Before I vent I want to say that I know many of you are facing much worse things than I am right now. My DH's worst problem is his short term memory and for the past few days he is really getting on my nerves. It is mainly the small stuff, can't find anything ninety eight percent of the time. Can't remember what he or I have said. Goes on and on about stupid sports games or athletes/coaches and I want to scream I AM NOT INTERESTED!
Ever since we have been married (42 years) I have taken care of everything. Money, painting,wallpaper, put mowers together as well as gas grill and computer desk. If something needed to be fixed I fixed it or called a pro. None of it bothered me but now this piddly stuff is driving me nuts so I don't even want to speak to him.
He has always worked hard and provided for us so in that way I can't complain. He takes out the trash, empties the dishwasher and runs the vacuum and thinks he has done a mammoth job. I could do it faster myself if he would just go somewhere for a couple of hours.
Okay folks, I think I am done for now. Thanks for reading and I hope each and everyone of you has a NICE day for you and your LO.
Believe it or not you are in the hardest part of your journey RIGHT NOW. One of the reasons it is so hard is that some of the time he seems perfectly normal and you can't believe he is really sick. And no one but you knows he is sick, so no one around you is helping you out. And you can't talk to anyone about any of this stuff locally because it is not time to "go public" with what is wrong with him. And, and, and...
You might not be dealing with diapers, or the hard end of life decisions, but you probably are dealing with not being able to get away from the house and from him and just do something for yourself without feeling very, very guilty.
Can you tell I've been there and done that?
Go ahead and vent. And then try to do one little thing just for yourself today. Soak your feet (did that myself yesterday). Find a good book and find a quiet place to read. Get on the phone and talk to someone about anything except the disease. Pick out a knitting pattern and buy some yarn and needles...
Thanks Starling for understanding. I have been thinking about checking with some of my friends in our UMW Circle at church and see if they would want to go for lunch one day. My plans for today are to start clearing out some "stuff" for our church yard sale in August. The biggest mess is my sewing room so I will start there and try to make a dent.LOL. After that it's the cupboards and closets.
I need to get rid of things I haven't used for ages and maybe not have so much to do for when we have to sell the condo and get something all on ground floor level. I know when my DH gets worse I won't be able to help him down 3 flights of stairs. He is 5ft.10ins and 165lbs. I am barely 5 ft and weigh 94lbs. I would like to start looking now while my DH is with it enough to settle in a new place. He is digging his heels in and wants to wait until the housing market improves which in my opinion will just be more expensive.
I have been to see an Elder Attorney and have to make another appointment for my DH to be with me. It seems like our problem is not having children or close relatives to act as trustee so we will have to go through a bank for someone to act as trustee for whichever one of us is left.
Again, I thank you Starling for helping me to feel better.
Yeeah...sometimes these things just get to you. I find I have to be very discreet about letting any financial information slip out of my mouth unedited. The IRS is trying to penalize us for something (that I suspect our accountant screwed up on,) and I grumbled about it. That was all it took for Jeff to get in the obsessive thought pattern that we need additional income and therefore he must need to get a job and...etc, etc. It's a little tricky to stamp that line of thought out once it gets going, although like all AD thinking, it usually shifts to something else if you wait it out. Hard to know how to address it at the time though: It's terribly unhelpful to point out that a)he's uninsured to drive, b)he can't perform any even slightly complex tasks(doesn't believe me, and it feels mean to say it), and c)we're really ok for money, so don't worry about it. Sometimes the best approach is "let's go take a drive, or go visit someone, or go to Trader Joe's...or whatever.
Right now my DH keeps checking to see if they have started to wash the outside of the condo units. They did 4 units on Friday and were supposed to start on the next 4 today. We would be the 4th one and I figure they will get here when they get here. DH is checking out of the windows or opening the door to see further. It is now 12.40pm and he may have a hissy fit if they don't come soon!!!!!
Hay, my husband is still mad that the wild birds aren't eating the seed they put on the ground from the bird feeder. Even the squirrels aren't interested in whatever is down there.
They are not getting any more until they FINISH THEIR LUNCH!!!
Jean and others: If you live in a two story house and need to move into a ranch style or other one floor unit then I recommend that you look seriously for another home while your spouse can adapt to a different environment . This is what I had to do as not only was I concerned about my husband but I have Parkinson's. and can'r go up and down stairs easily. As we get older, our bodies need easily accessible surroundings including showers, few front steps, etc. Also it would be easier to do the paperwork, legally, in closing for the home and selling yours. I don't know how you can accomplish getting your DH involved , I had a grown son who helped us. You might do the preliminary looking yourself or with a friend who can help before you try to bring your spouse into finding a new home.Good luck!!
Hi carewife, We live on the 3rd floor in a condo and we don't have an elevator! I have been thinking of getting in touch with the agent who sold our last house and have her check on some possibilities. We would need to be on ground floor level and not have to worry about yard work. I would like to stay where we are if the same size condo became available on the ground floor.
Trying to keep everything straight and do the right thing is getting to be another pain in the kazoo! Like I said earlier I have always taken care of everything but it seems like it is all too much right now. The other day my DH asked me what color socks he should wear with his gray suit. Usually it's which tie and I have a hard time thinking he is unable to figure out that much. Lord knows how I will be when it gets really bad.
Again, I think Starling said it well. I think it is the hardest when you are still in the I can't believe this is happening mode. It seems a year ago I was having more trouble dealing.. Notice I said "more" There are still irritating things but they are different.
I guess last year I had more expectations of things , now I don't expect him to understand things.Many of us were the "doer" in the family , doing more around the house and in general in the family.Nevertheless, it's amazing how much more there is to do when one person stops being able to to for herself/himself.
And Emily I agree with you. I still need to edit my communication. After years of sharing information I still err and mention something about a bill or some house hold problem and then so want to take my words back. He does not understand, he will focus on some minor thing and just won't let go. It is so much easier if he doesn't hear about certain things.......
I think all of us do better with the repetition on some days than on others. Some times it just plain gets to you. Give yourself a break and a treat and start over..
I agree that when my DH first started all the questions and forgetting lots of things and repeating, repeating...did I say repeating?? hehehe ...It kind of drove me crazy. I didn't understand about AZ like I do now, thanks to this place and reading everything I could find about the condition. Now, it is much easier to go with the flow and I find it easier if I don't respond and if he questions that, I just say..."sorry I didn't hear you" or I just agree with every thing. When he can't find something and has no idea where it is, I just say..."don't worry I will find it for you later today when I am not so busy and if we don't find it, it is no big deal...it will turn up someday"....I rarely challenge him on anything he says even though it doesn't make sense or it is something he has said 10 times in less then an hour. I also have found that little fibs work well. Like right now the drug store is having problems filling a prescription he needs...I told him not to worry I will go up to the drug store later to day and pick it up...yet I have no idea whether it will be ready or not. It is so difficult for everyone and you just kind of learn to cope as you need to.
Yes! I am still in the "I can't believe this is happening mode." Someone please wake me up from this nightmare & tell me it's just my imagination, I'm reading into things, things aren't as bad as they seem. How aptly put.
You mentioned needing to find someone to act as trustee. Do NOT look for a bank. They only understand finance.
I have been looking into finding someone to take care of my husband should something happen to me, to be trustee. There are professional private fiduciaries with extensive expertise in conservatorships/guardianships (preferably ones who are certified guardians) ... the best either have their own staff or collaborate with a network of professionals in every line of work needed to care for ADLOs -- case management, legal, financial, in-home care, you name it. These people understand EVERY aspect of caring for your husband, not just how to care for your/his assets, and they have the contacts to get the help he needs the minute he needs it.
My nerves have really had it today. Last night he had to hide his wallet because "those kids" were going to steal his money. This morning he doesn't like the clothes I picked for him to wear. Then I show him something else and he doesn't like that either. Sorry to say, but I ended up screaming at him. When we're around his son or other people, he's very quiet so they don't see what I live with 24/7. His son lives two miles away and I guess it's much easier for him to ignore the situation. Sorry. Guess I'm feeling sorry for myself right now.
blue daze, I really wish I could. They both work, don't have an extra bedroom. And, I know for sure that they wouldn't be bothered. There was a two month span the last time we saw him. Of course, son is very affectionate when we finally do see him.
if its any condolence, my DH blames everything all on the 'guys' or the 'kids' just like your husband. i am thinking the only logic of it is hes seening his reflection and its the 'guy' and maybe in his mind hes back to being and acting like a 5yr old. seems this maybe another 'trait' of AD. like toothpicks/lint/forks/obessive compulsive things...the more i read here the more i know drs dont have a clue..divvi
Carolyn; think of interacting w/ your DH as you would a child....give a restricted choice of 2 sets of clothing you have chosen not unrestricted decision processing.... he probably finds having to process the language and decide too much. also i am sure he wants to keep control over his life even small things such as clothing as long as possible. at this stage of AD your spouse can be a real pain in the rear!!
What I used to consider anal behavior I now realize is a last ditch effort to maintain control of anything possible. That can mean always putting the salt on the same spot of a patient's tray or paper clips going the same way. Maybe our former bosses were showing OCB as an early sign of dementia. Scary isn't it.
Thanks. I'm so glad I have all of you to calm me down. Now DH is saying that he's sorry and how much he loves me. And, by the way. wearing the first set of clothes. LOL I'll try giving him the choice and see what happens.
Yesterday I was thinking to myself "wow, you are doing really well, you are really developing some patience". Usually, right when I think that, something jolts me out of it. DH wants to change tv channel from news to Two and A Half Men, which he watches everynight. He gets remote, does not get glasses, can't see numbers and starts getting agitated. I should of just changed the channel for him. But it's something he still knows how to do, and I didn't want him to forget it yet. So I tell him just change it to Channel 6. He points the remote at the wall, gets mad when it doesn't change and throws the remote at the couch. Sheesh! I go pick it up, I am beyond irritated. I change the channel, tell him where I am going to put the remote if he does that again and then wait for about 3 minutes. Storm passes, he remembers what he did and we both apologize. Just another night at the Page house.
Hey! it worked today. He didn't like the shirt again so I told him to pick one out of his closet and I'd tell him if it matfched his pants. Well, he brought out one that matched fine. Great! No argument today.
Lately, I am starting to look for characteristics that DH has NOT lost as he travels the AD world. its seems very ironic to me that in this world he has lost the ability to really communicate with a normal vocabulary and putting together sentences that would have any real meaning are diminishing daily,- but at the same time, he has not forgot how to 'belittle' me when hes trying to talk down to me? he still shows signs of the haughty and arrogant lawyer he used to be:) even though so many of his intellectual skills are lost. he can actually be mean to the dogs if he choses like taking a favorite toy and putting it just out of reach so the dog cant reach it and watches the animal while hes struggling to get to it.when i ask him to put it on the floor for the dog, he throws it at me instead. so he understands reasoning if he choses. if i say thank you he says your welcome, and vice versa always says thank you all day long so it is very aggravating to him if the person addressing him isnt polite-this takes some sort of thought process, right? . my sis in law and i have long thought he knows MUCH more than hes letting on and still has ability to comprehend much more than i have been giving him credit for up to now. he can be very beligerent and arrogant just like he used to be before AD -he can verbally chastise me if things arent his way without hesitation- this is very perplexing to me as this is the same man who an hr ago was having a huge conversation with a statue of a horse on the table - does anyone elses spouse show tendencies to demonstate this huge variance in intellectable tendencies or could it just be we are not giving them enough credit as to what they really are capable of knowing at various stages? divvi
Divvi-there is an earlier blog questioning if they can control their behavior. I believe they can when it is to their advantage. As the decline continues they lose that ability. My son can't get past hating his father because he won't accept that this is the disease.I don't know if I ever will either.
Okay....here goes...I see their thinking pattern as a big shubbery maze. They can go down one path and make several turns and dead end; then they turn around and go back one or two turns and go a different way - again dead end; no matter which way they turn or how far they go, they are NOT going to get to the center of the maze.
What makes US all crazy is the fact that there are MOMENTS of rationality; of sparks of reason; of hearing us; of doing some chores; and yet followed by total confusion.
They are also all into ME though. They seem to have lost the ability to think of US. My husband used to be so considerate and thoughtful. Now, he just sticks in a DVD, without regard to the fact that we might be watching a show on TV at the time (this is just one small example)! I honestly don't think that they do have any control of their behavior! Otherwise I might be tempted to try to put him in time out! LOL
Bluedaze, it could be that your son is in flat denial that his dad has the disease. He may not accept that it is AD at all. Some people are in total denial. There is not much you can do to convince them, especially if they see ANY rationality when they are with them.
My family is not in denial. The main reason, I am sure is that when they come to visit they are here for at least 36 hours at a time. Sometimes more. In that length of time there will be enough crazy behvior that you just can't be in denial.
Also, it turns out that almost all of my daughter's friends have a parent, aunt, uncle or grandparent with dementia. They have basically pulled each other out of denial.