Wednesday, November 30, 2011

Seasons Change

Monday evening when I arrived home, I smelled it. The clear stench of burn. Fire. Smoke. The kind of odor that permeates walls, fabric, and carpet for days, if not weeks. Mom scurried to the kitchen door to let me in and excitedly tell me that she burned her dinner. Since she has been eating waffles lately, I automatically assumed she toasted a waffle too long in the toaster oven. We've all done that at some time in our lives. Created a charred, crusty, ashen, smokey trivet of yuck.

It actually must have caught on fire or heated to such a high temperature that it melted or began to ignite. The stench of fire, smoke, and burn is still trapped inside the house. 40-hours later. Every room. Each closet. Every drawer. Inside the cabinet. Under the bathroom sinks.

Last night I couldn't sleep, perturbed about how I could possibly still go to the office most days and leave mom in the house alone. I can't. So in a sleepless daze I went to the kitchen to warm up oatmeal in the microwave. It was in that moment I realized Mom had not toasted a waffle two days before. She microwaved a frozen meal in a little black plastic TV-tray or leftovers from the refrigerator. The horrific odor leaking from the microwave was unbearable. I thought the microwave was on fire - deep inside like an electrical fire. However, the smell was not electrical so I doubt that is the issue. It was definitely the fire/smokey odor. It must be a leftover smell trapped in the unit.

At 4:00 AM, instead of eating my oatmeal, this choking smell prompted me to go outside to the trash barrel to take a gander. At the very bottom of the trash barrel, wrapped in clear plastic was a piece of china dinner plate, blackened and broken with some kind of fire-charred food burned on to the plate. It looked like she placed a TV-dinner on a plate and cooked it for an hour or more.

This morning as I watched Mom put a bagel in the toaster oven, I realized how swiftly she can become distracted by anything. I watched her instantaneously forget about the bagel and toddle over to the living room to watch a raven and squirrels outside the front window. I could smell the bagel beginning to smolder in the toaster over and it was then that I became truly cognizant of how, like the seasons have made their complete change without us realizing, so has her brain. 




Monday, November 28, 2011

Sunday, November 20, 2011

I Don't Remember That I Don't Remember

On more days than not, Alzheimer's Disease has reduced my mother's mental capacity to that of a child. On the occasional days when she is more adult-like than child-like she says, "Don't worry about me, I don't know it so don't feel bad. I don't remember that I don't remember."

But I remember that she doesn't remember. It is distressing, saddening, maddening, frustrating, and exhausting. If she is currently a stage V, that means that she still has two or three stages left and it will get considerably more devastating. Her doctor told me to prepare myself.

How?


Saturday, November 5, 2011

Dear President Obama


Dear POTUS and Mrs. Obama,

May you find later in life that you have saved enough money - cold, hard cash - and purchased long-term care insurance to provide for yourselves in your graying years. Money is what will see you through actually. The only thing the long-term care insurance will do is relieve your partner of additional burdens, possibly physically and hopefully monetarily.

The cold hard cash will come in handy when MediCare refuses to allow your physician to prescribe the anti-depressants and Alzheimer's medication you need should you be diagnosed with Alzheimer's Disease. You see, MediCare will not cover a regular physician to prescribe the anti-depressant, which you will desire when you realize you can no longer remember things and may want to kill yourself, prematurely of course. Part of why you can no longer remember things is because MediCare won't let your physician prescribe the Aricept to slow the progression of Alzheimer's Disease without the consent, referral, and diagnosis from the neurologist who originally diagnosed it six months prior. Oh, and by the way, in that prior six months, you will probably have already been evaluated by a psychiatrist, a neurologist, an internist, and neurosurgeon. All of whom will mutually decide you do indeed have Alzheimer's Disease. All of whom will agree that depression is a major part of Stage V Alzheimer's Disease. All of whom would love to prescribe the medications, but are forbidden to by MediCare.

You see, once that diagnosis is made, you will have to follow-up with the internist. The internist will spend hours with you taking care of your entire being. He is like you, POTUS. In charge. However, his hands are tied in bureaucratic red-tape when it comes to prescribing the proper medication. Similar to your situation with Congress. And so, you will ask that internist for a referral to a psychiatrist for yet another evaluation so that psychiatrist can dispense the anti-depressant. It will take six weeks to receive that referral. Then you, or Mrs. Obama, will be able to call that referral and make an appointment. At that time, you may wait up to six more weeks to be seen by the psychiatrist. Now we are at twelve weeks. An anti-depressant takes approximately four weeks to kick-in. Hopefully, you will not have been in such a stupor by week twleve, you won't off yourself before the long anticipated meeting with the psychiatrist. Hopefully, you will hang in there.

Now the odd part of all of this MediCare sham is that the internist and neurologist are the doctors who will manage the day-to-day care of the Alzheimer's patient. So why then, I ask you, should a psychiatrist dispense the medication? A psychiatrist who generally does not deal with Alzheimer's patients. A psychiatrist who will have no idea whether or not the medication interferes with your blood pressure medication or your heart medication. Or what the correct dosage will be for you because the psychiatrist is a one time meeting. That doesn't really matter in the end, POTUS, because in all honesty, the dispair you will feel as your brain withers away, and the dispair your loved ones will feel while watching you, is what matters. This is where cold hard cash comes in.

If you have saved enough cash, (hold off on Wall Street investments for awhile, sir) you will be able to pay any doctor cash for the visit and the pharmacy cash for the medication. This comes in handy when seeing the doctors. POTUS and Mrs. Obama, you need to realize that if you dropped your MediCare insurance, your internist could write that prescription and get you started on the anti-depressant and Aricept - YESTERDAY. Not twelve weeks from now. If you have cash, and not crappy MediCare with all of its limitations, doctors will treat you - and treat you well. They will jump on that gravy train and take care of the depression that comes with Alzheimer's Disease. Oh, and at this point you may want to skip the Aricept. It is too late anyway.

So the long and short of it is, your new health plan sucks. MediCare sucks. And if you want to make things better, follow the lead of Canada. Have REAL socialized medicine. If a citizen can and wants to purchase separate insurance, let them. But every Canadian I know that lives in our great nation still flies back to Canada for all medical needs. My Canadian friends are shocked and appalled that Americans have such disdain for the Canadian healthcare system when in fact, our ideas really blow. They aren't working. Meanwhile, my Canadian friend's parents who are suffering from Alzheimer's, dementia, and other memory related diseases are not waiting twelve weeks for an appointment. Nor are they complaining about less than lackluster care. This poor perception of socialized health-care in Canada seems more like uneducated opinions that Americans have built up and a myth perpetuated by society.

Unfortunately, it sounds like I am bashing MediCare. I do not mean to. I am thankful that the graying generation has some kind of coverage. However, I am seeing first-hand how devastating MediCare really is and how and why seniors have shoddy care.

On a side note, seniors need eyeglasses and dentures. Two expenses that most senior citizens cannot cover. Funny how MediCare does not cover the two basic necessities seniors need. Save your money. You will need it.

I voted for you once and will probably do so again. Please revisit your thoughts on health-care, if not for the nation, at the very least for the generation over 60 years old. Your ideas are bogus. Or they may have been butchered by Congress. Either way, MediCare stinks. Socialized medicine, even for seniors only, is the way to keep people healthy. And off suicide watches.

Thanks so much.






Wednesday, November 2, 2011

The Patience of Job

It has been awhile.
Had to get mother moved in with me and situated.
Took care of some of her major health problems. HAAAA
Major. What is a major health problem really when you have...
ALZHEIMER'S?

Shall I offer you her correct diagnosis? Yes indeedy. She has Alzheimer's. Unfortunately, she is at a decent Stage V. She has Vascular Dementia according to her CT Scans and MRIs. Oh, and let us not forget the Normal Pressure Hydrocephalus. After viewing her scans with her neurosurgeon and neurologist, I see where each of these diseases is located in the brain, what formations they make, and except for the Alzheimer's, I understand why she has them. The Alzheimer's threw me for a loop.

Mom is 70 years old. 71 actually. She had a birthday recently. You wouldn't know that. She acts like a five-year old trying to act fourteen.  It is so bizarre and hard to get used to. She had shunt surgery recently for Normal Pressure Hydrocephalus, which she does indeed have, however the Alzheimer's seems to be worse. New doctors and many more opinions to come.

Becoming a caretaker is not something I ever thought much about. Our family has always taken care of the elders. Living with multi-generations is natural. Nursing homes and long-term care facilities were never part of our family culture. Having said that, I look back over the family history and realize that multi-generations living together was done with our grandparents and those prior who did not have Alzheimer's or Dementia.

Having my own fourteen-year old at home as well my 71-year-old five-year-old fourteen-year old, I am not quite sure how this will play out on any of us. Mother for the most part lives in a mental state of another level. Never lucid. "Present" on a rare occasion. When new people come over, or she goes out in public and chats it up, I see she can be somewhat present for them. Returning to her smart, witty, well-educated monologues and exchanges of conversation. People, doctors included, look at us like we are nuts when they hear me talk about her memory issues; NPH, Alzheimer's, et al. Honestly. Her doctors are so new to her, they do not know her as lucid. Ever. So they see this almost phony present mother. It is incomprehensible. Literally.

Everyday is a new day. In some of her more present moments we actually have meaningful conversations. She cries and tells me she doesn't want to live in a perpetual state of forgetfulness, rage, (that is common with Alz.) depression, and all the other ugliness that comes along with it. BUT the bright side of that, as she continually reminds me is that she can't remember any of it. So it rarely pains her anymore to not remember things. She has no idea if she asked the question thirty-six times in as many minutes. She has no idea that she has read the same page in her book over and over since May. May!! May, for god-sakes. So that is her relief. Maybe. I guess I have to believe her. But that is p-a-i-n-f-u-l to watch. Watch her walk around in complete oblivion. When she is present for a moment she says, "Don't worry about me. I don't know it."

I do worry though. Maybe it isn't worry as much as utter heartbreak. What are you going to do...? Just keep remembering that she is the one suffering. She doesn't want this memory loss. She doesn't want to miss her grand-kids growing up. She doesn't want to walk around acting like a five-year old trying to be a fourteen year old. She wants to read. She wants a productive life with her friends. She wants to drive again. Or hop on the jitney and head to the library, the track, or the market without feeling like a prisoner in her own mind.

It is tiring to see. Sadness takes over sometimes. It is unbearable and this is not the worst apparently. A few people have told me I have the patience of Job. Coming from a spiritual, non-traditional religious upbringing, I'll have to read up on Job. Job. Patience. We all have it. Some just have patience mixed with a larger dose of empathy and love. I just try to show respect for her so she won't feel a lack of dignity somewhere in that haywire brain.  Is that the patience of Job?

All caretakers need the patience of Job, if that is the case.



"Simplicity, patience, compassion. These are your greatest treasures."
~ Lao Tzu


 
"Adopt the pace of nature: her secret is patience."
~ Ralph Waldo Emerson


"Humility is attentive patience."
~ Simone Weil