Every morning my DW is up going to the bathroom. Usually early on I would check and sure enough she went so I helped her flush and go back to bed. No accidents in bed yet. Lately she's been flushing repeatedly and I get up and put her back to bed shutting the door which I left open to help her find the bathroom. She often gets herself dressed now and is in there playing with things (I now know where all the toilet paper that's been disappearing lately goes- duh!). It's been hard to get enough sleep and this morning I didn't hear her because I've become lulled into a false sense of security. I heard something odd though and bounced out of bed. The bathroom was an inch deep in water. The whole new roll of toilet paper was gone and it's now obvious she just sticks more and more toilet paper down and flushes. I may have gotten away with this one. I can't see water damage below yet but obviously this isn't going to work anymore.
I can think of several things.
1. Disconnect the wire that connects to the handle so you can't flush and connect it when I get up. It means she can go once and can't get anything down the toilet. She has often gone twice in the morning.
2. Put a limited amount of toilet paper in the bathroom. When it's used up it's done. Maybe 20 sheets.
3. Leave my door open so I hear her. (This one's happening)
4. Lock her in her room and put depends on her. Go and buy the plastic sheets I've been avoiding. This is coming somewhere. If I don't lock the door the depends are useless - in fact she may try to flush them down too.
I know I'm headed towards number 4 anyways. But I have to try and keep this going as long as I can. She knows she screwed up but she can't help it and will do it again.
Does anyone have a solution that worked for a while? And while we're at it she's 5'5" and about 135 lbs without wide hips. I'm up in canada but we get pretty much the same products usually. What diapers do I get her? It's long time to have them in the house.
Everybody is telling me to register for the LTC facility waiting list which is bound to be close to a year because they're worried about me. She's not even incontinent yet. I'm not living knowing I put her away without being brought to my knees. I'm not giving this kid up until I know I went to the mats for her and she still has some echo of knowing what's going on.
Man, do I have a set of pipes. Even the cats don't budge anymore. They know I perform some strange loud ritual at times now and just sleep right through it. I need to budget more for house repairs afterwards.
I'll start searching for a diaper thread. Any ideas?
This suggestion might sound strange, but forget about toilet paper. Take it out of the bathroom. If she just pees it can't be that bad without using toilet paper and just check her when she poops...even then you can clean her up later. I think it might be better then depends if that is a problem. Really isn't it the same thing??
I don't know what it is about paper that seems to be a problem. My dh had 8 paper towels all folded in neat little squares and stacked up on the coffee table. Who knows why...not me.
Wolf, a couple of years ago, several of us had this problem as well. There is something about running water (flushing the toilet, or just leaving the water running in the sink, or starting the dishwasher) that seems to attract/soothe them!!! And toilet paper - they sometimes use a whole roll, sometimes they tear off one sheet and fold it, then do another - until they have 10 or 15 tiny squares of folded toilet paper! My husband used to tear the empty roll off the roller and tear it to pieces and flush IT down the toilet!
When he was in Depends and still went to the bathroom, he tried to flush THEM down the toilet too! However, they absorb all of the water and are then too big to go down the drain, thank goodness!
Our solution was to turn off the water supply (behind the toilet bowl) and only turn it on when we went to the bathroom or our spouses were occupied elsewhere so we could flush it and turn it back off again. This stage only lasts a few months. Not even a year. Then they will go on to something else - and you will have to find the right solution for that problem! <grin> (If it is too full of TP, then buy a pair of long tongs to use with a plastic waste basket.)
Life is in a constant change when dealing with an AD spouse!!
Wolf, I cannot address the toilet issues (I am much earlier in the process with my DH), but I would like to express my concern about your determination to be brought to your knees caring for your DW.
I have been with my DH for 30 years. We are not just spouses; we are each other’s best friends.
If we were in your situation, I would not want my husband determined to let my disease take him, too. I would not want my husband thinking that he must diaper me to demonstrate the depth of his love. I would rather he be determined to find the best possible facility, with a loving environment, and skilled workers who could provide me with the 24 hour care I needed. I would rather that he be capable of visiting me refreshed and well rested, so that our time together was quality time. I would rather know that after I am gone, that there is enough left of him to enjoy the rest of his days here with our children and grandchildren. I would be heartbroken if my disease destroyed him.
My heart goes out to you – this sucks! But don’t forget the old adage of putting on your own oxygen mask before helping others. If you self destruct, you won’t be of any use to your DW.
wolf i think every one of the posts had something of value for you. solutions to the immediate problem is a good idea to turn off the water at the toilet like mary suggests. i did this as well. putting her in depends now is another good choice. plastic on the beds is a must if she is having problems toileting and cleaning herself. a more vigil time consuming issue for the caregiver also comes with them in depends but as you can see almost all of us come to this point like it or not. denial is one of the steps. :) also i think mary 22033 has a valid point, not getting to the point of despair is imperative and sounds from your posts you are close to the breaking point and not getting alot of rest. having a refreshed outlook after placement isnt the worse and will give you time to recoup and become her advocate and caring husband that we know you are again. your DW wouldnt want you to go the full gambit if its causing your own health to deteriorate physically and mentally. lots of decisionmaking and we all know how hard any of it can be. good luck. you will be able to decide whats best for her and you.. divvi
Just a plumbing caution. I've had plumbers tell of shut off valves that are made of plastic and intended only to be used in emergency. They won't hold up for daily on and off use. If planning on turning the water off and on be sure you have valves that are meant to do so.
This really rings a bell for me. There was a mystery leak in our basement bathroom. I had my maintenance man and two plumbers check it out with no answer. We were ready to open up walls to find it..then..BINGO...G kept pluggin up the toilet and having it over flow without telling me..guess where it was going? For some reason it went between the slats in the hardwood floor and headed down. The poor floor is like a sieve now, but at least I can fix tht. I now use only t-paper that is made for RV's or boat bathrooms (head?) It just melts in the water....not great for heavy duty use, but we can manage that...and I check on him everytime he heads that direction.
Regarding registering for LTC facilities that take up to a year to get in.... DO IT...and when they call you a year from now, you can always ask to have them 'skip' you for the time being, and let the one under you in. A YEAR is a long long time with Alzheimers...and a year from now, you may have no other choice.
We have all had bathroom floods. What a mess. I understand your frustration.
Why do people think they have to wait until they are incontinent before putting them in a facility? That was one of the last things to go with my FIL. He was in there for his safety. Other reasons are they are just too much to handle, they need the additional care (24/7), etc. They do not have to be incontinent to find a safer, better place for them.
I do not believe Wolfe meant the Nursing Home required they be incontinent, he just commented that she wasn't incontinent at this time...and to him, that was a sign to him that the disease hadn't gotten as bad as it could be. Let me say this again, my husband was diagnosed the last time as being in the "Profound-Severe Stage" by his doctor who didn't go by the Fisher Stages. He was not Incontinent - with a few exceptions at night. He knew when he needed to go and we'd hurry to get him there, and sometimes there was a 'leak'...or spot. He couldn't speak well, couldn't read or write, had to use a walker or wheelchair, and when he ate, he had to have finger foods because he couldn't eat with a fork or spoon. Yet, he didn't wear diapers. Every one is different. I still suggest he "get on the list". A year from now, if she was in need of constant care, it would be terrible,..waiting another year to get in.
Wolf, my situation with Jim was unique in that he had FTD w/Motor Neuron Variant. Thus he had much of his mental capacity right up till the end. He began worrying about MY wellbeing very early on. Knowing that I have a very bad back and him being 6'4", he was so afraid of me injuring myself caring for him. When he lost the ability to walk he insisted on being placed. Even with his reasoning button being somewhat broken, and he still could carry on somewhat of a conversation, knew us all, although his short term memory was quite lacking. So against my desire to keep him home he was placed for 5 months. He always got what he described as a "feeling of dread" when he was about to decline again. He knew he was going to die and asked to come home. I gladly brought him home the First of Februrary and he died at the Hospice house March 7th, one day after we arrived. He had 90 minutes of complete and total lucid conversation with me around noon that day. The dr had just told us that he thought Jim had 1-2 weeks to live. We were able to say everything that we need/wanted to in that time. He even dictated letters to me for our two little grandsons. So I guess, my point here is that your dear sweet wife would not want you "brought to your knees" caring for her. I enjoyed my daily visits with Jim in the NH. I often had lunch and/or dinner with him. I took him our for walks in his wheelchair and for rides in the car. I brought him home for Thanksgiving and Christmas. Just because you place her does not mean you are giving up or giving in. You are simply doing what needs to be done. You MUST take care of yourself, she needs you to be well so that you can be with her. You will cherish the time you spend with her, you will feel better, and stay healthier. Sorry if I got off topic here, but I care. Arms around, Susan*
Thanks for the advice everyone. I'm going to take everything out of the bathroom including the tissue box and leave some 10 sheets on the counter. I'm also going to leave my door open again (sigh).
I need to get my head around placement. As NancyB said it's not really about incontinence. It's what shape the spouse and the caregiver are in. While she doesn't function much at all - there is still a considerable amount of 'her' in there which comes out in bits and pieces all day long. I've actually already been on my knees. The metaphor was a bit dramatic; but, I don't believe most get down the road very far without moments like that.
I'm lucky I have the option to place her and in the end it's going to have to be a balance between her needs and mine. This is truly a hard step which I simply have to face.
I vote for the disconnecting the toilet wire so it can't flush when you are asleep or for some other reason not able to keep an eye on her for a long period of time. I have not come to that problem yet but I think we are getting close because my DH tears the rolls off and he uses a lot of paper towels (more than needed) for whatever reason(not for the bathroom though) Depends might be a good idea also but I think I would try the disconnecting the toilet first.
All the advice above is good. On a lighter note though, be glad it was just paper. My DH dumped an almost full jar of whole dill pickles down "because they were going bad". You know how they are PACKED in the jar? Feature that about 12' down the pipe. Nothing moves, except to fill up and go over. Using a home snake doesn't work because they're too far down, and plungering only effects a temporary shift from pressure. He'd thnk it was fixed; use facilities and we'd be mopping again. Plumber time.
New rule here--Nothing goes down except the normal deposits. Now he even breaks those up--another story.
Wolf, please do not let your wife's illness "bring you to your knees". You can't help her nearly as well on your knees as you can on your feet. I'm not much help with the toilet issue. My husband was afraid of the toilet and wouldn't go near it so I didn't have that problem. I just want to tell you that placement in a good facility is wonderful. When my husband passed away just 3 weeks ago I sent his caregivers a thank you note. I would like to quote a little of it to you. "You cared for him as I would have cared for him myself, only better. With your younger bodies and stronger backs, you did for him what I could not. The only thing you could not do for him better than I could was love him" Let me tell you that someone doing the heavy work left me free to shower him with love and caring and our last year and a half together was much better than it would have been if I had been killing myself trying to take care of him at home.
Wolf, TP is not the only thing they will put down the toilet. My DH put my partial in there. We have resorted to child locks on the bathroom drawers and other childproofing gadgets. Wonder what the thing is with folding TP? My DH uses a roll a day..... Mostly just to fold and stash around the house or give to people "in case they need it." I've moved the garbage away from the toilet to cut down on some of the plumbing problems. Our water bill is atrocious because my DH runs water in the sink constantly and then takes one of his TP bundles and wipes it out and then runs water again...over and over!
My whole experience here has been a lot like what happened to the woolly mammoth. One day you're walking around pretty much where you want eating elderberry bushes and the next all these two legged creatures are running around throwing pointed sticks into you - which when you think about it must have been quite a shock.
Which is pretty much what happened to me.
One day we're at l'elegant bistro something eating the shrubbery with raspberry vinagrette and the next she's feeding reams of paper into the toilet wearing panties on her head with one eyelid painted black and half her hair jelled blue. It's quite a shock waking up at 4 in the morning realizing your standing in water watching the space alien inhabiting your spouse's body creating a fountain. I may sleep in the bathtub tonight. It's the only way to be sure.
My state of mind is peachy thank you for asking. I just heard something a few minutes ago and there she was after I had put her to bed - standing in the bathroom. Preparing.
The only real problem with duct taping her into the bed is getting it off. I was thinking of a stretch body stocking with no arms. I could put her on a dolly and wheel her into the appropriate room. Or for a bit of levity I could hand her a grouch marx mask instead of her glasses and see if she notices. And get her a tee shirt that says "I am not a space alien". I could take her with me like that when I see the counsellor. It would save a lot of time.
....
No spouse was harmed in the making of this bit. It's a hard road there's no denying.
Oh, dear Wolfe, good luck to you. Sounds like you need it. What vivid pictures you paint!
Susan L., ehamilton and others, your experiences are exactly the reason I have put my dh up for placement. I definitely do not want to be brought to my knees. Incontinence is not really the issue, but certainly adds to it together with difficulty bathing. I just think it's the right time, and I'm ready to be the loving spouse rather than the crabby caregiver for however much times this still lasts.
Jeanette, do not expect to calm down totally after he's placed. Today is 3 months into placement and I'm just now beginning to breathe easy. I do believe he has finally adjusted to his life there. Today I went over to visit and found him joining in for a sing-along. I was pleasantly shocked. We had such a loving, pleasant visit and there were no more constant questions about leaving, buying a car and moving back to Illinois. I guess modern meds and an appropriate setting really are miracles. And tomorrow I'm off on a week-long vacation by myself, away from all the madness of the last six months. I leave with a light heart and no guilt because I realize that I was absolutely at the end of my rope, both physically and emotionally.
Enjoy your trip PrisR. Thanks everybody. I have to face this and realize it has a chance of being the right thing for my DW too. The truth I have to face is that even though the work isn't that hard I am ignoring that I am emotionally running out of gas.
for the first time this week, I have seriously been thinking of placement. My DH has begun "sundowning". I guess that's what it is. Around dinner time and until bed, he becomes unbearable. Nasty, mean, just all around awful. tonite I tried giving him an extra Resperdol before dinner, and it actually kept him calm. but I so appreciate all you have said about placement. tonight I actually went so far as to say, out loud, if you don't start behaving you're going to be placed in a nursing home.... Maybe it was my saying that which got him straight, and not the pill.
Wolf - putting her name on the list is a wise move. Remember if her name comes up and she or you are not ready , you can ask to be passed over and let #2 have the space. But, getting on the list is a start.
chris r--I have used almost the same line with my husband when he won't shower. I don't say nursing home, but rather that he will have to go live somewhere else. Last night, he told me "OK, you go." Then I repeated that he would be the one to go, and he agreed to shower. If this continues, I may have to give extra med before attempting the shower, as you did.
I never ask him if he wants a shower. I get things ready and tell him the shower he ask for is ready. It is really hard for me to get him in and bathe him. I have found letting him hold the shower head helps him to feel like he is helping and it makes it easier for me. I also use a lot of hand towels because they seem to help in the drying process and he has one to use also. Showers are about every 7 to 10 days. we do sponge baths every morning using the Comfort complete care washcloths that I buy at Walmart or the drug store. They are ultra-thick and no rinsing is required. I buy the box rather than the packages and that equals 32 washcloths. Of course, I always have baby wipes. No bathroom is complete without them.