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I am a Physician and psychiatrist, and my wife was diagnosed with Alzheimer's Disease at 65 years of age. I was aware of her having problems 2+ years earlier. My wife is/was a gifted clinical social worker who has been loved by all who have known her. Even now, she draws people towards her despite having severe aphasia. I have gone from being a senior clinician who treated patients with Alzheimer's Disease to a loving and grieving caretaker for my girlfriend of 52 1/2 years.

Initially, there was a new and different form of intimacy. We had a special kind of closeness, sharing, and collaboration. Knowing her as I do, we were able to arrive at common understandings whenever she "hit the wall" mid sentence. The inexorable toll that Alzheimer's has exacted during her participation as a subject in two failed research treatment studies as well as my own present role as a control subject in a radioactive Tau protein identifier in PET scans study has redefined aspects of our lives without changing our closeness. I hate the illness but wouldn't want to be kept from providing care for my wife. As Pat Summitt (the extraordinary former Univ. of Tennessee Lady Vols) and her son Tyler have learned, real caring is a challenge but also incredibly gratifying. That being said, there is nothing glorious about this illness. The longer we live, the greater the likelihood that we will each develop dementia which increases progressively with age. If we don't direct more resources towards the early identification and treatment of Alzheimer's disease, global society will bear an impossible financial and emotional burden.

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DoctorJC~Jessie is correct this site is most helpful. Your post is also helpful. I hope you are not discouraged.
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OK then. Here's the info without a link. If you want, google the A4 study or Reisa Sperling, MD, MMSc. at Brigham and Women's Hospital CART (Center for Alzheimer's Research). That way you can get information on how all of us can help in detecting and treating Alzheimer's Disease. This is an NIH coordinated study with Dr. Sperling as the lead investigator. There should be no cause to delete this message.
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Sandwich - what a great post! Amen! You have it sooo right when you say it is impossible to save the amount of money that these assisted living homes are charging. There are a few people out there getting very, very wealthy on these homes. When you share a house with a roommate, shouldn't your 1/2 of the cost to "rent" go down?? hmmm...and utilities....and food.....Then the glorious thing they do, if you outlive your private funding, most will not accept medicaid and you get kicked out to God knows where Nursing Home.

What I can't figure out about that. I recently visited one of the assisted living communities and they have a level of care called "long term care". Now, this place will let you enter at $10,000.00 a month plus a $90,000.00 deposit. They say the deposit is refundable, but if you enter at this level, you have to pay at least 2 full years before they will accept Medicaid. And, get this, when Medicaid does kick in, they pay $7,000.00 per month and the home accepts this at a "poor loss for them".

That $10,000.00 per month by the way, does not include the washing of clothes. They will charge $50.00 per month for that. And I saw these people on that level. They were functioning, meaning not all lying in bed and waiting to die.

Yep, some people are getting very, very, very wealthy out there.
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DoctorJC, any external links except those to .gov sites or alz.org links are taken down. It was nothing personal. Any of us who have posted links have seen our messages deleted. Yes, I'm sure the site has commercial interests in doing this, but their humanitarian side outweighs the commercial side. It is just the rules of the site and not about if the links are good or bad.
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The economic toll this is going to take on the country is terrifying. Regular people will have nothing whatsoever to inherit, as 100% of resources are spent on care. The most expensive care possible for 10-20 years a pop with no way possible to save up that much money in a lifetime. When the family can't pay, the government has to step in. There are no free kittens.

The funding has to come from somewhere. I absolutely do not begrudge paying the nurses, aids, personal care attendants, and doctors who provide care. Most of them should make a lot more than they do to ensure quality caring people take those jobs.

I want to put in my healthcare directives that when I become incompetent, please do not give me medications to prolong life. Do medicate me to be non-violent, out of pain, and keep me comfortable. Then let nature take its course. I absolutely do not want to be among this growing contingent of 95+ year olds and centenarians contained in a dementia facility waiting for their brains to stop so their body can stop. I do not want to be propped up with blood pressure pills, blood sugar pills, cholesterol pills, heart pills, and the like to wring that much more time out of me. Let me go. Let me go the old fashioned way which may be sooner than modern medicine can keep me around and that's totally acceptable to me..
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That website must be down.
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http://www.nia.nih.gov/alzheimers/clinical-trials/anti-amyloid-treatment-asymptomatic-alzheimers-disease-a4

This Natioal Institute of Health link shortcuts to a siet site that lists all the testing locations
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I keep getting an error. Found the National Institutes of Health
http://www.nia.nih.gov/alzheimers/a4-study
That site also has the same link, that delivers an error.
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I have made recommendations twice but the moderators keep erasing them. Sorry. This site seems more driven by commercial interests than by truly helping those who want to treat and avoid Alzheimer's. What a shame. I write this with the full expectation that it won't be published. Shame on you!
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DoctorJC, do you have any specific suggestions for how we might contribute? As active caregivers we may not have sufficient resources to do much, but some of us may be in a different situation after caregiving ends.

My husband's brain tissue is in a brain bank in Mayo's Jacksonville location, for use in research. I had a spinal tap as a control subject for a Michael J Fox study and I'm looking for other opportunities. I donated all memorial contributions for dementia research, but my husband's 10 years of dementia pretty well wiped my out financially and I don't have much to contribute that way.

What are your suggestions for all of us contributing?
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Yes and it seems like there isn't enough urgency regarding the treatment of this disease. The ripple effects are going to be crippling and changing family dynamics - hopefully to bring people closer together to where we realize that we need each other. But unfortunately we see far to often on this site how it can challenge relationships and cause divisions instead of bringing people together. It is remarkable in that it can bring out the best and worst in people.
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Yes, you are very right. While there are different studies on going, we are having to respond with what we know and are guided by the dr's and our own research. It is challenging and gratifying but I am continuing to learn many things through the process. Blessings to you Doctorjc.
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You are so right, not only about the identification and treatment of Alzheimer's but of all types of dementia.

I am so sorry you have to join the ranks of caregivers to persons with dementia. You are right about that, too. It is extremely challenging but also incredibly gratifying.
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