New to board - diagnosis??

[momster]

Hi - I usually post on CN about my kids, but I guess I'll be visiting this board, too, now.

My MIL has never been what I call a high functioning person, but I think that was to some extent a choice - she has a PhD (ever hear of the absent minded professor?). She has always done things that don't seem right, but it's gotten bad this last year, ending up with us talking to a lawyer about a guardianship for her. The doctor won't be cornered on an alzheimers dx, but he does say she had dementia. I'd like your thoughts on a dx, and also on what is the appropriate place for her to live:

In the past few years, I have become concerned about how she handles her money and finds her way around. Before she retired, she made some bad choices about where to be a visiting professor, and came back early from some trips. Last winter she had a bad fall resulting in a concussion, and her decline has gotten worse since then. It seems like she goes through phases of lucidity and phases where she is really out of it. For example, last spring she was supposed to visit us (we are a 6 hour flight). When her flight landed she wasn't on it. About the same time (6 hours after take off), she called a friend, and told her she was lost. The friend finally figured out where she was and got her - MIL was very disoriented and the friend brought her to the ER. The ER found her so dazed that she was sent home w/ instructions for round the clock care, but a week later her doctor thought she was improved. Since then, some days she's been pretty with it, some days not. Sometimes she's had trouble using the phone. Her car is all banged up. And she was unwilling to stop driving, or to move from the top floor of the 2 family house she owns. Before Christmas, she was found by friends in her tub - stuck, apparently for days. Even tho she was in a working tub she was dehydrated, and of course disoriented. She keeps making up stories about the tub to make it seem more logical. She spent a week in the hospital, because we had to make arrangements for assisted living - the hospital would not release her to her home, primarily b/c she needed a walker and couldn't get up the stairs. After a week, she ended up at the hospital with a stomach bug. She couldn't describe her symptoms, all she could do was rub her stomach, vomit and insist that she didn't live in assisted living, but in a duplex. Again in the hospital a week. They did an MRI which shows significant brain atrophy, more than would be expected for a 70 yo woman. The hospital has said she has dementia and is not capable of making decisions herself.

So, how do we determine if she has alzheimers, and does it make a difference if I have that dx vs just a dementia dx? How do I know when she needs a more restrictive environment - in her current environment people can come and go at will.

Thanks for listening and helping.

- momster

[moose53]

Hi, ((((((Momster))))))

I don't know a lot about altzheimers. I worked 20+ years ago as a home health aide. I had a couple ALZ patients.

I'm under the impression that the only way that they can TRULY diagnose it is by autopsy. It's usually diagnosed by eliminating everything else that it could possibly be.

You might want to read this:
from: http://arstechnica.com/journals/science.ars/2008/01/10/new-alzheimers-treatment-works-in-minutes


New Alzheimer's treatment works in minutes
By Jonathan M. Gitlin | Published: January 10, 2008 - 03:43PM CT

Alzheimer's disease is a growing concern among our aging populations. As people live longer lives, diseases of old age become increasingly common. Perhaps, as with obesity, diabetes, atherosclerosis, and other common modern maladies, there are also lifestyle or environmental factors at play. Alzheimer's, unlike those ailments of the body, has had little in the way of useful therapeutics, instead only offering the promise of an inevitable mental decline.

One reason for the lack of effective Alzheimer's drugs has been our understanding of the mechanisms involved in how the disease works. The widely accepted view has been that certain proteins that are present in nerve cells begin to aggregate together, forming lesions. Potential therapies often focus on a neurotransmitter, acetylcholine (ACh), and often have unpleasant side effects.

More recently, neuroscientists have been looking not at the neurons, but the cells that surround them as an important component of the disease. Glial cells are most of the cells in the brain that aren't neurons, and they fulfill a range of specialized functions from forming myelin to housekeeping in the brain. Some glia envelope neuronal synapses, the junctions between nerves where neurotransmitters signal from one to another, and it's these cells that are now increasingly thought to be critical in Alzheimer's.

What's surprising is the involvement of a molecule we thought we knew quite well. Most scientists working in biomedical research would be familiar with a cytokine called Tumor Necrosis Factor (TNF)-α. TNFα is a signaling protein that is deeply involved in inflammation, and drugs that act on the TNFα pathway are increasingly being used as treatments for autoimmune diseases. But as it turns out, in the brain TNFα is used by glial cells as a gliotransmitter, and increased levels of TNFα in the brain, outside of the normal physiological levels, results in impairment of synaptic function.

And that appears to provide a therapeutic avenue, thanks to those new TNFα drugs we have developed. The Journal of Neuroinflammation carries a case report of the rapid mental improvement of an Alzheimer's patient following spinal infusion of a drug called etanercept. Etanercept is a protein drug that binds to TNFα and neutralizes it. Within just two hours of initial treatment with the drug, the patient showed marked improvement on a range of cognitive tests, and following a short series of repeat treatments, continued to improve. The authors of the study have been using this treatment for several years now, and have published other case studies also showing a remarkable mental improvement.

While this case report gives cause for optimism, it must be noted that the research is still preliminary; double-blind trials have not been performed, and the case reports don't examine biomarkers of Alzheimer's disease. Nevertheless, given the possibility of reversing this terrible disease, it seems a foregone conclusion those double-blind trials are in the works.

Journal of Neuroinflammation 2008. DOI:10.1186/1742-2094-5-2


I would try like anything to get your mother-in-law into a teaching hospital for care -- so that she has the possibility of getting this new treatment when it becomes available.

Hopefully, someone will come along that has more real-world experience than I do.

This is just my opinion, but, if she's always been sort of 'off' or 'distracted', she might have some sort of neurological defect that, although, it didn't prevent her from getting an education, has prevented her from being 'street-smart'.

You definitely need to get her into a locked facility so that she doesn't go wandering off. She sounds like she's been "wandering" for quite awhile.

There are some tracking technologies that would probably be ideal to keep an eye on where she's going. Here are a couple:

http://www.gpsreview.net/free-gps-for-alzheimers-patients/ These things use the GPS technology.

GPS Technology and Alzheimer's Disease (http://www.cs.rochester.edu/~kautz/ac/NewsArticles/HealthGate/GPS%20Technology%20and%20Alzheimer's%20Disease%20N ovel%20Use%20for%20an%20Existing%20Technology%20CH OICE%20For%20HealthGate.htm)

You can find more by googling: alzheimer GPS

I think the primary goal needs to be to get her into a safe, locked facility. Once you've accomplished getting her safe, you can work on other things.

Good luck. I've never had to deal with Altzheimer's in my family, but, I do know what a tough diagnosis that is to live with. Hugs.

Barb

[Tootsie]

Hi momster and welcome to the Alzheimer's Disease Forum. There are a few of us, who have been here for some time, after finding ourselves dealing with a loved one in this situation.

From what you have posted, it sounds to me as if the symptoms your MIL is having, have actually been developing over a period of time. The fact that she was not able to complete her visiting professor assignments is significant.

There are more kinds of dementia than you could ever imagine, and whether or not this is Alzheimer's Disease is not really important. The only reason that an extensive physical exam and work up should be done, is to rule out some reversible medical condition. Things like anemia, hypothyroidism, transient ischemic attacks (TIA's), arterial sclerosis, are all things that can be treated in some way. The head injury is also significant. The MRI results also indicate that there is serious organic changes in her brain.

It does not seem as if there is enough supervision for her to be in an assisted living facility. Since she has become "lost" or disoriented in the past, I agree with Barbara (Moose) that some kind of locked facility is needed to assure safety. You do need to make sure that her assets are protected so that the necessary care can be purchased to assure her safety. It sounds as if there is more than adequate medical data to obtain a Power of Attorney. You also need to find out what kind of legal document is required in the state in which she lives, so that someone other than herself, can decide what kind of medical care she should receive.

It is not enough to have a Do Not Resuscitate order. That only deals with a cardiac arrest. The document needs to clearly state, whether or not pneumonia should be treated with antibiotics, whether feeding tubes should be used if swallowing is no longer possible, should respirators be used to assure adequate oxygen supply, etc. Keep in mind that invasive procedures can be very frightening and overwhelming for anyone with dementia.

Your MIL may not need a medical facility, only custodial care where kind and caring people will see that she is fed, bathed, monitored and given as much freedom as she can manage. See what is available in her community.

Above all, take care of yourself. If you are her major caregiver, keep all the necessary data in one place. I found that a small, spiral notebook, that I kept in my purse, would hold, a social security card, (stapled to the heavy cardboard cover,) her Medicare card,(secured in the same way,) her doctor's name, address, phone number, hours office answers the phone, bank account numbers with name, address, phone number of the bank, dates that Certificates of Deposit matured, her friends phone numbers and addresses,etc. It saved me a lot of time and frustration.

Do not start feeling guilty over the situation. You didn't cause it, cannot control it, nor fix it in any meaningful way. Come here and vent when you need to. Jo6, and I can help you navigate through the days ahead. Cheerio.

[momster]

Thanks for the advice - I like the gps idea - I know a couple of kids with autism who wear those bands. In addition to everything else, her health seems to be really deteriorating, so I'm wondering whether she's not going to end up in a nursing facility. Today the place she is staying in told us that she is on 'renal fluids instead of being on dialysis'. We didn't even know they had diagnosed her with a kidney problem!! I think, legally, it may be hard to get the power to put her in a locked facility.


coindicentally, tootsie, she is also in Northern ca (Sacramento).

Thanks again - I will take you up on your offer of advice and support.

- momster

[Jo6]

Momster, how is the patient coming along? Maybe I have missed a post, but I haven't seen you post. Let us know how things are going?

Take care, Jo