Questions, But No Answers

I am up in the middle of the night with more questions than answers.

To recap hubby was in the hospital from Tuesday evening through Thursday morning and this doesn't quality as "three days". I suspect that his UTI included this time or started during this time. Then when he returned to the emergency room Saturday night officially UTI was diagnosed and he was sent home with an antibiotic prescription. Imodium was added because of diarrhea from the antibiotic.

What kind of at-home care does Medicare cover? Maybe none. Maybe Preferred Care doesn't do what I need it to do.

If a patient needs skilled nursing or rehabilitation care at home, either Medicare Part A (following a minimum three-day hospital stay) or Part B (no hospital-stay requirement) can cover it. A Medicare Part C Medicare Advantage plan similarly covers home care. The care can be provided in the patient's home or anywhere else he or she stays. If a patient meets the requirements to qualify for home care (see next page), Medicare covers skilled nursing or rehabilitation care and physical and speech therapy as needed while the patient recovers from an illness, condition, or injury. Medicare also covers needed medical supplies and equipment.

If a patient needs only nonmedical home care and assistance, such as help with eating, dressing, walking, meal preparation, and housekeeping, Medicare does not cover it. However, if a patient is getting Medicare coverage for skilled nursing or therapy at home, Medicare usually pays for limited visits by an aide from a home care agency to help with personal care. If Medicare covers skilled home care for the patient, it also covers the services of an occupational therapist to help him or her relearn how to accomplish daily personal care and household tasks safely.See this link.

The primary care physician faxed an application to a nursing home that doesn't cover Preferred Care and so hubby was not admitted there. That nursing home also called the hospital which said my husband wasn't admitted. However, as I wrote in the last blog, I did check that he was admitted. Are there two kinds of admission? I have already had an end-of-the-day phone cut off from Preferred Care after being on hold for 34 minutes. I may not get answers on the weekend.

Kenny, his new volunteer caregiver and I, his wife and health care surrogate, are concerned. Others watch at a distance and are equally concerned and have suggested more help. My husband's daughter and my pastor advised that I get him physical therapy.

Again it is the weekend and there isn't much I can do. I stopped by his doctor today after returning to substitute teach (I have essentially been off two weeks) to request a "script" for home health care or outpatient therapy. At the end of the day I wasn't able to see his doctor, but just left a note.

So questions remain:

• Why didn't the Senior Center call my cell phone on April 9th? I wasn't working that day because it was the day I set aside to attend that Alzheimer's Association support group every month. My cell phone was on.
• Was he really admitted so our expenses will be paid?
• Is there some kidney problem as was hinted in the first emergency room visit? He has a lot of gas now.
• Why would my husband's doctor think my hubby was at the stage where he needed a nursing home permanently? He is still in the stage of Alzheimer's I described 7/8/12 as part one here. I have not had to write a part two yet. Perhaps it was just the circumstances of that day and the hospital visits.
• What professional will give me definitive answers after actually examining my husband? My Alzheimer's Association support group is the second Tuesday of next month. I always go to that meeting unless something else comes up. May 14th is a long time away.
• Was that the right hospital emergency room to take him to? Should I have driven farther? Years ago before his dementia hubby drove himself to the same emergency room after his legs were burned from setting fire to trash in the back yard. At that time he was sent home that very night from the emergency room, only to return to be admitted to the hospital the next day by a doctor. After a few days again they wanted to send him home again before he was ready. However,  they did get him outpatient therapy when he did finally return home. Why weren't we given outpatient therapy for his UTI?

Meanwhile my hubby is improving--so much better than last Sunday. Every day he is better and I can't see that he is in another stage of Alzheimer's. Yes hubby is doing well, but he could benefit from more help if he is having trouble bouncing back from the UTI. He does not have the wonderful sparkly personality I am used to.

When I left a note for his doctor Friday afternoon that he needs more care, I was talking with a patient (not a senior citizen) who can't get medicine she needs because of Obamacare. She has questions about Obamacare and I gave her this article here. We all have questions about Obamacare and what is down the road. Will we seniors receive adequate care if others are not now?

Subjective reporting here,

Carol

Obama Care Article for Seniors

When I was in the hospital recently, my bill was affordable--$50 a day from Preferred Care Medicare Supplement. Actually I have yet to receive that $150 three-day bill and one from the ambulance trip a month ago.

With the election things are now changing for us seniors.  I found this article by conservative Townhall columist John C. Goodman in September, but  waited until after the election to post it.

Saving Seniors from Obama Care

"Two things about the Affordable Care Act (ObamaCare) are increasingly clear: (1) seniors have been singled out and forced to bear a disproportionate share of the cost of a new entitlement for young people and (2) the states are administratively just not ready to implement the new program in time for its January 1, 2014, start date.

"So here's a simple proposal that will not affect the federal deficit: Delay the scheduled cuts in Medicare spending by five years and pay for that expense by delaying the 2014 start date of ObamaCare by two years.

"That would give everyone time to find a better way to reform the health care system. It would also impact this fall's election. Every member of Congress would be asked to vote up or down on a single question: Who do you care more about: senior citizens or ObamaCare?

"Over the next 10 years, ObamaCare will reduce Medicare spending by $716 billion. The Obama administration had hoped to achieve these spending reductions through increased efficiency, based on the results of pilot projects and demonstration programs. The problem: the Congressional Budget Office (CBO) has said in three consecutive reports that these projects are not working as planned and are unlikely to save money. As a fallback device, the health reform law set up a bureaucracy, the Independent Payment Advisory Board (IPAB), that will have the power to reduce doctor and hospital fees to such an extent that access to care for the elderly and disabled will be severely impaired.

"In fact, the Medicare actuaries tell us that squeezing the providers in this way will put one-in-seven hospitals out of business in the next eight years, as Medicare fees fall below Medicaid's. Harvard health economist Joseph Newhouse predicts senior citizens may be forced to seek care at community health centers and in the emergency rooms of safety net hospitals, just as Medicaid recipients do today.

"Consider people reaching age 65 this year. Under ObamaCare, the average amount spent on these enrollees over the remainder of their lives will fall by about $36,000 at today's prices. That sum of money is equivalent to about three years of benefits. For 55 year olds, the spending decrease is about $62,000 — or the equivalent of six years of benefits. For 45 year olds, the loss is more than $105,000, or nine years of benefits.

"In terms of the sheer dollars involved, the planned reduction in future Medicare payments is the equivalent of raising the eligibility age for Medicare to age 68 for today's 65 year olds, to age 71 for 55 year olds and to age 74 for 45 year olds. But rather than keep the system as is and raise the age of eligibility, the reform law tries to achieve equivalent savings by paying less to providers. This will decrease access to care for seniors dramatically, and ultimately create a two-tiered health care system — with the elderly getting second class care.

"A five-year delay in Medicare payment cuts can be paid for by pushing back the start date of ObamaCare from 2014 to 2016. The reason: Beginning in 2014, state health insurance exchanges are supposed to be up and running for individuals and families who lack access to employer-provided health coverage and do not qualify for Medicaid. But more than one-third of states (16) have done almost nothing to prepare for the exchanges. Another 20 states have made some progress but not enough. Further, health insurance exchanges will require significant investments in information technology that states simply cannot afford.

"The delays contemplated here will give Congress time to replace ObamaCare's command-and-control approach to health care with reforms that will empower patients, free doctors and allow competition in the marketplace.

"In the meantime, delaying the start of these two major provisions will protect seniors, save taxpayers money and allow lawmakers time to enact health reforms that actually work."

I need to contact my congressman. Let me know what you think.

Added later in the day: Nomi Prins here says that insurance company take over is the real problem.

Is Alzheimer's Hereditary?

Recently Sally and I went to a workshop on Spirituality and Alzheimer’s sponsored by our local Alzheimer’s Association. Jake and DH stayed at our home. I forgot to leave a schedule on the clipboard at home for where we were and when we would be home. Now between our two ALZ husbands, the answer for where we wives were was not contained in their memory. It wasn’t surprising, then, that both of us, forgetting to turn off our cell phones, got phone calls from our hubbies in the middle of the workshop!

At the workshop one of the speakers, a medical doctor, talked about Apolipoprotein E, better known as ApoE 2, ApoEe and ApoE4 and the hereditary connection for those who have that ApoE4 gene.

I researched and found out that 15% of us have ApoE4 in our blood. Furthermore according to this link on “Why ApoE4 Increases Alzheimer’s Risk”:

People who inherit the E4 gene from one parent are three times more likely than average to develop Alzheimer’s; those who get the gene from both parents have a tenfold risk of developing the disease.

 This information came out in April of 2007 in The Journal of Neuroscience and hence the medical community has known this statistic.

There are two types of Alzheimer’s now that have a genetic component—early-onset and late-onset. I first had the impression that only the first one of them is inherited, but they both do. Let me explain.

Early-Onset Alzheimer’s Disease strikes people from age 30 to 60 and in most cases this is inherited and known as FAD (familial Alzheimer’s disease). The AD fact sheet punished here states “A child whose mother or father carries a genetic mutation for FAD has a 50/50 chance of inheriting that mutation. If the mutation is in fact inherited, the child almost surely will develop FAD.”

Late-Onset Alzheimer’s Disease comes after age 60 and over age 85 50% may have dementia. 40 % of people who have that ApoE4 are likely to get Late Onset Alzheimer’s. See link. My husband was 71 when his AD was first diagnosed with 22 out of 30 on his Mini-Mental State Exam; I think it may have been evident when he was 70 but he scored 29 out of 30 at that time. My husband worked for the first six months after this discovery as I reported early in this blog, and is still in stage one of the disease, taking advantage of Exelon and Namenda and coconut oil and everything else I can give him including Ribonucleic Acid, D3 and turmeric.

The causes of Late-Onset are not as predictable and may include a combination of lifestyle, environmental as well as genetic factors. Many countries with different environments and food patterns do not have the epidemic of Alzheimer’s as we have. My husband's parents did not have Alzheimer’s. Researchers with GWAS (genome-wide association study) are discovering other genes that may include a risk for Alzheimer's.

My husband has not only Alzheimer’s but also Vascular Dementia. Heart trouble and diabetes can result in Vascular Dementia, but Vascular Dementia is not inherited. My husband has had a heart attack and also developed type-two diabetes with his heart attack in 2004. Perhaps we can avoid heart disease and late developing diabetes with our lifestyle choices and hence not get Vascular Dementia. This is why I am dieting now and taking measures for my own health. My health will help me continue to be my husband’s caregiver, since no insurance provision can now be purchased for his long-term nursing home care and I will be the one to offer this long-term care.

Epigenetics is a new science. The thought is that certain genes can be switched on or switched off by “environmental factors, such as exercise, diet, chemicals, or smoking, to which an individual may be exposed, even in the womb.” See this Link. One family member may get Alzheimer’s and another may not. My late father had late-developing diabetes and then strokes; his brother, my late uncle, did have both heart trouble and Alzheimer’s. My uncle was probably healthier than his brother, my father, but nonetheless he had some form of dementia at the end.

How does Alzheimer’s spread in the brain? New studies reveal that it is not a virus or bacteria that is spreading Alzheimer's in the brain, but distorted protein know as tau. In an article in The New York Times early this month  the answer came from studies at Columbia and Harvard that “it may be possible to bring Alzheimer’s disease to an abrupt halt early on by preventing cell-to-cell transmission, perhaps with an antibody that blocks tau.”   See article.

What should you do? See if you have that ApoE4 gene and take care of your health so basically you don’t switch on or off an inherited disease. New interventions and treatments are coming down the pike and the government is putting more into research for this disease. Maybe you can get in on research for the National Cell Repository for Alzheimer’s Disease by volunteering your DNA. See www.cnrad.org or call 1-800-526-2839. Another tip for young people is be sure you get long-term nursing home insurance before you might be diagnosed with AD because once diagnosed you cannot get that insurance. I have that insurance because I was not diagnosed with AD, but we can't get it for my husband.

How can you manage with these uncertainties? Prayer and waiting on the LORD. This life if not all; God is absolutely there for the patient and the caregiver who fear the LORD.

But the eyes of the LORD are on those who fear him, on those whose hope is in his unfailing love to deliver them from death and keep them alive in famine. We wait in hope for the LORD; he is our help and our shield. Psalm 33:18-20 NIV Translation

The Fear of a Caregiver

Those of us who are caregivers may have a whole lot to fear: our loved one may wander; hallucinations that result in violence; difficulties communicating; how it will all end; will our money run out; will our loved one continue to trust us or will they become suspicious; will they tell us if they have a pain; will they leave the stove on; will they leave the house naked; will I be asleep when something happens; end-of-life decisions when they can no longer swallow; will the loved one accept outside help so we can get a break; what if I can't take care of the loved one and how can I afford nursing home care; how can I maintain our home when it used to take two to do that. The worries are endless.

So the Obama administration has a new health care initiative for Alzheimer's that promises:

"In addition, the Fiscal Year 2013 budget to be released next week will include $80 million dollars in new research funding," US Department of Health and Human Services Secretary Kathleen Sebelius said today during a media briefing at the National Press Club. "Altogether, the Fiscal Years 2012 and 2013 investments total $130 million in new Alzheimer's research funding over 2 years, more than a 25% increase over the current annual Alzheimer's research investment," she said. The initiative also includes an additional $26 million in caregiver support, provider education, public awareness, and improvements in data infrastructure." See link.

How does the Alzheimer's and caregiver support get funneled down? How comforting is this?

What is comforting is the words that I read in my Bible yesterday from Psalm 31:1-7, NIV.

LORD, I have gone to you for safety;

Don't let me ever be put to shame.

Save me, because you do what is right.

Pay attention to me.

Come quickly to help me.

Be the rock I go to for safety.

Be the strong fort that saves me;

You are my rock and my fort.

Lead me and guide me for the honor of your name.

Free me from the trap that is set for me.

You are my place of safety.

Into your hands I commit my very life.

LORD, set me free. You are my faithful God.

I hate those who worship worthless statues of gods.

I trust in the LORD.

I will be glad and full of joy because you love me.

You saw that I was hurting.

You took note of my great pain.