Becky, Volunteer Mentor | @becsbuddy | Oct 1, 2023
@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?
@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?
Good morning, @alone I'm Scott, and I was my wife's caregiver for her 14+ year war with brain cancer. I came to Connect because I was feeling so incredibly overwhelmed and isolated by my caregiving.
Caregiving, at least for me, was a constantly changing scenario. Often those changes occurred literally overnight. You mentioned toileting and memory. What questions do you have about those?
I'm happy to share my experiences and what I learned during our journey.
Good morning, @alone! My caregiving experience is for my husband who was diagnosed almost 4 years ago with Lewy Body Disease (dementia). He is not incontinent yet. He's unable to dress himself, read, retrieve words, understand the concept of time, or do most anything. It's heartbreaking to (in reality) watch your loved one slowly die. Caregiving is journey that can only be accomplished in my opinion through love, praying for patience, and little (I mean LITTLE) breaks. Often if I can take a 10-minute break and talk to someone to hear a clear sentence spoken to me, I am good for another day. I rely on God to be by my side and give me strength. I also try to find the humor in our situation and laugh. Going to my support group once a month, gives me a perspective that is helpful. I can lay my feelings on the table, hear helpful hints from others, and realize that I am in better shape than most. Stay connected with groups like this and ask lots of questions. Over the years, I can see a huge change in myself. For one, I am more patient now. However, the goal line of ENOUGH patience keeps moving further away! I believe that my husband is providing me an opportunity to become a better person. Just continue to love. I will keep you in my thoughts and prayers. Hugs!
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.
My husband has to Catherize himself 3/4 times daily & refuses/forgets to do so & then has an accident . Also is not washing/wiping himself after bowel movements. This is very stressful.
Good morning, @alone! My caregiving experience is for my husband who was diagnosed almost 4 years ago with Lewy Body Disease (dementia). He is not incontinent yet. He's unable to dress himself, read, retrieve words, understand the concept of time, or do most anything. It's heartbreaking to (in reality) watch your loved one slowly die. Caregiving is journey that can only be accomplished in my opinion through love, praying for patience, and little (I mean LITTLE) breaks. Often if I can take a 10-minute break and talk to someone to hear a clear sentence spoken to me, I am good for another day. I rely on God to be by my side and give me strength. I also try to find the humor in our situation and laugh. Going to my support group once a month, gives me a perspective that is helpful. I can lay my feelings on the table, hear helpful hints from others, and realize that I am in better shape than most. Stay connected with groups like this and ask lots of questions. Over the years, I can see a huge change in myself. For one, I am more patient now. However, the goal line of ENOUGH patience keeps moving further away! I believe that my husband is providing me an opportunity to become a better person. Just continue to love. I will keep you in my thoughts and prayers. Hugs!
I can so relate to your experience. You and I could be twins. I try to keep my mind on one day at a time. But unfortunately, that is not always possible. I pray for patience constantly. I realize my frustration and resultant is not directed at my husband, but at our new constant companion, Lewy. It is so sad to see my husband robbed of his short-term memory as well as the last 10 years, his ability to communicate in a comprehensible manner, his visual and auditory cognition, his self-respect, his self-confidence, his executive functioning, his perception and his understanding of what is going on around him. Fortunately, or maybe unfortunately, he is still physically capable of handling his ADLs, albeit somewhat messily at times. He has also lost 70 pounds over the last few years. We are in the process of moving "home" to Cape Cod. I am trying to find a home long-distance with multiple trips to the Cape, getting our current home ready for sale (cleaning out 40+ years of "stuff", getting painting and renovations done). The upheaval is difficult for him, but the move is necessary. We will be closer to both our families and former colleagues. Each day brings a brand new stressor and I wonder if I will break under the stress someday. I constantly pray for patience with both myself and his LBD symptoms. Thank you for sharing. It is so good to be reminded that we caregivers are not as alone on this journey as it often seems we are.
Hang in there and now that others are doing the same. Pauline (Lena)
I can so relate to your experience. You and I could be twins. I try to keep my mind on one day at a time. But unfortunately, that is not always possible. I pray for patience constantly. I realize my frustration and resultant is not directed at my husband, but at our new constant companion, Lewy. It is so sad to see my husband robbed of his short-term memory as well as the last 10 years, his ability to communicate in a comprehensible manner, his visual and auditory cognition, his self-respect, his self-confidence, his executive functioning, his perception and his understanding of what is going on around him. Fortunately, or maybe unfortunately, he is still physically capable of handling his ADLs, albeit somewhat messily at times. He has also lost 70 pounds over the last few years. We are in the process of moving "home" to Cape Cod. I am trying to find a home long-distance with multiple trips to the Cape, getting our current home ready for sale (cleaning out 40+ years of "stuff", getting painting and renovations done). The upheaval is difficult for him, but the move is necessary. We will be closer to both our families and former colleagues. Each day brings a brand new stressor and I wonder if I will break under the stress someday. I constantly pray for patience with both myself and his LBD symptoms. Thank you for sharing. It is so good to be reminded that we caregivers are not as alone on this journey as it often seems we are.
Hang in there and now that others are doing the same. Pauline (Lena)
Oh lena0820! We are nearly twins! My LO and I always rant at our new family member, Lewy, too. He wasn't invited, doesn't pay rent, disturbs our precious sleep, and is a generally annoying intruder! My Lo lost 60 pounds and is just now starting to struggle with dressing. Otherwise, he is fairly capable of performing his ADLs. My son and his family are in Newton (Waban) and often spend summers in Cape Cod. It is beautiful! I will keep you in my daily prayers. By the way, I have a T-shirt that reads "My Patience Were Tested...I'm Negative!" I think all caregivers should have two or three of them!! Good luck with your move to Cape Cod.
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@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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7 ReactionsI have been a caregiver for 5 years. Would like to communicate with others in same situations.
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2 ReactionsI am caregiver for my husband.
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2 ReactionsGood morning, @alone I'm Scott, and I was my wife's caregiver for her 14+ year war with brain cancer. I came to Connect because I was feeling so incredibly overwhelmed and isolated by my caregiving.
Caregiving, at least for me, was a constantly changing scenario. Often those changes occurred literally overnight. You mentioned toileting and memory. What questions do you have about those?
I'm happy to share my experiences and what I learned during our journey.
Strength, Courage, & Peace
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10 ReactionsGood morning, @alone! My caregiving experience is for my husband who was diagnosed almost 4 years ago with Lewy Body Disease (dementia). He is not incontinent yet. He's unable to dress himself, read, retrieve words, understand the concept of time, or do most anything. It's heartbreaking to (in reality) watch your loved one slowly die. Caregiving is journey that can only be accomplished in my opinion through love, praying for patience, and little (I mean LITTLE) breaks. Often if I can take a 10-minute break and talk to someone to hear a clear sentence spoken to me, I am good for another day. I rely on God to be by my side and give me strength. I also try to find the humor in our situation and laugh. Going to my support group once a month, gives me a perspective that is helpful. I can lay my feelings on the table, hear helpful hints from others, and realize that I am in better shape than most. Stay connected with groups like this and ask lots of questions. Over the years, I can see a huge change in myself. For one, I am more patient now. However, the goal line of ENOUGH patience keeps moving further away! I believe that my husband is providing me an opportunity to become a better person. Just continue to love. I will keep you in my thoughts and prayers. Hugs!
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16 ReactionsOne day at a time… It is also easier when there is hope that these symptoms will soon pass.
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6 ReactionsHi. 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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Like -
Helpful -
Hug
14 ReactionsMy husband has to Catherize himself 3/4 times daily & refuses/forgets to do so & then has an accident . Also is not washing/wiping himself after bowel movements. This is very stressful.
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Like -
Helpful -
Hug
6 ReactionsI can so relate to your experience. You and I could be twins. I try to keep my mind on one day at a time. But unfortunately, that is not always possible. I pray for patience constantly. I realize my frustration and resultant is not directed at my husband, but at our new constant companion, Lewy. It is so sad to see my husband robbed of his short-term memory as well as the last 10 years, his ability to communicate in a comprehensible manner, his visual and auditory cognition, his self-respect, his self-confidence, his executive functioning, his perception and his understanding of what is going on around him. Fortunately, or maybe unfortunately, he is still physically capable of handling his ADLs, albeit somewhat messily at times. He has also lost 70 pounds over the last few years. We are in the process of moving "home" to Cape Cod. I am trying to find a home long-distance with multiple trips to the Cape, getting our current home ready for sale (cleaning out 40+ years of "stuff", getting painting and renovations done). The upheaval is difficult for him, but the move is necessary. We will be closer to both our families and former colleagues. Each day brings a brand new stressor and I wonder if I will break under the stress someday. I constantly pray for patience with both myself and his LBD symptoms. Thank you for sharing. It is so good to be reminded that we caregivers are not as alone on this journey as it often seems we are.
Hang in there and now that others are doing the same. Pauline (Lena)
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Helpful -
Hug
12 ReactionsOh lena0820! We are nearly twins! My LO and I always rant at our new family member, Lewy, too. He wasn't invited, doesn't pay rent, disturbs our precious sleep, and is a generally annoying intruder! My Lo lost 60 pounds and is just now starting to struggle with dressing. Otherwise, he is fairly capable of performing his ADLs. My son and his family are in Newton (Waban) and often spend summers in Cape Cod. It is beautiful! I will keep you in my daily prayers. By the way, I have a T-shirt that reads "My Patience Were Tested...I'm Negative!" I think all caregivers should have two or three of them!! Good luck with your move to Cape Cod.
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Helpful -
Hug
9 Reactions