My husband has Alz. and I have had ( with full agreement of his Dr. and our two sons) to no longer allow him to drive as he is no longer a safe driver. This has hurt him very very much. It is further complicated because I am homebound due to Multi Chemical Sensitivity and a week in ICU which confirmed the seriousness of staying as chemical free as possible.
I badly need an online support group for spouses of Alz. patientsl. If there is no group formally, are there a few who would email with me? Meetings are not safe for me. Sandy
You found us. This is the place you are looking for.
I suggest you visit the homepage, thealzheimerspouse.com and read what is there. There is a wealth of information. And this forum is the support group. When I first arrived I started at the top and read as many threads as I could. You will find a group here that has information, will answer questions, but more than anything WE UNDERSTAND. There is literally nothing you can't say here. We talk about the unthinkable. We say the things you can't say anywhere else.
Sandy. You have come to the right place! I too had a need to talk with other spouses, and this site has been a Godsend to me. You will find that someone or everyone for that matter, has been where you are or will be in the future. The understanding is immense as well as the compassion from those who truly understand. Welcome! ~Nikki
Ps, there is alot of information on how different people have handled the driving issue, just go to the top of the page and click on the search tab, enter driving and you will find the different threads.
Thank you so much for your fast replies. I am thrilled to have found you all. I am trying so hard to let him do all he can, but he makes many mistakes and his judgment is not what it was. He was an engineer so tries to fix things and when he can't insists they are broken. The hardest part now is his impulsiveness and denial that he is as affected as he is.
My doctor says I must take control. How do I gently take over managing our affairs yet keep his morale as high as possible? He is loving, sweet and stubborn to the nth. Sandy
The answer to that question changes as the dementia gets worse. I'm in the process of learning to just make the decision and present it.
What used to work a long time ago was to present the idea that we were going to do something long in advance and tell him to "think about it." Basically so he could make a decision about multiple options. Now that is the worst thing I can do, but it is what used to work and I tend to fall into the old pattern.
For a while what worked was to give a or b options. Just two presented simply. Most of the time that no longer works. He can't hold those two options in his head at one time anymore.
Now I'm learning to just present a decision as something that is happening now. It is time for lunch. We are having pasta for supper. I'm going to WalMart, do you want to come? (My husband can still stay home by himself for a a few hours at a time.) And even with the yes/no question I sometimes get, "I don't know."
He really doesn't know.
My husband was an engineer too. He designed contact lenses on AutoCad (and by hand before computers). He ran security and building and machine engineering deparments. And now, he can't always figure out the remote. Basically he can get to one or two stations, turn the TV on and off. I'm not sure how long that will last.
Starling, your suggestion of a and b options sounds good at this stage ( he has been on namenda and aricept for 4 years, and only in the last 6 months have they had less effect on his disease). He has left pans on the stove on high heat while the water boiled dry so I have to watch very carefully what he is doing. His short term memory is going.
Using the remote and controls on my CD player confuse him. Daily use does not improve his memory of how they work. Foolishly I am still hoping he will pick up new and safer habits. I must stop this.
Welcome Sandy! Glad you found us. We are all spouses who are dealing with the same thing. This site is a safe place where you can ask questions, vent, laugh, cry and scream if you need to. hugs, Mya
When my children were little and we ate at a restaurant, I'd ask them if they wanted chocolate or vanilla ice cream. When my son learned to read and saw the menu, he was a little upset. How come you didn't tell us about all the other flavors he asked. Well, I didn't want to wait until they went thru the who list. I did that w/other things as well, eventually, it was easy to do it w/DH--and eventually I just presented something to him w/out asking anything. They get confused when they have to answer questions & make choices. Poor darlings.
Welcome, Sandy. I've only been here for about 10 days and have learned more and been able to talk more than I've talked in two years. I've really been venting (ha ha).
My DH was an experimental sheet metal mechanic. He did hand-made parts for the original B-52. He made many inventions that are still being used today. Yet, right now he has trouble with the TV remote. Can't figure out how to get a DVD into the tray properly.
We are in the process of getting him off of the road so I'm right there with you on that driving issue. There is a thread (I think it's on page 2) that has a lot of comments on the subject.
I'm sorry for your troubles, but you found the right place. Look forward to hearing from you again soon.
Sandy, we are fortunate to have computers aren't we? I often think i don't know how I would have survived thus far if I didn't have my fellow caregiveers to communicate with. This is a wonderful site for you to have found, and now you have many new friends to help you with this ardous task of helping our spouse as they encounter and suffer Alzheimers. I have Parkinsons Disease so I know how difficult it is when a person has their own health issues. I know you will benefit from this forum. Welcome!!
Welcome to my website. It is always good to welcome new members, but you have come at a particularly good time, because the weekend blog is chock full of information for the newly diagnosed and new members. Go to the home page - www.thealzheimerspouse.com - and scroll down until you come to the Weekend Blog. It's a good place to start. Also, look at all of the left side topics, and when you get a chance, click the box that says "previous blogs" and scroll through. You will find many topics to which you can relate.
We are like no other forum on the Internet because I created this site specifically for spouse to discuss issues that relate to marital topics that no one else understands.
Hi Sandy. I'm fairly new here but I can tell you that you couldn't have come to a better place. It is wonderful that Joan has started this website. We all feel like good friends. We're all in the same boat.
Adding my welcome, Sandy. its THE place to be if your spouse has AD or any type dementia. we ourselves, once the diagnosis is in-can only remain in denial for a short term if we are going to grab the bull by the horns and help our spouses and ourselves get thru this dreadful disease. along with all the added responsiblitlies of handing ourselves now we find we have another totally dependent person to confront and make decisions for. you can spend alot of time reading here on the forum and gaining valuable resources and information with handson knowledge from those of us who are in the trenches before you.:) glad you joined! divvi
Starling, if you're going to keep offering your husband cake or ice cream right in front of me, wouldja please be polite enough to offer some to me, too?
Sandy, welcome to the family!
One thing I try to is keep an eye on my husband, or an ear out for what he might be getting into. If I sense he may be getting into mischief, I wander by, act interested, and offer to help. Sometimes he says yes right away, sometimes he is perfectly capable of doing it himself, thankyouverymuch, and I drift away for a few minutes, then try again.
As far as taking over financial affairs, if you haven't done any of this in the past -- there are lots of commercials on TV these days about needing life insurance etc. Maybe fuss a bit when one of these comes on, tell your husband you're worried about what would happen to you if anything ever happened to him, and ask him to show you ... how to balance the checkbook, plan the budget ... where the important papers are ... how he's chosen insurance for the house or car and who holds your policies and who should be contacted in the event there's a problem ... gosh have we ever prepared wills or POAs, what are they and how do they work, where do we keep them, who prepared them ... how on earth does one do the taxes? and do we use an accountant or do you prepare them yourself? And of course, you'd want to practice doing the bills for a while, just so you could get a feel for it. Or ask to do the taxes yourself, with him watching and providing guidance. Or you'd want the two of you to talk with an attorney about estate planning, just so you could learn more.
A little bit here, a little bit there, always under the guise of learning from him.
I have noticed that while my husband is truly unaware, consciously, of his problems, he often still knows enough to "compensate", to cover up the problem or avoid getting into a situation where he won't be able to do something right. He'll often shove something at me with a flimsy excuse for why he wants me to do it -- even though he may have done that very thing perfectly well the day before. I know now that he is unsure of himself, and I just do whatever he asks as if it's entirely normal for him to ask me. I agree with the excuse.
I was lucky enough that it didn't take very much gentle pressure on my part for my husband to willingly hand over the checkbook and bills. Trying to compensate for AD is very tiring, and I think he was plumb worn out struggling with the bills. When it came tax time, he mentioned it and I told him I'd already given everything to the accountant who does the taxes for my company, it just seemed sooooo much easier than having to do it ourselves. He did pout a bit about that one, but didn't get really angry. (It WAS sooooo much easier, too!!!)
Also, any time my husband helps out, even if it isn't done quite the way I'd like (washes the dishes but puts them away in weird places, or doesn't get them entirely clean, for example) I make sure to let him know I appreciate his help. And if I have to fix what he did, I try to do so when he can't see me.
I would recommend not letting him use the stove. I don't have that problem with my husband because he stays away from anything resembling cooking or housework, but my Mother did and she always had a problem with leaving burners on (sadly I inherited the same problem) and I had to MAKE her stop using the stove. This was as hard as getting my husband to quit driving, but it can be very dangerous and burn down your home. A friend told me to put a shut-off valve on the back of our gas stove and others told me to remove the knobs. I was lucky in that I watched she stayed out of the kitchen and then she got to the point she could not walk.
Watch out for leaving the water running. My mother flooded the lavatory in the bathroom and my husband almost overflowed the walk-in shower. He also flooded the bathroom lavatory before I thought to remove the stopper. Some others have recommended special straw-like faucets. It seems every week brings up a new situation or problem.
I'd like a chocolate brownie with a nice big dollop of soft vanilla ice cream, please. And, a big cup of hot, black coffee. Thank you very much! Oh, and while you're at it, don't forget to bring one to our new friend. She might like to try some of that.
I wasn't planning on going out any more today. Now you guys are going to make me go to the store and buy something good to eat. Gee, there's any ice cream place that makes a great sundae with strawberries, bananas, whipped cream and a cherry on top. Yum. Big enough to share with hubby.
Welcome, Sandy! - I made homemade banana splits last night for desert (we had salads for dinner!) - with strawberry, pineapple, chocolate and caramel toppings, with whipped cream, nuts and cherries on top! <grin> We sort of saved our calories for desert!
Hi, what a welcoming group! Thank you all. And, Imohr, yes we have had the overflowing sink problem when I thought I heard it raining in the hall.
With today's medicines, does the disease continue to progress slowly as it has so far? He is competent in hygiene, taking meds, going about daily routine, except his short term memory is about gone. Does not remember even when coached. Cannot be counted on to carry out chores unsupervised, however subtly.
Are you all feeling stressed although doing stress management techniques? What helps mosts?
Sandy, the rate at which AD progresses depends on the patient ... there's just no way to predict it. Some patients do respond very well to one or more of the available meds, some don't. My husband was diagnosed with moderate AD three years ago. He was put on namenda, and improved quite a bit. Six months later, he entered a clinical trial for huperzine A (which is a "natural" cholinesterase inhibitor, reportedly more effective and with fewer side effects than the synthetic ones, aricept, exelon, razadyne, etc.) He has been holding pretty steady since then.
...are any of us stressed? Gads, I don't think there's anyone here who is NOT stressed. I can't tell you what stress management techniques help most, since I haven't found them yet. :-) Seriously, definitely taking walks, preferably in a park or by a lake. I suppose that would be difficult for you? Probably exercise in any form, but the fresh air and sunshine, looking at pretty flowers and birds, those help.
Stress management in my book is diverting your attentions from AD for any given length of time possible-even seconds- to something or anything that makes you smile or laugh. laughter is a natural endorphine-divvi
Hi, all. Sancy 306 mentioned in another post that her DH might have FTD. Just thought that I would mention it, if you didn't catch it. It might change the advice on medicines.
Sandy, has your husband been properly diagnosed, by a qualified neurologist? There is a big difference between AD and FTD (ongoing discussion under the other thread) and it is very important that you, and the doctors, know what you're dealing with.
Another welcome, Sandy306. This message board helps with stress management. When things get out of hand just come here and tell us about it. Be assured that some one, maybe everyone here has been through it and knows how you feel. If you've ever heard the saying that "misery loves company", I guess this is the company you're going to love. :-)
I'm looking into Chi Gong. It is a very simple form of exercise that helps with stress. When I get a moment, I will try to find a CD to order from Amazon. Dr. Oz on Oprah recommends it as a stress reducer. Are we stressed? Well, yeah, that's why we huddle together. AND studies have shown that stress is the #1 ager. & Stress builds up as fat in the belly. I think this site reduces stress. You are able to share as you could not anywhere else, let it all out. And there will be someone who understands.
Well, all I can say is that I've gained 30 lbs. in a year & I swear most of it has gone to my belly. Stressed anyone? I used to run around like a little butterfly, but now I have this sagging belly that need camouflage clothes. Gross.
I've gained almost 20 lbs in the last 8-9 months. My legs feel like lead. And,I also have a miriad of other complaints and if any of you want to hear them, respond to this messaage and I'll be happy to list them for you. (NOT!)
DH never gains an oz and he eats all the time. Grrr. There's no justice in this world.
Sandy, as I myself also battle numerous health problems I have to watch the stress too. Some of the things I do may not work for you due to your problem, but I have become a huge fan of lavender oil. It calms me. I have changed all my cleaning products to ones that contain lavender scent. I also (to the best of my ability) do yoga. I listen at night to cds from brain sync, especially the Kelly Howell ones. You do need head phones. My DH sleeps well and I can do this with out disruption. Avon sometimes carries these cd's in their wellnes section. I have lost 50 lbs since my DH began this journey due to my IBS. Keeping a journal helps me too and a graditude book (yes, theres still much to be grateful for). There are online churchs you can connect with, and specific health problem online support groups. What helps the most though is to take a deep breath and realize its ok to need help. Its ok to vent. You will have stages to go through too. You are not going through this alone. We are all here for you, we can't help if you don't let us know what you need. I bet each of us is a specialist in something. Mine seems to be prayer. The serenity prayer is a good place to start my day. We all have to pick our battles here, we need to make ourselves and our care one of those battles. Keep posting :o)
I found this site 2 weeks ago and was so greatful. Welcome Sandy!
I keep noticing all these posts that say "he can't even run the remote." I bought my husband a "Weemote" first made for kids, now there is an adult version. He was able to use this for 2-3 years. It has an on/off button and a volume control and you can program different shaped buttons for different favorite channels. I found it by Googling "simple remote."
Thanks for all the help and suggestions. You are such kind people. I liked your saying Magnoliarose ( and I join in saying what a beautiful name). Another saying that helps me is Don't wait for the storm to pass, but learn to dance in the rain.
What a neat idea for a simple remote. Never knew they existed. Thank you.
When we eat could I have some hot fudge sauce on my banana split along with the usual except no whipped cream or nuts, please?
>Another saying that helps me is Don't wait for the storm to pass, but learn to dance in the rain.
I saw an editorial cartoon today about Randy Pauch, the man who gave his "last lecture" and has since died of pancreatic cancer. It shows a Tigger bouncing away from the lectern, with the caption (a quote, I think) 'you have to decide if you're going to be a Tigger or an Eeyore in life."
And that's it. What we hope we can do here is help some who would be Eeyores (and we all are, at the beginning) to move well maybe not all the way to Tiggers, but maybe Kangas or rational Christopher Robins?