Hi, this is my first post. My DH was diagnosed with AD this year after being extremely confused and disoriented while we were traveling out of state. He’s 74. Like so many others, he’s had some memory problems and times of being a little disoriented for several years. I guess we were in denial.
I knew nothing about AD except memory loss. I pulled up the Alzheimer’s site and read that it was fatal. A cold chill went down my spine. I started reading the message boards about personality changes, mean irrational behavior, and a time when he wouldn’t know me. Also about poop, diapers and Hospice and it scared the living daylights out of me. I continued reading, though. I felt I had to know what was ahead for us.
Joan, I read on the Alzheimer’s message board where you invited someone to your web site. I came here and have already read most everything. I have been reading the message boards daily for several weeks also.
My DH is somewhere in the moderate stage. How long until all this horrible stuff happens to us? Does it happen to everyone who has AD?
Dazed, welcome! Our family here keeps growing and you are now with friends! You asked how long until the horrible stuff happens and does it happen to everyone who has AD. There are no timetables for this insidious disease. Some stay in stages for several years, and some go downhill rapidly, within 2-4 years. Not everything happens to all those with AD. Some have other illnesses, have a heart attack or stroke that takes them before AD reaches the last stage. Not all have aphysia, or "Sundowning" or wandering, or some have the different symptoms at different stages. No one can predict how long any stage will be, so each of us are as open as we know how when something occurs, so others who have experienced it can help us through it. These different symptoms in the stages sometimes come and go, and some are permanent as well.
There was a discussion a few weeks ago about the length of time each of our spouses have had the disease, and we found that one had 2 years and one had 20, and the others fell in between. 8-10 years after diagnosis was about the average, but each individual is different, so we have no way of knowing for our spouses. I hope this helps. Others who are better at expressing than I will be answering you as well. Once again, welcome!
Welcome to my website. We will provide you with support and love as you travel this journey. It is not easy, but as long as we are here for each other, there is hope.
Since you said you knew nothing about AD except memory loss, did you read the article I provided a link to on the left side of the website - Understanding the Dementia Experience? Of everything I have read, that helped my understanding the most.
As for what is ahead, if I thought about all of the "horrible stuff", as you call it, I would go nuts. Take ONE DAY AT A TIME, and deal with what that brings. Of course, you have to plan ahead with living wills, powers of attorney, and all of that. Click on Finances on the left side of the website for that information. But the most important thing is to just handle TODAY.
And usually things happen gradually. Although AD affects each person differently, it usually follows a pattern of stability, downslide, stability, downslide, and so forth. Often they go back and forth, in and out of different stages at different times. It is unlikely that you will have to face initial memory loss and then incontinence and Hospice all in one fell swoop.
I like your name, Dazed. thats how alot of us feel after being caregivers to spouses with AD. in my opinion, you are staring at AD square in the face when you see our posts here. this is the uninhibited version you see here -with no need to sugarcoat some of the issues that arrive with the onslaught of dx. I am so sorry you have found the need to be here but glad you have found the right place. there are many helpful topics that provide info during the course of this journey that can offer support and handson advice from those who have personal knowledge which you cant find in any books. dont get too overwhelmed by absorbing it all, but do remember knowledge is power -so preparing for future uncertainty can be crucial. divvi
Welcome! Don't go nuts! Try not to worry about the horrible stuff. As far as us telling you what it will be like, my favorite post is the one who said, "If you know one AD patient, you know one AD patient"!!!
Of course there are generalizations, but as you read the posts, you will see that some progress in 4-5 years, some take 20. Some become violent, some never display that at all. Some 'sundown', others sun-rise, sun-noon, sun-week, sun-night...you never can tell!
The thing to do with our posts is not to read them and fear 'it' coming, but to have a background of knowledge so that when an issue presents itself, you know that you are not the only caregiver on the planet who is going through it. And you may even learn some tricks or tips to keep you sane as you get through that stage. At one time or another, you deal with everything in some way. Let our 20/20 hindsights help your vision!
Thank you all so much for your encouragement. Joan, I thought I had read most of this site but haven't read "Understanding Dementia." The one thing most of you are saying is just deal with this one day at a time and don't look too far into the future. I'm sure that's good advice. I'm working on that.
Divvi, I read on another thread about the poop on white carpet. If you can deal with that, you can deal with anything. I don't have white carpet but I hope when the time comes, I can do what you did. Right now, I can't imagine ever having my wonderful husband locked up in an Alzheimer's facility but I won't say never...not knowing what the future will look like. At this time, it's all about me with my DH. He's so concerned about my having to take care of him when he's not able. From reading these posts, that will probably change.
Just remember that if he ends up in a locked facility it will be because he is a danger to himself and/or to you. Most Alzheimer's patents don't end up there. And even those that spend some time in a locked facility don't stay long. Just long enough to get their medications adjusted so they don't wander or try to kill someone.
Starling, your comments on here have helped me for weeks. You're really intelligent or have had a lot of experience. So glad you're here for us. That eases my mind about the locked facility.
A locked AD facility needn't be bad. My husband is there because of extreme safely issues. He is in the company of others like him-thus does not feel inadequate or ashamed. Activities are at his level and there is always something to do. Of course I would rather have him at home-but this cannot be. bluedaze
Dazed-somewhere between 6 and 7. He hasn't known me for quite a while. I was surprised when he made no effort to pet our old cat when I brought him for a visit. I had hoped that some basic instinct was still there to pet a furry critter. A very terrible disease.
Bluedaze, I can relate not knowing the family pet. My husband is in a small facility and I took the dog the other day and he did not react at all. He has not known me for several month now. It was a shock at first, but I do know that is this terrible disease. Dazed,I agree that one day at a time is the way to deal with AD. Everyone is different and it is hard to compare one person to another person with AD. This is a great place for you to come when you have questions.
I'm remembering my mother in law and how she felt about her weight. She thought she was overweight in a size 12, went on to size 14, 16, 18 - well you get the picture. When she looked at photos of herself at size 12 she saw herself as thin - too late, since she didn't appreciate it at the time. Somehow that seems like AD - each thing that happens sounds horrible and then when you go further down the AD path you look back at 'the good old days'! I think the trick is to try to enjoy each day for what it holds and be pretty sure things are going to get worse! I'm saying that the day I need to go to town to buy better incontinent supplies and trying to say, "oh well, it is only urine so far" and sort of enjoy not dealing with fecal matter too!
frand, you've made me realize that I've been so concerned about what's down the road that I've not been appreciative of what we still have. My DH can still do everything for himself and also mows and does the yard work. I imagine that I will look back some day and think these are the good old days. It's just so frustrating that he can't remember what I've told him over and over. Our extended family is with us this week and he can't remember who all is here. I tell him over and over and over. I have learned to do this and keep calm....like this is the first time he has asked. Guess I'm learning to deal with this disease already. Everybody please be here for me when things get worse.
Thanks, Val. I hope you can still be here a lot after you begin your new job. From reading your posts, you've really been through a lot. Isn't it amazing how you can feel so connected to people you don't even know?
I've been through a lot, but I've been given a lot by this site. I virtually have no more questions. They have all been answered. Yes, it is amazing, but these are amazing people. I hope my only need in the future is to vent from time to time. I've felt so at peace since all my questions have been answered that things are peaceful here. Haven't felt the need to vent in quite some time. Previously, I had no idea what was going on. Really, I was in the dark before I found this site.
Did you read in the AARP magazine about the parents whose kids have come home from Iraq majorly damaged? I hope they have a support system as good as we have with ourselves right here! ANd if we think AZ lasts forever, just think how long forever is when you're the parent of a damaged 20 year old!
Briegull, I haven't read the article about the parents whose injured sons and daughters come home from Iraq but when anything is wrong with our kids, it's almost unbearable. I just watched my niece die with colon cancer and it was so awful what she went through and how sick she was. If we look around, we're not the only ones who are entitled to have a pity party, are we?
Are persons diagnosed with FTD face the same symptoms as AD patients? I am trying to figure this all out myself and My hubby seems to be in stage 5-6 ( diagnosed only 2 months ago) but still knows me. Suddenly he keeps asking for information that was just given. Forgetting the simpliest things, Calls himself reading but really he glances and points out certain words, doctor states that because he is severly impaired across every domain ( which the testing revealed) he stated to me that he would be surprised if he lived a few more years. I have just ordered vinyl coverings for the bed, because I am thinking anyday now the bedwetting accidents will start. I am wondering should I order the bracelet now?
Absolutely. Your hubby will have no idea that he is impaired. If he starts to wander or worse drive off some one needs to know where to return him. My DH drove far from home, was missing over 24 hours. Thank goodness police found my daughter's business card. He did have his wallet but you can't count on that.
Very great article. Explains why my husband lost long term memory first. He forgot what had been our routine for 48 years but would remember what he was angry about forever.
ftd, it's my understanding that AD and FTD may end up having gone through the same symptoms, but in a different order. AD typically starts with short-term memory loss and does not go through agitation/aggression until the later stages ... FTD is the other way around. (Although there is an uncommon form of FTD which causes language disfunction, rather than behavioral changes, in the early stages.)
There's a comparison of AD and FTD on: http://memory.ucsf.edu/Education/Disease/ftd.html
I assume FTD, like AD, can be very different for individual patients, and perhaps also sometimes mixed with other syndromes that cause dementia.
This site has a link to a book chapter on FTD, which is very technical. It says FTD tends to strike younger patients than AD, with onset usually around 53 years old. The average course of FTD is 8 years.
There is a website you may find helpful, if no one else has mentioned it (I thought I saw something a couple of days ago, can't find it now)... http://ftdsupport.com/
It has several checklists on the "first timers" page. The very first item under "early stage" is "safe return bracelet".
It recommends the book "What If It's Not Alzheimer's" but then also goes on to recommend several of the usual AD books such as The 36-Hour Day.
Oh, it's not just you. I didn't hate it, but maybe that's because I couldn't wade very far into it. It isn't really for reading at all, in my opinion. It has a good index, and I look up topics as needed.
And pretty much every time I see someone recommend it, I warn that it can scare you half to death. Anything that can possibly go wrong is in there -- which again, is useful as a reference, but only if you look up just the things that apply to your specific situation.
(We are now not only in trouble for steering people on other sites to Spouse, bluedaze, but also for daring to say something derogatory about the "AD bible". We're going to have to go into hiding under the witness protection program.)
I just received the book "What if it's Not Alzheimers", but haven't really gotten into it yet. I'll comment when I get past the first med stuff and into their new info.
By the by..I have been having a terrible time getting into and staying on this website..is it me, my bloody computer or what? Anyone else have a problem?
I ordered the 36 hour day off of Amazon at a time I was in tune to "Knowledge is Power." By time it arrived we were in the throws of changing personality, tantrums, and delusions. Oh, yeah! And just in time for major overhauls around the house to make accommodations for alot of company. By the time I had opportunities to open the book I was dead tired. Couldn't concentrate on any of it. Couldn't hardly focus on a page...period. So because of the stage DH was entering, me thinking "can it be worse?" I copped an attitude that no book was going to help me now. Pushed it under the bed, and hadn't seen it in months. Recently found it again and I've so far just stared at it. I have heard so many speak of how helpful it was, so I certainly hope I'll be able to get in to it soon.
I have 36 hour day and maybe got through half of it before giving up. Right now I couldn't tell you where it is. I have learned more from this site than I have in anything I have read in a book or on line.
For beginners I suggest the Coach's Playbook which the Alzheimer's Association gives away. It is short, brutal and kind. The author has been on our journey and come to the end of it.
By the time I got the 36 Hour Day I knew more than the authors did. Learned most of it here.
I agree-the playbook is great. I order as many as I can and give them to neighbors who are still in disbelief about their LOs. Every one has told me how much it helped. My daughter's company was one of the sponsors of the book. Makes me proud.
I am awed by the depth and extent of knowledge my fellow caregivers exhibit....You all are magnificent !! I have not encountered more intelligent , writings from professional people regarding the various aspects of ALzheimers. anywhere else. We are so fortunate to have so many experienced, willing , compassionate, represented in our forum. I know it sounds as if I am being overboard about you all but I truly believe I have not found any website comparable to ours.
Dazed: You have received an immense amount of information in this discussiion and I sense you already are more relaxed and reassured by the comments offered. My husband has had Alzheimers for 10 years and I remain reassured by a comment from a more experienced caregiver at the beginning of our long journey...she said to me when I was overwrought by the changes in my DH ,"relax dear, we haven't lost a caregiver yet". I was so tickled by the comment that I repeat it to myself sometimes when I am inundated by the sheer madness of it all. This change in your life's path is not a happy one but hopefully we can help make your life a more pleasant one.
Yes, Carewife, you're right. I was scared to death when I came here but have found so much information in just a few weeks. It's strange, I feel much more relaxed about the whole thing. So many coping skills here. I'm so thankful I found this site. Actually, I love the people here. I check here before I even open my personal email. What's happening to me?
kathi37, my computer has been slow and cranky getting on Spouse today. It is also bumping me off more quickly than usual.
I learned quite some time ago to write all my responses in a text document, and then copy-and-paste here. That way, when it goes pppfffttt, I don't have to swear delicately, the way New Realm has been doing. Instead, I can log in and paste again.
Pay attention, New Realm. Write elsewhere, copy-and-paste here. At the very least, copy all of your post before you hit the "add your comments" button. How will the folks at Google react if they see you saying "dang"?
I don't get it. I've never been cut off or had to copy & paste. Is it that I don't say that much? I posted a pretty long pitty party post today & had no trouble.
Thank you to everyone for the information. Got a question I am noticing that my husband is getting angry with me more, last night he insist on driving. I took the ignition key off the key ring but left all other keys. He told me he called a locksmith and they will make him a new key. I gave him a scenario last night that what if someone's little boy is riding a bike and he accidentally hits him. I don't know if he got it or not (couldn't tell) What do I do now? Do I show him that I do have the key or still pretend it may have fell off the ring. He insists on calling to schedule a driving test.
I can't help you much on the particular problem as my husband gave up driving readily after getting lost one day. However others have had much experience with recalcitent spouses and the issue of driving. Do you know what the law is i n your state regarding people with ALzheimers driving? You might get your physician to state your husband is not able to drive safely anymore with the extent of h is illness. Please though, do follow through on getting your DH to not drive as the consequences can be very serious to not only him but to someone else if he is allowed to continue. I know you are concerned about this and do hope you can find some way to solve the problem. This is not earth shattering as difficulties go but can be very stressful on you. I have heard of a way to temporarily disable a car so it cannot be driven, perhaps a mechanic can help .
Been where you are-not fun. I had his doc send a letter to the DMV stateing DH was impaired. Very long time passed with forms going back and forth and DH not accepting any of it. I got a neighbor to "borrow" his car. I sold both cars and bought a new unfamiliar one. I told DH it came with only one key which I kept with me at all times. Having FTD hubby was still very wiley and tried every excuse to get his hands on my key. Until the day I had him admitted to a dementia facility he never accepted not being able to drive. If you go to search at the top of the page and enter driving you will find more info.
I thought we would start with incontinence but lately, I think we're going right for poop (sorry for being graphic). When I got home from work last night, DH was so foggy. He kept trying to tell me he needs to learn to do something or couldn't remember how to do something, I'm not sure. I got that he was "queasy" and having stomach problems again. He's been complaining about that for awhile. I now think that he's "forgetting" how to go to the bathroom. I don't really know how to help with this. I guess I'll have to guide him toward the toilet whenever he acts like he has to go. (Ironically, I'm trying to potty train our 2 year old at the same time!) I hate this, it's harder than anything else so far I think. I guess I'll start shopping for the Depends or start with the pads someone suggested. He was so confused last night. I really think that a year from now, he probably won't know me, but it's like everyone says, I can't look too far ahead or I'll go nuts.
Kelly, Vent away! I can't imagine how difficult life is for you now..Two "toddlers" with totally different needs? We can't help physically, but surely will listen whenever you need to blow steam.
kelly; I just want you to know that even when you don't post .. I think of you from time to time and always with concern and kind thoughts... Your problems do seem to be unique even for here. To have young children and to be facing the very quick decline of your husband..you do carry a heavy load. I so wish there was something more we could do for you than just listen. Please know that I am sending good thoughts your way...
Thanks kathi37 and Anita41. This is such a wonderful place to vent and get advice. I'd feel very lost without it. Even with family helping me, no one understands like a spouse who's experienced it.
I'm so grateful for you're "listening" and kind words.
Kelly, yes my feelings of support too for those of you with babies and on top of it a young spouse with AD. its so dang hard coping with just DH and myself much less anyone else or young children and/or working. you have our admiration and lots of hugs. divvi
Well I am here finally. I just introduced myself on another list and it was suggested that I come here also. My husband is 73 and been diagnosed since last Aug. Being a long retired maternity nurse chronic care was never my forte. Yes I had read 36 Hours years ago but now use it as an index. I can't cope.
This list is a godsend. My faith is being strengthened, dealing with this. Things that have helped recently are: 1. Meet God now and in eternity not in the past or future. This is a new thought reinforced from 2 readings about a week apart. I use here I am in the NOW quite often and it has allowed me to finally cry. I wish I didn't know what might happened but my old career let me know and my dad died at 90 in 2000 after many years with mom in denial. I was of little use to her, so I am getting a new chance. The other thought is patient endurance produces character. I pray for patience and fortitude because this lazy soul has so little.
As to losing a husband. I let him do everything for 35 years because he was good, smart and able. Now I am not able but doing it and looking into day care three days a week. My son and his wife are both miracles. They are in recovery for serious addictions that took them to the bottom. They have 2 beautiful children and he is working 2+ jobs and will be doing his last year to become a journeyman electrician. They do all they can and I don't want them here in a small ranch house. I may have to sell it (never wanted to be here anyway but Ed loves it and the 10 year old dog) Sometimes he doesn't know me. He keeps asking me where is everybody? who is in the bed? Where is the woman that lies on the couch reading. Ed sleeps all day and all night. He eats, walks the dog, goes to church, misses the kids, and very little else. Shower once a week if I insist. So far he has only wet the bed 4 times in the last year.
Thank you for being here. I live way out in the country, have few contacts outside of an eating problem group and my sister and brother have more problems than I. Ed's sisters have come down 2 times a month and that is helpful. I am never alone because I try to live in the now and I know who is there also.
welcome Pat! the journey we are taking here together is a long weary one as you know. its good that you joined here as it is mainly for those who have spouses afflicted with the AD or any dementia type disease. there are many topics you can read up on, and askany question and someone will send a reply. we are all handson troopers and probably more AD knowledge is compiled in these posts than all the AD books out there. hope you find comfort and support and look forward to your posts too. divvi