Was surfing the net today and ran across this site...very interesting. If you want to go there just do the following....google...then type in...... Predicting time to nursing home care and death in individuals with alzheimer disease.
Sorry, I couldn't get my cut/paste to work again today and I tested just typing in the above and it works fine.
This was a study that was done by a group of doctors and/or students and submitted and printed in the AMA mag. Just takes a few minutes to take the small test.
Did those who calculated have the MMSE score? Despite H having had four full neuropsych evaluations, and I just re-read them yesterday, he never had that test. Also, he has FTD and/or general cerebral atrophy, but I took the test anyway.
Please, direct me to that soundproof room on another thread.....
Kathryn is now under Hospice care and they predict less than six months so I tried this hoping it would say someting different. When it calculated it said 25% of the people with these same figures die with months. It appears that everyone is predicting the same out come, but I don't feel like it is right. Everything in me says that is not going to happen.
It has been a month since Hospice has stepped in to assist by Dr. request. They asked me about the DNR at that time but it took me until yesterday to fill it out. I will be givimng it to them this afternoon. This is the single hardest thing I have ever had to do in my life.
That is just another one of the "ifs" in this terrible condition. If your spouse has other medical conditions you might be in the 75%...if your spouse is in good health you might be in the 25%...who knows?? And, the most important thing is that some plan on keeping their spouses home until the end and others have to consider other places...so that is another big "if". Just thought the site was interesting, but don't put your faith in it telling you very much.
I am sorry but I find the calculator to be a joke. There is just not enough information given for it to give any real guess. I do think it odd that when I did this in 2008 and when I did it just now, the results were completely different. He is far worse than he was 4 years ago but got better results!
In 2008 it said nursing home within 6 months to a year and death within 18 months to 3 years.
Now four years later, with him being bedbound and needing total care and not even able to take the MMSE, they say....Based upon the patients that we have followed, 25% of patients with a similar clinical profile require nursing home care within 8.9 months, 50% within 13.3 months, and 75% within 18.8 months.
Based upon the patients that we have followed, 25% of patients with a similar clinical profile die within 80.3 months, 50% within 80.3 months, and 75% within 80.3 months.
oooook, he has been in a nursing home for 3 years, but I do hope they are right about how long he will live!
My husband has been diagnosed with Lewy Body Dementia 4 years and has gone downhill very very slowly. He can still make his own lunch, unsupervised. So I was feeling that this is going to go on forever. And I know it could indeed be another 10 years or more, but this calculator gives me an alternative mental image (four years). It helps me not feel so overwhelmed about how can I plan if I don't know anything? I can think about two possibilities, 4 years and 10 years.
I think the calculator is better than nothing. Of course, there will always be exceptions. I put in the data and it came up with the same predictions that Steve's neuro did last summer (of course, maybe he was using the calculator)!
Maybe the calculator is a reminder that there is an end ......maybe on the days that seem most frustrating and exhausting it's a reminder that at some time or point it will end. I went, look and tried it too. I guess I was struck that there would be an end and that saddened me more than I thought ......because if you take away being on Pee patrol 24/7 and being exhausted all the time ........well I love the guy and don't mind taking care of him. Whats hardest for me to take is not the disease but when the disease and husband become one, don't know if that makes a bit of sense. But these days what does........