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
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, Comics, Health, Migraine, OOTS, Sleep
I’ve suffered periodic bouts of migraines since adolescence. I know there are some food triggers, and I know that physical and emotional stress also can start a cycle. I even have “stress release” migraines, when some particularly difficult or demanding situation is over. I know several different types and intensity of migraine, from the ones that just make you a little miserable for a few hours to the ones that make it a almost impossible to get out of bed for two or three days. But most of all, I know that modern medicine offers me no real hope of relief from the damned things, and the best I can do is deal with them symptomatically with a range of mild to powerful narcotics.
Yeah, I’ve got a migraine. Been keeping it at bay for the last few days, having sometimes to resort to the least powerful of my Rx meds. Gah. Makes it hard to get anything done, and I have a *lot* to get done – a book conservation project I promised a client two weeks ago, a trip to pick up the first installment of books for the new client tomorrow, interviews with a reporter about being a care-provider, et cetera. Charming.
But at least OOTS is back from hiatus!
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
About 15 months ago, I wrote the following:
I sit, listening to the labored breathing coming from the next room. The end will come probably sometime this next week, likely as the result of a fever and while she is asleep. As deaths go, it’ll be one of the best possible, with minimal pain, discomfort, and fear.
*******
…because some short time ago, when it became clear that my mother-in-law was not going to recover from her latest medical problems, my wife and I decided to enter her into Hospice.
I knew of Hospice as an medical movement designed to make the last weeks or months of life as comfortable as possible, with a primary emphasis on palliative care. And this it is. But I’ve discovered that it is so much more.
Our “hospice team” includes a nurse who comes by as often as we need her. If that’s once a week, or twice a day, it doesn’t matter. We have on call personal care aides, a chaplain, a social worker (to help me and my wife with any of the issues surrounding the imminent death of a loved one), as often as we need them. If we need any medical equipment, from a hospital bed to oxygen, it’s arranged for. All prescribed meds for her condition are delivered to our door. Basically, anything we need or want which pertains to my mother-in-law’s health is provided. And it is all 100% covered by Medicare.
And it is a shame that you have to die to get this kind of medical care.
As is clear from my other posts, my MIL actually didn’t die. Yeah, she’s one of those rare people who “graduated” from Hospice care. Basically, we were too good at providing care for her, and she just wasn’t ready to go yet. So, after the initial 90 days of being enrolled, she was dropped from the Hospice program administered by one of the local hospitals. I’m actually still a bit upset with the way that transition was handled – my wife and I very much felt like we were abandoned. The extensive network of support we’d had just disappeared, leaving us unsure how to proceed (because while my MIL wasn’t ready to die, neither was she going to ‘get well’, and her care needs had increased significantly.)
Anyway, now we’ve noticed another downturn in her condition, and one of the significant markers of end-of-life has shown up: my MIL has dramatically increased how much time she spends sleeping, with no indication that she is suffering from any secondary illness or infection which would explain it. Her afternoon nap has gone from 90 minutes to typically three hours (or longer). And she now wants to nap in the morning after breakfast most mornings, for an hour and a half to two hours and a half. Noting this, my wife sent me this: Eldercare at Home: Chapter 28 – Dying at Home which contains the following:
The end of life cannot be predicted for any of us. We do not know when it will happen, who will be with us, how it will occur, or what we will feel. However, we do know some useful things about how many people die and this can help put your situation in perspective.
Many misconceptions exist about what can happen during the final days and weeks of a person’s life. One stubborn myth about dying is that the person will die from only one cause. In some cases this is true, but many older people do not die from one major event or for only one reason. Instead, they die because of many different factors that combine to slow down the body’s important systems, such as the heart and lungs. In a sense, the physical body slowly “gives up.”
*******
Certain physical signs warn us that the end of life is growing close. Most people with an advanced, chronic illness spend more time in bed or on a couch or chair. People with any type of advanced disease eat less food, and drink fewer liquids. They also sleep more, lose weight, and become much weaker.
Not every warning sign is physical, however. People may talk about “leaving” or “having to go.” Their dreams make them feel as if they want to “get going” or “go home.” Although this does not occur in every situation, this language and the emotion behind it are ways of talking about dying. The person also may ask to see special friends or relatives, and some haziness or confusion can occur as each day blends into another. Keeping track of the day of the week becomes less important, as do other daily living details.
My MIL has been doing more of this, though it is difficult to really say whether it is pertinent, since she suffers from dementia. Still, it is good to see it described, to be able to point to this document to help friends and family understand a bit better where we are (the excerpts I cite are just one small bit of that chapter – and the whole thing is worth looking at).
And it helps some with my ambivalent feelings towards Hospice, which, in spite of what happened to us, I know is a good program. I just wish I knew when to turn to them again – having the full support followed by being dropped like a hot potato isn’t something I think I can take emotionally again. Not at this point, anyway.
Jim Downey
A few days ago I wrote about the difficulty of accomplishing anything as my mother-in-law slowly slips away due to Alzheimer’s, and the impact that has on myself and my wife.
Well, it’s taken a significant turn for the worse. For whatever reason, her condition has worsened substantially in the last few days, to the point where she now frequently asks to “go home”, doesn’t recognize me or my wife for who we are most of the time, and has long and elaborate “memories” of things which she thinks she has just done (going to see a movie, taken a trip with friends) earlier in the day. Her tenuous grip on reality has slipped to almost nothing.
I wind up spending long periods of time just talking with her, reassuring her that she’s here at home, safe and we’re taking care of her – we’ve long since given up trying to ‘correct’ her information or view of the world. This is very intense and demanding, and when coupled with increasing unpredictability in her sleep habits, means that I am increasingly low on sleep and energy and focus and initiative.
Still, I have a creative drive that wants outlet. Very frustrating.
Jim Downey
Filed under: Alzheimer's, Bipolar, Book Conservation, Depression, Harry Potter, Health, Sleep, TGV Rockets, Writing stuff
One of the hallmarks of major depression is the energy-sucking nature of the disease. For someone in the throes of such a depression, it becomes almost impossible to even get out of bed, and regular correspondence, routine tasks, et cetera, all slide by the wayside, piling up and contributing to the downward spiral.
I suffer from a mild form of bipolar disorder – what is commonly called manic-depression. The arc of my mental state can be influenced by many things, but typically runs about 18 – 24 months through a full cycle. I have never suffered through a full major depression, but I’ve been down into it far enough to have glimpsed that hell, and know I want no part of it. I’ve learned to cope with my condition, and know full well that if I were ever to slip further I would want professional help to deal with it.
One thing I find in being a care-giver for someone with Alzheimer’s is that as my charge slips further into dementia herself, the toll that it takes on me and my wife comes increasingly to resemble suffering a major depression. Basically, with the prolonged lack of sleep and growing effort to help her comes an increasing difficulty in having the energy to accomplish anything else. Last week I read the new Harry Potter book, and the effort left me completely exhausted and suffering a prolonged migraine by the end of the week. If I can get the focus to spend a few hours at the bench doing book conservation in a given week it is a minor miracle. Just contacting clients or suppliers becomes a task I cannot confront. I’ve promised someone an article on Pat Bahn of TGV Rockets, which I really want to write, but finding the energy to do so is another matter altogether.
And yes, my own mental health is stressed by all of this. I am constantly at risk of falling into the trap that I should be doing more, should be stronger. That’s my image of myself. And when I put my mind to it, I really can accomplish some remarkable things. So the temptation is to push myself further, to goad more work out of myself, to criticize myself for being “weak” for not having the focus or the energy to do this or that. That is a dangerous path.
So, I do what I can, when I can, and try and cut myself some slack the rest of the time. And this afternoon, while my mother-in-law naps, I think I will can some tomatoes. There is more conservation work waiting for me, and other writing I should do. But the tomatoes are ripe and ready, and it will be a nice change from the other tasks.
Jim Downey
Communion Of Dreams 