). Well, as reflected in that post, we’d seen a downturn in her condition, notably the tendency to sleep a lot more. Couple that with increasing comments from her following naps that she had been with her parents (who have been dead for decades) and that they “wanted her to come home”, and we sensed that perhaps she was entering into the end of life. We contacted her doctor, discussed the matter with him last week. He agreed with us, prescribed Hospice once again.
This morning we had a visit from the case manager (a nice woman named Jann) from a different health organization than the one we used previously. We went over my MIL’s condition, expressed our concerns about what our experience had been last year, discussed options. According to her, my MIL fits well into the guidelines for Hospice admittance under the ‘debility’ criteria, and there’s little chance that she would ‘graduate’ from Hospice care under those criteria.
So, we’re giving this another try. My wife and I are good care-givers, and have done this job well for these past years. But now having the resources of Hospice available is a comfort, so long as I feel that I can trust it. Knowing that we have someone to call who can advise and assist as needed comes as something of a relief, and I find myself a little overwhelmed.
And for some odd reason, more weary than when I got up from being on call this morning. Tension-release, I suspect.
Jim Downey
Communion Of Dreams 