Nikki The web site you gave us is the best description of the stages I have seen. After reading it I was finally able to place my DH in the beginning of stage 6. I urge everyone to take a look at this web site.
I also want to thank you for the website... it is more specific than what I have seen before. My husband would be a 6b or 6c. I find the length of the stage 7 description unnerving; I didn't expect a person would live so long in such a declined state. It is sobering to think he could linger so compromised.
I got the standard list in 05 and as you all know it is frustrating. I expressed this to my doctor and he gave me this link. I too think it is clearer and goes into the sub stages - Something I hadn't heard of before reading this. I glad you all found it as useful as I. And yes marge, very sobering indeed.
Marge, my poor husband lasted in the Stage 7 scenario for 4.5 years.....talk about gut wrenching....but he was a 60 year old man with no other health conditions. If not for the pneumonia, he would probably still be alive in a fetal position.....
Oh, Sandi,you are confirming my worst fear! My husband is 62 and also has no other health problems; in fact, he was a firefighter and in terrific shape. He has lost weight and muscle tone, but otherwise seems pretty healthy. Was your husband still eating during that time? Right now is bad enough...I don't know how I would live through that many more years! It sounds like a nightmare.
Yes, Marge, he was eating anything and everything until the last two weeks before he died. Caring for him the last few years was like caring for a large infant. All he did was eat, sleep, poop and pee....he couldn't move because of the contractions in his limbs. No communication....it was nothing I ever thought I could do, but I did.
My advice to everyone is to recognize the fact that you can't fix what is wrong with them....but, you can make sure that you are okay. It is a hard road....I know first hand.
Thanks for this website, Nikki! it is indeed the most elaborate detailed discription of each stage i have ever seen and makes it much easier to place our LO. after reading i think we are in in late stage 6 which says 2.3yrs we may be running in the end part of that. not sure there. it heartwrenching to see so many subdivisions of stage 7. each one lasting wayyy too long. oh my gosh, i cant imagine lingering in the last ones..Sandi my respects to you thruout your ordeal. god help us all. divvi
Marge, my poor husband lasted in the Stage 7 scenario for 4.5 years.....talk about gut wrenching....but he was a 60 year old man with no other health conditions. If not for the pneumonia, he would probably still be alive in a fetal position.....
Sandie, I have often wonder about this, you say he was 4.5 years in stage 7 and 3 of those years if I remember correctly he was bedridden in a fetal position. I was telling my daughter about you yesterday and she use to work in a hospital on the unit floors, she said your husband would have had to be able to sit up with your help in bed in order to eat, or he would have aspirated before 3 years while trying to eat. Would you explain to me again about the eating while in a fetal position. I am almost scared to death waiting for that to happen to us. We are now in stage 7b and wondering how long before we get there????
Nikki, the web site you provided gave me all the answers to the many questions I had on stage 7. I was in some words overwhelmed at the length of time the patient can last in stage 7 but yet at the same time I was not, due to the fact that this is exactly the time length my husband seems to be with the sub stages, he has been in stage 7 ab for two years, pretty much like the site described.
Again I say, unless something physical takes him this is the way he is headed. The hospice nurse told me that most all Alzheimer patients she had seen were in wonderful physical shape, meaning no other health problems except the Alzheimer.
This is also another reason I have learned that I cannot stop my life completely waiting for the stages to end, otherwise I will also no longer have any life left to live. The disease goes on and on and on taking with it the victim and those around them. How horrible
Would it be considered illegal to stop giving say blood pressure meds or diebetes control or anything to do with another ailment (benign neglect?)when they get to the 7ish stages and just let nature take it from there?? isnt this what we have POA healthcare proxy for so they dont have to go to the end? in our case there are other medical issues that would be considered life threatening like BP -or cronic uti due to enlarged prostate..i dont know how its possible to handle this many yrs left in the disease in stage 7 if its really that many ...divvi
Jane, my husband was in a hospital bed and I would just put the bed up and feed him and then push another button and down the head of the bed would go.....Not a big deal.....it got harder at the end because of his fists being tucked so tightly under his chin. But, we managed.
When I changed him I would just roll him onto his side, take care of what I had to and then roll him back over. It is amazing what you can do when you put your mind to it.
I hope you never get to that place....I always prayed for something else to happen, but it was not meant to be. So, he endured and so did I.
divvi, I am not sure about the legal aspect of not giving prescribed medications. BP would be something I would want to treat because they could have a stroke and it leave them in worse shape than Alzheimer, meaning they may be left and not die. I would ask the Doctor, and he would decide.I would definitely take the comfort measure only once they reach stage 7, that is what I have done. I will leave any treatment decision to the Doctor but I will tell him that I want to use comfort only unless he recommends otherwise, then I will follow his recommendation. (Our doctor is the one who first suggested the comfort only, I did not realize we were there until he said this.)
The mere fact that they can linger in even the final sub stage as the web site described for an indefinite time, has been an eye opener for me. I had read about the sub stages but never in such detailed explanation.According to this, they can be in the 7th stage as long as some sites say they can live. That is where they get the 20 year from diagnosis rule. I have vowed this very night not to put off for another time things I want to do. Here I am getting older myself and I mean I am not going to let this disease suck the very life out of me also.
I was in denial when my doctor gave this to me a couple of years ago... he gently reminded me to read it. I did, and was the worse for it. But, I did think it explained many things I have never come across before and thought I would share it. Sandi I have been reading your story, I hope I can be as courageous as you have been.
Lynn is clearly in the late 6 but not yet a solid 7. He also still has his speech ability. With his new medication helping his rages, I am so grateful for that! It is a pleasure to hear the things he has been saying this past week - Like a dream I never want to wake from.
There is also a web site that has all the stages of Alz but it is put in years from adult to infant It is Bigtreemurphy.com. She took care of her husband until the very end. I'm also very thankful to Nikki for posting that link of the stages.
divvi, I really wish both of us had the answer to your questions about stopping meds for other issues and when it would be appropriate to do that. Considering all of the other conditions my husband has, I also need to know about that.
Because you didn't get many answers, it is possible that this is one question we won't get answered here.
well once we get to stage 7 and hes lost ability to talk and walk etc if that comes, i will speak to dr and bring in hospice and hope i am strong enough to go the comfort route here as well. the BP i can understand like Jane says, they could become worse with a stroke, but treating or not treating infection may be something the drs are willing to offer suggestions too when the time comes. my, how i am anguishing already thinking that day may come and its on my head to make those life /death decisions. so if not treating 'pneumonia' as an example we have heard here has been recomended by hospices is ok, then i am at loss of what other things othe than just 'infection' would be considered benign neglect for a dr or hospice to be comfortable with. lack of abiliity to swallow and choosing not to use a feed tube , or aspiration, infections. bed sores, etc =? divvi///
ps maybe dr marsh has some input about this and what would be acceptable benign neglect in end stage. or anyone who works or has knowledge of hospice could have some input here. we all want to know this question i would think, maybe not immediately but in the future. divvi
I read hard choices. And it is excellent. But I don't think it covers things like blood pressure medications, or blood thinners. I'm going to take another look.
OK, I just looked again. He talks about the big issues: feeding tubes, antibiotics, pain relief, intravenous feeding, do not hospitalize and do not resuscitate orders. He talks about the difference between looking for a cure and looking for comfort. He doesn't touch medications that are already being given for chronic conditions like high blood pressure, blood thinners, high cholesterol, type II diabetes, etc.
Sunshyne, thanks for the info here. i read it thru. quite sobering and stressful to read but its important. i am leaning to getting a DNR after reading but still need to have a talk with his dr. i guess the neuro? or his internist which is the 'family-like' one? we have alot of specialists. with the AD the neuro may be better informed about any endstage choices. also, is it too personal to ask if any here would be willing to say whether they have a DNR inplace and the "outof hospital DNR"? i guess i am looking for validation that most AD family are thinking its best after reading the hardchoices...i will have to do this pretty soon i guess too at next dr visit, bring it up and see how dr feels..divvi
Such hard choices, I guess we all need to do what makes us feel better in any way, helps us sleep at night.
I did speak with a lawyer about the end of life, treating Lynn, and if I had any concerns with family. He is a family friend and put my mind at ease some. He said there are many diseases that are terminal .. that one can still have a long life span with, AD is one of those. As long as their is quality of life, you wouldn't refuse treatment, the same is true for AD. That made sense to me. I believe we will all know when the time comes not to treat.
He agreed with Lynn's doctor that I could not force medication on him at this point, for something like cholesterol. At the VA he refused to take it, and the doctor said ok. I was shocked! But he said even though I was his POA , he still had a right to his medical care as long as he could still voice his objection. That was a bit of a shock to me.
As far as when the time does come to make these difficult choices, he said it was noble of me to want to include Lynn's children, but they had no legal say. The final choice is up to me, and me alone.
So I decided right here , today .. I just can't cope with it all. All the questions and worries of what may never come to be.. Only God truly knows and He isn't telling me anything! LOL I am pretty sure I have decided to wait until the time gets here to act on anything. I already know in my heart what I need to do. So for now, I intend to enjoy the gift we have been given and take one day at a time.
Nikki, Most likely you will not have to make the choice. Does your hubby have a living will? If so he made the choice for himself. If not when the time comes you will know it and do like I have done, choose comfort care if the Doctor recommends it and when the time comes to treat or not to treat, do the same thing go by what his Doctor recommends, God will make the choice this way and not you. That is what I am planning to do.
Yes Lynn does have a living will. He has made his choice, and I know it is up to me make sure his wished are followed. I will do my best to honor them. Thank you for your reply, it had a very calming effect on me. Thinking of you and your husband, so hard isn't it... Nikki