Not Incontinence but bathroom messes and clothes soiling

I'm so thankful that I found this forum. I have been looking at other forums/websites for some practical experience, knowledge, and tips from other caregivers, but couldn't find one that discusses "real life" issues and how people are dealing with this very difficult area. I can relate to alot of the comments/stories, but have found it interesting how others have similar but yet different manifestations of loved ones in the different stages of Dementia/Alzheimers. My wife of 43 years, began showing signs of memory loss approximately 12 years ago...she is now 72. It has been a very slow progression, but the last two years, things have definitely changed. Her bathroom issues started about a year ago, but now we are having some of the same things happening that others have described, with incontinence. She wears adult diapers all of the time now, due to the. . inability to sometimes not know when to go to the bathroom. We are attempting to get my wife on a bathroom schedule, but not always successful. Trying not to be too graphic, but she doesn't know how to clean herself, when she does make it to the toilet, so I now have to wipe her, when she lets me, but the diapers kinda do the wiping. It sounds like from other posts, that alot of caregivers are dealing with the same thing, although some have it ,"much worse", which I'm sorry to hear. We can no longer go on any extended car trips, for fear that if she did have an accident, I wouldn't be able to get in a "women's bathroom", to help her. I have learned quite a bit from others, so thank you for all of your experiences. We also, have a healthcare lady for approximately 4 days per week, which is a big help, but my wife will not allow her to change her diapers or give her showers, ( which I now have to physically get into the shower to make sure my wife gets clean)....as I'm sure others have experienced that she does not want to get a shower.
My wife has begun the constant talking, using correct words, but totally unrelated, and this has started to be a struggle for me. Her neurologist did prescribe Seroquel several months ago to try and help with morning shaking, but the biggest positive is that it does cause her to sleep. We started on 25mg, and sometimes that helps, but not always. I now use 50mg, and most of the time it does help. Sleep comes and lasts for up to 8 hours or more.
I don't like to use medications, (which I would imagine, most don't like to do), but, as we know, we are treating symptoms, not necessarily trying to cure anything. The sleep/quiet times are welcome after several hours of nonstop incoherent talking/asking questions.
Our family did consider a Memory Care several months ago, when the incontinence began, but I decided it wasn't quite time and are trying to keep her at home for now. Sorry to be so lengthy, but I will certainly be open to suggestions and look forward to reading what others are doing. Praying for patience, strength, and wisdom.

I'm so thankful that I found this forum. I have been looking at other forums/websites for some practical experience, knowledge, and tips from other caregivers, but couldn't find one that discusses "real life" issues and how people are dealing with this very difficult area. I can relate to alot of the comments/stories, but have found it interesting how others have similar but yet different manifestations of loved ones in the different stages of Dementia/Alzheimers. My wife of 43 years, began showing signs of memory loss approximately 12 years ago...she is now 72. It has been a very slow progression, but the last two years, things have definitely changed. Her bathroom issues started about a year ago, but now we are having some of the same things happening that others have described, with incontinence. She wears adult diapers all of the time now, due to the. . inability to sometimes not know when to go to the bathroom. We are attempting to get my wife on a bathroom schedule, but not always successful. Trying not to be too graphic, but she doesn't know how to clean herself, when she does make it to the toilet, so I now have to wipe her, when she lets me, but the diapers kinda do the wiping. It sounds like from other posts, that alot of caregivers are dealing with the same thing, although some have it ,"much worse", which I'm sorry to hear. We can no longer go on any extended car trips, for fear that if she did have an accident, I wouldn't be able to get in a "women's bathroom", to help her. I have learned quite a bit from others, so thank you for all of your experiences. We also, have a healthcare lady for approximately 4 days per week, which is a big help, but my wife will not allow her to change her diapers or give her showers, ( which I now have to physically get into the shower to make sure my wife gets clean)....as I'm sure others have experienced that she does not want to get a shower.
My wife has begun the constant talking, using correct words, but totally unrelated, and this has started to be a struggle for me. Her neurologist did prescribe Seroquel several months ago to try and help with morning shaking, but the biggest positive is that it does cause her to sleep. We started on 25mg, and sometimes that helps, but not always. I now use 50mg, and most of the time it does help. Sleep comes and lasts for up to 8 hours or more.
I don't like to use medications, (which I would imagine, most don't like to do), but, as we know, we are treating symptoms, not necessarily trying to cure anything. The sleep/quiet times are welcome after several hours of nonstop incoherent talking/asking questions.
Our family did consider a Memory Care several months ago, when the incontinence began, but I decided it wasn't quite time and are trying to keep her at home for now. Sorry to be so lengthy, but I will certainly be open to suggestions and look forward to reading what others are doing. Praying for patience, strength, and wisdom.

Wow. I am reading through everyone's posts and it is so familiar and I feel all the frustration, anxiety, fatigue that you all are expressing. My heart goes out to each and every one of you. I have not posted for a while because I reached the POINT. I was laying in bed one morning in the guest room ( I had moved out for many reasons, including that my husband often smelled, and was a very fitful sleeper) and this is what went though my head. "I can't keep this up so one of us needs to go, and I don't care which one."

When I said that in my mind I realized I was in distress. I had some help coming in to shower and change him, 4 hours a day 3 days a week. It was not nearly enough. I was still trying to be "normal" and take him out to eat, to the store...inevitably these events would be stressful at best, and a disaster at worst.

I could not afford the cost of memory care in the South Bay of CA. He is level 3 here. Needs disposable undies, help dressing and all grooming must be done for him, he needs guidance to his studio, wanders at night, and needs some assistance with meals. It was about 1/3 less expensive in AZ. We have family here, including one of our daughters and 2 grandsons. So I flew out for the day several times and with my daughter, toured Memory Care facilities. We both liked one very much. So then I looked for a place for me nearby. I actually bought a house without seeing it because it was 8 min away.

I moved my husband in 10/1/24, I stayed a week and hired a private caregiver in addition, to spend 3 mornings a week accompanying him to the activities, and to take him on walks while I was away. My husband is only 66 and still fairly fit. He can walk for miles. He doesn't speak, and he gets pretty ornery about letting people clean his bottom and wipe his runny nose, change his clothes,etc. But the staff there deals with it. Not me. Its an amazing thing and I am still getting used to it.

I went home for 5 days and packed up our lives and moved us out of our home. I have recently decided to list the house for sale, I won't be going back as long as my husband is here and I have support here. I think I will just visit California and see old friends when I can. It's lonely, taking care of him was a full time job and then some. Now I have had time to reflect and I cannot believe I had guilt about doing this. It simply was going to kill me, I had no life and no time to even think about that.

It's a process. I need to get more activities for myself, but I still see my husband daily and try to provide a sense of "wife" by bringing homemade meals to share, taking him on walks with our dog, watching football with him. Taking him out has it's challenges including the fact that he can be really uncooperative and I am 105 lbs, and he is 6/2' and 185 lbs. So I need to pick wisely or have support. It's hard because he doesn't always want to go back, I have to strategize that.

I will just say this, when I observe all the work the entire staff does to care for him I give myself a little pat on the back. That was just me. I think it will take time but I will be able to take an art class or join a book club eventually and not feel guilty. The time I have alone right now I have mostly used to finally experience the grief. I had no time for grief before. I figure that is the first step toward healing and reclaiming this next chapter of life. I hope so.

I send you all big hugs and respect for what you are up against, and what you are providing. I know not everyone is ready for the next phase, I can just tell you that I knew I had to and it was just in time. I guess you'll know it when you know it, but keep your mind open for the messages. You are truly amazing. Every one of you.

Wow. I am reading through everyone's posts and it is so familiar and I feel all the frustration, anxiety, fatigue that you all are expressing. My heart goes out to each and every one of you. I have not posted for a while because I reached the POINT. I was laying in bed one morning in the guest room ( I had moved out for many reasons, including that my husband often smelled, and was a very fitful sleeper) and this is what went though my head. "I can't keep this up so one of us needs to go, and I don't care which one."

When I said that in my mind I realized I was in distress. I had some help coming in to shower and change him, 4 hours a day 3 days a week. It was not nearly enough. I was still trying to be "normal" and take him out to eat, to the store...inevitably these events would be stressful at best, and a disaster at worst.

I could not afford the cost of memory care in the South Bay of CA. He is level 3 here. Needs disposable undies, help dressing and all grooming must be done for him, he needs guidance to his studio, wanders at night, and needs some assistance with meals. It was about 1/3 less expensive in AZ. We have family here, including one of our daughters and 2 grandsons. So I flew out for the day several times and with my daughter, toured Memory Care facilities. We both liked one very much. So then I looked for a place for me nearby. I actually bought a house without seeing it because it was 8 min away.

I moved my husband in 10/1/24, I stayed a week and hired a private caregiver in addition, to spend 3 mornings a week accompanying him to the activities, and to take him on walks while I was away. My husband is only 66 and still fairly fit. He can walk for miles. He doesn't speak, and he gets pretty ornery about letting people clean his bottom and wipe his runny nose, change his clothes,etc. But the staff there deals with it. Not me. Its an amazing thing and I am still getting used to it.

I went home for 5 days and packed up our lives and moved us out of our home. I have recently decided to list the house for sale, I won't be going back as long as my husband is here and I have support here. I think I will just visit California and see old friends when I can. It's lonely, taking care of him was a full time job and then some. Now I have had time to reflect and I cannot believe I had guilt about doing this. It simply was going to kill me, I had no life and no time to even think about that.

It's a process. I need to get more activities for myself, but I still see my husband daily and try to provide a sense of "wife" by bringing homemade meals to share, taking him on walks with our dog, watching football with him. Taking him out has it's challenges including the fact that he can be really uncooperative and I am 105 lbs, and he is 6/2' and 185 lbs. So I need to pick wisely or have support. It's hard because he doesn't always want to go back, I have to strategize that.

I will just say this, when I observe all the work the entire staff does to care for him I give myself a little pat on the back. That was just me. I think it will take time but I will be able to take an art class or join a book club eventually and not feel guilty. The time I have alone right now I have mostly used to finally experience the grief. I had no time for grief before. I figure that is the first step toward healing and reclaiming this next chapter of life. I hope so.

I send you all big hugs and respect for what you are up against, and what you are providing. I know not everyone is ready for the next phase, I can just tell you that I knew I had to and it was just in time. I guess you'll know it when you know it, but keep your mind open for the messages. You are truly amazing. Every one of you.

Wow. I am reading through everyone's posts and it is so familiar and I feel all the frustration, anxiety, fatigue that you all are expressing. My heart goes out to each and every one of you. I have not posted for a while because I reached the POINT. I was laying in bed one morning in the guest room ( I had moved out for many reasons, including that my husband often smelled, and was a very fitful sleeper) and this is what went though my head. "I can't keep this up so one of us needs to go, and I don't care which one."

When I said that in my mind I realized I was in distress. I had some help coming in to shower and change him, 4 hours a day 3 days a week. It was not nearly enough. I was still trying to be "normal" and take him out to eat, to the store...inevitably these events would be stressful at best, and a disaster at worst.

I could not afford the cost of memory care in the South Bay of CA. He is level 3 here. Needs disposable undies, help dressing and all grooming must be done for him, he needs guidance to his studio, wanders at night, and needs some assistance with meals. It was about 1/3 less expensive in AZ. We have family here, including one of our daughters and 2 grandsons. So I flew out for the day several times and with my daughter, toured Memory Care facilities. We both liked one very much. So then I looked for a place for me nearby. I actually bought a house without seeing it because it was 8 min away.

I moved my husband in 10/1/24, I stayed a week and hired a private caregiver in addition, to spend 3 mornings a week accompanying him to the activities, and to take him on walks while I was away. My husband is only 66 and still fairly fit. He can walk for miles. He doesn't speak, and he gets pretty ornery about letting people clean his bottom and wipe his runny nose, change his clothes,etc. But the staff there deals with it. Not me. Its an amazing thing and I am still getting used to it.

I went home for 5 days and packed up our lives and moved us out of our home. I have recently decided to list the house for sale, I won't be going back as long as my husband is here and I have support here. I think I will just visit California and see old friends when I can. It's lonely, taking care of him was a full time job and then some. Now I have had time to reflect and I cannot believe I had guilt about doing this. It simply was going to kill me, I had no life and no time to even think about that.

It's a process. I need to get more activities for myself, but I still see my husband daily and try to provide a sense of "wife" by bringing homemade meals to share, taking him on walks with our dog, watching football with him. Taking him out has it's challenges including the fact that he can be really uncooperative and I am 105 lbs, and he is 6/2' and 185 lbs. So I need to pick wisely or have support. It's hard because he doesn't always want to go back, I have to strategize that.

I will just say this, when I observe all the work the entire staff does to care for him I give myself a little pat on the back. That was just me. I think it will take time but I will be able to take an art class or join a book club eventually and not feel guilty. The time I have alone right now I have mostly used to finally experience the grief. I had no time for grief before. I figure that is the first step toward healing and reclaiming this next chapter of life. I hope so.

I send you all big hugs and respect for what you are up against, and what you are providing. I know not everyone is ready for the next phase, I can just tell you that I knew I had to and it was just in time. I guess you'll know it when you know it, but keep your mind open for the messages. You are truly amazing. Every one of you.

It seems that when people need a lot of assistance, they lose the ability to realize the enormity of it. When someone who has many needs, lacks mobility and requires around the clock care asks a family member to keep them in their home, they lack insight into the situation. Have they ever cared for someone in that situation before? After what I have been though, I would never ask that of a friend or family member. Unless, they can afford outside care to come in 24/7, it’s just not feasible, imo. I would welcome placement, because I wouldn’t want to put that much work and stress on my loved one.

So, hone health care finally came last week and my dad refused to accept it. He was polite at first, but then went to his room and locked the door, refusing to let me and the health care aid inside. We explained that if he refuses, he will be placed in a facility and will have around the clock assistance. But, since he has lost good judgment, he’ll probably not change on this. So, I expect placement very soon. My mom and I told him his care needs are too great….we can’t do it alone….but he doesn’t care. Dementia causes lack of empathy and insight. Resistance to care is difficult to deal with. Plus, he’s never been a caregiver. Unless, you’ve been there, it’s difficult to explain.