Rosemary, Volunteer Mentor | @rosemarya | Mar 30 8:09am
@brishawn24@scoutmaster185@mariancauwel - Here is an article from the Mayo Transplant
Blog/newsfeed article that was created from contributions by members in the Organ Transplant Group:
- What to Expect as a Transplant Caregiver https://connect.mayoclinic.org/blog/transplant/newsfeed-post/what-to-expect-as-a-transplant-caregiver/ @brishawn24, It is not at all unusual for liver disease to creep up since symptoms are often 'silent' and go undiagnosed until there is already damage to the liver. My liver disease was caught by my very observant primary care doctor during my routine annual check-up. After referral during and monitoring with a gastroenterologist(GI) I lived relatively symptom-free for nearly 8 years before my physical health declined and I was evaluated for my transplant.
@scoutmaster185, I am a liver and kidney transplant recipient. I had my transplant at Mayo Rochester in 2009 with my husband as my caregiver. I know that it is an all-the-time stress to your mind and body, and I remember that it was for my husband, too. I would encourage you to focus only on the household duties that are a "Must".
I know that one of the most difficult things to do is to ask for help, but this is essentual for you to consider. My girlfriends used to come to visit with me while my husband ran errands or went for a jog. Have you given any thought to the kind of help that you would appreciate?
@mariancauwel, Has your daughter been evaluated yet for the transplant listing? If she is a Mayo patient, there are some online support groups available.
I want to invite all of you to this support group.
-Transplant Caregiver Advice: Got Tips to Share? https://connect.mayoclinic.org/discussion/transplant-caregiver-advice-got-tips-to-share/?
I know that the 3 of you are new to the transplant journey. How about we each pour a cup of tea , grab a snack, and meet in this group with other transplant patients and caregivers. Hope to see you there.
I am using an AARP Family Caregivers site on FB and it has a wealth of information. Although it is for dementia, it also covers lots of behavioral (and body) changes from being ill, hospitalized and needing help. My husband's UTI and other diabetic complications have made it quite a ride in our household. Their advice has been like an easy reference.
@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?
Hello all: I am new to this group and new to taking care of my husband recently diagnosed with dementia and find myself having difficulty finding the patience in dealing with the repeated asking of the same questions over and over, sometimes this happens in the same hour. Is this because he cannot remember the answer that I just gave him? Also, he is hard of hearing. We purchased hearing aids, and he will not wear them. I want to understand so that I do not get so frustrated. He is in the early stages and is on Aricept. Hoping to slow the progression. He is very functional, showers, fixes his breakfast and lunch. Just gets very confused with other simple tasks. Any suggestions would be helpful. Thank you.
@nadkisson Welcome to Mayo Clinic Connect! I’m so glad you found us. Many others have also mentioned the difficulty of the repeated question-asking. Have you found a Caregivers Support group in your area? Talking with others can really be helpful for you. Also, just reading through this entire discussion will give you lots of hints.
What is the best thing you have found in caring for you husband with dementia?
I am a caregiver for my wife who needs a liver transplant.
Its been a tough journey to this point not realizing what an important organ the liver is. When it shuts down the body no longer filters itself and toxins go to the brain causing encephalopathy, not knowing for the first 2 years why my wife developed instant dementia, till we came to Mayo and meet a wonderful Doctor who told us what was wrong within the first 5 minutes of meeting him.
This is a struggle for me as all of my spouses duties have now become mine. Trying to keep up is a challenge for me. We are so looking forward to moving ahead now with the transplant.
Hello all: I am new to this group and new to taking care of my husband recently diagnosed with dementia and find myself having difficulty finding the patience in dealing with the repeated asking of the same questions over and over, sometimes this happens in the same hour. Is this because he cannot remember the answer that I just gave him? Also, he is hard of hearing. We purchased hearing aids, and he will not wear them. I want to understand so that I do not get so frustrated. He is in the early stages and is on Aricept. Hoping to slow the progression. He is very functional, showers, fixes his breakfast and lunch. Just gets very confused with other simple tasks. Any suggestions would be helpful. Thank you.
Welcome to the group! It's been helpful to me in countless ways and I hope it helps you, too. First, to annswer your question about him not remembering what you told him a fewhn minutes earlier...yes. He doesn't remember. It can be hard to get used to at first. I used to think he was ignoring my responses to his questions or that he didn't hear me. Nope. It's the disease. He's still in there, though. Try to remember that. One thing I found extremely helpful is to think of my husband as an emotional sponge. His memory is shot, but he can read and reflect emotions like never before. That means if I am even slightly annoyed with him or frustrated, he takes those emotions in and amplifies them back. That's bad news for both of us. I found it better to do my best to keep my cool no matter what. I can fall apart at a later time, but not when he's nearby. I don't think of this as being emotionally dishonest. I'm being as loving as I can with our situation as it is. I'm recognizing our new reality.
@brishawn24@scoutmaster185@mariancauwel - Here is an article from the Mayo Transplant
Blog/newsfeed article that was created from contributions by members in the Organ Transplant Group:
- What to Expect as a Transplant Caregiver https://connect.mayoclinic.org/blog/transplant/newsfeed-post/what-to-expect-as-a-transplant-caregiver/ @brishawn24, It is not at all unusual for liver disease to creep up since symptoms are often 'silent' and go undiagnosed until there is already damage to the liver. My liver disease was caught by my very observant primary care doctor during my routine annual check-up. After referral during and monitoring with a gastroenterologist(GI) I lived relatively symptom-free for nearly 8 years before my physical health declined and I was evaluated for my transplant.
@scoutmaster185, I am a liver and kidney transplant recipient. I had my transplant at Mayo Rochester in 2009 with my husband as my caregiver. I know that it is an all-the-time stress to your mind and body, and I remember that it was for my husband, too. I would encourage you to focus only on the household duties that are a "Must".
I know that one of the most difficult things to do is to ask for help, but this is essentual for you to consider. My girlfriends used to come to visit with me while my husband ran errands or went for a jog. Have you given any thought to the kind of help that you would appreciate?
@mariancauwel, Has your daughter been evaluated yet for the transplant listing? If she is a Mayo patient, there are some online support groups available.
I want to invite all of you to this support group.
-Transplant Caregiver Advice: Got Tips to Share? https://connect.mayoclinic.org/discussion/transplant-caregiver-advice-got-tips-to-share/?
I know that the 3 of you are new to the transplant journey. How about we each pour a cup of tea , grab a snack, and meet in this group with other transplant patients and caregivers. Hope to see you there.
@rosemarya hi! This is mariancauwel, my daughter is on the list, pancrease and kidney, I am still trying to navigate the tech stuff to really talk back and forth, I loved what you said about only do the must in the housekeeping I am trying to sterilize and what I really need is a friend caregiver that I can turn to, have a coffee and talk and listen as to how to help Marlo get thru this in the best outcome ways. Thank you for being my friend that I can’t see, just great to know ur not alone. We have a deep Faith but just nice to turn to someone who knows. Thank you.
@rosemarya hi! This is mariancauwel, my daughter is on the list, pancrease and kidney, I am still trying to navigate the tech stuff to really talk back and forth, I loved what you said about only do the must in the housekeeping I am trying to sterilize and what I really need is a friend caregiver that I can turn to, have a coffee and talk and listen as to how to help Marlo get thru this in the best outcome ways. Thank you for being my friend that I can’t see, just great to know ur not alone. We have a deep Faith but just nice to turn to someone who knows. Thank you.
@mariancauwel, I am glad that my suggesti0n was helpful for you. I thing that anything that makes day-to-day life less stressful for a caregiver is worth a try. Be assured that you are going thru a 'Learn as you go" experience. There is not any one way that works for everybody. One thing that I want to offer is that your daughter's transplant team will guide you on her after surgery care. They will be teaching you during the post surgery recovery, and will continue to do so when she returns home.
I love your image of having a cup of coffee and talking/listening to someone. That is what we want members to be comfortable with as they offer support and receive encouragement from others who have similar experiences. I want to help you to connect you with others who are like you and talking about transplants. Did you know that all transplant patients/caregivers no matter which organ, have similar fears, needs, and concerns?
I understand how the tech part of communicating can be confusing. So Here is ath link to the Transplant Support Group Discussiions. If you click on the blue link, you will have access to all of the transploant related discussion groups. You are welcome to make a comment or question on any of them.
- Transplant Support Group https://connect.mayoclinic.org/group/transplants/
To get you started, I am going to invite you to the discussion,SPK (simultaneous pancreas and kidney) transplants. You can simply respond to my posted comment. I'll be looking forward to coffee and some transplant conversation. Oh, I do like my coffee black!
@mariancauwel, I am glad that my suggesti0n was helpful for you. I thing that anything that makes day-to-day life less stressful for a caregiver is worth a try. Be assured that you are going thru a 'Learn as you go" experience. There is not any one way that works for everybody. One thing that I want to offer is that your daughter's transplant team will guide you on her after surgery care. They will be teaching you during the post surgery recovery, and will continue to do so when she returns home.
I love your image of having a cup of coffee and talking/listening to someone. That is what we want members to be comfortable with as they offer support and receive encouragement from others who have similar experiences. I want to help you to connect you with others who are like you and talking about transplants. Did you know that all transplant patients/caregivers no matter which organ, have similar fears, needs, and concerns?
I understand how the tech part of communicating can be confusing. So Here is ath link to the Transplant Support Group Discussiions. If you click on the blue link, you will have access to all of the transploant related discussion groups. You are welcome to make a comment or question on any of them.
- Transplant Support Group https://connect.mayoclinic.org/group/transplants/
To get you started, I am going to invite you to the discussion,SPK (simultaneous pancreas and kidney) transplants. You can simply respond to my posted comment. I'll be looking forward to coffee and some transplant conversation. Oh, I do like my coffee black!
@rosemarya Thank you so much for your support Is so great to know your out there, I am going to keep a journal starting the day we receive the call, Marlo and I are packing our bag for the hospital. Marlo has excellent communication with the Mayo Staff, our experience is they are so kind. Been doing de-cluttering, it’s a good thing. Just know if I can offer encouragement or support to anyone, I will, having our Faith gives us strength too. I love my coffee black, a few great strawberries and a small pecan pastry. Not all the time of course but once in a while..have a great weekend.
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2 Reactions@brishawn24 @scoutmaster185 @mariancauwel - Here is an article from the Mayo Transplant
Blog/newsfeed article that was created from contributions by members in the Organ Transplant Group:
- What to Expect as a Transplant Caregiver
https://connect.mayoclinic.org/blog/transplant/newsfeed-post/what-to-expect-as-a-transplant-caregiver/
@brishawn24, It is not at all unusual for liver disease to creep up since symptoms are often 'silent' and go undiagnosed until there is already damage to the liver. My liver disease was caught by my very observant primary care doctor during my routine annual check-up. After referral during and monitoring with a gastroenterologist(GI) I lived relatively symptom-free for nearly 8 years before my physical health declined and I was evaluated for my transplant.
@scoutmaster185, I am a liver and kidney transplant recipient. I had my transplant at Mayo Rochester in 2009 with my husband as my caregiver. I know that it is an all-the-time stress to your mind and body, and I remember that it was for my husband, too. I would encourage you to focus only on the household duties that are a "Must".
I know that one of the most difficult things to do is to ask for help, but this is essentual for you to consider. My girlfriends used to come to visit with me while my husband ran errands or went for a jog. Have you given any thought to the kind of help that you would appreciate?
@mariancauwel, Has your daughter been evaluated yet for the transplant listing? If she is a Mayo patient, there are some online support groups available.
I want to invite all of you to this support group.
-Transplant Caregiver Advice: Got Tips to Share?
https://connect.mayoclinic.org/discussion/transplant-caregiver-advice-got-tips-to-share/?
I know that the 3 of you are new to the transplant journey. How about we each pour a cup of tea , grab a snack, and meet in this group with other transplant patients and caregivers. Hope to see you there.
-
Like -
Helpful -
Hug
5 ReactionsI am using an AARP Family Caregivers site on FB and it has a wealth of information. Although it is for dementia, it also covers lots of behavioral (and body) changes from being ill, hospitalized and needing help. My husband's UTI and other diabetic complications have made it quite a ride in our household. Their advice has been like an easy reference.
-
Like -
Helpful -
Hug
7 ReactionsHello all: I am new to this group and new to taking care of my husband recently diagnosed with dementia and find myself having difficulty finding the patience in dealing with the repeated asking of the same questions over and over, sometimes this happens in the same hour. Is this because he cannot remember the answer that I just gave him? Also, he is hard of hearing. We purchased hearing aids, and he will not wear them. I want to understand so that I do not get so frustrated. He is in the early stages and is on Aricept. Hoping to slow the progression. He is very functional, showers, fixes his breakfast and lunch. Just gets very confused with other simple tasks. Any suggestions would be helpful. Thank you.
-
Like -
Helpful -
Hug
1 Reaction@nadkisson Welcome to Mayo Clinic Connect! I’m so glad you found us. Many others have also mentioned the difficulty of the repeated question-asking. Have you found a Caregivers Support group in your area? Talking with others can really be helpful for you. Also, just reading through this entire discussion will give you lots of hints.
What is the best thing you have found in caring for you husband with dementia?
-
Like -
Helpful -
Hug
3 ReactionsHi @scoutmaster185, I'd like to add my welcome. You may also be interested in this discussion specific to transplant caregivers:
- Transplant Caregiver Advice: Got Tips to Share?
https://connect.mayoclinic.org/discussion/transplant-caregiver-advice-got-tips-to-share/
-
Like -
Helpful -
Hug
4 ReactionsWelcome to the group! It's been helpful to me in countless ways and I hope it helps you, too. First, to annswer your question about him not remembering what you told him a fewhn minutes earlier...yes. He doesn't remember. It can be hard to get used to at first. I used to think he was ignoring my responses to his questions or that he didn't hear me. Nope. It's the disease. He's still in there, though. Try to remember that. One thing I found extremely helpful is to think of my husband as an emotional sponge. His memory is shot, but he can read and reflect emotions like never before. That means if I am even slightly annoyed with him or frustrated, he takes those emotions in and amplifies them back. That's bad news for both of us. I found it better to do my best to keep my cool no matter what. I can fall apart at a later time, but not when he's nearby. I don't think of this as being emotionally dishonest. I'm being as loving as I can with our situation as it is. I'm recognizing our new reality.
-
Like -
Helpful -
Hug
7 Reactions@rosemarya hi! This is mariancauwel, my daughter is on the list, pancrease and kidney, I am still trying to navigate the tech stuff to really talk back and forth, I loved what you said about only do the must in the housekeeping I am trying to sterilize and what I really need is a friend caregiver that I can turn to, have a coffee and talk and listen as to how to help Marlo get thru this in the best outcome ways. Thank you for being my friend that I can’t see, just great to know ur not alone. We have a deep Faith but just nice to turn to someone who knows. Thank you.
-
Like -
Helpful -
Hug
4 Reactions@mariancauwel, I am glad that my suggesti0n was helpful for you. I thing that anything that makes day-to-day life less stressful for a caregiver is worth a try. Be assured that you are going thru a 'Learn as you go" experience. There is not any one way that works for everybody. One thing that I want to offer is that your daughter's transplant team will guide you on her after surgery care. They will be teaching you during the post surgery recovery, and will continue to do so when she returns home.
I love your image of having a cup of coffee and talking/listening to someone. That is what we want members to be comfortable with as they offer support and receive encouragement from others who have similar experiences. I want to help you to connect you with others who are like you and talking about transplants. Did you know that all transplant patients/caregivers no matter which organ, have similar fears, needs, and concerns?
I understand how the tech part of communicating can be confusing. So Here is ath link to the Transplant Support Group Discussiions. If you click on the blue link, you will have access to all of the transploant related discussion groups. You are welcome to make a comment or question on any of them.
- Transplant Support Group
https://connect.mayoclinic.org/group/transplants/
To get you started, I am going to invite you to the discussion,SPK (simultaneous pancreas and kidney) transplants. You can simply respond to my posted comment. I'll be looking forward to coffee and some transplant conversation. Oh, I do like my coffee black!
-
Like -
Helpful -
Hug
3 Reactions@rosemarya Thank you so much for your support Is so great to know your out there, I am going to keep a journal starting the day we receive the call, Marlo and I are packing our bag for the hospital. Marlo has excellent communication with the Mayo Staff, our experience is they are so kind. Been doing de-cluttering, it’s a good thing. Just know if I can offer encouragement or support to anyone, I will, having our Faith gives us strength too. I love my coffee black, a few great strawberries and a small pecan pastry. Not all the time of course but once in a while..have a great weekend.
-
Like -
Helpful -
Hug
5 Reactions