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?

@pattyinal

We first noticed mild memory loss, missing appointments, meetings etc.? in 2006. At that time he was also diagnosed with severe sleep apnea. He took early retirement in 2007. Neurologist agreed with us that years of oxygen deprivation could possibly have been the initial source of his dementia issues. Since that time, he uses a CPAP every day, but the cognitive decline has continued gradually, until the last couple of years when the memory loss has become more severe. Now, he cannot tell time, cannot do any of the handyman jobs he used to do, struggles to find the word for objects, cannot remember that he already ate, or has not had a bath or brushed his teeth. He does still dress himself, but would wear the same clothes every day, if I didn’t remove them from his closet. He knows that he cannot remember, and usually asks me for answers, but then is often sure I’m mistaken. He knows he is dependent on me, yet is very protective of me and hardly wants me out of his sight. Probably more than you wanted to know, but so far, we make a pretty good team and I certainly know that our difficulties don’t even compare to those of so many others.

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Good morning @pattyinal Never too much information in this discussion! Caregiving can be so intensely isolating, at least it was for me, that sharing can be a worthwhile outlet for some of that isolation.

I can fully appreciate your comment regarding your husband not wanting you out of his sight. That was 100% true with my wife. I do believe she would call my name over a hundred times a day when I was not at her bedside. She, too, knew she was dependent on me and I believe (although she never told me so) she was afraid of what would happen to her and her needs if I was not there for her.

Funny story — rom her hospital bed we had to add at home when she was in home hospice she could see the bathroom in the hall I would use. She would beg me to keep the door ajar so she could see that I was in there. I was out one day grocery shopping and there was an art sale on the sidewalk. I saw a painting that was done in purples (my favorite color). It was abstract blocks and then in the center was a human eye peering out from the blocks. It reminded me of the bathroom door routine so I bought it and hung it on the wall — in that bathroom above the toilet! It is still there, although I do shut the door these days 🙂 Seeing it all the time helped me keep in mind that so often it was the disease running things in our lives and not her.

Glad to read you see yourself as a good team! Huge help in caregiving, too — as you know! Good to also read your husband can do some of his daily routine, such as dressing himself. My wife lost that ability pretty early so I went to a rotation of several of here favorites since routine was also incredibly important to her at all times. We even named each outfit — we had 'pinky', 'flowers', 'greenie', etc. I hold up two and give her the choice, which she liked since it gave her a tiny sense of being in control of something in a life totally out of her control.

I hope your day and week ahead are solid and that the sun is shining wherever you and your husband are!

Strength, courage, and peace!

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I agree–never too much information in this discussion. This is my 22nd year as a family caregiver and I am quite isolated. To counter this, I stay in touch with friends via email, Facebook, and attending some events. Getting out lifts my spirits.

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@debbraw

Hi @pattyinal – It sounds as if you have been dealing with this for a long time. My heart goes out to you. Just wanted to pass along something I learned recently that may or may not help. Our local hospice will provide help with anyone diagnosed with dementia – it does not mean they are at the end of life. They do it because dementia is progressive – and their services are free. Also, our local Council on Aging (COA) has been a tremendous resource for me in terms of caregiver support. Do you have hospice and/or COA in your area?

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Great suggestion, @debbraw I know each hospice organization is different, but the only caveat I would add to this for @pattyinal is to be sure to check with her hospice, insurance, etc. very carefully on any costs on this. In our case my wife's hospice care was only covered after it was officially prescribed by her physician. Then once prescribed be certain your choice is 'in network'.

I only bring this up as a cautionary tale given that I am continuing to pay down what was over $40,000 in uncovered expenses from early on with our hospice.

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@pattyinal

We first noticed mild memory loss, missing appointments, meetings etc.? in 2006. At that time he was also diagnosed with severe sleep apnea. He took early retirement in 2007. Neurologist agreed with us that years of oxygen deprivation could possibly have been the initial source of his dementia issues. Since that time, he uses a CPAP every day, but the cognitive decline has continued gradually, until the last couple of years when the memory loss has become more severe. Now, he cannot tell time, cannot do any of the handyman jobs he used to do, struggles to find the word for objects, cannot remember that he already ate, or has not had a bath or brushed his teeth. He does still dress himself, but would wear the same clothes every day, if I didn’t remove them from his closet. He knows that he cannot remember, and usually asks me for answers, but then is often sure I’m mistaken. He knows he is dependent on me, yet is very protective of me and hardly wants me out of his sight. Probably more than you wanted to know, but so far, we make a pretty good team and I certainly know that our difficulties don’t even compare to those of so many others.

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Being a caregiver is being a caregiver. Your line about some having greater difficulries isnt even an issue. When all of us are caring for those we care about, its just our life. Its on and off hard, rewarding, frustrating, exhausting and so on. When any of us read the weight of care giving in these share pages there is a recognition that we are doing a difficult thing but it is our love for these folks that brings us here. Many care givers have to dig deep to find that love and some are trapped. But, here, we're all in it together. My wife often wss concerned that she was destroying my life. Now I look back and know its probably the finest thing I've ever done.

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@colleenyoung

Hi @19lin @aasthapuri @adri @bbams @besrus5 @bina @burrkay @charlena @chesneydell1965 @clayton48 @coladyrev @dawn_giacabazi @dawn0202 @eaglesview @IndianaScott @jeannie2 @jennyjones38 @jhammer @js119 @lindagee @lisa_sj9 @saltyfrog @shellsk24 @soul @sylviapf @tavi @ters1993
I’d like to invite you to the new Caregivers group. It’s a space where we can share the ups and downs of caregiving, honestly and openly without judgement. Whether you’re caring for someone with dementia, cancer, heart problems or whatever, please join us. Pull up a chair and tell us a bit about yourself.

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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

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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For kw1904861, honestly, after going through 16 years of brain injury and the death of a daughter and 7 years of illness and death of a spouse there's not much advise that I got that changed the situation. Every body has a different set point about when enough is enough and we dont get a manual at birth that tells us where it is. The only "advise" I can offer is to make yourself knowledgeable about resources, make yourself available to real friends who can listen well or find a support group where you'll meet like minded people in the same kind of unexpected twist to life we here have had daily. Keep track of how well you sleep, how safe you are in the house and whether you can maintain your own health. Without those three (there's probably more) you are in decline and need help for yourself.

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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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Hi @kw1904861 Nice to have you here and glad you found Mayo Connect! We are open to all and pleased you have come here to share and hopefully find some support. I'm Scott and I was my wife's caregiver for 14+ years. She fought her war with brain cancer and while each patient and their condition is different, I know how challenging brain injury caregiving can be! Luckily for me she never got combative, but my son's FIL did when he struggled with dementia.

In my wife's situation her neurologist once told us that patients tend to lash out at the person they feel the safest with. It is the person they believe they can show their emotions to and still be supported by. Seems counterintuitive, but after awhile it made sense to me. My wife often became angry with me. Often it was over some tiny thing, perhaps something I had overlooked, or simply something she thought I had! When this happens with our loved ones it is never easy to keep saying to ourselves, and believing, that it is the disease 'talking' and not our loved one. But chronic disease is a beast and does take its toll on even the strongest of patients — and caregivers.

Caregiving is a tough job and when it is not tough it either tougher or the toughest! We can each only do what we are able to. In my son's case they made decision to move his FIL to a faciltity since he was too large and too aggressive for his wife to be able to handle. I wish I had some magic advice, but what I can say is to remember that Superman and Wonder Woman only exist in the comics! There are no superheroes in caregiving. We are only human!

Are there certain aspects of caregiving that you struggle with more than others?

Stength, courage, and peace!

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@IndianaScott

Hi @kw1904861 Nice to have you here and glad you found Mayo Connect! We are open to all and pleased you have come here to share and hopefully find some support. I'm Scott and I was my wife's caregiver for 14+ years. She fought her war with brain cancer and while each patient and their condition is different, I know how challenging brain injury caregiving can be! Luckily for me she never got combative, but my son's FIL did when he struggled with dementia.

In my wife's situation her neurologist once told us that patients tend to lash out at the person they feel the safest with. It is the person they believe they can show their emotions to and still be supported by. Seems counterintuitive, but after awhile it made sense to me. My wife often became angry with me. Often it was over some tiny thing, perhaps something I had overlooked, or simply something she thought I had! When this happens with our loved ones it is never easy to keep saying to ourselves, and believing, that it is the disease 'talking' and not our loved one. But chronic disease is a beast and does take its toll on even the strongest of patients — and caregivers.

Caregiving is a tough job and when it is not tough it either tougher or the toughest! We can each only do what we are able to. In my son's case they made decision to move his FIL to a faciltity since he was too large and too aggressive for his wife to be able to handle. I wish I had some magic advice, but what I can say is to remember that Superman and Wonder Woman only exist in the comics! There are no superheroes in caregiving. We are only human!

Are there certain aspects of caregiving that you struggle with more than others?

Stength, courage, and peace!

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The struggle of care giving I think I have with him is the name calling.,.. I my self struggle with depression and It does bother me…

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@kw1904861

The struggle of care giving I think I have with him is the name calling.,.. I my self struggle with depression and It does bother me…

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That is a tough one @kw1904861 Very tough. My wife often resorted to name calling as well as complaining to others that I was the worst caregiver in the world for some reason or another often using some very hurtful language in doing so. I'd tell myself it was 'the disease' talking, but it often still hurt!

One day my wife did say to me, in an unguarded moment, how afraid she was 'all day long, all the time, week in week out'. That did help me manage it a bit better, but it still stung each time it happened. It also came home to roost with me when I happened catch my hand between the door and the frame when she fell against it. I was angry, let loose with a few not so choice words, and said how much I hurt. She smiled at me and said 'sorry, but maybe now you know how I feel everyday'. It helped me gain a bit of missing perspective on my part. 🙂

For a good part of my work career I was a fundraiser for nonprofit organizations. I used to say being a fundraiser gave me thick skin since I got told 'no' so many times, but it surely wasn't thick enough for some of these things in caregiving.

I remember once she was angry with me and was sputtering trying to come up with whatever name she was going to call me. She finally spit out 'you, you, you, non-Italian!' (She was 100% Italian and I was the first non-Italian to ever marry into the family.) After she said it we both just stared at each other and then started to laugh! At least that once we found humor in the situation!

If you don't mind me asking, how long have you been caring for your husband?

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@IndianaScott

Great suggestion, @debbraw I know each hospice organization is different, but the only caveat I would add to this for @pattyinal is to be sure to check with her hospice, insurance, etc. very carefully on any costs on this. In our case my wife's hospice care was only covered after it was officially prescribed by her physician. Then once prescribed be certain your choice is 'in network'.

I only bring this up as a cautionary tale given that I am continuing to pay down what was over $40,000 in uncovered expenses from early on with our hospice.

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Wow @IndianaScott – That is terrible that you have that kind of residual bills – and from Hospice. I had no idea. Thank you so much for raising this issue.

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@IndianaScott

That is a tough one @kw1904861 Very tough. My wife often resorted to name calling as well as complaining to others that I was the worst caregiver in the world for some reason or another often using some very hurtful language in doing so. I'd tell myself it was 'the disease' talking, but it often still hurt!

One day my wife did say to me, in an unguarded moment, how afraid she was 'all day long, all the time, week in week out'. That did help me manage it a bit better, but it still stung each time it happened. It also came home to roost with me when I happened catch my hand between the door and the frame when she fell against it. I was angry, let loose with a few not so choice words, and said how much I hurt. She smiled at me and said 'sorry, but maybe now you know how I feel everyday'. It helped me gain a bit of missing perspective on my part. 🙂

For a good part of my work career I was a fundraiser for nonprofit organizations. I used to say being a fundraiser gave me thick skin since I got told 'no' so many times, but it surely wasn't thick enough for some of these things in caregiving.

I remember once she was angry with me and was sputtering trying to come up with whatever name she was going to call me. She finally spit out 'you, you, you, non-Italian!' (She was 100% Italian and I was the first non-Italian to ever marry into the family.) After she said it we both just stared at each other and then started to laugh! At least that once we found humor in the situation!

If you don't mind me asking, how long have you been caring for your husband?

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He fell last august…. So going on almost a year now…

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@kw1904861

He fell last august…. So going on almost a year now…

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Hi again, @kw1904861 I am so sorry to read that his troubles began with a fall.

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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

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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If your son knows the Lord, and have ask him to come to live in heart and accept him as his savior, then only God knows when he will take him. Pray for your husband because, he needs your faith and strength. It is those who are left behind, that suffer most. You need your faith ,and your love for God to give you peace in all that you do. Prayers for you are here for you.

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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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My thoughts and prayers are with you and your family. We dealt with a very similar situation with my mother-in-law. She was in end stage renal failure and along with osteoporosis was no longer able to care for herself. She decided that she was stopping her dialysis. Her mental faculties were impaired because of the kidney damage and thought if she stopped the dialysis she had to stop all medications including pain meds. She decided to do this just before the Christmas holidays.

I had a talk with her and told her that if she was truly ready to end her life that was her decision however I wanted her to think about those around her that would be affected by it. I asked her to think about her son and daughter and her grandsons and how it would affect them to lose her at Christmas. I reminded her that her death at Christmas would make a very happy family time a very sad time for a very long time. I lost my Dad at Christmas many years before and it affected me deeply. I also told her that she could stop dialysis but continue her medications. She wouldn't listen to me.

I talked with my husband and we decided to contact Hospice for advise. We didn't ask them to get involved, we just wanted information. However, they immediately visited her at the nursing facility and we hadn't even talked to her about getting them involved. The Hospice nurse immediately got her set up on morphine for the pain. The nurse also let her know she could continue her medications even though she stopped dialysis. We already knew that stopping the dialysis could be a painful process especially when her body began filling up with fluids and toxins that were no longer being cleaned from her system.

We visited her to discuss Hospice and saw that the morphine was giving her much needed relief from her pain. She had decided that her family was trying to stop her from doing what she wanted. She told us that the facility staff had contacted Hospice for her. We told her that we had contacted them for her because we wanted her to be comfortable.

She passed away on January 9, 2000. She was able to spend a final Christmas with her children and grandchildren enjoying each other's company and for a short while being the Mom and Grandma that we all remembered so well.

My heart goes out to your husband. I'm sure he would prefer to be with you and his son but I understand not being able to be around all the stress. Maybe you can go home for a day or two so he can see for himself that you are doing fine. I hope your son will allow Hospice to just come talk to him about what they can do for him and the family. They can be an invaluable source of assistance and guidance for all of you.

Hugs and Prayers.

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