I hope you all had a good, or at least tolerable Mother's Day. DH has been going through an especially rough patch lately. I wonder if he's entering a new stage. There seem to be some toileting issues starting, but nothing major. Still, I had to help him clean himself the other night and it was one of those times when I thought I just can't do this. Sometimes, I feel like I just hit a wall and can't fathom moving forward with things the way they are.
Anyways, DH was so agitated the last day or 2. Yesterday, he was searching through the garage, which is a horrendous mess. It's hard to get at anything, and I just can't find the time or energy to clean it out right now. I asked him what he was looking for and he said his sword. (a Masonic sword he's had for years) I immediately reacted by telling him he doesn't need his sword right now, he's making the garage more of a mess, etc. Of course, he got mad, started saying he can't take it anymore. I don't know why I got so freaked out, maybe because this need to find his sword came so out of the blue. I feel bad now for reacting that way, not being more sensitive.
He also decided a few days ago that he wants to take his framed poster from Austria to his day program. I don't know why, maybe for a sort of "show and tell". I told him I wasn't sure if he could take it on the handicapped van he rides to get there. Of course, he got irritated again. Then I tried to start the gas grill for the 1st time and struggled with it. DH couldn't really help and I got so frustrated and angry, because I had bought food and didn't want everything to go to waste. I wanted to grill and eat outside with the kids. DH was always the "master griller". Finally, I got it started. DH then took over and cooked the food. I felt guilty for pitching such a fit over it all.
It seems like he's trying to reach out to his past maybe, to try to stay in touch with himself and who he was. It's awful to see him struggling like this. I think sometimes it would almost be better for him if he were more out of it. Right now, he's at a stage where he can do very little, and he's aware enough to realize it. The communication thing is so hard too. He has things to say, but can't find the words to get it out. He's so desparate lately. He keeps saying he's leaving, he can't take it anymore. And the other day, he said he wanted to kill himself. I know he didn't mean it, but it was still so distressing to see him like that. Maybe I should fill the antidepressant prescription the neurologist gave us.
Thanks for reading my vent. I feel like a terrible caregiver today. I just don't have enough patience. I'm probably the worst person in the world to take care of him.
I am so sorry that you had a bad day. Don't be to hard on yourself. This caregiving isn't easy. We just have to do the best that we can do. My husband has been going through the same thing and it's so hard for me to stand by and watch when he is having bad days. I feel so bad for him.
Thanks for the support. Actually, all in all, it was a good day, as the kids behaved pretty well and we had "quality time" together. But it is hard, you're right. I just hope it's not a sign that things are sliding downhill again.
Kelly I also find myself frequently wondering if we are into a new phase, then things seem to go back to the "new normal". Some days are certainly much worse than others and I think that's just the way it is with this disease. We never know from one day to the next what to expect and that makes it very hard for the caregiver. I can relate to a lot of what you have been experiencing lately. My husband told me if I'm fed up with him I can go and live with my mother. I guess I had been especially short-tempered and he needed re-assurance I would still be there for him. Hope things will brighten up for you again. Inge
I've been reading the messages on this website for a couple of months now and it has really been helping. I completely agree that a spouse is a whole different thing---my father has Lewy Bodies dementia and the impact on me is nothing like the fact that my husband has Alzheimer's Disease--only diagnosed less than 3 years ago but is already about stage 5, I think. The comments by kelly5000 were the ones that inspired me to sign on and start to comment myself. We took a trip back to where we used to live and it's been tough. I'm hoping that it's a temporary new stage and he'll be better when we return to Florida. My husband didn't recognize who I was, regressed in ability, and had toilet trouble. That's been haunting me...at what point is it incontinence? He's been having more accidents (no family bathrooms where we stopped on 95) and I'm not sure if he doesn't know in time, or just can't get undressed in time...But I've had to help him with clothes so he can go to the bathroom for the last couple of weeks. Since we've been up north, he's had several accidents and doesn't really seem to be ashamed or realize what he's done. And I'm so freaked out that I make it worse by getting upset. It's just that it will stop us from being able to go places if he can't go to the bathroom by himself.
If anyone has similar concerns, I'd love to hear what you're going through.
FLgirl. That is not stage 5. Bathroom issues are stage 6. Go to the Alzheimer's Association site and look at the 7 stages of Alzheimer's.
It is possible that the trip got him disoriented and that he was worse because of the travelling than he would have been at home. It is also possible that he will calm down and go back to stage 5 behaviour. I've experienced the disorientation followed by a more calm situation. It is also possible that he has arrived as a new stage in the disease.
I just checked it out and I guess you're right...he definitely has some of the characteristics of stage 6, although not as severe as some of them. He has gotten better in some ways. But he's still doing a lot of aimless wandering around the house, moving things, examining papers, etc. He does manage to perk up when he sees someone else however and has quite an appropriate sense of humor at times. But his expressive and receptive language continue to decline dramatically.
We're only going to be up north another week and then I'm driving us back to Florida. I guess I'll wait and see how he is when we get back home.
I too experienced the same problem with toileting about 2 years ago. He would be walking outside and not even come back in the house when he had to go to the restroom. Then of course, I would have a big mess to clean up. I would have to totally undress him and clean him up. There were also times he would be in the house and could not find the restroom. I just started to take him in there approx. every 2 hours or so, just in case. Yes, our lifestyle changed dramatically as we could no longer just go out to eat wherever. I had to pick restaurants that I knew had a Family Restroom, so, I could go in with him. There were also several times when we were traveling, he went into the restroom and came out like he was in a daze. He had no idea why I sent him in there or what to do. Most places on the highways do not have Family Restrooms, so, there were several times, I had to take him into the Womens Restroom and luckily our daughter was traveling with us and just explained the situation to the ladies that came up. They were very patient, but, it still was very stressful. I know that my husband is in Stage 6 and has been for a few years now. I do believe that they forget how to go to the restroom. Unfortunately, for all of us, it is just the progression of this disease. I had to be very careful how I approached my husband on this issue, because if he started to get aggitated, he would just try to open the door and leave the restroom, with or without clothes, no matter where we were, etc. I really got to a point where I no longer wanted to go out anywhere because I never knew what challenges I would be met with and how he would react. Luckily, my DH was never verbally abusive and the last couple of years, he doesn't really talk much anymore. Maybe a word or two every now and then. So communication between us was very difficult. I was always guessing what he might need at the time.
Unfortunately, last year, I had to put my husband in a NH. He is totally incontinent, cannot feed himself, and is in a wheelchair, etc. He is now needing total assistance for everything. Believe it or not, even though he is in a NH, he is smiling most of the time, and is in the part of the disease where I am not sure if he even knows where he is. I know he is always happy to see me and we see each other 4-5 hours a day. Tonight, we watched the sunset and I took him for a stroll around the grounds. Then we just sat outside and held hands. Of course, our marriage is not the same as it was before AD reared it's ugly head, but, at this point, I just take it one day at a time and am just thankful he still remembers me and wants to pat my face and hold my hand. When I say he still remembers me, there are times he might not really know who I am, but, just knows that I hug and kiss him all the time and give him back rubs. Who knows with this terrible disease. I will love him no matter if he knows me or not, as I still know who he is.
Thanks, it helps to hear someone else's struggles with this aspect. My husband, too, has never been nasty to me. If he gets frustrated and snaps at me, he always apologizes. He always was a really easygoing guy and I hope that part of his personality remains.
I guess I haven't really wanted to deal with the whole bathroom things even though I put a waterproof pad on the bed and bought some Depends (didn't use them yet, but just in case). The hardest part is getting clothes on and off him. When I just had to dress him in the morning (he can't even get his socks on by himself anymore), at least it was done. Even though my husband is not a big man, I'm a little over 100 lbs. and have a heck of a time maneuvering him around, getting the pants up and down, etc. And meanwhile, he's grabbing onto me for support because his balance and coordination are very badly affected. He can hardly do stairs without help. And I keep snapping at him like he can help it. How do you keep an even manner when everything is a struggle and your husband is like a 3 year old? I have such difficulty remembering the man I married. And he continues to try and make me feel better some of the time...it's just so pitiful.
I have been in the bathroom issues for sometime now. when out and no family restroom i just go in to the ladies room and hope nobody comes in if they do i explain my husband has AD and there is no place else to take him. usually they are understanding. i have even taken him into dept dressing rooms with me:) getting the hang of changing their clothing and depends takes time and each of you will find the best way to approach it with trial/error. toileting issues is definately the hardest part in my book but after a while of doing it you become rather callused and it becomes routine-divvi
I asked this question under another subject but I am hoping someone might help me with a tip on how to handle it. My husband sometimes refuses to sit down so getting him to sit on the toilet can be so frustrating. I bought an ADA toilet this weekend which is higher than a normal toilet thinking that might help but hasn't made a big difference. The toilet issue is the biggest challenge when we want to leave the house. We live in a rural area so there are very, very few family restrooms so unless my son is with me, it's almost impossible to take him anywhere. Does anyone else have this problem?
My husband appears to have many physical manifestations in addition to the mental difficulties. His balance, coordination, and spatial awareness are very impaired. He actually presents as someone who has had a stroke although the neurologist has done a PET scan, genotype testing, etc. and says that it just depends on where the disease attacks the brain. So...everything involving the toilet is a challenge. He, also, has great trouble sitting down on a toilet. Even after I tell him to look behind him or reassure him that the toilet is back there, he hesitates, moves away, etc. I am not strong enough to lift him or really hold him up; his sons are able to get him on better, but we will be going back down south in a week so it'll be up to me. It does seem that if I give him enough time, he can sometimes get on the seat on his own, but I think his mind and body are simply not able to work together. He has the same difficulty sitting on the couch at home or trying to sit on a dining room chair. When we go to restaurants, we can become quite a spectacle as I try to guide him into a chair and he heads towards another chair or stands woodenly by the chair unable to sit in it. It almost makes me not want to go out to eat, but I am trying to stick with it since I know that soon we will not be able to.
I was wondering about some type of portable urinal that we could use when traveling that would be easier than public bathrooms. Has anyone had success with anything?
My DH also has difficulty sitting on the toilet but i find holding both his forearms to guide him onto it helps. i think he is afraid of falling and feels easier with the 'stabilizing' with holding on. i also have one of the higher portable potty but he refused that -the one that helped most is the one that sits over your reg toilet seat to raise it about 6in. -can find these online at medical supplies stores. also i installed the additional handle bars at each bathroom so he can pull up on it and its helped as well get him off the seat and feel secure. i got mine at lowes and had it installed with no issues. i think to remember that AD victims also dont seem to see very well early on vision and spatial is afflicted to this may be part of it too. most hospitals give you free small portable urinals if you ask and i have one under my seat just in case but hes at the stage he doesnt use it as well as the reg bathroom. wishing you all the best, its so difficullt to find the right solutions to all this. Divvi
Thanks...the seat that would raise the toilet might be a lot of help and I'm going to look into handle bars. I appreciate the input from someone who has gone through it!
When I got home from work tonight I found out that my DH had messed the whole bathroom as he refused to sit on the toilet again. My adult son was home with him and could not convince him to sit. We had tried the portable toilet seat before and he refused to sit on it so I ordered a portable bedside commode over the internet and we're going to try and place it over the toilet and see if that helps. It will have handles so hopefully, that will help. If it doesn't, our only alternative will be Depends and really hoping we don't have to go there yet. It's hard enough dealing with the messes myself but it's so hard on the kids to see their Dad like this. Tomorrow I'm having company from out of town and they don't know how far my DH has progressed. It's going to be a stressful weekend trying to keep my DH calm with extra people around. I just hope there aren't any bad bathroom incidents.
The depends pull up underwear is so easy to use and saves on the stress and humiliation. When I had to take them off my DH, if he had had a bowel movement, I just cut them up the sides for easy cleanup. If he would get in the shower it was easier to hose him down, otherwise I cleaned him up when he laid down on the bed. When I started using them, there was so much less stress that I wished I had started using them sooner. Hope this helps.
Joyce, I was glad to see your comments. I've had a feeling that I've been dreading something that would make life easier. Everything we do revolves around finding a bathroom soon enough, being able to go in with him, getting everything into the toilet, etc. Yesterday, we wound up in some disgusting port-a-potty outside a store that I squeezed inside with him...YUK! I'm not sure how he would react to the depends and I'm afraid that I'm rushing him into losing complete control over the bathroom. How many accidents do they have to have before we classify them as incontinent? If I can get him into the bathroom every few hours, it's usually ok, but at night it's getting bad. He wakes up and has to go immediately. Unfortunately, that's when he's really out of it, and I'm trying to push him into the bathroom, can never get him to sit, and I wind up cleaing up the bathroom at 3 in the morning. It's getting so that I find myself dreading bedtime because I'm afraid of these night time episodes.
I started my wife M in Depends one month ago. She was frequently incontinent and is stage 6. Thanks to this forum, I bought a package of Depends. I told her they were her "undies." Since I have to dress and undress her anyway, she stepped right into the Depends without comment and has worn them ever since. Whew! I was so glad that transition went smoothly. Get the "super absorbency" Depends. They will hold several cups of urine without leaking. A remarkable product. Nowdays, I change her Depends at sunrise and bedtime or more if necessary. This solved the bathroom problem when away from home also.
The first time I put a Depends on my LO I just knew it was going to go badly. I was totally prepared for the refusal to put them on, the anger, the struggle, and I was almost shaking. MY LO is quite fiesty!
BUT...we had a bath, and I said, "OK, let's get your underwear on" and just slipped them up. NO PROBLEM!!!! Never missed a beat. I felt like Anne Sullivan, the Miracle Worker.
She's been wearing them ever since, so it turned out to be no big deal. Good luck!! Just act normal. Don't even mention it. They are new underwear, and that's it.
It's weird...it's the same feeling as when the kids went to big kid panties. I remember feeling trepidation for the change, but relief that I wouldn't have to worry about diapers again. Now my relief is that I won't have to clean the bedroom or bathroom floors or bed again!
My experience has been the same as C and Trisinger. My wife was occasionally soiling her panties, taking them off and washing them. I would discover this when I went in the bathroom and found them hanging on the shower rod. Then she had several "accidents" at night requiring getting up to change the bed. I got her Depends and she accepted them quite well. Her biggest complaint was throwing the used one away rather than washing it and re-using. In addition, to avoid night-time problems I wake her up each time I have to get up and encourage her to "go pee". Usually she does this without argument. Last night I could not get her to wake up. This morning I found that she had wet the Depends, but the bed was fine.
It seems that the men with wives having AD are having an easier time getting our LO to wear Depends than the women are with their husbands.
Mine has been in depends for several yrs now, i decided to go ahead and make the transition early on and in the beginning put a depend on then his 'regular' jockey or hanes over that -it appeased his sense that he was still wearing underwear as he knew it. today we use TWO depends a thinner one on top of a super absorbency one and works like a charm =i will advise to change them frequently during the day too if they arent to keen with their hygiene as in my yrs i think letting them in them with drips inbetween can bring on urinary infections. i do mornings/late afternoon then pm changes before bedtime. i do believe its more in OUR minds than theirs about transferring to the depends for convenience sake. it certainly will make it easier to deal with the issues at hand so dont hesitate, divvi