Meet fellow Caregivers - Introduce yourself

Welcome to the Caregivers group on Mayo Clinic Connect.
Caring for someone can be rewarding, but it is also very demanding and can be isolating. Let’s use this space to connect with other caregivers, share experiences, talk frankly about the tough stuff without judgement and to provide a virtual shoulder to lean on.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. I look forwarding to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.

Grab a cup of tea, or beverage of you choice, and let’s chat. Why not start by introducing yourself?

@hotfooted

Hello to other Caregivers… I've been on Connect for about a year now, but mostly for learning more about Diabetes and Neuropathy.. I was recently diagnosed Diabetic Type 2 and have neuropathy in both feet.. and moving up my legs now.. My husband had been helping me through my new illness, but now our oldest son's Diabetes and Parkinson's have effected him to the point that he said he is ready to stop dialysis. He lives in another state, is not married but has a caregiver who comes in every day to help him with meds, meals, etc. His only child, a daughter (28 years old) lives with him at present, too.. She works full time at a stressful job.. and now I've been here for a month to help him through all his preparations for dying. Some of his friends were here yesterday to have a meal and reminesce old times for one last time.. He has another set of friends that he would like to come see him also, before he stops dialysis. Needless to say, this is a sad sad time for all of us who know and love him..

My main concern for him right now is this: We've been told that by stopping dialysis he will have an easy painless passing.. But if his body begins filling up with fluids that he will suffocate slowly. Of course, as his mom I pray for him to pass on without pain.. and please God, not to suffocate slowly. Hospice has been contacted, but he has declined them starting with him so far. I have talked with him about this, but he does make his own decisions.. He said he doesn't want them in and out of the house to see him. He can't seem to understand that it doesn't have to be that way, but would be a big help emotionally for the rest of us, too..

My son has been hard to get along with for most of his adult life, but now, with our time together we have become so much closer than we were since he was a child. That has been a huge reward for both of us.. We talk openly and freely about his dying and what he wants us all to know now. His daughter has always been dominated by him, but also is ready to get on and live her own life. Her mother is not much part of her life and never has been, but I and her grandpa have always been here for her and she relies on us to be her family.. Of course, we are in our mid-70's and hope to see her with a loving partner someday.. She is bipolar, but on medication and in a program that has already helped her immensely.. She is responsible, cute, and reliable.. and very cautious about who she allows into her life. She has a very responsible job and the company and workmates respect and rely on her technical abilities.

This is the absolute hardest thing I've ever had to do, but I am determined to be here for my little family for the duration. They mean everything to me in this life. but meanwhile, my sweet ole husband is living alone in the next state and I miss him so much. He must be at home though, as he requires peace and quiet. It is far too disruptive for all of us when he is here… sigh…

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Hello @hotfooted What a terribly difficult position to be in. Caregiving has a way of demanding the unthinkable of us at times. I am very sorry to read of your son's health prognosis and how it is effecting so many in your family.

I know it is very difficult to change a patient's mind as a caregiver. In my wife's situation we had a very understanding physician who we could talk to and who would then talk seriously with her to help her understand what he believed was the best for her care and comfort. Often times coming from her trusted doctor made all the difference, especially when it came to talking about the realities of what was to come due to her disease.

Just my two cents based on what helped my wife and us at the most difficult times.

Strength, courage, and peace

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@hotfooted

Hello to other Caregivers… I've been on Connect for about a year now, but mostly for learning more about Diabetes and Neuropathy.. I was recently diagnosed Diabetic Type 2 and have neuropathy in both feet.. and moving up my legs now.. My husband had been helping me through my new illness, but now our oldest son's Diabetes and Parkinson's have effected him to the point that he said he is ready to stop dialysis. He lives in another state, is not married but has a caregiver who comes in every day to help him with meds, meals, etc. His only child, a daughter (28 years old) lives with him at present, too.. She works full time at a stressful job.. and now I've been here for a month to help him through all his preparations for dying. Some of his friends were here yesterday to have a meal and reminesce old times for one last time.. He has another set of friends that he would like to come see him also, before he stops dialysis. Needless to say, this is a sad sad time for all of us who know and love him..

My main concern for him right now is this: We've been told that by stopping dialysis he will have an easy painless passing.. But if his body begins filling up with fluids that he will suffocate slowly. Of course, as his mom I pray for him to pass on without pain.. and please God, not to suffocate slowly. Hospice has been contacted, but he has declined them starting with him so far. I have talked with him about this, but he does make his own decisions.. He said he doesn't want them in and out of the house to see him. He can't seem to understand that it doesn't have to be that way, but would be a big help emotionally for the rest of us, too..

My son has been hard to get along with for most of his adult life, but now, with our time together we have become so much closer than we were since he was a child. That has been a huge reward for both of us.. We talk openly and freely about his dying and what he wants us all to know now. His daughter has always been dominated by him, but also is ready to get on and live her own life. Her mother is not much part of her life and never has been, but I and her grandpa have always been here for her and she relies on us to be her family.. Of course, we are in our mid-70's and hope to see her with a loving partner someday.. She is bipolar, but on medication and in a program that has already helped her immensely.. She is responsible, cute, and reliable.. and very cautious about who she allows into her life. She has a very responsible job and the company and workmates respect and rely on her technical abilities.

This is the absolute hardest thing I've ever had to do, but I am determined to be here for my little family for the duration. They mean everything to me in this life. but meanwhile, my sweet ole husband is living alone in the next state and I miss him so much. He must be at home though, as he requires peace and quiet. It is far too disruptive for all of us when he is here… sigh…

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@hotfooted Thank you for coming here to share your new reality. It must be terribly lonely for you, to not have your husband by your side as a united front. My guess is that both he and your son are missing the opportunity to bond like you are with your son.

That was a difficult decision for your son to make. Perhaps a trusted medical person can explain to him what will realistically happen when he stops dialysis, and offer information on palliative care and hospice. As has been said, hospice can tailor their care. And don't forget they ware also there for you, your husband, and granddaughter regardless of what your son decides.

I hope you can get a few days away to see your husband, for both of your sakes. You will return with renewed purpose. I'm glad you have a closer relationship now, and in your talks, you can express lovingly, how you feel about his decisions. He may choose to see how his decisions affect so many.

We're here for you, We care.
Ginger

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Ginger, thank you for your kind words and understanding. Today I just feel quiet and alone.. My son is still sleeping and I've had my own breakfast and meds, but woke up too early.. I guess this is a time to heal and prepare for what comes next. And a nice quiet time for prayer this morning….

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@IndianaScott

Hello @hotfooted What a terribly difficult position to be in. Caregiving has a way of demanding the unthinkable of us at times. I am very sorry to read of your son's health prognosis and how it is effecting so many in your family.

I know it is very difficult to change a patient's mind as a caregiver. In my wife's situation we had a very understanding physician who we could talk to and who would then talk seriously with her to help her understand what he believed was the best for her care and comfort. Often times coming from her trusted doctor made all the difference, especially when it came to talking about the realities of what was to come due to her disease.

Just my two cents based on what helped my wife and us at the most difficult times.

Strength, courage, and peace

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Good morning John.. I have read about your wife's long illness and your caregiving for her.. What a blessing you were to each other through it all.. Thank you for the encouragement…

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Cindyt63, thank you for telling me about your families way of dealing with the mom.. My son still lives at his home, and he feels like Hospice coming in would be an invasion of his privacy, I guess.. Anyway, I hope he will let them become involved before long.. Did your mom suffer after stopping dialysis?

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@hotfooted

Hello to other Caregivers… I've been on Connect for about a year now, but mostly for learning more about Diabetes and Neuropathy.. I was recently diagnosed Diabetic Type 2 and have neuropathy in both feet.. and moving up my legs now.. My husband had been helping me through my new illness, but now our oldest son's Diabetes and Parkinson's have effected him to the point that he said he is ready to stop dialysis. He lives in another state, is not married but has a caregiver who comes in every day to help him with meds, meals, etc. His only child, a daughter (28 years old) lives with him at present, too.. She works full time at a stressful job.. and now I've been here for a month to help him through all his preparations for dying. Some of his friends were here yesterday to have a meal and reminesce old times for one last time.. He has another set of friends that he would like to come see him also, before he stops dialysis. Needless to say, this is a sad sad time for all of us who know and love him..

My main concern for him right now is this: We've been told that by stopping dialysis he will have an easy painless passing.. But if his body begins filling up with fluids that he will suffocate slowly. Of course, as his mom I pray for him to pass on without pain.. and please God, not to suffocate slowly. Hospice has been contacted, but he has declined them starting with him so far. I have talked with him about this, but he does make his own decisions.. He said he doesn't want them in and out of the house to see him. He can't seem to understand that it doesn't have to be that way, but would be a big help emotionally for the rest of us, too..

My son has been hard to get along with for most of his adult life, but now, with our time together we have become so much closer than we were since he was a child. That has been a huge reward for both of us.. We talk openly and freely about his dying and what he wants us all to know now. His daughter has always been dominated by him, but also is ready to get on and live her own life. Her mother is not much part of her life and never has been, but I and her grandpa have always been here for her and she relies on us to be her family.. Of course, we are in our mid-70's and hope to see her with a loving partner someday.. She is bipolar, but on medication and in a program that has already helped her immensely.. She is responsible, cute, and reliable.. and very cautious about who she allows into her life. She has a very responsible job and the company and workmates respect and rely on her technical abilities.

This is the absolute hardest thing I've ever had to do, but I am determined to be here for my little family for the duration. They mean everything to me in this life. but meanwhile, my sweet ole husband is living alone in the next state and I miss him so much. He must be at home though, as he requires peace and quiet. It is far too disruptive for all of us when he is here… sigh…

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@hotfooted This is such a difficult time for you and the whole family. I’m so sorry. Hospice is still a good idea for you and your granddaughter. You could sit and talk with them and explain about your son. Mostly, they could come in for you because you also need guidance and support. You might even request the quietest nurse they have. When your son becomes aware that they’ve been in the house helping you and his daughter, he may change his mind. They can manage end of life situations and pain management if he had any discomfort. As an oncology nurse (also worked in renal care), I saw that most patients went to sleep the last few days of life. I hope all the suggestions on MayoClinicConnect will be of some help you.
One last thought: is it possible for your husband to come to your son’s home on weekends? Can someone drive him? I really think he needs to be there. Best thoughts for all of you

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This week's Member Spotlight features @Cindylb, a fellow member, patient and caregiver. Get to know more about @cindylb, her Connect experiences and how getting support from all of you helps. You'll also get a glimpse of Cindy and what she enjoys offline, too.

– Sustained on Her Journey by Connect Members: Meet @cindylb https://connect.mayoclinic.org/page/about-connect/newsfeed-post/sustained-on-her-journey-by-connect-members-meet-cindylb/

Subscribe (+Follow) to the About Connect page https://connect.mayoclinic.org/page/about-connect/ and see new member spotlights published every 2 weeks.

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My name is Linda and I’m the caregiver for my husband. He has non-Hodgkins lymphoma. He is in the middle of his chemo treatments and the side effects
have been severe. I want to help him and hope to learn from others the best way to do that.

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@berrylady Welcome back to MayoClinicConnect. I’m really sorry about you husband and his reaction to chemo. It’s never pleasant. Do his oncologists know that the side effects are severe? Try to write down each side effect he has and how it affects him day to day. If he can’t eat due to nausea and vomiting, has he lost any more weight? Is he too exhausted to get himself dressed? Once you done this (looking at every hour of his day), call the doctor’s office and make an appointment to discuss this. They can tell you what they specifically want you to do. They may even lower the chemo dose. The oncology office near me has an ‘activities of daily living’ scale which they can use to track how your husband is doing. Remember, just being there and caring for him is the greatest help you can give. I hope things go better for you both. Will you please, get back in touch with us and let us know how you’re doing?

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@berrylady

My name is Linda and I’m the caregiver for my husband. He has non-Hodgkins lymphoma. He is in the middle of his chemo treatments and the side effects
have been severe. I want to help him and hope to learn from others the best way to do that.

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hi @berrylady, I second the tips that @becsbuddy shared with you. When monitoring my dad's side effects from chemo, my mom found the symptom tracker from the American Cancer Societyto be helpful. It helped put her mind at ease that she wasn't missing anything. Here's the link:
– Tools to Monitor Treatment https://www.cancer.org/treatment/treatments-and-side-effects/tools-to-monitor-treatment.html

What side effects have been the most challenging?

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@kw1904861

Hi.. Thanks for letting me join.. Not sure what to say… My husband has brain injury and I think its getting tuff around here… He's up and moving around when he's not sleeping… He's angry to me a lot.. Any advise. ?

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@kw1904861 I just thought I would check and see how things are going. All of the discussions in this group are filled with good points—have you had a chance to think about them? I’ve not been a caregiver so @jimwills and @IndianaScott are much more knowledgeable than me. Are you taking good care of yourself like @jimwills suggests?

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@becsbuddy

@kw1904861 I just thought I would check and see how things are going. All of the discussions in this group are filled with good points—have you had a chance to think about them? I’ve not been a caregiver so @jimwills and @IndianaScott are much more knowledgeable than me. Are you taking good care of yourself like @jimwills suggests?

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I havent had time yet.. To check it out.. I will.. Taking care of my self.. ? I hurt my self from lifting him off the floor… Im trying to take care….

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Oh no. You need to reach out. To someone. Hospice for one. They helped me when my husband started falling. Asking for help is the 1st good step to taking care…of you. I would love to hear your story. I am sure we all can listen and share our experiences and help to get through this journey. We are here for you.

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@dianajane

Oh no. You need to reach out. To someone. Hospice for one. They helped me when my husband started falling. Asking for help is the 1st good step to taking care…of you. I would love to hear your story. I am sure we all can listen and share our experiences and help to get through this journey. We are here for you.

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It all started last aug when my husband fell down our stairs and received some brain injury… He falls sometimes and im here to pick him up.. He gets around ok.. But i think should be doing better.. I did get him an appt with his dr. To talk with her bout his anger towards me.. To get him to go is another thing… Hes refusing therapy too..

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Thank you for sharing. What involved his initial fall? Did he trip? Dizziness? Was it 1st time? I really hope he agres soon to go to the doctor. Perhaps other family members could help talk with him and encourage him before he further compromises his health. Good luck.

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