I've been busy today FINALLY adding that caregiving section I have been promising. With the help of our member, Janet, who did the listing for me, all of your tips and suggestions from the topic started by Trisinger - "Things I wish someone told me in stages 2-3" are now categorized and listed alphabetically. Log onto the home page - www.thealzheimerspouse.com - you may need to "refresh" it, and you will see a new Caregiver Tip section on the left side. Check it out.
Joan, this is GREAT! And thanks so much to Janet for sorting it all out. I copied it and pasted it into a word doc and it took up eight pages, which is too much for us to ask neurologists to hand out, but it is certainly a great beginning on that!!
I just posted Monday's blog (11 PM on Sunday night). If you read it, you will see that It is about a new "connect with other members" section that I am planning. Information of that sort will be in that section when I get it completed.
Stage 1 is the baseline. I'm at stage 1. Most of you are there too.
Here are the Alzheimer's Association stages pages: http://www.alz.org/alzheimers_disease_stages_of_alzheimers.asp http://www.alz.org/national/documents/topicsheet_stages.pdf
The pdf file is easier to print off or to save to your own computer.
I see now that the question really was about which stages our LOs are in. But I'm going to post this anyway just in case one of the newbies needs the information.
Joan, Thank you so much for this site and for making it exactly what so many of us need. The idea of gathering all the information in one spot is fabulous as I try to keep in mind who everyone is and what stage their loved ones are currently. Being able to flip back for updates would be so helpful. Trisinger's topic was also very welcome.
I have another idea that might help. I read many people trying to determine what stage their loved one is in and the few examples on the Stages list from alz.org don't necessarily shed enough light - especially since some people go through different symptoms. Could we maybe have several topics devoted to the Stages? A Stage 5 link could allow people to spell out what they see (or saw) with their spouses in greater detail and maybe it would be easier to grasp the information from each other as the LO slips from Stage 5 into Stage 6. Titles could be as simple as Stage 2-3, Stage 4, Stage 5, etc. Just a thought.
I'd start the links, but starting 5 all at once seems a little pushy....
On the home page, on the left side, there is a section titled "Help for the Newly Diagnosed". There are links to websites that discuss stages in there. ( Towards the end of the section) There is also a discussion on "Developmental Stages of Alzheimer's Disease", which I think, explains what is happening better than the standard Stages 1-7. If those last two ( # 12 and #13) on the list, DO NOT come up when you go to the Newly Diagnosed section, just "refresh" the page and they will appear.
Joan Maybe Liz is like me and it would help me to have, in one place, "Stage 5 - lmohr - husband in Stage 5 AD going into 6 .Then I could go back and reread lmohr comments if I wanted more information on who falls in Stage 5" Does that make sense. Maybe 20 of our posters would place themself or spouse under the Stage 5 Discussion.
Imohr, almost everyone here has a LO in stages 5, 6 or 7. Most of them are in more than one stage at a time. I know that it sounds like it would be easy to tell which stage our LOs are in, but really it isn't.
On the one hand my husband has lost a lot of his vocabulary, and his ability to communicate. He really can't ask questions anymore unless I can guess what he is asking about. I'm pretty good at guessing, but sometimes I just don't have a clue. He was talking about vitamin water in Wal-Mart today and he was telling me he wanted "the kind that is underground". I literally still am not sure I figured out what he actually wanted. That is stage 6. If he is sick he has other stage 6 symptoms as well.
For almost anything else, he is at stage 5. He has ALL of the stage 5 symptoms.
And on the other hand, he goes out for a 1 to 2 hour walk every morning and comes home on his own. From things he has said I know that he is actually walking very far away and totally out of our community. When he was driving he couldn't follow directions TO places, but could always find his way home even if we were miles away. What stage is that? Is it stage 4 or stage 3? I honestly don't know.
So in your plan, where would I place him? Don't think he is unusual. They are all like that.
I think DH is in stage 5 but he talks quite a bit. Describes something rather than uses the word. VERY repetitive. Same question and I do try to respond using different words and also try distraction. However, when he gets on a topic, he doesn't let go. He folds his hands waist high and walks with a slightly bent posture. Always walks 10-20' behind me but will hold my hand and walk right with me. He can sing the hymns in church if the words are printed on the screen but forgets the Lord's Prayer and other commonalities he's repeated every year for over 50 years. His appetite is good but if I don't fix his meal he forgets to eat. He never drinks water unless I hand him a glass. He sleeps really good. He reads but doesn't retain what he's just read. He watches TV but can't follow the plot or who the different characters are. He no longer uses a credit card or check book. He carries a small amount of cash but never buys anything. He's exceptionally affectionate. Very loving with his family. Praises grandchildren and loves them dearly but I don't think he really remembers their names any more. Is this stage 5. Sometimes I think he's bordering on stage 6 but I don't really know. I'd appreciate any input you may have.
Starling and Mawzy. .....I know what you mean. I placed mine in 5-6 because he has all the Stage 5 symptoms plus fecal incontanence, Can't shower himself or dress himself.
He has a Neuro apt. this month and I am going to type up his symptoms and situations for her and ask her about Stages. Also going to check about when to contact Hospice from our PP. He isn't ready yet but given the speed of events during the last 3 months it may come sooner than I think. I think yours sounds about the same as mine on an average. Mine can only walk 50' and I don't know how much of that to attribute to spinal stenosis. He doesn't talk much and is hard to understand, trouble formulating sentences. Doesn't read, understand TV, goes to sleep in his recliner when we have company.
In the six weeks that I've been reading this site, I have received validation that I am actually seeing things that are related to AD that aren't listed in the descriptions by most web sites. Most sites mention that loved ones can no longer count back by 4s from 40 or will frequently have problems dressing themselves appropriately for stage 5. Maybe a whopping 5 symptoms. Well, there isn't a snowball's chance in your know where that I'm going to ask my husband to count backwards from 40 by 4s because while I doubt already that he could do it, I would never put him in a position to fail, just so I could measure what stage he was at to satisfy my own curiosity. Similarly, we live in the south. He owns golf shirts and shorts and trousers. The "winter" jackets are in a hallway closet that we rarely use. He's not likely going to dress inappropriately when his closet is filled with appropriate clothes. But I didn't know that walking 10 or 15 feet behind me was typical until I asked here. Or, sticking to a topic for days on end because he can't seem to let it go. He spends hours weeding the front lawn - or grass strips in parking lots when we park at a shopping center. The alzheimer's site doesn't mention that. Neither does the Mayo Clinic. But people on this web site do.
There is so much good information from participants on this site and I feel I've learned so much. The true experts are right here. The medical community has numbers and statistics, but telling me that he can't count backwards by 4s from 40 is an indication that my husband is in Stage 5 doesn't begin to address the daily things we all see. We all know there is a fuzzy line between stages, but delineating things we experience personally might help us acknowledge and accept the strange world in which we have all found ourselves.
These are just my thoughts as I attempt to navigate the life that has been dictated to me - without my consent. I'm looking for a stable piece of ground so I can find my strength to keep moving through the days and nights. That stable ground may not last for long, but a description of the stages by people more experienced than me would help each new development to be less shocking and maybe I'd be slightly less unprepared. Maybe I'm the only neophyte who lives in this state of uncertainty, but I'll take help from anywhere I can-with much gratitude.
Liz, I joined this site on July 13. I was really struggling and like you, was just trying to find a solid piece of ground so that I wouldn't go under myself. I was so amazed at what the people on this site wrote. I couldn't believe my eyes. I learned more in the last 6 weeks than I learned in the 2+ years before. I knew there was something wrong 4-5 years before dx but didn't know for sure. I had a good idea, but w/o the dx, couldn't do much. I'm so glad I found this place. Once you have the information and know there are others who are confronting the same issues, then you can be more relaxed and not be shocked.
For example, I knew nothing about shadowing. I read about it on this site. I forget who wrote first. But, after a couple or three weeks my husband started doig that, I knew what it was and I wasn't too concerned. Funny how a good education will help.
Hope this helps. None of us consented to this situation, but, we play the cards we are dealt, do the best we can. I know I'm a better caregiver for having been on this site and I can't begin to tell you how grateful I am. Good luck!