Normally I can handle most problems, maybe not happy about it but I can hide it. This morning, I had mopped the bathroom twice. DH misses the toilet every time. I cleaned it shortly after breakfast and then about an hour later when he had missed it again and there was pee all around the toilet. After lunch, he was in the bathroom, "watering" the floor again and I lost it! I made the remark that if I ever had a son, I would teach him to SIT on the toilet not aim at it! I have no idea why I lost control. I keep cleaning supplies sitting in his shower, use them many times during the day and then today...for some reason it was just too much. Then the guilt set in. He looked at me as though he had no idea what I was talking about. I'm sure he didn't. So there I am, on hands and knees, cleaning around a toilet, feeling like a dog!! This entire day has been awful. I've never snapped at him this way. He has gone to bed and I just peeked at him. He's sleeping so good. I know if he were to wake right now he'd say "hey beautiful" because thats what he does if he wakes at night. Its those times that he sounds exactly like he did before this awful disease took him away. I'm ashamed, I'm feeling guilty, I'm missing my husband. I thinking I'm having a pity party...I'll invite anyone who'd like to attend, but I'll warn you, I'm not very good company at the moment..
Audrey, it's okay. My halo has slipped several times. Most of us have days that we have trouble coping. It does not mean you are a bad person. It only means you are human.
Pity party away. I'm having a bad day today also. My husband takes his shoes off and on about 10x a day plus everytime he takes his shoes off he takes his wallet out of his pocket and puts it on a shelf. Over and over today--usually I can ignore it but today it drove me crazy and I was short with him. He looks at me all startled with that deer in the headlights look.
Then my next door neighbor came over with a plate of homemade cinnamon bread still warm and my husband didn't remember who she was. We have lived next door to each other for 20 years. He was worried about how she would get home and told her we would drive her. My neighbor thanked him for worrying about her but said she would walk as the weather was nice. That kinda threw me and made me feel worse for losing patience with him earlier.
Audrey--you are not alone. My DH misses occasioallyalthough the occasions arre happening more frequently. At our house I seoparatyed our towels--there are MY shower and hair towels; His shower and hair towels, Kithchen towels, and FLOOR towels. All the older, beat up, doesn't matter what they're used for towels comprise the last group. With pets in te huse I learned long ago, not to sweat the occasional accidnt or upchuck--just clean it up and move on. When DH started having targeting issues I started just verbally reminding him to sit down (keepng in mind that wasn't what he'd been taught and what wasn't natural to him. I wrapped a FLOOR towel around the front base of the toilet. That will catch most small misses, and can be easily pulled out for a larger miss. The floor is linoleum, so thoroughly mopped at least 3 times a week and washed up strategically as needed. Towels are changed, washed and dried regularly, and ones which develop unwashable odors get tossed. There's enough big stuff for me to worry about,I refuse to let the nuisanc e stuff get me even when it happens a lot.
Remember, If you can't see it; it's not there. and Chores will be there 'til you get there, 'cause they don't do themselves and there's nobody else gonna do 'em. No sense giving the AD Devil the satisfaction of yanking your chain. Pull these chores into a method and schedule that works for you. You'll feel better.
I'll join the pity party! But today hasn't been too bad re toileting. Haven't convinced him to sit yet. One problem: or 3 - we have 3 toilets, and he doesn't use just 1--he uses all of them during the day and night. My biggest complaint, and yes, I know it's small compared to what's ahead: he wears 3 or 4 shirts at a time (layered look is "in") and a couple pairs of pants. Now, of course, they can't all be dirty enough to wash when he changes them at least twice a day; sometimes 3, but he puts them in the laundry basket. Today, there were about 20 tee's and dressier shirts in the laundry. This time, I washed them all; folded them and put them on the bed. I told him I was going to start tossing shirts if he couldn't stop changing so often and not hanging them up. Tomorrow, I plan to start doing just that. So, mentally, he doesn't realize what he's doing. I'm not so sure. We've a consignment shop and a thrift store; so I'll be donating to them.
Don't feel guilty or ashamed just because you're human. Yeah, it's frustrating when you yell at them and they look back at you not understanding why you're angry. I've been wiping the floor on my hands & knees, too. You didn't do such a bad thing, really, you're fine. Give DH some hugs & loves, you'll both feel better.
The last 2 mornings my dh hasn't made it to the bathroom in time for his "big job". I'm so afraid that this is now a new phase that we are entering. He no longer even tries to get to the bathroom during the day which he always has until recently. He is turning 60 this week and he talks alot about dying and telling me that I'm trying to kill him. Everyday he also tells me that his heart is breaking....I have noticed that I have become more tired this last week. I too wish for my husband back. I miss him so much. When I start having my own pity party, my daughter always tries to lighten the mood.... she offers to bring the streamers and balloons. Every night I pray for a good tomorrow and that God lets me keep him another day.
Must be the weekend for loosing it with our spouse. Yesterday we argued over getting the black water hold tank clean. (remember we live in an RV) I explained over and over how I do it and it works. I won't go on, but it got loud - he just would not listen. I ended by saying your reasoning ability is not working so it doesn't do any good to try and explain it to you. ON top of that he had watch his beloved Bruins hockey game but remembers nothing of it. At least 5 times yesterday and 3 times today he notices on the schedule they played and brings up he missed them. I tell him he watched it, even the overtime and they won. Today I just told him they won. Today it was other things that tried my patience of him forgetting and asking. Sort of like when he called his sister last night and kept repeating the same things over and over to her. At least she would forget too since she is a little further along than him in this disease.
I think this is the hardest part of this disease. I constantly find myself getting upset with DW for doing things that she can not help. You loose it and then you feel guilty for being such a jerk. My suggestion would be to put towels around the toilet and just change out the towels. Or he would just have to wear Depends and just change them.
don`t feel ashamed I lost my temper so many times I lost count, I started to hate my DH and wanted nothing to do with him, I got so tired and depressed, he pooped on the floor next to the toilet , peed his pants all the time until I put him in depends, that is the point I decided he needed more care than I could give him and put him in the NH, then I found my love for him again, we all have our breaking points. Gail
Audrey, I know how you felt. You want to be the perfect caregiver. We all try our best. But you shouldn't feel ashamed, ever!!!!!!! We are human, and we get tired, we have pain, and we say things we regret. REMEMBER, they will forget it in 5 minutes or less, so DON'T feel guilty!!!
Someone said that they put old towels around the toilet so that they could throw them in the washing macine with bleach and not have to mop the floor all the time. I personally keep Clorox Wipes on the back of the toilet so that I can wipe the toilet down after he goes.
Jules, at least he doesn't go outside to go!!! (That is when we added key-only dead-bolt locks!) <grin>
It is the "please lift your leg" (So that I can take off/put on dirty/clean Depends and slacks) that drives me over the hill. (I'm bent in half while asking/begging/pleading.) He sometimes will lift the feet and other times, I have to wait for ages for him to do so!! And Heaven help me if he gets hold of the towel rack!!!!! No child ever held on to a sucker so tightly! <grin>
Y'all sure know how to make me feel better! I did reason that he probably wouldn't remember what I said, the tone of voice...and this morning we're both better.
I did get a laugh out of the dryer...just hoping that is not in the future.
Thank you again for helping me. I appreciate each of you.
Mary, I put a pair of those scissors with the blunt end in the bathroom and I grab those and cut the sides on the depends to quickly take them before he can make more of a mess. Doesn't work with the pants but at least the biggest share of the mess can be dealt with in a hurry. I'm going to look at those door handles for kids that you have to squeeze to open. I don't know if that will work but it's worth a try before I put a latch on the door up high.
Audery, Please..be kinder to yourself. We all have these days. My halo could use some brasso these days too. DH has missed the mark to but not too often yet. My issue is that he looks like he lives under a bridge some days. I have a fuss to get him to change his clothes. Even if I put out new ones for the morning or after his shower he gets out the dirty ones and tell me they aren't dirty. They don't look dirty..just he has worn the same slacks for days...and shaving? no..and I notice this man who was always so particular about flossing doesn't..So I pop off the other day...and like you, he gives me sort of a look of an innocent child..as if to say "what did I do wrong"..we cannot win with this disease. Sooner or later it wins and takes all the chips.
I have found myself thinking a lot about how things were when we first moved into our house that we built..how we would be up early, dressed and ready to take on the day. The air was fresh and I would be out for my hike or pruning dead roses or pulling a few weeds before the winds got too strong..he would be out there fixing something or other, running errands etc..all that is gone but for the memories of my nice orderly house. So today I made a list of things I want to start to do in June after I return from Iceland ( if we go I hear islandmountainglacier...that is the English translation for that volcano) is acting up again...) to try to get some of that old feeling back..don't know if it will work but gonna try. Maybe I'll feel better about myself too.
???? for the piddle issues, we have tile and grout...when my dad was here, he missed the target and we had to replace the tiles and grout..what a mess. Anyone have suggestions for how to get around that? I need to know this one ahead of time as both our bathrooms are tiled.. Thanks.
Zibby, When my mom started this habit, I took her dressy things out of the closet and left the normal daily duds. Same for the undies. As a matter of fact it got to the point I kept a suitcase of clean clothes in the trunk of my car so I would have something decent to put her in since during the night things disappeared to who knows where.
Good one Charlotte, velcro all down the sides. I think once is all it would work for me as then I would not be able to keep the pants on him at all. Mimi, what's this about replacing the tile? If it gets peed on, does it smell bad and you can't get it out?
Mimi, great idea! I moved his winter clothes to another closet, but if I move (or put in a tote in the basement) everything except a few clothes, that might help. This evening he came to me holding a long-sleeved white shirt on a hanger, reaching out to me like he wanted me to take it. "What do you want me to do with it"? "I don't know everything's so mixed up in here, I don't know what I should do with it." I suggested he hang it in the closet; he did. What he was wearing: dress shoes and socks, chino slacks, 4 printed or colored tee shirts (not underwear type), a long-sleeved casual shirt, his terry bathrobe, a baseball cap and gloves. Ok; whatever he wants to wear--except when we go out in public. Even then if it's not too outlandish, it's okay. After all, he is 5 yrs old.
Charlotte, Your suggestion gave me an idea..get lots of that bubble wrap at Office Max and wrap that around the floor..then when he walks into the toilet he can hear the snap crackle pop to tell him he is on target..aim and shoot. Towels will be a must..was just going to toss out a bunch of oldies that are getting a little seedy on the edges...rethinking that now. Thanks
Jules..the tile in the guest bath had to be redone because my dad made such a mess around the toilet and surrounding area that in trying to clean white grout( yes white oh groan) we tried to chisel it out and replace that grout but some of the tiles got chipped so we took it all out and redid the bathroom floor. It is on concrete slab to start with.
Zibby, Your description of your DH's suit made me smile.. My mom did that too...one Sunday she came out wearing a solid color dress with long sleeves and a sleeveless dress over that. At least she got colors that worked together ok. She had on her open toed shoes with bobby sox ( Christmas ones at that in the summer) and off 5 o'clock Mass we went! Her worst dress up effort was when she put on a sweat suit and was going to wear hose under it. But she put on one set of pantyhose on one foot and another set on the other with the legs trailing behind here out from under the pant leg. All that was missing were the old tin cans tied to those loose footies and a Just married sign on her butt as walked by. Alrighty then..
All you new ones start now to teach your spouses to sit down when going to the bathroom. My Dh started sitting down years ago when we were with a group of friends who had had a drink to many started discussing bathroom issues. Like who wore underwear and who didn"t and one brave male said he always sat down to pee. After that night mine decided it was a good idea. I really appreciate that conversation now. A lot of good conversation happened around my neighbor's table and it wasn't always R rated.
I sometimes wonder if we had installed a URINAL in the bathroom, which is a bit higher, if their aim would be any better. No toilet seat to deal with. OR, second thought, was to just install a DRAIN in the toilet floor where the toilet used to be, and have a water sprayer similar to the ones in hospitals (next to the toilet for rinsing out the bed pans). they could pee on the floor...and I'd just pour a cup of bleach on the floor and rinse it with a hose.
I know..that's totally impractical. I got the idea when I saw a woman on TV who trained her dog to pee in the shower stall when she was away at work during the day.
Not the same as a toilet, but my son teaches in South Korea and a lot of their bathrooms don't have tubs or shower stalls. His bathroom is at a different level than the rest of the apartment and there is a drain in the floor and a shower head on the wall. The whole room becomes the shower. He did say it is easy to keep clean.
One of our friends has four boys. One of the bathrooms has a urinal. I have thought about having one installed but wonder would that cause more confusion at this stage? DD suggested have him pee in the shower but that might result in doing everything in the shower!! I think the towel solution would be the best. Thanks for that suggestion.
Also, the subject of clothes and dressing made me wonder about something....the neuro asked did DH have problems dressing. He said "no." Well, that is true, I actually dress him except for his underwear and his socks. These two things he can do. I help him get his shirt on and if the buttons are fairly large, he can do those, He has trouble getting his pants on but can zip and button them. There are many things he doesn't have trouble with but the dressing problems started early...is this normal (OK, that was the wrong question!) Does this usually happen early or late in this disease? Does it have anything to do with exactly what variant of the disease it might be? I know DH could not go to the closet and get clothes out and get them on. He has not done that in a very long time. Just wondering....
Urinals are no guarantee. Anyone who has worked cleaning bathrooms will tell you boys/men miss the urinal just like toilets. The pee will go up the wall too, not just on the floor around them. Conclusion: nothing is foolproof.
The dressing question..DH can and does dress himself in the same dirty clothes day after day..Says they are not dirty..well he has not done anything to get them dirty other than wear them for a week. I can tell how often he does not change his underware...if I have a6 sets in the wash I am lucky if he has 3. I put out clean clothes but NOPE not gonna change..nope..t shirt is enough.While he is overall docile, these are areas of discussion and I don't win..makes me sick that he sometimes looks like he should live under a bridge. He will bother if we have a doctor appt. Otherwise..and at first I thought it was just that he was so short of breath that it was too much effort..but since he has been on an inhaler he does so much better and seems more alert in some ways...but the clothes issue... I know..just wait until he starts wetting the bed...
Mimi, if he is at home and changes before leaving the house, let him wear them all week....some have spouses who sleep in their shoes for weeks or months. It isn't the way we want it, but you have to chose your battles, and other than the fact that you have to look at him, it isn't hurting anything for him to wear the same clothes.
The trick is if you can get him in the shower, then run with the clothes and throw them in the washer. <grin>
Yes, Divvi has tales of her spouse hanging onto his clothes for dear life. And I also remember when I first came on this board, there was someone who talked about always liking to have her spouse look spiffy since he'd always been such a careful dresser. That went by the boards! Look at it as a time to just relax and pick your battles.
you just have to be patient and wait for a just time to swap the clothes when they are out of them. take them away to the laundry and out of sight and leave something similiar to what they had on ie maybe a same color teeshirt/jeans. if they want to wear the same thing buy something that is almost identical and it may work while you wash the others. dont try to change colors and or styles. just go with the flow. yep my sweet DH STILL late stage 7 is still white knuckled over the top of the pants and depends. ha. this he has not forgotten. hold on for dear life! we literally have to pry them off. today he got my hand in between and it squeezed my wedding band so hard my finger was bleeding! wow what a grip- i think it gets stronger even though they are losing everything else. divvi
My husband also has the strength of 3 men when it comes to changing him. He is a late 6, early 7. Normally, takes at least 3 people to change him at the ALF, 2 holding his arms & 1 changing.
I don't think you should feel bad about getting upset with your DH either. It is very hard being a caregiver, it is probably one of the hardest things we will ever do. I hate it when I get upset at my DH too. I actually think that it is kind of a pressure release for us. I think as long as we are not physically abusive when we get upset we should give ourselves permission to be human. If you didn't get upset with him I would think that there was something wrong. It is actually very stressful to not express the way you feel. I am not a phyciatrist but we need some kind of outlet don't we? Go outside and scream(make sure you don't do it where it can scare him). I will gladly join the pitty party, I had one of those kind of days yesterday. Don't worry about not being good company because the people at your party will totally understand.
A member of my support group says that sometimes she pours herself a tall glass of wine, goes into her garage, gets into her car ... and just screams!! She doesn't leave the garage to go anywhere ... she just sits in her car, drinks her wine, and screams!! Hey ... each one of us needs that 'me time' that Joan mentioned in another thread, each of us 'loses it' sometimes no matter how much patience we have, and each of us should have no need to make apologies for being human and able to tolerate just so much before that rubber band snaps. After apologizing, I sometimes spend my 'me time' crying, sometimes just calming down, sometimes escaping into a 'different world' on the computer or TV or whatever. As with each decline ... which for my wife seems to be roughly every 4 months ... when we find ourselves dealing with a 'new normal' each day from then on, never returning to where she was ... 'it is what it is' and my occasionally getting frustrated or upset with my wife, for whatever reason, is part of that 'it is what it is.'