I confess to not reading the entire thread, I just skipped to the end to ask about what this type of care costs and how patients/family pay for it. Getting to the point where I am at least thinking about long term care insurance and something like this is what I think about what I would want that insurance to cover. Also, once someone enters into this type of care, what is a typical life expectancy? The plans I’ve seen so far have a limit on benefits and benefit term lengths (2 to 5 years for the policies I’ve looked at). Obviously there are other factors and scenarios to consider, but I’d like to get an idea of what is inadequate coverage and what is excessive coverage.
Dag I confess I have NO IDEA about insurance, how it is paid for etc. I am Canadian, so in hospital treatment has no direct out of pocket for patients, unless you are paying for a private or semi private room, tv rental and other extras. Ward beds are paid by provincial health insurance, as are the surgeries/tests/treatments/medications/bandages given in hospitals. (*Some of this varies province to province, a few things may have a co payment, but not many. No one is turned away from any public hospital here on inability to pay, but please do not let this thread disolve into a health care debate)
Long term care always involves cost. Where I am basic per diems are the same, the extras (this includes semi or private rooms, and comfort allowances, etc) are added on. I believe currently in Ontario it works out to rough and dirty $1800-$2000/ month. I know there is some kind of thing that our social safety net kicks in for people unable to pay, but social workers and business types hammer that out when a patient is accepted into care. LTC insurance is something I have heard about but know nothing about.
Sometimes we have the problem that our floor physician or the geriatric psychiatrist will order a medication that is not covered by the provinical formulary or other benefits the patient may have. Sometimes families refuse to continue a medication like Ebixa because it (currently, in Ontario) costs roughly $130.00/month. Tryptophan is often used to help settle patients, and re align their sleep clocks and this is not under formulary either. In other words, during a stay with us, we may get them settled on a regimen, but then have it discontinued when they leave for LTC because it is too expensive for families to continue. I hope Ontario and other provinces do add this to the formulary, because for many people it does slow the disease process considerably, although it is only really effective for 18 months -2 years. People who can afford it and who see it working on their family members appreciate the extension of time where the patient is still “reachable”.
Life expecatancy is something no one wants to guess on. Dementias can have severe or slow declines, usually (but not always) the earlier the onset the shorter the course, but that mainly applies to Early Onset Alz, or also Pick’s disease, which also tends to gallop. We have the unfortunate problem of people with severe dementia coming into care and their particular case seems to be very rapid, and it looks like “we just made them worse… Dad was walking three months ago, now he is in a wheelchair”
More on that in another post.
Kopek, I confess I am not up on any movies regarding such. Have you tried your local society? They have great resources for the public, and I am sure they could reccomend some videos, also they usually have support groups for families. The networking that occurs within family groups is amazing, someone else may have already been there/done that and have some good ideas.
I am glad your boss is helpful. Your wife should investigate what her union/state labour laws/ federal laws have about family leave. There may be more that can be done that people don’t know about.
Hiya Mona, as you might have seen in my recent thread, my mum is in mid-phase Alzheimers now.
What I’m curious about is the notion that Alzheimers is a*** fatal*** disease.
How does Alzheimers itself kill the patient? I understand that a progressive loss of mental and physical functions must lead to a deterioration of one’s immune system, but at the age that most people suffer from Alzheimers, doesn’t it always come down to another ailment being responsible for their death? Pneumonia, heart attack, are the ones that spring to mind.
If Alzheimers is ‘fatal’, what does a Doctor put on the death certificate as the cause of death?
Hi Kambuckta, yes your thread is really what got the ball rolling for me to re open this thread. Hugs to you, it isn’t easy what you are going through. As I like to say I have sat on both sides of the conference table, as a family member and as the charge nurse. One day I did both in the same day. I went home and wept afterward.
Alzhheimers is a progressive brain disease. People with kidney failure can be kept alive with dialysis or tranplants. There are artificial hearts, and surgeries to improve cardiac well being, or transplants. People missing a pancreas can take digestive enzymes and insulin shots.
There is no replacement for a brain that has atrophied or has plaques on it that interfere with functioning.
The FAST, or Reisberg Scale is one tool we use to measure the progression of the disease. As you can see the further on the more the tangles in the brain have affected motor function. Toward the end swallowing becomes a problem, many patients will succumb to pneumonia, or dehydration. Or their inability to move may lead (NOT IN A GOOD FACILITY HOPEFULLY) to pressure sores, which can cause sepsis. Or a fall leads to a broken hip, and they cannot survive surgery. The lucky ones just pass in their sleep, or stop eating one day and are gone within 72 hours. The immediate cause differs, but basically they are all just the body shutting down.
One thing about the Reisberg scale is that although it trends one way, sometimes there will be variences. People still walking but not talking. Most people come to us somewhere in the stage 6, but this is not universal. Sometimes it is medication and sometimes just general deterioration of the brain but eventually everyone ends up in a wheelchair at first just for safety, because they are getting unsteady. Then it becomes more and more often until the patient becomes permanently in the chair. This part is hard for families, there is usally a lot of anger around this issue, and the feeling that we are not walking mother enough. “If you just walked with her, she wouldn’t be like this.”
Eventually anyone who lives long enough with this will lose their ability to walk. Eventually they will lose their ability to swallow. Excercises and physio can delay this, and we all want everyone as mobile as possible for as long as possible. (We have a lot of lost time injuries for back/shoulder issues. Trust me, if we can keep her walking, we will but not at the risk of her falling) Many people end up with Parkinson-like symptoms, and end up very “stiff” and become dead weight to move. Dad may be “able” to walk but is so stiff he can’t get started.
Yes, its something else on the death certificate. But usually the “something else” happened because of the progress of the Dementing Illness.
Kopek, I had a fast look at the PBS site, and it appears that you may be able to view “The Forgetting” online. I didn’t try, as I had other things that needed attending to (including a wonky computer), but will likely try at some point later. You might want to look into this though.
Mona Lisa, reading through some of your posts, and other resources that are out there, it seems as if family members are either in denial that Grandpa (for example) has a problem; or if they admit that he does, seem to want to blame each other for Grandpa’s problem. Do you find that this is the case? If so, can you hazard a reason why?
(The question is partly my curiosity, but also partly related to my own situation: my sister and I gave up on the blame game as we really couldn’t hang any blame on each other, and we readily admit that our Dad has a problem. I’m a little incredulous that others would deny the facts and blame each other.)
First of all, all kinds of mental illness has stigma attatched. It’s not fair, but it is true. Some people will deny deny deny that anything is wrong with the parent, she is just confused, or you don’t explain things, or (the most dispiriting) the staff is inventing things. I try to be empathetic but I think denying the problem is at best negligent and at worst cruel. No one is helped in this situation.
Money, love, attention from parents, insecurities, what else causes siblings to fight? You name it we see it. Its like a Smothers Brothers routine sometimes.
Much of the blame game seems to stemfrom siblings feeling that each other are not doing their share, or that one is profiting unfairly from the parent’s infirmity. (If there is money, if not it is who is paying Mom’s way, and oh yes you owe me 17 dollars for Mom’s slippers)
Like I said, its best if families can put this aside. Some families are awesome, but we don’t remeber those. Its the 80/20 rule all over again the 20 persent that are a mess take up 80 percent of our time
I was able to watch “The Forgetting” on the PBS site. That was informative. Of course, it is no substitute for a diagnosis from a qualified physician, but I was able to recognize elements from the geriatrician’s exams of my Dad when they showed the elderly black woman undergoing the same thing: the memory test of three words, the date, “spell the word backwards,” and so on. Dad did about as well as the woman in the show.
In the show, they talked about the “Pittsburgh treatment.” Has there been any more work done on this, and if so, what are the results?
I haven’t seen the documentary nor have I heard about the Pittsburg treatment, sorry. On googling: beta amyloid plaques being causative agent in AD.
The big thing that on a clinical level that has been a breakthrough have been the drugs , Excelon, Doneprazil (Aricept)and also Mementine. But despite the good the drugs do, they are only effective for a few months to years windo period, and they slow the progression, not stop it.
My unit is mainly dealing with getting medications titrated and behaviors managed so the patients can go to long term care. Some people have longer stays than others, depending on behavior, and suitabilty for placement. Violent patients stay with us until they are calmer and sometimes, sadly until their disease progresses to the point that they aren’t a threat any longer.
The MMSE (mini mental status test) is our most common test for assessing just how demented the patient is. I have always said that if I ever did get tattoos (just not my thing, sorry) I would get 100-93-86-79-72-65 on the inside of one forarm and DLROW on the other. 
But copying pentagons is pretty much beyond me now, so I’m still sunk. :smack:
This is a Great Thread that is so depressing.
I have nothing to offer, but I was reading Musicology by Oliver Sacks. How music effects the brain. There is a bit, in the last chapter about patients in a nursing home that cannot speak and haven’t in years who, when hearing songs of the past, just suddenly start singing. There were other bits about an ALZ patient who was a former Apollo night club singer, that will rip your heart out.
Music is the first thing that goes into our brain when we are fetuses and when we are in our last stages of life, it seems to be the last thing we retain ( when everything else is toast.)
This book is a definate must read for anything dealing with the brain.
I once heard a doctor say that if you forget where you put your keys, that is normal aging. If you forget what a key is for, that’s Alzheimer’s. FWIW. Obviously there is overlap.
One of the many things I admire and love about my mother-in-law was the unflinching care she gave my father-in-law during his last three years of life. He was in a nursing home, and he lost more and more as he aged.
But he remembered her. As long as she was there, he was OK, and you could handle him.
Regards,
Shodan
Oliver Sacks is one of my favourite authors. I haven’t read musicology yet though. Before I worked with dementia patients I worked on a neurosurgery floor, and much of what I learned about the brain then helps me understand my patients today. Mr Sack’s books really help understand the brain. A definite must read. I also had a moment one day when I was giving Sinemet (levodopa/carbidopa) to a patient while Awakenings was on.
There’s also, “you forget where you put your keys, and you think that means that someone snuck into your house and stole them, and/or you start having an out-of-proportion emotional reaction, freaking out about it or getting really mad.”
My grandmother was just having moments…not regularly, maybe once every six weeks or so where she was forgetting my dad. It of course crushed him every time, although he knew the path she was headed. I was very grateful that pneumonia and congestive heart failure took her before she completely forgot him.
The windows of lucidity open and shut. My grandmother hadn’t remembered me in years but one day she looked at me and said “So did you buy that house on ___________ Street?”
Nor only was that true, but I had bought the house long after she didn’t know my name. I really didn’t think she she was making new memories then, but somehow she knew this, either from me or my dad.
So talk to your family about what is going on in your life. You never really know what gets in there, somehow.
And related, you don’t know what will trigger a link.
One of my last visits with my Dad before he passed, he didn’t know me. I decided that the best solution was to just talk to him anyway. At some point I mentioned my wife’s name and he replied “You’re Tim”.
My mom is such a smart-ass. I just now took her to get her shingles shot. You have to fill out a form with name, address, Medicare #, etc. I asked mom if she wanted my help with the form and she said, “I can fill out my name.”
Yeah, ma, you’re right. You’re impaired, not stupid.
Thanks for the response, it’s useful information.
We lost a really young guy, age 61 tonight.
Crap.
Lost as in he died? Or lost as in he found his way outside and now you can’t track him down?
Either way, 
sorry to hear.
Lost as in died. I guess with AD that left some doubt. He was a scientist before the neurofibrilly tangles. (such a pretty sounding phrase, such devastating consequences) I am never sorry for patients who die, usually feeling that the body has outlasted the mind and that it is time for rest. Also for the families to get some closure, and be able to remember the person who was.
This was just too @*&! young.