Well, I finally experienced what some of you have been going thru. I woke up during the night and DH was standing there peeing in his shoes and all over the carpet. I admit that I wasn't a happy camper. This morning I had to throw the sneakers in the washer. I had him clean up the carpet. I have a bad back and can't lean over and do that. I know it sounds terrible but today was a day when a nursing home looked pretty good to me. I'm still pretty upset right now. I know I'll get over it by the end of the day but right now I needed to vent and this is the place I come to. It also upsets me that his two kids think he's fine. The daughter will be visiting in Florida the month of July. I'm going to ask her if she'll take him for a couple of days. I'm willing to bet that she won't.
Welcome donelt. Glad to have you aboard. ((((((Hugs))))))))
Carolyn, this has yet to happen to me and I can't tell you how much I am dreading it. Did you change any meds or do you think this is going to be the new norm? 6 years ago when we started on finding meds to control things he had some incontenence issues at nightime. In his case the meds did it.
Carolyn, No good advice here as I have not had to deal with this yet. I am sure others will be along soon to share their hard earned wisdom!! I wish that you could plan for his children to care for him for a few days while they are there and you take a mini vacation. Since he is "fine", why should they object.
Imohr, He sleeps in his briefs. Those weren't wet. He just fired away like he was in the bathroom. No, no new meds. Maybe (probably) he was confused and thought he was in the bathroom. In all fairness to him, I noticed that the nightlight in the bathroom had burned out. I always leave it on all night.
Carolyn, i sympathize with you of course. i think i have found my calling in life, cleaning up poop/pee without going mad:).it surely is a totally different situation dealing with poo/pee patrol in a facility where designs have been made to accomodate such needs. QUITE different when its your own home. .i think those of you who have not had to 'experience' the handson issues yet, wont be too suprised when it happens since we are constantly mentioning it over and over and over:). and hopefully this subject has been brainwashed enough to just get to the issues at hand of cleaning and moving on without going into tantrums. (from experience tantrums only raise your blood pressure and do nothing to solve the issue:)you must remember to help you thru it, they cannot help what they do and have compassion for their situation. i am sorry its happened but it is inevitable i think with this disease. my best, Divvi if it happens again, time for depends :(
Divvi, I'm smiling because I know I can alway count on you . You're absolutely right. It didn't do any good for me to get upset. I'll try to do better next time. :) He still always so concerned about his looks, I guess I just couldn't believe that he did that.
It makes me very relieved you see the point early on. it took me MANY yrs of stress to get where i am on this subject..haha.
your best foot forward and not only will you 'do better' you will make it a point to make him feel good about himself even when it happens again. as you said, his always wanting to look 'good' is his delight, so you must help him make sure that continues. it will make you feel good too. divvi
The main thing you have to realize is that they THINK that they are going in the toilet!!!! AD is sending confusing signals! You must have a nightlight (as you said you did) (in our bedroom the TV is always on for movies for him since he only dozes) and in the bathroom, I keep the shower light on so that he can see the toilet. This has made for fewer clean ups.
Divvi's honest discussion of this topic helped me accept the changes in my husband so much better, and I have made the adjustments that she has been suggesting for some time. I still don't like to have the clean up duty, but accept it as a part of our lives for the time being. I just keep saying "this too shall pass" and know that I won't have to do it for the rest of my life! I bought extra bath mats that have rubber backing and put them as scatter rugs between his side of the bed and the bathroom floor, so it is much easier to pick them up and put them in the washing machine. It is VERY exasperating, but when I start to get upset, I remember my chlldren when they were one year olds with diaherrea and that makes it easier to clean up now!
You have EVERY right to be upset and angry - at the disease. It is SO HARD to realize that he can't help it any more. And harder to accept. My thoughts are with you, dear one!
By all means replace the night lights, maybe put a light on in your room that will illiminate and won't shine in your eyes. Then I would make a big point of showing him the lights and saying now you can find your way to the bathroom, right? Does he remember it? I've found my husband DOES remember some things if I repeat and repeat them; I've also found that once he starts peeing it's almost impossible to stop. He'll yell at it STOP STOP DAMMIT if it starts before he can get his Depends down.. BUt this doesn't happen that often.
awwww briegull. i can relate to your DH.... i yell at 'it' alot too:) divvi
and you are so correct, once its going theres no turning it off! thats why i have small plastic trashcans around the house to catch the overflow if i can! i have led him to the bathroom while hes peeing in the bucket...sigh..divvi
mary! have they worked for you too??? i hope so, i swear any drop i dont have to clean out of the carpets makes my day! haha.. boy do we become inventive or what????????? i swear regular people would think us insane..divvi
folly, thats nothing. peeing on shoes i can handle. i have to get on my knees to dress DH after shower as my lower back is bad and to get him to lift his feet into his pants--well i have been peed on more than once while dressing him in that position, and it wasnt on my shoes. my head usually gets it first.. oh boy, there i go again... nothing absolutely nothing can surprise me anymore:) when my DH was in the kitchen with me yesterday will i made lunch he quietly peed into the doggies water bowl and didnt even make a mess. never quit talking to me the whole time:)i cleaned the bowl and patted the dogs head that watched the whole episode, and went about lunch like nothing...::::))))) divvi
Thanks for all the responses. Some really brought a smile to my face. Briegull, I can just picture your husband hollering at it. Shoes are out drying in the sun. Oh, well, they needed a good cleaning anyway. LOL
I'm not sure I'll be able to handle it. With my bad back, I don't know how I'll get him cleaned up multiple times a day. Please don't take this wrong...............so many of you seem to be doing way more than is physically healthy for you. Aren't you afraid of hurting yourselves. I've not been there yet, but sometime I wonder if some of you are waiting to long to place you beloved spouses. Humor is terrific and all the tips are great, but what about US, should we risk ourselves for a horrific disease that doesn't care about who it hurts as it tornados through our lives. After all we still have to live a life when this is done. I hope you all understand I'm not a heartless jerk, just concerned for everyones well being. Arms around, S
My dh can barely get around now with his spinal stenosis. It may take him off his feet before anything happens with incontenience. If he is off his feet, I cannot handle him. This morning while getting out of bed he did not have his feet positioned right and he slid down to the floor. I used the transport belt to help him but it took 15 minutes to get him positioned on his knees in order to get up. He is weak as a kitten. He has a big issue getting in and out of the car. Just does not have the strength to lift himself with his arms to adjust on the seat. That wouldn't be stenosis - wonder if it is Parkenism or AD or VD.
Dazed - not for long term, like the other good ladies here.
Susan-finances play a big part of placement. Dementia care is usually more expensive than nursing home care. It's ok if you are rich or poor-but heaven help those in the middle.
One big issue for me will be the expense of the NH and I imagine it is a big issue with many others on this site. As long as I can manage by hiring in home help part time the longer my funds will last. I have 2 adult kids who lend a hand and ear and my next step will probally be lining up some more in home help. I already know a Hospice aide who does bathing on the side for $10.00 an hour and I plan to use her when that time comes. Just have to play it by ear. A friend of ours does not have AD but he has been in a private room at a NH for 7 or 8 years. I don't know if he had Insurance but he did have money saved. You can figure up how much money has been paid for NH care.
Susan L, I don't think you're a heartless jerk. But I wonder how committed to this task you are. I have been married 29 years to my husband and bore a child for him and to me, bathroom issues are way back burner. He saw me through a c-section, depression and physical issues I don't want to discuss. I could no more leave his care to strangers than drink poison. If you are smart about this issue, you can get pretty imagineative about handling physical issues. He,s not heavy, he's my husband. My partner in life and death. He would do the same for me, I'm sure of it and that's why I do for him, that's just how it worked out. Good luck in finding your own path, but I find mine in keeping my vows.
Susan L, it doesn't take using my back to clean the floors...or wash clothes. When he gets to where he can't get out of the tub, we'll use the shower stall. We had to for a month last year, but then he improved again. When I am not here, he's always going to the door looking for me. When I am here, he has to be in the room with me, unless I'm on the toilet! His connection to me is still so strong, that unless he turns violent, he'll stay here. For the connection (though he doesn't know my name or that I am his wife) and for financial reasons.
We each know our own physical limitations, and I have my 19 year old grandson living with me as my daytime caregiver while I work. I'm in good health, so I'm doing okay. If you have physical limitations, you can only do what you can do, then you have to turn it over to others. Without guilt, and without remorse. We need to survive this journey. My thoughts and prayers are with you. (((HUGS)))
Everyone will find their own way of course when the time is right and will make that decision for themselves. some may last longer than others caring for their spouses at home, others have their own health issues which will not allow them to care for hardcore care at home. others may find it not so difficult to endure the entire care process inhome til the end with hospice-if i had taken out a long term insurance policy that would allow me to place DH in a wonderful facility paid by insur it may have been different. the committments are only as good as we last emotionally and physically-many changes occur over the short term or long term, so things may change further down the road for each of us. we can only walk in our own shoes and make decisions accordingly. divvi
We all have our own values and are not here to judge others. Too often we have responibilies to others than our spouses. Sometimes that burden is too much.
You are not a heartless jerk. And you have a very valid point - how much of our own health do we risk to care for our spouses? When they had all their faculites, I think they would say that they would not want us to break our backs or destroy our own health to care for them. I have told my husband I will care for him as long as I am physically able, but statistics show that spousal caregivers in particular, usually wait at least a year too long to place their husbands/wives.We all try our best to give them the care they would give us, but we all have our breaking points, and I don't think the breaking point should be after we are physically broken ourselves. Divvi is right - "we can only walk in our own shoes and make decisions accordingly."
Agreed, Joan. There are certain lines I cannot cross, physically and mentally: violence (unlikely), physical disability when I can't get him up in any way if he falls, etc. But we've been married 53 years. We don't have LTC - that might change things but I doubt it. We've raised 3 kids who made more messes and caused more worries than he ever has, to be honest about it.
For now we're coping ok with a CNA coming once a week, and with my daughter, who lives with us but has a full time job and her own life so is only available sometimes. We have 4 cats, and over the years have loved and tended and grieved for many animals with many abilities and disabilities. I certainly DO have to look out for myself financially, and putting him in a facility would not be in MY best financial interests. Maybe when he dissolves into Stage 7, I'll have to reconsider. Before then, probably not.
Right, I agree Susan. I have a friend whose dh had Parkenism with dementia and she resisted placing her dh a year after the Doctors urged her to do so and she pretty well ruined her health. I don't think the caregiver should do more than they are physically or mentally able. You better be careful with your back because having seen what back problems can entail that just about can do you in.
You are doing a great job for your dh. Isn't it a shame they don't appreciate us? When my dh gets testy with me sometimes I will tell him I take care of him and if I don't who would. Then he realizes all I do for him.
I don't think how long we care for them in home has anything to do with keeping our vows. As others said - we make the decision based on our physical condition, other responsibilities, finances, mutual agreement, etc.
I watched my MIL literally kill herself caring for her AD husband. I watched my sister run herself into the ground taking care of first our mom, then her husband after his stroke - so much so that it took a year of sleep before she was ready to start in again. She still has not recovered physically (age 70).
Me personally would not do that. If his MCI progresses to AD, as soon as the VA will take him he will go. We have talked about this and he is fine with it. His constant remark is not to repeat what his mom did. It has nothing to do with sacrificing oneself to keep our vows (38 yrs), it is doing what is best for each other. His dad was diagnosed about 25 years ago and is still going - a walking shell but still physically healthy. His sister, age 58, is still physically healthy, but she suffers from the short term memory and is in a extended facility where she lives in an apartment.
Susan, only you know when the time is right for you. And remember you have Dylan to consider. He needs you healthy, not broken.
Have been off the site for a few days due to a few days of hell. I came on line tonight wondering where to begin. The topic of this thread could not have said it any better. He has paced and paced for days. He is sleeping nights but from the time he gets up until he is physically exhausted at night he is on the move, sweating, falling, sounding like each breath will be his last. He refuses any direction and does not appear to hear or understand anything I say. There were a couple of times yesterday that I truly felt that I could do him bodily harm(not really but I certainly started to understand how it could happen). I truly did feel as if I were going to have a stroke or a heart attack (or commit murder) I realized then that "we deserve better than this". He deserves not to be screamed at for something that he can not control and I deserve a little peace and a decent nights sleep (I'm afraid to sleep even when he does because I didn't hear him get up a couple of times). I am at the end of my rope and I do not have the strength to tie any knots. I am sure we will qualify for Medicaid and I am going to talk to a lawyer on Thursday to see what to do to start the process. I love him so much but I do not have the strength or the health to do this any more. He deserves love and compassion and maybe if I am not so stressed from his constant care I can give him more of that if he does not live here any more.
Edis-you will be a better care giver than ever when you can enjoy and love your husband. Trust me-utter exhaustion does not contribute to good care giving. If you can afford to place him in a nurturing environment you will both be better off. You will still be his caregiver-but in a different and healthier way.
Ehamilton--bless you sweetie. you have had enough. this is exactly what we are discussing on this thread. you have proven each person can only take what they can emotionally and physically. you speak to that lawyer asap and get him qualified for medicaide. once hes placed you will have the rest and comfort you deserve. nobody needs to take more than they can stand. you did wait too long too. let us know how its going. and please speak with his dr to get something to deflate him. even if he sleeps alot its better probably for him and you til you can work out the details for placement. hugs to you and to him -it wont be too long and things will then be where you can visiit in harmony again. divvi
Thank you all so very much for coming to my defense. We have known each other a while now and you all know my situation and how very much I love my husband. Since renewing our vows, I feel more devoted to him than ever. He is my life, my mother, and Dylan need me as well. I would never abandon Jim. When we/he decide it is time for the VA Home, I will be there with him everyday while Dylan is in school and on weekends as a family. I am lucky and proud to be married to a veteran who has made me the luckiest woman alive. I know he still adores me by the way he looks at me. I am 53 yrs old, with a 9 yr old and a 76 yr old mother. I am not a superhero, but am being pulled in so many directions that I don't always know which way is up! Dylan has a pre-frontol lobe brain deficit which require special therapy 3 times a week, my Mom has a chronic pneumonitis,require visiting nurses and oxygen therapy. My week is so full that I had to give up a career that I adored because it was more important to spend these last years with Jim than to have money. We are struggling to keep our heads above water, financially, but it is worth the time with JIm. I am a good, spiritual, loving, giving caregiver, I've fostered, and adopted children and pets. I Cared for my beloved father while he battled a very painful, debilitating cancer, alone with my mom. I've overcome a 4 disc back injury at work and live with constant pain. Now I'm raising a special needs Grandson. So, Shadowbaby, don't judge me until you've spent a week in my life.
Susan, I think you ARE a superhero! You are truly doing it all. I have no advice for you - but just know I am thinking of you, your DH, your Mother and Dylan and lifting you up for strength and peace.
Susan you are doing far more than I am. I could not cope in your circumstances; I'd be looking for the nearest facility.
And Edis, you too. We've had on this board, as you know, some pacers; there was also one married to a woman in my real-life support group. She was just worn to a frazzle. He finally had a stroke and died, after more than a year! ANd she wished she'd put him in a facility before it had gone on so long.
Hugs to both of you - and give yourselves a break!!!
No one should ever judge another. None of us know what cross the other is bearing. I come to this site, and think , holy cow, these folks are really having a tough time, why should I complain. But We each have our own limits, Susan, you are really the sandwich generation, with a mother husband child and grandchild. You certainly don't need to defend yourself. And Edis, you also need to take some me time. Even if you just hide in the bathroom and give yourself a pedicure, take some time for yourself, you deserve it.