NOTE: The first entry in this series is available here, http://www.dailykos.com/...
and the second here, http://www.dailykos.com/...
I don't know how many more entries I'll be making in this series, or even if I'll be making any after this one.
The first one drew a wonderful response, and I wish to once again thank all those who shared their kind and warm messages with me.
The second diary disappeared almost as quickly as it appeared, and even with the kind help of the Rescue Rangers wasn't seen by many.
These are not sour grapes. The first one, after all, had a pretty irresistible title. I think even if I was over on RedState and I saw a diary titled "My Mother Has Died," that I'd click over. It is a universal experience.
These are also times when this site is justifiably abuzz over debt ceiling debates, "Super congresses," and Wisconsin recalls.
And now we have learned that a beloved member of this community is leaving us. It is not through death, and this individual was kind enough to specifically assure us that health matters are not a factor in his taking leave. But I can't help but notice that it still feels somewhat like a death to me, and I suspect others here have experienced a similar sensation.
Rather, I don't know when the next entry in this series will be because, frankly, I'm a mess. I'm finding, a bit past two weeks out from my mother's passing that things are getting harder rather than easier. My local sister reports the same experience.
I think that shock and disbelief are being replaced with awareness of the new reality: Our Mom is not coming home. Ever.
And as the details of her memorial service are attended to, we find ourselves with less to keep us occupied.
But many of the folks who did respond to the second diary seemed to really appreciate them, and as I just finished putting down on paper what I am hopefully going to find the strength to say at my Mom's memorial tomorrow, I thought "Jazz, you're already crying, why not write another diary?"
I want to use this third diary to bring the narrative up to the point where I moved in with my mother to become her full-time, live-in caregiver.
After that, I suspect I'll just be filing a series of bullet points about my experiences and, when able, to offer my recommendations to others, rather than continue with a narrative.
There are two reasons for this. For one thing, I don't want this series to turn into "The Continuing Soap-Opera Of Jazzmaniac."
For another, when I look back over the last five years, chronology vanishes. I couldn't tell you, today, whether my Mom was hospitalized for a DVT (Deep Vein Thrombosis, a blood clot) before her fifth hospitalization for a urinary tract infection, or after her sixth hospitalization for a UTI. Did the one doctor, the one I would come to dub "Doctor Cursed" (two syllables,) reply to me - after I pointed out that the medication she'd just prescribed for my mother was contraindicated by her heart condition - "She's 95 years old! Who cares if she has a heart attack?" immediately before I banned her from ever getting near my mother, or was there another hospitalization before I banned her from ever getting near her? It's all a blur.
The first year after my father's passing was marked by the continual improvement of my mother. She went from being seriously underweight, depressed, and, my local sister and I felt, in danger of joining our father, to being a surprisingly robust individual who enjoyed reading, watching "Who Wants To Be A Millionaire" and "Wheel of Fortune," the Cubs (sorry, White Sox fans,) and even cooking occasionally.
The second year was marked by the appearance of two sets of initials: UTIs and TIAs. When I see commercials for over-the-counter urinary tract infection nostrums, and I hear talk of "burning while urinating," I think "If only that was the major problem!"
I came to learn that UTIs are not only very common in elderly women (and to a lesser degree, men,) but that their impact is extraordinary.
In my mother's case, they completely sapped her strength. They would, at times, be accompanied by confusion, and later on by mania and sleeplessness. But it would be the weakness that inevitably led me to call the paramedics. When she didn't have the strength to get up, either out of bed or out of her chair, or she fell while walking (fortunately always into my waiting arms,) it was time to call 9-1-1.
ER doctors and nurses would tell us tales of elderly patients being brought in from nursing homes - it being thought that they were in a coma - only to have it discovered they had a UTI, and upon administration of IV antibiotics, they would rise, Lazarus like.
My mother never got that bad, fortunately, but the IV antibiotics worked wonders. Time and time again.
But while three or four days of bedrest might sound like Heaven to me, in an elderly individual their strength seems to ooze out of them as if through their pores. We discovered the post-hospitalization nursing home stay, for rehab. And if I do write more, I will be writing quite a bit about nursing homes, the individuals who work there (some of whom are horrible and some of whom are the closest thing to angels walking you'll ever encounter,) and the miracle of physical and occupational therapy.
The other initials I mentioned, TIA, stand for Transient Ischemic Attacks. Mini strokes.
The first few that my mother had also resulted in trips to the ER, and in one case, a hospitalization. They never caused paralysis, not even temporarily. Their chief manifestation was an overwhelming feeling of sickness, and an alarming spike in her blood pressure.
We were repeatedly assured that the spike in BP was a response to her feeling sick, and not the cause of her feeling sick. The spells lasted anywhere from 20 minutes to several hours, after which she would feel fine. Generally she would be a little weak the following day, not down one side, but all over.
She would go for weeks between them, then within a week have three or four of them. As her mother and both brothers all died of massive strokes, and the TIAs are a telltale of a greatly elevated risk for a major stroke, they caused us quite some concern. Eventually we learned that they didn't warrant a trip to the ER. The symptoms would pass, and she'd feel better. Her cardiologist said he was already doing everything pharmaceutically that could be done to prevent them.
It was during one of our Mom's post hospitalization stays in rehab, perhaps the second one, perhaps the third, that the decision was made that I would give up my apartment and move in as our mother's full-time caregiver.
Over the past five years I've had a lot of people say to me "Not many people do what you did." My reply has always been "I think that more would if they could."
As a never married person with no children I had no family of my own to care for. I didn't have a career, I had a couple of jobs (one of which I would continue to work a few hours a day for the first two years.) Change either of those metrics and the options become much more limited.
I wish to give fair warning that if this series continues there will be bitterness expressed. Bitterness towards our health care system, bitterness towards individual healthcare providers, and bitterness towards family members. I've come to feel that any family that survives something like this without being torn apart is blessed. My own family hasn't yet been torn apart, but there are resentments that I expect may last a lifetime.
I know we have a number of doctors in this community, and I would very much welcome their input. I've little doubt that much of the frustration I occasionally felt with members of their profession have their root in insurance regulations, both public and private, and other matters that impinge on their ability to practice their craft.
My thoughts from here on will be fairly random. I'm sure I'll wind up writing of some relatively trivial matters ahead of weightier matters. I'll try to be organized, but much will be written simply as it comes to me. With that, here are my first few bullet points:
If you want to play a drinking game with these diaries, you'll want to take a swig every time I use the word "advocate." Actually, you don't want to do that. You'll pass out. Elderly people need an advocate. They're old. They're sick. Their eyes may not work too well, and their ears may not work too well. Their mental faculties probably aren't 100%.
And they have a minefield to navigate. Things get complicated, and people screw up all the time.
I remember standing outside my Mom's room during one of her hospitalizations, talking to her minister, a wonderful woman who'd come to visit her. I forget exactly what major screw-up I'd just rectified, but I said to her "What do old people who don't have an advocate working for them do?"
"They die, Jazz. They die."
Assume nothing. The doctor tells you he's making a change to your loved one's medication? Changing the dosage, suspending something, adding something? You assume that when your loved one's nurse brings them their medication that the changes will be made? Don't assume. Double. Check. Everything.
Don't be afraid to be a pain in the ass. See above. Some people won't mind it, will even appreciate your involvement. Some people will consider you their worst nightmare. Tough.
Don't be afraid to praise. Somebody does a good job for your loved one? Is especially attentive or helpful? Recognizes that as the patient's caregiver you might actually know a few things and be able to contribute? Let. Them. Know. Let their supervisors know!
Use that computer. Probably unnecessary advice to this community. But I don't know how I would have survived without my computer. Keep records. My Mom had IBS. She'd swing from constipation to diarrhea in an eyeblink. I kept records of every bm, its size, consistency, the circumstances under which it occurred. What did she have to eat recently.....anything that might have an impact? What did I give her at bedtime? Mirilax? How much? I never would have remembered otherwise.
Similarly, every TIA episode: Catalogued. How was her night's sleep? Any sleep med given? How is her energy level, her mental state today? Her strength?
I took my Mom's BP throughout the day. Drew up and printed out tables, put them in a three ring notebook, recorded all BPs in there. I lived to regret that I never made records of all her hospitalizations and what occurred prior, during, and after them.
And last, but certainly not least, I used my computer to try to maintain some link with the outside world. To try to retain as much as possible of my sanity. To escape for a few minutes here and there. To find respite in this community.
And ... about that respite. If you wait until you think you need respite care to line up respite care, you've waited too long. I did. I had some respite care in the earlier days, when my local sister's arthritic knees had not yet left her barely able to remain on her own feet, let alone make sure that our mother did. But as time went on, she was able to do less, and I had to do more. I came to look forward to grocery shopping once a week because it was a chance to get out of the fucking house for an hour. My nerves frayed. I snapped at people, including the person whose care I'd chosen to assume.
In the early days, when you're still thinking "This isn't as bad as I assumed it would be"? That's when you need to find some way of getting respite care for yourself, and take it.
Well, that's enough for now. Thanks for reading.