Interested in how other caregivers survive

Posted by alone @alone, Oct 1, 2023

Need to know how others in my situation function. Toilet accidents, memory etc.

Interested in more discussions like this? Go to the Caregivers Support Group.

@msberen

I would be interested in communicating with others as well. I’ve been a caregiver for 7 years. It gets lonely and it would be nice to be able to express things to people who understand without judgement. Im not sure how to connect with people here but I would be willing to chat with you.

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I’d like to talk too.

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@becsbuddy

@alone Welcome to Mayo Clinic Connect! You’ve come to the right place. There are many members in your same situation and I’m sure they would be glad to share tips and how they cope.
https://connect.mayoclinic.org/discussion/new-to-this-discussion-group-1/
Maybe this website will give you some help while we wait for members to jump in.
https://www.powerfultoolsforcaregivers.org/
But first, maybe you can tell us a little more about your situation. Who are you a caregiver for and for long? What are your specific frustrations besides toileting and memory?

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I am the caregiver for my husband who has dementia. This has been true for over a year.
Frustrated at sometimes feeling "trapped" at home in a situation I can't leave and not worry what might happen. He has type 1 diabetes which really complicates the situation.

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@dianaol

Hi. I share your challenge with incontinence care for my husband. Oddly, one thing that has helped me is letting go of the expectation that he would try to help with the problem—-like stopping drinking fluids two hours before bedtime, like sitting on the toilet rather than standing up and missing the toilet. I’ve come to accept that the incontinence isn’t going to change and that has helped me not feel so frustrated. Lonely? Yes. Sad? YES. Wishing for just a few minutes a day “off duty?” Yes! I don’t have answers for those. I hope you find a path to peacefulness. Hugs.

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Even with my experience as a health care provider, I have frequent bouts of impatience. I know the reasons and yet I often have verbally lashed out. My respite is gardening, house work, politics, throwing a ball to the dog. I get some

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@ejgroninger

I am the caregiver for my husband who has dementia. This has been true for over a year.
Frustrated at sometimes feeling "trapped" at home in a situation I can't leave and not worry what might happen. He has type 1 diabetes which really complicates the situation.

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Welcome, @ejgroninger. You're not alone in feeling trapped at home. You might also appreciate this related discussion
- Prioritizing relationships https://connect.mayoclinic.org/discussion/afraid-of-overbearing-adult-children-being-around-disabled-spouse/

Do you have family, friends or local support to help give you a break once in a while?

I can imagine that managing his diabetes can be challenging. Does he resist eating well or regularly? How about taking meds, etc.?

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@patriciaedna1954

Even with my experience as a health care provider, I have frequent bouts of impatience. I know the reasons and yet I often have verbally lashed out. My respite is gardening, house work, politics, throwing a ball to the dog. I get some

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Me too! I get frustrated and snap and then feel so guilty. Ninety percent of the time I am not angry with my charge, it's with me. At times it seems like everywhere I look, there is something that needs doing that I haven't got to yet.

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@patriciaedna1954

Even with my experience as a health care provider, I have frequent bouts of impatience. I know the reasons and yet I often have verbally lashed out. My respite is gardening, house work, politics, throwing a ball to the dog. I get some

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When I reach that "point", if I catch kit in time, I attach the kitchen or the floors. Some time if find a reason to go to the grocery store. I love you wife and know she's dealing with a lot more than I am. I just need to take a minute and remind myself of that and remember to give thanks for the over 60 years we've had.

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I've got to edit my post in the future!

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Hi Fellow Caregivers, Just an update. After going down the rabbit hole of depression, I have been given a new outlook on life with an anti-depressant that works. If this is the pot of gold you find at the end of this colorless rainbow that has invaded our lives, do not hesitate to accept that you are only human and quickly seek help. It is my understanding that the first med tried might not be the correct one, but keep at it with your professionals's assistance. I personally found that recommendations to take the med at either bedtime or on rise did not work for me. It turns out 7 to 8 p.m. is my magic slot to get a decent night's sleep and a day where my energy level is good. -- When I read the responses today, I noticed that no one mentioned incontinence diapers. As an 86-year-old caregiver to a 94-year-old husband, our house would smell like a kitty litter box without them. Getting our loved ones to use them might take a bit of talking, but it could be the answer to the issue. And they can be delivered directly to your door. Also, I keep those Lysol or Clorox cannisters with wipes we all used during Covid in the bathroom. Since I use a walker and can't bend over, I just drop a few on the floor and use my foot to shove it around. Then the gripper that is attached to my walker finishes the job as it deposits the wipe in the trash can. As they say,
where there is a will there is a way. -- After burnout and the help from meds, I put newfound strength into positive change. We now have a young woman who comes in twice a month for four hours. Her responsibilities are open-ended since I am not yet sure what we need to make my tasks as a caregiver easier. The first thing tackled was our bedroom walls and furniture that had not been washed in over ten years. After looking at that bucket's contents, I have been given a positive boost. And, conversation with someone who will remember our conversation was darn wonderful. -- I do not know what gives each of us pleasure but save a bit of each day to do it. The concept of finding new levels of strength every day seems ridiculous at times. If anyone had told me ten years ago that I would still be in this game I do not like playing, I would have been overwhelmed. Still, every day, I find a patience that is beneficial to both my husband and myself. Yes, even if he doesn't realize it, he is turning me into a better person. GloRo

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@gloro

Hi Fellow Caregivers, Just an update. After going down the rabbit hole of depression, I have been given a new outlook on life with an anti-depressant that works. If this is the pot of gold you find at the end of this colorless rainbow that has invaded our lives, do not hesitate to accept that you are only human and quickly seek help. It is my understanding that the first med tried might not be the correct one, but keep at it with your professionals's assistance. I personally found that recommendations to take the med at either bedtime or on rise did not work for me. It turns out 7 to 8 p.m. is my magic slot to get a decent night's sleep and a day where my energy level is good. -- When I read the responses today, I noticed that no one mentioned incontinence diapers. As an 86-year-old caregiver to a 94-year-old husband, our house would smell like a kitty litter box without them. Getting our loved ones to use them might take a bit of talking, but it could be the answer to the issue. And they can be delivered directly to your door. Also, I keep those Lysol or Clorox cannisters with wipes we all used during Covid in the bathroom. Since I use a walker and can't bend over, I just drop a few on the floor and use my foot to shove it around. Then the gripper that is attached to my walker finishes the job as it deposits the wipe in the trash can. As they say,
where there is a will there is a way. -- After burnout and the help from meds, I put newfound strength into positive change. We now have a young woman who comes in twice a month for four hours. Her responsibilities are open-ended since I am not yet sure what we need to make my tasks as a caregiver easier. The first thing tackled was our bedroom walls and furniture that had not been washed in over ten years. After looking at that bucket's contents, I have been given a positive boost. And, conversation with someone who will remember our conversation was darn wonderful. -- I do not know what gives each of us pleasure but save a bit of each day to do it. The concept of finding new levels of strength every day seems ridiculous at times. If anyone had told me ten years ago that I would still be in this game I do not like playing, I would have been overwhelmed. Still, every day, I find a patience that is beneficial to both my husband and myself. Yes, even if he doesn't realize it, he is turning me into a better person. GloRo

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@gloro This was so wonderful to read! I’m so glad that you started on antidepressants. They can be wonderful when needed. I also like your suggestion about incontinence diapers. I remember trying to convince my 92 yr old dad that they were so much safer than getting up at night.
Your joy really comes out in this post! Thank you

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@becsbuddy

@alone Welcome to Mayo Clinic Connect! You’ve come to the right place. There are many members in your same situation and I’m sure they would be glad to share tips and how they cope.
https://connect.mayoclinic.org/discussion/new-to-this-discussion-group-1/
Maybe this website will give you some help while we wait for members to jump in.
https://www.powerfultoolsforcaregivers.org/
But first, maybe you can tell us a little more about your situation. Who are you a caregiver for and for long? What are your specific frustrations besides toileting and memory?

Jump to this post

I am caregiver for my wife over six months. She is diagnosed with breast cancer that spread to her spine. Now going through treatment. Besides dealing with care for incontinence , also is challenging dealing daily with her condition and not able to attend appointments sometimes because of her anxiety and strength. Any inputs are appreciated.

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