Someone mentioned this site in another thread, in the context of descriptions of the 7 stages. I had not seen this site, and I found the more detailed breakdown of the stages into sub-categories, with specific typical task deficits, to be useful.
Jeff doesn't always fit well into the simpler stage descriptions since his problems tend to have a stronger visual component compared to memory, but the Fisher site helped me get a better clue.
Whee. I can now call him a 6a, based on the classic sign of not being able to put clothes on correctly. Apparently bathing and teeth-brushing problems are right around the corner. And we won't even get into 6c yet.
Among the stupid things about Alzheimer's: I am so frustrated by the doldrums and "stuckness" of this stage of life that I actually get a tiny serotonin spike in noting that we've made progress...iow, graduated from stage 5 to 6. Good grief.
this was an excellant website. the descriptions of the stages were so clear. My dh is in late stage 6. He's incontinent urinally, and once in a while, fecally, and he's beginning to have difficulty speaking. words seem to escape him. Very clear explanations for these things. thanks fr bringing it to our attention, emily.
The above site was very helpful to me. Thanks for posting it. My DH falls into the early stage 6 catagory and the info was quite helpful.
Chris r - Looks like I am right behind you in this journey. My dh will be 83 soon and I am 74. So far he is easy to care for - just needs supervision and prompting. Doesn't follow instructions very well but still bathes [when prompted] and dresses himself if I lay out his clothes for him. His shaving is not very good but unless we are going to Church or the Dr. it doesn't matter if he misses a spot or two. I encourage him to do for himself as much as possible so he at least gets some moving around each day. He needs the exercise. We have a wood stove for heating the house and he will load the wood in it if I ask him to. He is not very good at starting a fire anymore but I take care of that. There is nothing as warm as backing up to a wood stove. Our house is all electric and an electric furnace just doesn't do anything but warm the air and the furniture and floor still stay cold.
Well I seem to be getting OT - again thanks for the site info.
My DH seems to be about 6E, The funny thing is there are times that he doesn't remember me or his 3 children and never remembers the grandchildren but he knows he went to The University of Alabama. In fact he was at Auburn for 2 quarters before he was drafted and when he came home he decided to go to Alabama. He tells visitors that he finished at both Auburn and Alabama. I have been bathing him for over 2 years yet he still brushes his teeth and shaves with an electric razor. He eats well but cannot tell you the name of the foods because he will ask me "what is this". He seems to be losing his voice but he mumbles all the time and I have to guess what he is saying. He does not want the TV on because he thinks they are in the room and does not listen to music. Yet he ask me this morning if I ever danced and said he wanted to go dancing. That was a big part of our life for a lot of years. It is hard to place them in a stage because no two people are alike. Now who is rambling and getting off topic?
This site was good, but I take offense to one sentence in Stage 5 (and I quote), “Very common reactions for persons at this stage who are not given "adequate support" are behavioral problems such as anger & suspiciousness.” What the heck? So what am I doing wrong? Does that mean if I gave him “adequate support” he wouldn’t get angry or suspicious? WOW! AM I taking this the wrong way? Am I wrong to be upset? I’m doing the best I can. I’m sorry I’m ranting, but I’ve had a bad day (starting at 3 AM this morning!) SO maybe that is clouding my thinking. O just felt that this one sentences told me that I’m not doing the best I can. What do you think?
It's true. There are highs and lows and no one hits them all on schedule.
Still, I was so grumpy today...the "I'm going to be doing this FOREVER!" blues, that I plotted his progression of decline against the "means" given for each stage on the Fisher site. What I found was that we're pretty close to the means, across the board. Which I extrapolate to estimate that we've got 5-8 years left.
I could, of course, be off-base in every way...in my estimation, in the ethics of even toying with these thoughts, and surely my crankiness is off-base, but sometimes it's just there.
But I'm sure it has a lot to do with this New Year, 2011. I will turn 50 at the end of it. So, today was a bit of a swim in a emotional cesspool, noting how I devoted most of my 40s to the confusion of not understanding what was happening as AD showed up, then the long task of diagnosis, then progression. Now I'm looking into my 50s and figuring that will be primarily eaten by the progression through stages 6 and 7. Fun stuff.
I'd really like not to be such a grumpus, so I guess it's better to haul your monsters out in the open and wrestle with them rather than keep them shut in the closet. Probably that's what I'm working on.
I would be upset about that phrasing too Elaine, were I dealing with anger and suspiciousness. Obviously there are many AD problems which all the "adequate support" in the world won't make go away.
In a slightly different, but related, vein, I noticed that where they talk about the phases of stage 7, there's a comment that "adequate support" can also prolong the late phases of 7 for many years. My reaction--Why prolong them?
ElaineH....those behavioral problems of anger and suspiciousness are entirely my fault. I went through that with my dw, and it is still my fault...no matter what happens. So, please blame me!!!! I guess I did not provide you with enough adequate support. You are doing just great and you are wrong to be upset....I think you are doing the best you can....It is my failing that caused all this, and I will try to do better in the future....
Emily, my heart goes out to you young ones. I am 82 and DH is 88 and we had a lot of really good years. It does not seem fair but we don't get to pick and choose the direction our lives are going in. I can understand your being grumpy because I know that a lot of times I am just plain mad. For you and for me I hope they die in their sleep and never have to go through the fetal stages.
For all of you that have just found the Fisher site you might want to check out BIG TREE MURPHY...it is a very good site telling you what you can expect and when...I learned a lot about stages at the site.
ElaineH, I too take exception to the tone most sites and books say about caregiving! I feel like THEY DON'T REALLY KNOW WHAT WE DO. If you are talking about a few years ...maybe. But my DH started showing signs in 1999, was DX in 2002. It has been a long haul. I too have had and, still have, The going through this Forever feelings. My husband is in a nursing home now, but I go every day. I ride the roller coaster with him. Highs and Lows.
Let's just blame it all on Phranque!!!
I agree, I think I would rather my DH die in his sleep...peacefully.
Emily - I know what you are going through. I am 58 and today as I was sitting in the car and he was getting the propane tank filled I was calling out to God that this is not the way it was suppose to be. We are suppose to have at least 10 more years of traveling and working in campgrounds/rv parks around the country. I prayed for a miracle healing. I think the clue of this coming happened about 26 years ago - the detached personality disorder I believe was actually a sign of what was to come. That destroyed our lives financially and emotionally and we never really recovered. When we started out traveling in 2005 it was to be a new beginning doing what we both enjoyed - including me. I emphasized including me because until then everything was always what made him happy or he wanted to do - my dreams always got left by the wayside. Well, they have again = dreams gone. I think of how long his dad went (25 yrs) and if he is anything like that I will be in my 70s at the very least. I am not ready to stop living. I am not ready to be saddled down - that is why I had kids when I was younger.
I check the stages and he is still stage 4. He does things that irritate me like close all the curtains at 5 which means I can't watch the sunsets which are beautiful here. We both have remotes for the TV/satellite and I never know where he is going to put his when he goes to bed - he can leave them right by his chair. I wonder if he will stay where he is or go downhill before we get back to the NW this summer or fall. Maybe I am foolish to grasp at straws and try to do some of my dream before he can't travel.
Bama - I agree. I pray that something else will take him in his sleep before AD does. I even lay in bed at night imagineing how I would react if I found him dead. (sorry for bring this up for those who lost their spouses already) Ask myself would I want it to happen while we are traveling or wait until we get back to wherever we are going to settle for the duration? I know morbid. sorry but it has been one of those tiring weekends of endless repeating and forgetting.
charlotte, you are right to want to do those things that you enjoy before you can't anymore. even after dxd, dh and I traveled to europe, south america, hawaii, etc. We usually went with friends (TG for friends), but we went, and he enjoyed it while we were there, and I took lots of photos so he can see them and be happy we did those things, even though he doesn't remember. I know I'm in that boat with you where I hope he will die of something before this disease puts him in a fetal positin. It's been about 9 years, now, since dx, but who knows how long before that. It is such a long battle. I was thinking about it today, and I'm going to write a letter to each of my kids, that I want to be placed as soon as i can't take care of myself. that is what would make me happy, not having my children wipe my a_ _.
Oh Phranque, don't worry. If we all give you "adequate support" I'm sure you will be fine! I promise I won't balme you for ANYTHING (except maybe having a great sense of humor!) Keep smiling :o) !
I was more devastated by the "years in this stage". By their calculations I have many more years of scooping poop and cleaning pee! And it has been over 10 years already!!!!!!