Again, I regret the long silence since the last post–nearly six months.  Thanks to those who have encouraged me to continue the blog.  The circumstances of life are not predictable in case you haven’t noticed. Dad has been taken to the ER and hospitalized 3 times since my last entry, in fact 3x since September. The first and third visits were pretty scary.

In late September Mom and I had noticed that Dad was acting oddly for a day or two, short periods of rapid breathing and vague indications of distress, so we called upon a nurse practitioner who had seen Dad a few times before to come check him out. She noted an unusually low heart rate, and ordered an EKG, also blood labs. We waited on the labs to come back, and waited and waited . . . . A week passed and we never got the labs back.

Dad’s condition didn’t seem to change much for a few days, so we weren’t too concerned, but we kept a close eye on him. Then, on a Saturday (would have to be a weekend, of course), his level of distress seemed to go up and so we called his primary care doctor who recommended we get him to the ER directly, and so we did. The ER Dr. was immediately concerned that he was in sepsis and talked about putting in a central line–a dramatic procedure–pending the lab results. I was cautioned that he might not “make it.” I cursed the delay in the labs that had been ordered and wondered whether knowing those results would have led to an earlier intervention. In the ER tests showed he had a serious UTI, but not sepsis, so he was put on an antibiotic and hospitalized. Apparently he had some heart anomalies, so he spent a couple of days in the cardiac unit. The conclusion was that Dad’s heart was “not bad for a 93 year old.”

Dad was a bit out of it for the first day and a half but then started to get back to his normal state. He was on IV fluids of course but I worried about getting some food in him. On officious and possibly incompetent speech therapist determined in a five minute evaluation that he should have a feeding tube, because he was in grave danger of aspirating his food. I explained that I had been feeding him for a couple of years and we never had a serious incident of aspiration, and further we didn’t want a feeding tube put into him.

CAUTION: Be EXTREMELY wary if a professional recommends a feeding tube. There is a lot of evidence that they cause more problems than they prevent. A person can still aspirate food with a “temporary” feeding tube in place, they often lead to infections, some patients will try to pull out the tube, and a tube brings a halt to the pleasures of eating, one of the few pleasures still remaining for my father. A “temporary feeding tube,” I learned is typically in place for a period of months and almost always leads to a permanent tube. If your loved one is in this situation do your research! Sorry to say a lot of families just go with the speech therapist’s recommendation. A couple of Dad’s nurses at the hospital made a point of telling me and Mom that they applauded our decision to not get a feeding tube for Dad.

So, I continue to feed Dad–it is always an anxious time, (I don’t let anyone else put anything in his mouth, not even at the hospital–not food or meds) but with the addition of a thickening agent (SimplyThick–it’s terrific though expensive) for the liquids and a food processor to make purees, we do pretty well.

Back at home, about two weeks later, Dad started showing some of the same signs that led to his previous hospitalization. Again I called his primary care doctor who said to take him to the ER. This time I called an ambulance (on a Friday night of course). His ER tests showed no UTI and no rise in white bloods cells. The ER Dr. (a different one) wanted to keep him in the hospital for a few days for observation. The admitting physician was less interested in hospitalizing Dad and suggested just keeping him overnight. Well, Dad was discharged at 3:30 AM, which I learned the next morning when I arrived to feed him breakfast. So, a false alarm . . . almost.

Then, just a couple of days later, we noticed a recurrence of this odd distress, rapid breathing, some signs of complaint. Having seen that odd kind of distress twice before–once in the presence of a UTI and once without a UTI, I wondered whether some kind of heart arrhythmia might be the cause. In this episode, Dad returned to normal after about 45 minutes. But couple of weeks later Dad had another episode, with greater distress, and the rapid breathing. We watched for more than an hour, seeing the distress rise and fall, then rise again. In the end, after about an hour and a half of anxiously waiting for the episode to pass, Mom and I decided to call 911.

The medics arrived and set up their monitors. Dad’s heart was throwing a lot of PVCs–an abnormal reading which can degenerate into a fatal pattern. The medics picked him up and carried him to a stretcher outside–Dad must have thought he was being abducted. In any case, as soon as they got Dad on a stretcher, the medic who reported the PVCs said his heart had snapped out of that pattern and was giving more normal signals. They took him to the hospital ER and then he was admitted to the cardiac unit. He was there for 6 days, and at no time did his cardiac monitor go off. After a few days an ejection fraction test was done, and showed his EJ was 25%–not too good. but not fatal either. His lung Xray seemed to show a little congestive heart failure and perhaps some pneumonia–possibly aspiration pneumonia. I insisted on additional tests because we still had no clear answer regarding the cause of the episodes–certainly his EKG observed by the medics was potentially the cause, yet, while he was hospitalized I observed additional episodes, and his heart monitor did not show an abnormality during any of the episodes. Most puzzling.

An EEG revealed some possibility of seizure activity, and a CAT scan of his abdomen revealed a growth on one kidney–likely malignant, but no way to be sure, other than an invasive biopsy.

I felt hopeful that the EEG finding had offered a new clue regarding the cause of his episodes. The Dr. prescribed Keppra to prevent seizures, but this proved to be a problematic. The Keppra knocked Dad out so much that it was not safe for me to feed him. Even when the Dr. redcued the dose by half, he could barely open his mouth or swallow. So, we discontinued it altogether, fearing he would choke or starve if we went on with it.

After stopping the Keppra he got back to normal after a couple of days and was able to eat reasonably well again. I feared more episodes of the kind we had seen before, but Mom and I decided not to call an ambulance next time. We also decided to enlist a hospice service. Their nurses have been coming weekly and report that his lungs seem completely clear.

So far, Dad is doing well at home–much better in fact, and we haven’t seen additional concerning episodes yet. We’ll call hospice if one arises. I am a bit concerned whether I can get hospice to treat pneumonia if it takes hold of him again. I am told that I can revoke hospice at any time, if we want to pursue aggressive treatment of pneumonia. So, this remains a bit of a gray area. I can imagine a time when we might elect not to treat pneumonia, but I think that would be somewhat distant in the future, or after a succession of 2 or 3 bouts and the realization that we cannot stop recurrences.

And, Mom’s problems seem to be getting worse. She is tired of going to doctors, but I worry that they are missing something serious.

So, for me, all this is getting overwhelming. Both parents with serious medical issues at the same time, and I am feeling exhausted. My usual ways a recharging aren’t working too well right now. Hence, the lack of posts. But, somehow, writing seems to give me some energy, after all.

BTW, a New York Times article worth reading. Bringing Health Care Home
http://www.nytimes.com/2011/12/05/opinion/bring-health-care-home.html?_r=1

Also search for these NYT articles–
When They Cannot Eat
When the Demented Receive Feeding Tubes

Sorry for the length of this post, but I want to get all the medical stuff out of the way, so I can get back to more personal subjects.

Thanks for your patience.

I came across this article a few days ago, and I take it very seriously, and you should, too.  My Dad at the age of 83 had to have surgery for a hernia. He suffered from post-operative delirium and his cognitive deterioration seemed to accelerate after that. Less than a year later he was diagnosed with Alzheimer’s. At that time a geriatric psychiatrist mentioned to me that for some reason surgery had a “trigger effect” in some people. Later I read about the dangers of isoflurane, often used for anesthesia, and the connection to post-operative delirium and later Alzheimer’s diagnosis in a Boston Globe article.

Now, this article from research in Australia which further suggests that anesthesia is connected to the onset of Alzheimer’s. So, it is extremely important for an elderly person to have an unequivocal need for surgery before going under the knife–the risk of conversion to Alzheimer’s must be weighed against the benefits of surgery.

Article from the Australian National Affairs

Boston Globe article “Breaking through delirium: Hospitals target a common yet serious complication among elderly patients”  July 6, 2004.

Also see my earlier blog post, First Signs.

As it happens, I go with Mom tomorrow to see her doctor to determine if she requires surgery for a prolapse. Pretty worrisome situation.

Some suggestions for those who are caring for a person at the beginning stages of the illness.  Review their medical, dental, eye care history and soon arrange for any procedures that might become much more difficult or impossible later.

For example, we knew before Dad had advanced very far in the illness that he had cataracts, but at the time we didn’t have presence of mind to go ahead and have them removed. As time went on and Dad became less able/willing to cooperate with the directions from a physician or his family, for that matter, we reached a point when it became impossible to  undertake some needed procedures. Now it is almost impossible even to put eye drops in his eyes because he will immediately shut them and refuse to open them for any reason. He cannot cooperate with any follow-up care for preventing infection–likely would not tolerate an eye patch or other protective measures.

And a similar problem exists for dental care. Fortunately Dad has incredibly strong teeth, a feature he always attributed to his inheritance of Cherokee genes. He does cooperate nicely when I brush his teeth, but forget the dentist’s chair!

A corollary to these cautions is to actively work to establish routines as soon as the disease process is recognized. Although the person you care for may be able to brush his own teeth at the time, odds are that eventually he won’t. I suggest that you can start the routine  of you brushing his teeth perhaps once or twice a week, perhaps by saying–“I just want to be sure you haven’t missed any spots”–or whatever might work in your situation. When the time comes when he can’t do it himself, the routine is already established, isn’t seen as an intrusion or threat, and likely will be accommodated without resistance.  We started using a Rotadent toothbrush for Dad early on. He got accustomed to the sound and feel of it and has no problem letting me brush his teeth. I suggest the Rotadent to everyone–it is quiet and effective. Follow-up with Toothettes (a sponge swab) moistened in a bit of mouthwash.  The idea here is to start giving them help in this way before they absolutely require it, but do so in a graduated way that enables them to retain skills and independence as long as possible.

So, get your loved one in for an eye check-up, a dental exam, and a physical exam, and take care of any issues that predictably will be harder to manage in the long run. And establish any new caregiving routines well before circumstances demand them.