After a year of testing and diagnosing, we finally got the EOAD dignosis for my husband (he just turned 54) last week. It was such a non-surprise that when I gently individually contacted our three grown daughters (youngest a senior in college) to tell them about it; not one of them was surprised. I also was not surprised, but I seem to be going through all the traditional stages of grieving at warp speed! For a day I was in denial, then a day sad, then a day mad! It has been a tough last 4 years for our family and although I do see a therapist and that is helpful, she doesn't know anything about EOAD and I am hoping to find a place of support here as well. In late 2004 my husband started having a lot of problems at work. My husband is a highly educated professional. He started having fights with the persons he worked with, people kept accusing him of "changing" and then in the last straw, he tangled with his boss (who is not a nice man). At first I was actively involved in this discussion and talking hours a day with my husband, but then out of the blue my middle daughter was diagnosed with a rare and virulent form of cancer (she was a sophomore in college at the time). Saving her life required my full emotional attention and every single day of my vacation, personal and sick time from work. My husband (strangely at the time I thought, but didn't have the time/energy to give it too much thought) was unable to focus on our daughter so we did a sort of "emotional split" where I focused on her and he focused on his work issues. By the time my daughter was stable, my husband had lost his job (and career) in a very public and expensive legal battle. This also meant we had lost our health insurance in the midst of a health care crisis. I was able to purchase health insurance through my job, but at a much higher cost than we had paid through my husband's job and this along with the legal battle bankrupted us (literally, we filed in January of 2007). As the months went on and my husband looked for other work, I started to see all kinds of cognitive changes. Perhaps they had been there before, and in hindsight probably contributed to the job loss, but I was too distracted to see them. At any rate, over the last year it was no longer hidden to anyone and we started the road to testing and neurologist culminating in last week's diagnosis. I feel like my long ride on the emotional roller coaster has landed me with a big bump. So that's my 5 minute "pity party". Here is the upshot as of today: 1. Thankfully (and I mean on my knees thankfully) my husband is eligible for his full pension as he put in enough years, that payment is just getting deposited in our account every month and is our bread and butter. My husband also qualified for SSDI and we got that. 2. The pension means that by scrimping all over the place I managed to pay our youngest child's last year of college tuition this past month. 3. My health is good. I actually have worked hard to get in as good of health as I can because my family needs me. 4. My daughter with the cancer is not in remission (she has a kind of cancer that does not go into remission) but her health is stable, there has been no "spread", she graduated with a MSW in the spring and is employed and is marrying her high school sweetheart this weekend. We will be taking her to a special University hospital for radiation annually for the foreseeable future but her (very soon to be) husband and I take turns with this now so that neither of us uses all of our vacation and sick time up in any one year. Sometimes we go to Dr. appointments together and he has taught me how to play Texas Hold "em for pennies in the waiting room :) So that is my nutshell situation. I think my issue today (proably it will be different tommorrow as fast as I seem to be moving through emotions) is my fear of "what next". My husband can still talk to me, putter around the house fairly safely while I am at work (he doesn't cook or anything like that but he has some hobbies he still enjoys and does a little hosuework), can drive (but I see that is going to be a problem, probably within a couple of months when winter hits), and he actually still volunteers some. But I am afraid about what I will do when he can't drive, if he starts to need physical help (he is a very large man) and cannot be left alone (I really have to work, the bankruptcy payment comes out of my paycheck, it is the kind of bankruptcy where you have to pay a percentage to your creditors, and most importantly the health insurance is connected to my work). So those are my thoughts for today, thank you for being here.
Welcome, Fritz. There are so many threads in the discussions which tackle the different stages he will go through. Each evening, try to read two or three of the threads. Especially what I wish I had known at stage 2 and 3; and search Tony - his wife had EOAD and his comments might help you as well.
I too, have to work. I left my husband alone and he fixed his own lunches for a year. Then I noticed he wasn't eating lunch any more. He forgot to and then forgot how to. I started going home for lunch each day for almost a year. Now, my 18 year old grandson has moved in with us and is staying with him while I work. They go on walks together (he minds my grandson!) and small chores around the house. I am very fortunate.
I had investigated adult day care, but my husband didn't want to go; same for in-home care, which is twice the cost. However, I do have an in-home day care on 24 hour standby when I do need them.
Driving is a discussion you need to read, with a lot of advice as to how to get them from behind the wheel. This issue is a very sore spot with Joan, our wonderful leader and host here at her website. It is one of the hardest things for a lot of men to give up. My husband believed his doctor when his doctor told him he couldn't drive any more. I was fortunate there to.
Please feel free to write us as things come up that you need help with or just to let off steam!
Welcome to my website. You will find a tremendous amount of support and information here. Since it is specifically for spouses, you will be able to relate to the emotions and issues discussed.
Now for some pratical matters. First, don't stress yourself even more by focusing on "What next?". TAKE ONE DAY AT A TIME. The best thing you can do for yourself and your husband is to learn all you can about the disease and your emotional reactions to it. That's where we come in - log onto the home page of this website- www.thealzheimerspouse.com - and look on the left hand side. I would suggest reading the sections on "Newly Diagnosed/New to this Website"; "EOAD"; and "Understanding the Dementia Experience." Also, click on the "previous blog" section and scroll through the topics. You will find many you can relate to, including quite a few on the "driving issue" and EOAD.
If you go to the top of this page, and click "search", then write in "EOAD", at least 12 topics will come up.
All of us are in different stages of this journey, so we learn from each other. Welcome.
Welcome Fritz, Though not a shock I am glad you were able to get a diagnoses. Now you can do as Joan said- research and learn all you can to help prepare you. Post often, there is great release and relief in sharing with those who truly do understand.
Welcome Fritz, Wow! Is the best word I can come up with all that you have experienced in the last 4 years. I am truly sorry for your need to join our group, however, you will find lots of information & kindness here.
Thank you for the immediate support response. It meant a lot to see it when I got up this morning. Joan, I took your advice and looked through the newly diagnosed section and the stages section of the website. I will also take everyones advice and try to look up a new thing or two a day. As regards the driving, I believe my husband will be cooperative in letting it go. He has already curtailed his driving at my request and seems open to the idea of letting it go altogether. As long as he is listening and cooperative I would like him to be able to still have some input into decision making. Did you notice in the video clip of the PBS special on EOAD (the link on this website) they show the guys all driving and say something like "all are still driving with the aid of GPS systems". To me it isn't the getting lost that is the issue, it is the possibility of spacing out or getting confused and getting into an accident. I don't see where a GPS system would be of much help with that. I have a question for today that I have not been able to find by entering into the "search" on these boards. My husband has put on a great deal of weight over the past two years. Is this something that often happens? It concerns me because he also has heart issues, I forgot in my initial post to say that he had a heart attack in May 2006 (I told you there was too much going on for the past four years! I forgot about the heart attack!). Here is my humor for the day: I am saving a lot of money on food because my husband is happy to eat leftovers...he doesn't remember we had the same thing the night before :)
Fritz. I agree about the driving issue. Getting lost is just one thing to deal with. My DH is still permitted to drive if he has someone with him but he has started driving in the middle of the road. I constantly have to tell him to get back on his side. We live in the country so it's not quite as dangerous but I understand why someone should be with him. He no longer drives in town, or at night...or in bad weather.
With all you've been through and going through, you really need the help and comfort you'll find here at Joan's place. {{{Hugs}}} and a warm welcome.
If it weren't for being on PBS, the bit about using a GPS would sound like positioned advertising to me... I'd agree, the potential for an accident FAR outweighs the possibility of getting lost when it comes to making a decision.
My husband was an angel about giving up driving. We worked together and "carpooled", and so he was used to my driving part of the time anyway. Then he started letting me drive all the time at night, because his cataracts made it hard to see when facing the headlights of on-coming traffic after dark. By the time he was diagnosed with AD and the doctor said she had to report it to the DMV, he just stopped driving altogether, even though the DMV never did anything about it. He still has his license. But he hasn't been behind the wheel in more than four years.
Re the weight ... that seems to be an issue, whether it's gaining a bunch or losing a bunch. In our case, one of the first things I noticed was that he dropped a whole bunch of weight in just a few months. Scared me to death. He insisted he was fine, he was just dieting. Yeah, well, since I was the one cooking and dishing up, I had a pretty good idea that dieting wasn't causing the weight loss. He was under a LOT of stress at the time, and I've noticed (now) that his symptoms are very sensitive to stress. Anyway, after he was diagnosed, put on Namenda, and some of the stress went away, he got a lot better ... and he promptly went back up to his old weight.
I imagine others will be coming along shortly with their stories of weight gain.
Your humor for the day tickled me. I sometimes worry that my husband will object to having left-overs, too. He not only doesn't remember that he had the same thing the night before, he often acts as if it's an entirely new dish that I've never served before. Fortunately, he always says it's great. (The only change in his taste that I've noticed so far is that he used to love salmon and order it any time we went to a good restaurant. Now he won't touch the stuff. I never cook it because I've never liked it, so that's been okay by me.)
By the way, if you haven't experienced it yet, this site sometimes will "time you out" while you're writing a post. When you hit the "add your comments" button, you get a red-letter warning and your post disappears, permanently.
To avoid ripping my hair out and swearing, I've learned to compose my longer posts in a word processing application, and then copy and paste here. That way, I only have to fume just a tiny bit about the inconvenience of having to sign in again...
The site is very inconsistent about when this happens. Sometimes it burps after a very short time. I think it depends on how many of us are posting at the same time, and whether someone else hits the "add comments" button when I'm doing the same thing.
Other times, I can go off and fix breakfast, shower, come back and find out I'm still signed in.
The one thing I didn't do, that I wish I had done, about driving was getting him used to the idea that I drove at least half the time. It would have been better for me if I hadn't basically forgotten how to drive on a highway. The problem is that he is a terrible back seat driver even now.
Today I didn't go when he said "you can go" and he got mad at me about it. I told him I was driving and just because he said it was OK to go, didn't mean it was. He got all huffy and said that he would never tell me when to go again, as if he was doing me a favor. What would be a favor would be if he really did NEVER tell me to go again.
He used to control a lot of what I did by threatening never to do X or Y again when I was the one who was sick and I needed his help. These days, it doesn't work. I just wish he really would stop washing dishes (without soap and probably without hot water), telling me how to drive when I'm the driver, etc., etc., etc.
Starling, my husband tries to control the car but he is doing better with it now. He still tells me I can go, but I ignore him or at the least make sure I can't see something. He used to get mad at me now and say he was going to quit telling me. Sometimes it is better to ignore than argue. He also used to control a lot of what I did by threatning never to do it again. He seldom does that now.
Sunshyne, thanks for the tip about typing elsewhere and then pasting it in here to avoid getting bumped. I am glad it didn't happen to me with my first post which was both long and emotionally difficult to write. Maybe you are right about the stress eating too. I have noticed that my DH will sit and go through a large bag of peanuts even near a meal time when he can't really be that hungry. I try very hard to cook healthy meals and not keep a lot of junk and sweets in the house, but of course I can't control everything since I am out at work all day. I have a hard time getting him to exercise too, I will say "let's go for a walk" and he will either flat out say no or he will go with me and whine like a little kid the whole time. This is a huge change for my DH as he was always very athletic. It is sad for me to see him so out of shape and moving so slow all the time. The Doc wants to put him on the Exelon patch in a couple of weeks (they are adjusting some other meds first and gave him a CPAP machine for sleep apnea). I am trying to research Exelon and find out the risks and benefits. Again, I thought that PBS film was quite "pro-meds".
Welcome Fritz! I am so sorry to hear about everything you have been going through. Thank goodness your daughter is doing okay.
My husband is 62, we have been dealing with this for three years (actually longer with the smaller signs) and just got an "official" diagnosis last month. Just like you, I have to work.
Here are a couple of things that people have said to me that have helped me a great deal:
"Don't borrow trouble from the future." "Start slowly creating a life for yourself. You can't go with him where he is going."
All I can add is welcome Fritz- your struggles and hardships have been heavy and my heart goes out to you. thankfully you appear to be strong in will and a fighter so with that on your side you will be fine. glad you are on board. divvi
The best web site I've found for checking into side effects and drug interactions is:
http://www.rxlist.com
The major cholinesterase inhibitors (Aricept, Exelon, Razadyne) all tend to have the same side effects. Mostly, they tend to upset the digestive tract, causing nausea, vomiting, diarrhea, stomach cramps, anorexia, etc. Mind you, many patients tolerate them quite well -- those are just the symptoms that are most likely to develop.
In theory, the patch is less likely to cause these side effects since the medicine gets into the blood stream through the skin, bypassing the digestive tract. However, that also means that a higher dose is needed to get the same benefits, which kind of defeats the purpose. The other really big problem with the patch is that many patients develop red, very itchy welts under the patch, and it's hard to find ways to soothe the irritation.
I would suggest you talk to the doctor about Razadyne instead. Same class of drug, many patients do well on it, AND the generic form is going to come out soon, which will save you mucho bucks.
If the patient is started on the meds slowly (small doses gradually increased), many patients do benefit from them. Some improve quite a bit and hold steady for a while, before declining again. Despite what many people believe, they can be beneficial for many years. And patients who take the cholinesterase inhibitors and/or namenda are less likely to develop behavioral problems.
In my book, it's better to fight this disease than just sit there and let it do its worst.
The other thing to consider is whether you might want to get your husband into a clinical trial. There are some exciting new drugs coming down the pipeline. The current drugs (the cholinesterase inhibitors and namenda) help the brain to function better, but don't do much to stop the damage that's being done to the brain. Some of the investigational new drugs (INDs), however, do have the potential to slow the actual damage.
The reason I mention this is that the trials have specific inclusion and exclusion criteria for what patients can be enrolled. Many accept patients who are on one of the cholinesterase inhibitors, but a few do not. One of the more interesting INDs that is currently enrolling is dimebon -- there are two trials for this drug, and they will NOT take patients who are on other AD meds for one of them, and only patients on Aricept for the other. (I would have loved to have gotten my husband into one of those, but I won't give up the namenda, so that was that.)
So if you might be interested in a clinical trial, you might want to check into what's available in your area and what the criteria are for inclusion before getting your husband started on a med.
Fritz: A belated welcome to our group---so sorry for the reason you are here, but you are not alone. Our family is also part of the EOAD group. Husband diagnosed at 53, now 56, one daughter a senior in college, the other daughter a senior in high school (with enough $ set aside for her to go to college). And like you, I have to keep working for a variety of reasons, not the least of which is medical insurance for me and my girls. My DH is already on Medicare thankfully, having qualified for SSDI soon after his diagnosis. As someone said, you have already accomplished alot, gotten the pension, the SSDI, the diagnosis, and made sure your daughter can finish college. YEA! I predict your next challenge will be the driving, so be sure to read the driving information on this website. My DH drove for two years after diagnosis, never got lost to my knowledge, but I was worried more about his judgment. When the doctor and I finally took away his keys last January, he reverted to being the "monster" he was before his diagnosis, yelling, threatening me, etc. but only about the driving. He hid one set of keys, and I finally had to go to the dealership and have them reprogram the car/my set of keys. Now he seems content with his hidden set that doesn't work (I finally found the hiding place, so I confirmed they don't work). Anyway, I'm off to work now, but did want to add my welcome to you. I LOVE this website, as much as you can love a place you wish you didn't have to be!!!! FYI, I'm also in a face-to-face support group with other EOAD spouses, and my DH is enrolled in a clinical trial/the Elan phase 2. So I encourage you to explore those options also.....
My wife has EOAD (age 57)- it was quite a roller-coaster ride before the diagnosis. We've had other issues in the family, but nothing approaching what you've been through. You are an incredibly strong person. Sunshyne is right - after reading your story, we should all count our blessings.
Today I struggled with anger. Our daughter is being married this weekend. I have tried to plan things for my DH as best as possible (index cards with step by step directions). His two jobs today were to vacuum the house and put windshield wiper fluid in my car. Neither happened and the worst part was the defensiveness, the " I will do it tommorrow!". I did the windshield wiper fluid myself on the way home from work and am sure I will end up doing the vacuum in the morning. Am I a jerk to get mad about such small stuff? The weird thing about EOAD is that I feel like I should give my DH responsibility to respect him as a person, but he really can't handle it. Deep breath here. Going to do my very best to try to celebrate the good stuff this weekend (my daughter has survived to marry her high school sweetheart) and not get hung up on the EOAD frustration stuff. Send me your prayers! And by the way, I can't find a spell check on here and I am a terrible speller, so if there is one please let me know how to use it.
You want him to go through index cards with step-by-step instructions? Yikes!!! Good luck with that one! You're setting him up for failure and yourself for a major headache. Did your neurologist give you an idea what stage he's at? My wife is long past the point of being able to follow two-step instructions. Count yourself lucky If you can get him to do one thing a day while you're away.
On a separate note, I wish you and your daughter (and future son-in-law) a wonderful wedding day!
Fritz, My DH has EOAD also, he is now 55 and was diagnosed at 50. At first, he thought if I would write him a list of things to do he could get them done. That was a disaster. I know it is very frustrating. Following directions was one of the first things he had difficulty with. It can be confusing with the symptoms because some days he is so much better than other days.
Also, I would not get locked into the stages too much. My DH's brother also has EOAD. My BIL got lost very early in the disease but my DH still hasn't gotten lost. Also BIL had more problems making simple decisions early in the disease.
iggy=I can't spell either. If you look at the blue task bar upper right on your screen you will see abc with a check under it-that is spellcheck. At least tht is where it is on my VISTA
Congratulations on your daughter's wedding. Enjoy the day.
Go to the home page of my website - www.thealzheimerspouse.com- and look on the left side. Click on the section that says "Memory and Communication Tips." There is a lot of good advice in there about getting your husband to follow and understand directions. For some reason that I cannot figure out, some of those side topic pages are taking a very long time to load. Do not be discouraged if the page comes up blank. Give it a few minutes and it will show up. If I get it figured out, I will fix it.
There is spell check if your browser is Internet Explorer. Look at the top toolbar. Look under the "file,edit, view, etc." line. There is a checkmark with ABC above it. Click that and it checks the spelling.
Congrats on the wedding! Last fall the daughter of one of my EOAD support group friends got married. The wife asked several family members to take turns being "in charge" of the husband who has EOAD and it apparently worked beautifully. The husband didn't suspect anything, since in his mind they were just family members spending time with him, but each one was able to gently remind him of what needed to be done at different times, but the wife was able to relax (well, as much as you can relax as mother of the bride) and enjoy! Just a thought.....hope all goes well!
Thank you all for the spelling tips, I will get it worked out. Iggy, I may have made my index cards sound too complicated. I had two index cards on the counter. One said "put windshield fluid in car" and the other one said "vacuum house". It was not complex. However, I will admit it isn't working. I may next try the idea I saw on this website of a spiral notebook with simple numbered tasks for each day. The things is, my DH still WANTS to do things and asks me what he can do, but then has a hard time with the follow through. He is not yet at the point where he has no interest in helping and he can still tell when I am frazzled and tired. The Doc has not told us what "stage" he is at and frankly I have read so much conflicting stuff about stages and how fast they progress I am trying not to get too hung up on that and just trying to go with what we have been given each day. It is hard to track anyway because my DH can have several very good days in a row (maybe even a whole good week) and then suddenly be really struggling again, I cannot see a pattern in it. For this weekend, I liked the advice of texasmom to have others help be "in charge" of my DH. I have to make airport runs picking up relatives tommorrow so I have asked my eldest daughter to be "in charge" of DH and she was happy to do it. In fact she told me to stop and have dinner with my sisters and relax a bit while she hangs out with her Dad. I need to ask for help more often. I am thinking of a family meeting next month where I can talk to my kids and share ideas...any advice about doing a "family meeting"?
Fritz, the index cards may have been simple, but the tasks weren't. Maybe on a good day, your husband could still follow instructions like that, but sooner or later, all "good" days will disappear.
One of the things that's very hard to understand is that our spouses lose initiative. They may be bored, they may sincerely want to help, but the only way to get them to do things is to provide gentle encouragement in a steady stream -- they genuinely cannot "self-start". My husband wants to help, very much. Doing the dishes is one of "his" chores. He'll get started, something will distract him ... and he forgets all about it. No more dishwashing unless I say something like "Would you like me to finish the dishes? I like spoiling you." Oh my no, he thought he was done ... he goes right back in the kitchen. But we may have to go through that cycle three or four times before all the dishes get done.
Your husband may have forgotten all about the index cards. Or he may have seen them, but gotten confused about how to go about doing the first task (filling the windshield washer fluid takes a LOT of steps) and shied away from the whole thing. And when an AD patient "fails" at something, they do indeed get very defensive. When you think about it, it really is hard to blame them.
I know it's frustrating. I know it's VERY hard to remember the problems they have, when they seem to be so very normal some days. That's why some of us think the early stages may be the hardest, just because it's so very difficult to adjust.
Yes, unfortunately you should not be sweating these small stuffs. he just cant do anything to help but maybe fold some towels to keep him busy or sort coins. nothing of help to you i guess but its the reality of the disease. nothing seems to sink in. on the other hand, yes find lots of help with DH so you can enjoy the day with your daughter. and arrange for DH a place of solitude if the noise and crowd get on his nerves, which is typical sometimes with AD. congrats on the day and wishing you a memorable time. divvi
I started with numbered lists for my husband, and it worked for months. Then slowly he wasn't able to finish but half of the items on the list, so I halved the list; then it got down to two chores. When they weren't done, I stopped the list altogether. Sometimes he would still try to vacuum, other days he wouldn't. Some days he would unload the dishwasher, other days he wouldn't. He would (and still does) make the bed every morning and empty the waste baskets. Those are the only constants now - and some days the bed isn't made up to his standards, but he still does it. And I say nothing.
I wait until he goes to bed at night to do the chores that were his, so that he is not aware of my doing them. Sometimes he thinks he did them the next day. <grin>
The whole idea is that they need to know that they are still contributing and being useful. Our job is to make certain that they feel that they are. Just understand that they aren't failing to do the chores because they don't want to, it's because AD has scrambled that function - sometimes for a little while and sometimes permanently.
I hope the wedding is a huge success and a lot of fun for everyone! I'm glad you are having the family members help with your husband. That will make it much more pleasurable for you! Tell us all about it on Monday!
My DH is 56 and was diagnosed three years ago. He also asks to help but I've learned he really can't do anything to help without making more work for me. To avoid frustration I have set my expectations very very low. Unfortunately, I find out on a daily basis that I can't get them low enough.
Long before I knew that my DH had dementia, we tried lists and I tried to teach him to check off the list. That didn't work. I found that he kept doing the same parts of the list over and over. It seemed to overwhelm him. So, I bought a 30 day dry erase calendar. I broke down the "chores" into what I thought were bite sized chunks (ones that would take only an hour or 2 at most). It didn't work. For example, 1 day a week, he was supposed to vacuum. He never actually vacuumed the floor after weeks of trying. He admitted in a visit to the doctor that he would go to the board, see vacuum, and go to get the vacuum cleaner, but along the way he would forget what he was going for and go back to see the list or he might forget he was going for anything. And this was over 2 years ago.
I do have a suggestion, one that has worked and worked well. I made a 1 page document that has a chart with things that DH needs to do every day. For example, I have "take medicine" with a box next to it near the top and I have 3 boxes for eating with space for him to write what he ate. I also have a space for his pain levels, mood levels, and energy levels (all 1-10 scales with an explanation of the scale below the boxes for AM, Noon, and PM). I also have a section near the bottom where he can write his daily gratitude list and notes. To make it easier, I used a lot of little boxes that he can check off. As some of you may have guessed, this document is never fully completed and most of the boxes have the same numbers/information day after day. Still, he completes enough of the chart to help me track how he is doing. Finally, sleeping is an issue for DH so I have him say how long he slept, how many times he woke up, and how many times he went to the bathroom (he has an enlarged prostrate). The actual number of times he woke up is likely not accurate, but it gives me a rough order of magnitude.
This chart is a variant on one I did a while ago to track his heart medicine against his vital signs. With the information, I was able to see that the medicine he was on was too strong. We were able to tweak his medicine and reduce it to the lowest effective dose with the chart. When I re-introduced the chart, I reminded him that we can use this tool to help him reduce his medicines and for him to keep track of his medicine (he has COPD and needs to take 2 puffs 4 times a day). I print each month's worth of pages, staple them together, and put it and a pen on the bar. He sits on the bar stool (a central location in our house) and fills out the paper. It not only gives me a sense of how he's doing, it gives him a sense of control and accomplishment.
Fritz, to give you an idea of two instructions: my husband has been sitting at the kitchen table after lunch was finished for 45 minutes. I asked him half an hour ago to go to the bathroom and then lie down in the living room. I put his walker within inches of him. Just now I went in and stayed with him until he actually got up from the table. Went to the bathroom. But then I had to prompt him where to go next.
Remember to go back to children.. would you expect a four-year-old to be able to follow two instructions (assuming he could read) some time after he'd been given them? This "executive functioning" is one of the first things to go, alas.
And number understanding is also very early - if you haven't taken over the finances, do so!! Look back through our topics on both of these.
I'm not that hung up on staging the disease, but I do look at the Alz.Assoc. website once a year to get a rough idea of where we're at. Some signs/symptoms come and go, but over time they become more frequent until they're a permanent part of the landscape. It does allow me to lower my expectations of what she's capable of doing.
I wish I could make up a to-do list but my wife can no longer read (but I still let her buy books - go figure).
Briegull, turns out you have ESP. Got home from work and found out my husband drove himself down to the auction barn while I was at work and spent over $500 on fishing poles. I flipped out. He then laid on the couch with a blanket over his face saying I don't love him anymore and I am probably going to leave him. I am not going to leave him but when this wedding weekend is over I am going to see a lawyer about financial issues and be straight with my kids about it too. I am scared silly he will spend every penny in our bank account. Since he is now pouting I will have to do all the packing and other preparations by myself tonight. I suppose I should not have gotten upset but it is hard to be a robot emotionally. Maybe Sunshyne is right and this early stage is very hard. After I pack the car tonight I am going to pour myself a big glass of wine and try to let it go for three days. Then I simply must act to protect the both of us.
Concerning your statement about the early stage being the hardest - I do agree - it's all the changes and adjusting that we never anticipated. Especially when it is EOAD. That definitely was never expected. I wrote a blog about it. Go to the home page - www.thealzheimerspouse.com-, and click on the "previous blog" section on the left. Scroll down to #272- The Most Difficult Stage.
Yes, Fritz, earlier is worse. I think my first posting here was about how estranged I felt from my husband, how could I love him when he was distant from me, wouldn't share, wouldn't let me help him do things yet was so clumsy/unable to do things... Now he's much farther along (a year, or less, later) and is pleasant and loving! And I don't expect him to be able to do much of anything!
But I HAD taken charge of finances well before that. LOSE the credit cards. LOSE the bank card. LOSE the checkbooks. Try to get as many bills as possible sent to you electronically and pay them electronically. Try to get to the mailbox first - if you're working, consider getting a p.o. box. THESE ARE ESSENTIAL!
And yes, see a lawyer to do all the proper documents - but it's best to see an elder law attorney, who can tell you exactly what you need IN YOUR STATE to take care of yourself if he has to go in a NH. He may not be "elder" yet - but they still can help you. And my mantra: an estate planner is not the same thing as an elderlaw atty.
A quick and more pleasant posting from "Mrs. Doom and Gloom" here. I called our agency on aging and they are sending me a list of elder law attys. in our area so I can get on the horn with that next week. I took our dog for a long walk in the beautiful autumn evening and that calmed me down considerably. Then I made DH one of his favorite dinners (which calmed him down considerably). Then I had that glass of wine while fiddling with DH's new CPAP machine and last night for the first night in months he was comfortable and slept all night which meant I slept all night. So we are off to a much better start this morning. The input of all of you this week has helped me so very much ( I did read Blog #272). It is a lifesaver to talk with folks going through the same experience.
Another Welcome, Fritz. I started the journey through OZ, as I called it before I knew it was AD, about 8 years ago and my DH was 60ish. Probably overlooked and excused behaviors a year or so before. It is so easy to look at our healthy APPEARING, normal APPEARING, loved ones and try to make sense of some of the most UNLIKE THEMSELVES behaviors. Sometimes its petrifyingly overwhelming simply because on 'good' days we think we're imagining things and on 'bad' days we sink again into the knowing we aren't. Congratulations on the upcoming wedding of your daughter and the opportunity to celebrate a joy for her! This site has absolutely been like a life preserver for me.
The driving issue has been one of the hardest. The money issue is scary because it threatens our security. Some of the other things are difficult. The lack of appropriate responses is another thing I noticed early on, similar to the lack of helpful concern about serious matters or about health issues of others.
Among us, you will find many who are walking this road closely with you, others are up ahead just a bit, and others even further. Thankfully, there are yet others who have begun a different journey of recovery and we are encouraged and strengthened by them. Again, welcome.
It is helpful to see that others have experienced the loss of relationship early. People who don't have a spouse with AD/dementia simply don't understand that the relationship, the partnership, and the mutual connection breaks in the early stages. The connection, the LO's ability to maintain interest and connectivity to life issues, breaks down so very fast. As one of you said, the early stages are the most difficult for the relationship. It seems like each stage has it's own unique "most difficult" aspect.
Hi my name is Karie. I am 35 and my husband is 48 and has been diagnosed with dementia possible EOAD. He has had to go on unpaid medical leave because he wasnt able to continue at the normal capacity of his job. I had to resign from my job in order to take care of him (basically everything) because he cannot recall information and doesn't drive. We are in the process of a short term disability claim, but thats not going too well. I am not sure where to go from here ... doctors aren't very cooperative and if I don't find some sort of financial solution we could possibly lose everything. My husbands grandfather and mother both passed of this. I don't see why its taking so long for a resolution ... diagnosis. He's had blood work, MRI's CAT scans not sure what to do at this point. in addition I'm trying to help my daughter 15 who has an illness herself. As my husbands disease progresses its getting even trickier. If you know of anything that can help please let me know. Thank god for this website. I thought that I was all alone.
Karie, welcome to our little family. Gosh, I think you may be the youngest member ... take a look at the thread "What are the Age Groups" to see what others have posted.
OK, so I see a couple of issues here. One is getting a definitive diagnosis for a very young person. That can be tough. Many doctors don't know much about late-onset AD, let alone early-onset. You may have better luck if you consult experts. Look for AD research centers or memory disorder clinics that do a lot of work on EOAD. There's a fairly comprehensive list at:
If there is nothing nearby, Starling has recommended "look for the local stroke rehab hospital ... First of all they are used to dealing with patients of all ages and won't discount "Alzheimer's" just because your husband is young. Second the speech and cognitive therapists there have seen everything, and you can't fool someone who is seeing you for a couple of hours a week the way you can fool a doctor who sees you for 15 minutes once a year."
Or contact one of the Mayo Clinics. The one in Rochester MN has the largest group, but the one in Scottsdale AZ is part of a major AD consortium, plus the head of the Neuro department seems to be extremely nice. (I sent him an email out of the blue on a Saturday, and he responded on Sunday, very helpful.)
The other is ... finances. Let me do some digging on that and get back to you. We discuss financial support ALL the time here, I'm sure I'll find some good threads to bring to the top.
I entered "California" and it pulled up three. I didn't get anything by entering "Oklahoma", but maybe you're near one of its borders? Or perhaps you could stay with family or friends who live near a center.
Sunshyne, Karie entered this same message under "New to this Process and Need Help." There are other comments there also, one from Joan.
I knew you would come along and help her. I can't believe that these processes can be so hard. For those who have never worked with these kinds of programs, it can be absolutely frightening.
One question for you, if Karie's DH has been "diagnosed with dementia" how come SS Disability is giving her a hard time?
Thankee kindly, ma'am. I shall move meself to the other thread.
Other people have had problems with SSDI if they did not have a diagnosis that specified what was causing the dementia. I'd hazard a guess that maybe it's because some things that cause dementia are reversible.
Or it may just be that SSDI has a huge backlog. It can take many months to get them to move. But, fortunately, once approved, they do pay retroactive to the date of filing.
The big wedding weekend is over and it went great, in no small part due to the advice I got from this board so please accept my thanks and gratitude. I booked a hotel suite that adjoined my youngest daughter and her boyfriend's room (not the daughter getting married!). This worked so well with my husband because we propped the adjoining doors open with bricks and people were constantly passing through the rooms so he was never really alone. This way he was both well looked after and happy because he got a lot of attention. And of course that was good for me too. I gave my husband tasks (he is still in the early stage and wants to do things) but I never gave him more than one single thing to do. No multi-step jobs, just one thing per day. My husband golfed 18 holes with my father and the father of the groom on Saturday! He was beaming when they got back. As for the wedding, it was a 70 degree bright sunshiney autumn day in upstate New York which is almost unheard of. We moved the reception out onto the patio of the restaurant and everyone danced under the stars. It was just perfect. Now it is back to reality, I need to get on the horn with the elder atty. I will talk to Karie on the other post as I also did the SSDI fight.
Now that I am back to the real world I am already getting completely frustrated with trying to get some legal help. As I have posted here earlier, my husband has real trouble with money and I need to get the POA and Trust stuff going ASAP. Here is the rub: I can't afford a pricey attorney (see earlier post re bankruptcy) but we are not "poor enough" for legal aid help and none of the elder services folks will help because my husand is not over age 60. I have spent every minute of every break and lunch hour at work for three days chasing down leads. If I am going to have to just flat out see a lawyer, can anyone give me a ballpark figure on what the Will, POA, etc. will cost? I don't think I have the time to keep hunting and searching for answers. After having such a good "spell" at the wedding, my husband had a very bad weekend this past weekend. First he was nasty and volatile and then he was sickly and frail acting (kind of all over the place). I want to do this legal stuff before I get in a real bind. I tried putting "legal" in the search but no one else's post that I could find addressed my dilemma (not poor enough, not old enough) although I did read the financial advice on the main page and I know I have to get cracking. Sunshyne, you said somthing earlier about pulling up some good finance threads, can you lead me there?
Fritz, I transferred what I was doing re Karie's post over to "New to this Process and Need Help" which I pulled to the top.
Not sure it's relevant for you, however.
There might be some useful info on the "Divorce to save your assets" thread that Belinda.K started a day or two ago, it's still near the top.
Planning your legal paperwork so that you can take maximum advantage of Government support programs is dicey. You do want to talk to an attorney who is certified in elder law with a LOT of experience in Medicaid law, I think, before you do anything else, and one of the most likely places to look is
http://www.nelf.org/findcela.asp
Cost is going to vary a lot, depending on the attorney (not all of them charge an arm and a leg) and on how complicated your case is. You can often get an initial consultation for free, and I'd recommend talking with two or three, to make sure you find someone with whom you are comfortable. You should NOT feel obligated to retain an attorney just because you meet with him/her.
If this isn't the type of info you had in mind, ask me again.