For some reason I haven't yet figured out my DH is getting on my nerves today! He is still in the mild stage so I shouldn't feel this way when so many of you have so much more to contend with. He hasn't really done anything either, except a little while ago he put a few grapes in a bowl way to big. I asked him why he didn't use a small one. His reply "I don't know where they are". This from the man who empties the diswasher and put the dishes away!!!!! Granted, sometimes he puts things in the wrong place but everything is where it has been for the past 7 years. I sometimes feel like he should remember SOMETHING.
Okay folks, I am done venting. Tomorrow is another day and I will probably be okay. I hope everyone finds something to smile about each day. God Bless
Don't worry about venting - this is the place for it, and we all understand.
Sometimes I wonder if being in the earlier stages is more frustrating and anger provoking than the later stages. In the early stages, they seem to have it together enough at times that we feel they SHOULD be able to do this or that, and when they can't, it's SOOOOOO FRUSTRATING. That's when I find myself getting the angriest. "What do you mean you can't find the tomatoes? They're right in front of your face on the shelf in FRONT. I put them in FRONT, so you would see them!!! Nope. The brain just wasn't processing it, so he didn't "see" them.
In the later stages, they are so obviously impaired that it is easier to have sympathy for their disabilities, I guess.
The one that gets me is this: He eats english muffins every morning for breakfast. He has to take it out of the freezer, put it in the microwave for 15 sec, split it, put it in the toaster, then butter it and eat it. You can imagine that in someone with even early stage AD, this process is rife with opportunities to forget where you were. Consequently, it is quite common for me to find abandoned english muffins on the counter, in the toaster, in the microwave--because he forgot about that one and did another. So we go through twice the muffins we should, eating only half, as the ones left out tend to be stale, or nibbled by the cat. I try not to make a big deal out of it.
I eventually made a rule for myself when going through AZ with DH. Never ever ask Who, What, Where or Why unless you want your blood pressure to go up! It is very sad, they look so normal and like themselves, when they truly are not normal or like themselves, from the time the disease starts. But it is so easy to forget they have a disease, and that is what makes it hard to deal with.
My DH had to quit (well, I fired him) doing the dishes, since he started putting the dirty dishes in the cupboards. Once I asked him to get some cherry tomoatoes and he picked all the highbush cranberries that weres for the bird to have in winter! One thing about that experience, I decided to try to make something with those cranberries and it made me extremely thankful I didn't have to live off the land - I think I got a cup of sour juice from the whole batch.
It's true what Joan said, that it's harder at first. At least that's the case with us. I also had to fire the dishwasher for the same reason--dirty dishes in the cabinets. He'd get half way through forget which were dirty (on the counter) and which were clean (in the dishwasher). But once he couldn't do anything, it eased up, believe it or not. You give up any expectations.
Sigh...well, I don't have expectations, so we're ok from that angle. It's just that he's a sort of sodden presence. I actually feel a lot lighter and at ease when he's away, which isn't often. And that feels like the worst thing I could say, but this stupid illness is an albatross.
I also took over the dishwashing for both wet dishes in the cabinets, but because of the running of water constantly even while wiping the counters and putting things up! My water bill is down $5.00 now. :)
I have come home from work to find a cup of cold coffee on the counter beside an over-cooked weiner and a hard piece of bread --as if he heated the weiner in the microwave, fixed himself a cup of coffee and got distracted and never went back to them.
This week, he is having difficulty in communicating. His words don't make enough sense for me to figure out what he's trying to ask me. It is so frustrating, because we used to think so much alike we could finish each other's sentences.
My blood pressure, which has always been normal, has been between 150/80 up to 175/82 this week. I have made an appointment with my doctor to see about it. I guess having a glass of wine each evening is not going to be enough any more. :(
I know what you mean about the communication problem, Mary. It seems like DH can hardly get out a coherent sentence anymore. I just got a new job and met with my new boss for dinner last night. DH was along with the kids after the sitter went home. After I got home, he kept trying to tell me something our 9 year old did that got him into trouble, throwing things in the driveway. He just couldn't come up with the words. First he said he had thrown cups, then pointed to soda cans. I confronted our sons and it turned out it was balls. It's frustrating that they not only can't come up with the words, but come up with the wrong words. This seems to get worse weekly now. I'm not sure how I'm going to manage working full time, when there will be times only DH will be with the kids. It seems like it's like leaving them home alone or worse. I think about hiring some kind of nanny, but if I have to pay for a nanny, there goes the extra money I'll be getting from the new job. Sometimes I feel like I can't win. I'm lost in this giant maze with no way out.
I think all of the replies have been from gals. My wife was the cook and dishwasher (except when the kids or I helped). Now she can't cook, though she does not accept that verdict. She does the dishes, and puts them away in really creative places. And as was said before,it makes no sense to ask why or where or even how. If you think it was/or will be tough to "fire" your husband from that task, give me some advice on getting my wife to back off, when that becomes necessary. Yesterday we actually went through the pantry some cupboards, without incident. I am going to wallow in the good days.
Just be glad that you all are only finding dirty dishes in the cupboards....I was "blessed" to find used toilet tissue....Yep, my husband was one of those who hid "strange" things in funny places.....
Speaking of toilet tissue....a member of our caregiver group lives in a two-story house and she has monitors so she can hear him when she is in another part of the house. She heard water running from the toilet flushing that went on too long. When she went upstairs to investigate, water was coming down the stairs! He had stuffed the toilet up before by putting in too much paper, but this time, by the time she got the water turned off, soaked up what she could, called the plumber and had the repairs done to the house, it cost her $35,000. Now she keeps the water turned off at the toilets and goes and turns it on, flushes it, and turns it back off. She says it is a pain, but a lot less expensive!
Yesterday DH accused me of stealing his money again. I showed him his statement of accounts and investments.That settled him down. He then advised me that he wants his estate shared five ways with his children receiving 80% and me 20%. We've been married 20years. I can certainly understand how things can get very messy if wills, POA etc are not in order. Forunately ours are. I just agreed with him!!!
Everytime I say things are going fairly well I should bite my tongue..tonight I am "disgusting" that is his favorite descripton of me when he is on his dislike mode. This afternoon was stressful as his car died at the park when he took our pup for their afternoon walk. I think we will find he used a wrong key to try and start it and locked everything up...we'll see, but after FOUR hours waiting for AAA to do the tow thing, and we finally had dinner at 8:30 ..well... easy to guess what the situation was like. No clue what set him off with the digusting thing again..just me being there, I guess. Our sweet pup just cuddled thru the entire incident. I want to SCREAM! Surely looking forward to sleeping next to him tonight. I know..this is the easy part. Sh#@%*&it.
Talk about frustration, a light blub went out in the bathroom vanity, my husband decided he was going to change it (which he normally he will call me to do it) First he tried to un-screw in while it must of been hot, then twisted it the wrong direction & it broke off in the socket. I am suprised he wasn't shocked. I had to turn off the breaker & use the pliers to remove the broken piece. This all happen as we were leaving to meet our son & family for dinner.
Kathi, no, this is NOT the easy part. I've been reading Big Tree Murphy again and she says this is the hard part of caregiving the disease.
If you have never been to Big Tree Murphy is the web site of a woman who's husband died of dementia several years ago. Someone is keeping the site up and mostly functioning, and that is a very good thing. If you have never been there you need to go. There has been nothing new for years and it is possible that like all old things on the web it is going to just collapse on itself one of these days, which is too bad.
I just looked at the Big Tree Murphy site. There is some really helpful information there. The lists of symptoms at different stages are more detailed than any I've see. Thanks for mentioning it.
Thanks Starling, yes I have visited that site, but haven't spent much time there yet. I should get used to the ups and downs, but I get "comfortable" for a bit then whamo hits, and I let it throw me. I truly don't know how I (and everyone else) would manage without this group. My pup is getting tired of hearing me swear. Naturally, this morning all is well and forgotten.
I'm not sure this is venting, but we just returned from the Dr. appointment. G is down another 5 pounds, Dr. got on his case about eating (nicely). He suggested we stay with the Neuro we have as a new one wouldn't be able to do anything more, and this one is a nice person..there just isn't anything else to do! The...we filled out and had G sign the form for no gallant attempts at life saving to keep in his file. We have it in our wills, but there wasn't a record in the Dr. office..G was adamant about having zero done to prolong life for any reason. I think it finally hit him what is happening and for the very first time awknowledged how hard this must be for me as well. He said it twice which amazed me as he hasn't exactly liked me lately. I feel lost and rather empty at the moment...would LOVE to have several glasses of vino to just mellow out, but can't really do that now...no one to talk to except this panel of understanding souls....again, thanks for the ears.
DH always blames our son if he can't find a tool. Son is 29 in October. We have two acres with two houses and our son lives in one of the houses. He has always been welcome to use DHs tools. He generally always puts them back. However, for that last couple of years, if DH can't locate something, then son must have taken it. Or, son's friends must have stolen it. I usually always find it quickly. I can't believe how negative he becomes over nothing at all. I think that I hate this part the worst. He is angry 90% of his waking hours about something; how another driver looked at him, about how hot it is, about how tired he is, about all the work to be done, about me making plans when I know he is tired, about my attitude. His favorite is about how nobody loves him. It doesn't matter if son just sent him a picture on phone of grandchildren, or daughter called him three times just to visit. then, if I try to remind him about how the grandchildren love him or remind him that children would not be calling if they weren't thinking about him, then he tells me that I am either picking on him, or trying to start a fight, or always making it out like he is wrong, or I never let him be right, or I never let him have his own feelings. It is so sad to see him ponder all these things and waste so much energy doing it.
What you are seeing is an effect of the disease. We went through that stage and it drove me crazy as it was me that he was picking on - I didn't understand that it was the disease (he hadn't been diagnosed yet) and it really did a number on my self-confidence. Arguing with them when they go this route is futile. Try saying something positive and use redirecting. You may have to repeat yourself a couple of times but I did find that that helped and I wasn't getting so upset with his actions.
We are not diagnosed yet either. If I hadn't found this site in March or April while doing an Internet search on his symptoms: mood changes, anger, asking the same question, agitation, etc. I would still not know what is wrong. He is still working, driving, and "normal" to everyone else who sees him. our son has seen some things and is understanding. our daughter is beginning to get the picture. Really, until he progresses, this is where we will be for a while.
As the others have mentioned, sometimes, on his good days, I question if there is anything wrong. Then he will start in on something and I see the symptoms again.
Kathi, I'm sure that experience really threw you for a loop. It is one thing to fill out an Advance Healthcare Directive when your loved one is healthy, another thing entirely when a terminal illness is staring you in the face. And, of course, the weight loss and recommendation to stick with the neuro because there's really nothing that can be done reinforced in spades that the AHD is for real.
It is interesting that it got through to your husband enough for him to finally express sympathy for your position. Try to hang on to the memory of that. It isn't that he hasn't liked you lately, it's that he hasn't liked the position he's in, the way he feels, his fears, the change in your relationship.
Thanks Sunshyne, I am surprised it has hit me so hard. Tomorrow is my BD..big deal! I'm meeting my daughter for lunch at a fancy fancy so need to shake this off before then. She has enough on her plate, so I don't want to add to it with my doldrums.
G seems very quiet...this has struck him hard also...really consciously for the first time, I think. All the "should dos" are hitting me...sell the house, sell the truck, find a new place to live (after 35 years here!) endless questions on the future, but I guess I'll just pass on it all for now.
Kathi, happy birthday! I hope you really enjoy your lunch out with your daughter.
As for the "should's", take it slow, one step at a time, don't rush into anything. Talk with a certified elder law attorney, one who specializes in estate planning, if you haven't already done that.
Well, so much for Happy B-Day. We had four outbursts today..totally my fault, I'm told.In between these we got a "body press"..haven't had one of those for a very long time..and " I care about you too much"..what the hell does that mean? Of course, then our pup was playing and chewing..and the explosion hit..MY FAULT she was destroying her toy! Hello? She was PLAYING with it! The evening went quickly downhill from there. Just one bloody day..too much to ask? Apparently as it was all my fault. One large lovely..my SIL's sister sent me a lovely BD bouquet..from my family in Germany..they live in Franfurt...such a lovely thought...neded that. Lunch with my daughter was great, but I felt a chill when talking about her perfect dad. I cut that short, but felt something I haven't sensed before. GD, but I HATE our life. Reading this..pity party time..damn.
kathi, venting is OK. Sometimes venting is necessary. If you can't say it all here, where can you say it?
We all grieve. We grieve for our LOs and what they are losing before our eyes. And we also grieve for the things that we are losing. The life we thought we were going to be living. The things we planned for that aren't going to happen. The special days like birthdays or the holidays that we no longer can plan on having the way we used to arrange them.
If you daughter is in denial about her father, that is another thing that hit you yesterday. The lunch that was supposed to be your special treat got sidetracked, as almost everything does, into even more dementia stuff.
You are ALLOWED to feel sad. And that isn't a pity party, it is just the way life is right now. And you are allowed to take care of yourself too.
Kathy=so sorry that your world is crumbling. Does your daughter truly not know how ill her dad is. More stress for you. Your pity party is just a natural reaction no not liking the hell we're in. No platitudes offered. Nora
Thanks again...I shouldn't get online before bedtime...that's when I feel the deepest sadness. Yes, I know that my daughter is in denial, but slowly becoming more aware. I had hoped to not even mention anything during lunch, but had been so shaken by his disruption just before I left home I guess it showed. My stomach is what is in turmoil right now! Going to go to Pilates and turn my mind and bod over to someone else for an hour.
Kathi37--That's not a pity party. If it is, I'm doing it a lot. I'm really sorry about your b'day lunch. And, I'm really sorry about your DD being in denial. I have one son who is. I don't talk to him about it. It's so obvious now I don't have to say anything.
Here's a belated happy b'day. If you find a way to settle the turmoil in your stomach, drop me a note. I'd sure like to know what it is.
Here we are again..after reading the above guess I could just do ditto marks. I get complacent, then some small thing shifts the mood, and bingo! At least he didn't totally explode this time, but was quietly furious with me? or with things in general? Who knows as he just stalked up to bed. Again, our pup sensed the turmoil and curled up in a ball inthe corner.
We are headed to Sun River ( a resort in Central Oregon) for a few days in a week...hmmm..lots of spare time in a different environment? Could go either way, I guess. Maybe the deer than get on the deck will be enough distraction for entertainment.Right now I can't get my head around spending so much alone time. Self inflicted wounds, once again...BUT..I'm taking the laptop so can still connect with everyone here when i want to scream.
The not knowing what will set them off, or upset them, does make things even more difficult. I've been there too in the last few days. He handed me a glass and was upset when I put it down to deal with it later as I worked through other things in the cleaning up. Don't ask me why that glass had to be washed right now. It certainly wasn't logical, but it just upset him so badly that he went off and sulked for the rest of the evening. Including refusing to help clean up after supper.
I STILL don't know what was with that glass, but last night he went to the sink and "washed" it himself, dried it and put it away. Since I never drink out of the beer glasses, I guess it is OK that the water was cold and there was no soap in the sponge.
At this point I'd just as soon he didn't help clean up after supper. It takes 3 times as long to do things when he helps and by the time we finish my leg and back are in so much pain all I want to do is sit down and hide until the pain stops.
Take along that laptop. Come here to scream. It is a safe place to do that.
Starling, You surely hit a cord with the glass washing. One wonders how their minds work sometimes. Thing like that are IMMEDIATE, and if put off become a problem for us. I relate to the clean up detail..for me it is morning coffee. We continue to use an espresso machine, but have coffee grounds everywhere...amazing how far spilled grounds can travel. Small meaningless detail, but day after day things like that build. At least your glasses get some water...mine end up put away wet with zero cleaning ! Just have to be an efficient mop up crew, I guess.:-)
They had Lean Pockets onsale at the market, 5 boxes for $10. Cheap lunch, let's not think about the ingredients!
But the boxes take up a lot of room in the freezer. I asked my husband to please remove the packages from the boxes and put them into a big zip-lock. Here, like this. He asked me after each box if that was all. I finally gave up after 4 boxes and did the last one myself.
He has now decided he is going to walk around the house. Outside, down the 3 steps up to the front stoop etc, wih his cane. He has not done this for most of a year. I'm letting him go as far as he can - he's very careful, doesn't fall, but also doesn't have much idea of his capabilities or lack thereof. It is now..12:18.
Reading thru this thread reminded me of about 3 months before my DH was DXed, he was moderate when that happened, my daughter & I were talking about window washing fluid in our PU. He heard us & said I'll put it in. Out he went and we talked bout others things. Half hour later he comes in and says " The hood is stuck down. I tried to pry it open with a crow bar and it wouldn't come loose." DD went out to investigate and released the hood inside the PU and up the hood popped. He was watching out window and said "how did she do that?" He had completely forgot about releasing hood first. His Dr. really got a good laugh out of that. Said it was one he hadn't heard. Things went downhill from there. I was stunned the 1st time I was helping him put on pants. He was standing. I told him raise leg, touching leg I wanted him to raise. When I got foot thru pant leg, he stood there on one leg. I had to tell him to put foot down. I have him sit down now. don't take the little things for granted. The last time he got water to drink from sink, he did ok, except>>>he left the water running, which I found 20 min later.. I did not and do not keep my cool ALL the time.
12:48. He is back inside, having walked roughly 30' to the street, 20' along the street (which is quiet) then back. I took him the walker; he couldn't have gone without it. I'm hoping this exercise will wear him out enough that he'll nap this afternoon.
LeeLyle, I'm constantly listening for running water. My husband left water running more than once. And we have had toilets that ran in houses other than this one, long before dementia, so I'm sensitive to that particular sound.
Lately he has been starting the dishwasher. Actually he hasn't actually chosen to start it, and I've finally figured out how it happens. I have always set the various cycles I wanted, closed the door and pushed the button. It turns out if you close the door and push the button you get the last cycle programmed. NOW I have to figure out how to turn it off so it stays off and so that you can start it again at the beginning when you actually have a full load and have put soap into the machine. <grin>
He keeps insisting on pushing the door shut so it is locked. I normally close it but not at the totally shut stage. But of course, I don't have dementia, so what do I know.
New one..last night the toilet seat in the powder room broke...custom color and size :-( G is going to fix it..took it all apart before I realized it..put it on the kitchen table until he could decide what else to do with it..KITCHEN TABLE? I'm a fairly cleanik, but! Got totally bent out of shape when I asked him to put it somewhere else. Now...unusable toilet on the main floor..no idea if, when, or how to get a replacement for the seat..blah blah. AND to top it off, I've an appointment for the dreaded colonoscopy coming up..stair master time up and down stairs.
took me awhile to find the water. We live in country and have a well. I usually hear the pump running which is what happened. I barely use dishwasher anymore. He won't eat and the few dishes I use, I wash by hand. Sometimes when we lean against washer, without pushing button, it will start up. Different brands I guess.
kathi37 - my husband used to take things apart and was unable to put them back together. Now he can't even take them apart. I too, keep an eye on the water, don't have to worry about the dishwagher, he doesn't know it even exists.
I am NOT mechanical at all, so pieces of things laying around are not good. I just have to stockpile stuff until my son visits (which isn't too often as he lives away). He is a mechanical enginner and can generally get things back together, but not always.I had a Doc appt. this last week and she asked if I had learned to do all the things G had done before. And she was serious! Sorry, many of those things will never be part of my learning curve. Bottom line, catch the problem before they come apart! Eyes in the back of your head time, I guess.
Oh my, this hits a chord! My husband is retired and I still work. He puts loads and unloads the dishes. Before I realized he had AD, He had put post it notes all over the kitchen so he knew where things went. I wasn't thinking and took all the notes down thinking that I didn't want notes stuck all over my cabinets. I wish I had not reacted the way I did. Now that he is diagnosed, I find myself learning patience - I think this is the life lesson I had not learned yet. I find dirty dishes put away in the cupboard and drawers and I find them in the most unusual places. He asks me everything but doesn't retain it long enough to do what he asked about. In my heart, I know he can't help it but it still drives me crazy.
Some dishwashers and refrigerators (with ice/water in door) have a “lock” to keep kids out. I’m guessing they didn’t mean for it to be used for spouses, but if it helps.
They also make a water supply line for toilets, and a separate stop that can be put into the line to stop overflowing or running toilets.
I am not mechanical minded either but I am thinking I am going to have to try and learn some things. Yesterday, I waited all day for SIL to stop and put my tomato juicer together and finally at 9 last evening I decided I had better try again....and I did it...makes you feel good.
We don't run our dishwasher every day - maybe twice a week. Husband was having a hard time deciding if dishes were clean or dirty and emptied the dishwasher randomly without noticing stains, etc. The magnet to tell about clean or dirty didn't help when put it up as he just doesn't seem to notice it. Furthermore, as intelligent and brilliant as this man has been all of his life, a couple of weeks ago, he filled the container with Joy.... The kitchen is far enough away that we didn't notice the suds that were pouring all over our floor - the new hardwood floor that was installed last year.... Those bubbles don't go away willingly. The water soaked under the hardwood and raised a couple of planks in the middle of the kitchen pretty high. I've weighted them down and only have one that is noticeable anymore. I'm not a fast learner because this took me by surprise. Now, I keep the Joy someplace else.
Also, this summer we returned from visiting my daughter in Ohio. The car was parked way far away at the airport so I told Husband to sit with the bags and I'd bring the car around. That was fine and I drove right up to where he was and popped the trunk. I suspect that most of you know what happened since we're in the same boat here, but sure enough, he only loaded one bag. As he was doing that, I was digging for the parking ticket so we could get out of the lot and when he got in I drove away. I didn't notice that we only had one bag until we were home - about 45 minutes away. I was so angry at myself for not knowing that I now need to get out and do the luggage too. That bag was filled with a bunch of teacher stuff I had bought in Cleveland for the coming year and had gone crazy buying. There does turn out to be a happy ending tho. Another passenger saw our bag, guessed it was an accident, rescued it and called me. Thank you! Thank you! Thank you!
Just wish I was better adept at knowing how to be that extra step ahead. My ego can't handle the thrashing I give it when I'm not. And the excuse "But I didn't know!" doesn't work.
Have I got comments here?! DH will empty the dishwasher before it's been run and put the dirty dishes in the cupboard. Wanna know how I fixed that? I took ALL the dishes, silverware, etc and washed them all over again. We have a nice conversation about us doing the loading and unloading for sort of a nice togetherness thing. It's working so far--like about a week. How long it'll last, your guess is as good as mine.
However, the Joy in the dishwasher--that posed another problem. First thing I did was get all the bathtowels out and spread them over the floor to soak up the water and suds. Took a lot of towels. Then--this is going to just amaze you--I poured about 2 tablespoons into the dishwasher and ran it again. Works like a charm. No more suds. The biggest job was cleaning up the floor and washing the towels.
It also works wonders if someone pours Joy into the washing machine. Those bubbles were coming out of everywhere! You just lay towels or newspapers down to soak up the mess. Pour about 1/4 cup of salt into the washingmachine and run it again. You just won't believe it.
Oh, and one final thing while I'm on a roll--if your dishwasher gets started before you're ready--you can generally just push rinse or cancel and it will be helpful.
PS--that's just plain table salt. Nothing fancy like sea salt or garlic salt or the like (smile). Hope your day is good. My son is on his way over to pick me up to take me to the Human Society. I want to get a little pet. I'll keep you posted on that venture. Sign!
My daughter and her family were just here for a quickie visit. I overheard my SIL explaining his Blackberry to G in detail and G acting as though he understood...he can't successfully use his existing cell phone let alone a Blackberry! He told Mike he thought he would get one ??? I'm quite sure my SIL was just being nice as he knows there are limitations now, but G was serious. Took some talking to get that turned around.
.. and they'll DROWN in the dishwasher water running all over the kitchen floor!!
What IS it about dishwashers? Mine used to run the thing 3 times a day, and sit waiting for it to end so he could turn it back on again!! It's that old water thing!
and now I'm venting. Husband went upstairs at 4:45. FOr some reason took off trousers, but put shoes back on. Got chilly (he had turned the fan on) and so put on another shirt over the one he had on. I had to go up and persuade him to remove extra shirt (sweaty!) and put some trousers back on.. and he came down for dinner worrying about the people who were waiting on the bridge (he's never heard of the Rainbow Bridge) to take people somewhere. He couldn't remember where, not Louisiana. But it was the awards ceremony where he will be awarded a million dollars. Completely polite, "rational" and completely crazy! How do you reply to someone who asks you how you want to spend the million dollars!