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?

Welcome to everyone who has introduced themselves so far. Scott, you were right! We needed a caregivers group on Connect. I’m so glad we started it.
Here’s quick overview how to get the most out of this group.

1. Visit the group’s homepage regularly https://connect.mayoclinic.org/group/caregivers/
Here you can
– Follow the group. Click the FOLLOW button to receive email notices when a new message is posted.
– Browse all the discussions
– See all the members of the group https://connect.mayoclinic.org/group/caregivers/?tab=discussions To become a member, simply start following the group.

2. Start a new discussion
Now that you’ve met some of your fellow caregivers, I bet you have other things you’d like to talk to them about. Please start a new Discussion if you have a specific topic (beyond an intro) that you want to discuss (for example, “Dementia and caregiving” or “Time out for the caregiver” or “How do I manage her mood swings”). Here’s how to start a new discussion: https://connect.mayoclinic.org/get-started-on-connect/#how-to-start-discussion

3. Set your email preferences
Did you know you can decide how many Connect email notices you receive? Learn how to set your preferences here: https://connect.mayoclinic.org/get-started-on-connect/#how-to-set-preferences

Let me know if you have any questions. I look forward to getting to know you all better and sharing this special journey with you.
Colleen

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Hi Linda, thank you so much for the kind words and advice. I will try that when he’s done with work in a few hours (works remotely, SAYS he’ll go on disability Oct 1 but we shall see). Fingers crossed!!!

As far as your sister, if she ever needs someone to talk to that has been through the rough times and got through it then please feel free to private message me. Or if you’d like to talk offline about it please feel free to contact me.

I was diagnosed bipolar when I was 19 and was in the meds “guinnea pig” stage until I was 28 and it was HARD! Beyond hard. She put it so so well when she explained it! The way I try to explain how it feels, and people have said they understand more when I say this, is that I would see everyone around me who were “normal” and I just wouldn’t understand how they handled situations better than I did, how they dealt with things so well without being SO sad. Even simple things that then seemed huge to me. I didn’t understand “normal” until my meds started working consistently at 28. Mania was different. I never thought or cared about what the outside world saw when i was manic – racing thoughts led to talking about ridiculous things, acting with no thought of consequences, etc. I would struggle with taking meds when I was in a manic phase because I felt great. Like I could do anything (delusions of grandeur is also a manic trait as you probably know).

Saying things happen for a reason is SO cliche yet I think the only reason I’m able to be strong for my husband is because I got through something impossible and came out of that hole, which i never thought I would. My life was happy for a little while before another impossible situation was thrown at me. I told my husband once that maybe he has cancer because he was dragged into my bad luck with life. Rationally I know that’s ridiculous and actually pretty self absorbed but I feel like someone up there just wants to see how hard they can push until I break. I’m terrified of the day that I lose him and hoping it will be MUCH longer than the prognosis but that may be the breaking point. I’ve started therapy to start dealing with that now (I haven’t been to therapy since I became stable… just meds). Has your sister ever reached the point of stability or is she still trying different meds? I’m so sorry she is going through this and I’m so sorry you are too. I know how much of an effect my emotions had on my family and it breaks my heart that I put them through it for so many years. She is so lucky to have you. And it helps more than you could ever know. There were many times I was on the verge of suicide and the only reason I didn’t do it was the thought of what it would do to my family. I am alive because of their love and support. I know my husband was able to stay positive for 6 months because of the love and support of his friends and family. Hopefully he’ll get through this depression and that support will motivate him to fight again. I’ll let you know how the walk goes. Thank you so much again!!!

REPLY
@bbams

Hi Linda, thank you so much for the kind words and advice. I will try that when he’s done with work in a few hours (works remotely, SAYS he’ll go on disability Oct 1 but we shall see). Fingers crossed!!!

As far as your sister, if she ever needs someone to talk to that has been through the rough times and got through it then please feel free to private message me. Or if you’d like to talk offline about it please feel free to contact me.

I was diagnosed bipolar when I was 19 and was in the meds “guinnea pig” stage until I was 28 and it was HARD! Beyond hard. She put it so so well when she explained it! The way I try to explain how it feels, and people have said they understand more when I say this, is that I would see everyone around me who were “normal” and I just wouldn’t understand how they handled situations better than I did, how they dealt with things so well without being SO sad. Even simple things that then seemed huge to me. I didn’t understand “normal” until my meds started working consistently at 28. Mania was different. I never thought or cared about what the outside world saw when i was manic – racing thoughts led to talking about ridiculous things, acting with no thought of consequences, etc. I would struggle with taking meds when I was in a manic phase because I felt great. Like I could do anything (delusions of grandeur is also a manic trait as you probably know).

Saying things happen for a reason is SO cliche yet I think the only reason I’m able to be strong for my husband is because I got through something impossible and came out of that hole, which i never thought I would. My life was happy for a little while before another impossible situation was thrown at me. I told my husband once that maybe he has cancer because he was dragged into my bad luck with life. Rationally I know that’s ridiculous and actually pretty self absorbed but I feel like someone up there just wants to see how hard they can push until I break. I’m terrified of the day that I lose him and hoping it will be MUCH longer than the prognosis but that may be the breaking point. I’ve started therapy to start dealing with that now (I haven’t been to therapy since I became stable… just meds). Has your sister ever reached the point of stability or is she still trying different meds? I’m so sorry she is going through this and I’m so sorry you are too. I know how much of an effect my emotions had on my family and it breaks my heart that I put them through it for so many years. She is so lucky to have you. And it helps more than you could ever know. There were many times I was on the verge of suicide and the only reason I didn’t do it was the thought of what it would do to my family. I am alive because of their love and support. I know my husband was able to stay positive for 6 months because of the love and support of his friends and family. Hopefully he’ll get through this depression and that support will motivate him to fight again. I’ll let you know how the walk goes. Thank you so much again!!!

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Beth, that is such a lovely and generous offer. Thank you! My sister has been stabilized and leading an uninterrupted life with a bipolar diagnosis for a couple of decades now. I will ask her if she would like to receive your email – I try to be careful to not look like I’m meddling or trying to fix something that is no longer broken. But I think it would be great for her to have someone to talk with who has experienced that vicious disease. I’m so glad you got yourself out of its clutches. When she first began to experience it, Lithium was the only thing available and its side effects were pretty awful for her. Sometimes I think the only thing that kept her in our lives was that our bipolar Dad took his own life when we were small and she had sworn never to do that no matter how bad it got. Lucky us that she made that promise and we still have such a delightful woman in our family!

Thanks again for your loving offer.

Linda

REPLY
@bbams

Hi Linda, thank you so much for the kind words and advice. I will try that when he’s done with work in a few hours (works remotely, SAYS he’ll go on disability Oct 1 but we shall see). Fingers crossed!!!

As far as your sister, if she ever needs someone to talk to that has been through the rough times and got through it then please feel free to private message me. Or if you’d like to talk offline about it please feel free to contact me.

I was diagnosed bipolar when I was 19 and was in the meds “guinnea pig” stage until I was 28 and it was HARD! Beyond hard. She put it so so well when she explained it! The way I try to explain how it feels, and people have said they understand more when I say this, is that I would see everyone around me who were “normal” and I just wouldn’t understand how they handled situations better than I did, how they dealt with things so well without being SO sad. Even simple things that then seemed huge to me. I didn’t understand “normal” until my meds started working consistently at 28. Mania was different. I never thought or cared about what the outside world saw when i was manic – racing thoughts led to talking about ridiculous things, acting with no thought of consequences, etc. I would struggle with taking meds when I was in a manic phase because I felt great. Like I could do anything (delusions of grandeur is also a manic trait as you probably know).

Saying things happen for a reason is SO cliche yet I think the only reason I’m able to be strong for my husband is because I got through something impossible and came out of that hole, which i never thought I would. My life was happy for a little while before another impossible situation was thrown at me. I told my husband once that maybe he has cancer because he was dragged into my bad luck with life. Rationally I know that’s ridiculous and actually pretty self absorbed but I feel like someone up there just wants to see how hard they can push until I break. I’m terrified of the day that I lose him and hoping it will be MUCH longer than the prognosis but that may be the breaking point. I’ve started therapy to start dealing with that now (I haven’t been to therapy since I became stable… just meds). Has your sister ever reached the point of stability or is she still trying different meds? I’m so sorry she is going through this and I’m so sorry you are too. I know how much of an effect my emotions had on my family and it breaks my heart that I put them through it for so many years. She is so lucky to have you. And it helps more than you could ever know. There were many times I was on the verge of suicide and the only reason I didn’t do it was the thought of what it would do to my family. I am alive because of their love and support. I know my husband was able to stay positive for 6 months because of the love and support of his friends and family. Hopefully he’ll get through this depression and that support will motivate him to fight again. I’ll let you know how the walk goes. Thank you so much again!!!

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Hi Beth, you’ll notice that I removed your personal email from the public discussion thread. We encourage members to use the private message function rather than to share your email online to protect you from unwanted spam. The private message is secure. Thanks.

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My 78 y/o wife was diagnosed with a glioblastoma stage on June 28, surgery to remove tumor was performed July . We decided to continue treatment at Mayo Clinic, Phoenix. She has completed 15 Radiation treatments concurrent with 21 days of Temodar chemo treatment. We will continue monthly visits to the clinic for MRIs treatment.

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My heart, love & prayers go out to each and everyone of you. @martyc2016 @19lin @aasthapuri @adri @bbams @besrus5 @bina @burrkay @charlena @chesneydell1965 @clayton48 @coladyrev @dawn0202 @eaglesview @IndianaScott @jeannie2 @jennyjones38 @jhammer @js119 @lindagee @lisa_sj9 @saltyfrog @shellsk24 @soul @sylviapf @tavi @ters1993 @lindabf. Caregiving is the most difficult job you each will ever have. Your kindness and tender care will draw your hearts closer to the ones you love. They may not express it to you in words but know you are making a huge difference in their lives. 🙂

My mother the most kind, gental, amazing woman at 60 came to me with a headache ( which was uncommon). I begged her to see a doctor. Stubbornly she ignored me for 3 days. The 3rd day she was crying, I angerly told her “dang it mom, please go to the er or see a doctor!! You can either go willingly or you will end up in there by 911. 🙁 The next morning @ 2am came the call from my brother. “I think mom had a stroke, she can’t get up or respond to me” I rush to the ER. The Doctor says ” She has to go!! 3 tumors, she has to go now!!” They life flighted her to a bigger hospital. I drove very quickly to her. The doctor showed me the MRI. Over a hundred fingers rapped her brain and through it. Tumors grew at the end of 3. Diagnosed with stage 4 glioblastoma. Surgery was certain to leave her unable to communicate or get out of bed. She decided quality over quantity. They did a biopsy but she awoke during the procedure. Was horrible but she finally woke up. Went through tramador chemo, radiation and passed away peacefully 5 months later. 🙁 I miss her every second of every day. But I am greatful I was able to tenderly care for her! I wouldn’t want that any other way for her. But that is not for everyone. Towards the end was very difficult and not graceful. That’s enough for now. Will discuss more details on a later post.

Much love
Dawn

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My mother has dementia. We noticed last year she had some signs that something wasn’t right and asked her if she was taking her meds, just doing things like laundry and making meals. My sister in law came to visit and confirmed she wasn’t doing anything I mentioned. I was having hip problems at the time and could not get around well. Took her to our family doctor and he said she was clean dressed nicely and talked with him about things. Said he didn’t see any problems. I went down every day to make sure she took her meds did her grocery shopping and wash. Found out she had bags of dirty laundry hidden around the house. Next she started forgetting about appointments would come down to take her only to find out she would be sleeping and not even ready. This was her hair appt. would call her 2 hours before an appointment so she would be ready. Then after she started going back to sleep and forgot that I even called her. She started not remembering current things. Wouldn’t even remember what she ate. Finally I was able to get her in a hospital too see what was going on. Found out she had a severe uti and they started treating her. Thought that might have been the problem. No not really. They transferred her to a nursing home for physical and occupational therapy. She stayed there 3 Weeks and they determined she needed more care then I could provide. During this time I had severe hip problems and could hardly get around. I was on pain medication for it but had to find a place for my mom. Couldn’t take her to my house because bathroom was upstairs and she was using a walker and couldn’t do steps. Dont know if I did the right thing but I called a place for mom to see if they could help. Actually made appointments for me to see the assisted living places. I did check out the reviews and one seemed pretty nice. We admitted her there. Now I am questioning myself if I picked the right one. Seems there are somethings that I am concerned about. One was there air conditioning not working the past week when it was really hot. It was not just her room it was other places. An aide told me to talk to the director when I did they blamed it on the patients why it was not working. I was there one day when it was off. It had tripped the circuit. Two days later it wasn’t working and by the end of the week still was not working. Also asked if a doctor had been in to see her at all. One was supposed to come in every 3 months to check on her. Asked the director said she has been there long enough he should have came said they would check never got an answer. Now I am wondering if this was the right place to put her. Maybe I am just feeling guilty I put her in there. My brother who lives in Texas never even came up to help with anything. I couldnt walk and my husband who has a slipped disk had to get everything moved out of her apartment. I felt at the time we were doing wrong. That she should have had some say to what she wanted to keep. Everybody said I was crazy. My husband felt the same way when he was getting rid of things. Months later she has been realizing that she has been there awhile and has started asking about certain things. Told her my son and daughter have most we kept a lot that thought she might want. She seemed to be happy about that. It’s just been hard and now a year later I am finally starting to get around better and spending more time with her. Worst of all I am feeling bad that I had to place her anywhere. My brother tells me if I didn’t she probably would have died already. its botherig me know because I feel I wasn’t capable enough to making important decisions and am questioning myself.

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@sma1952

My mother has dementia. We noticed last year she had some signs that something wasn’t right and asked her if she was taking her meds, just doing things like laundry and making meals. My sister in law came to visit and confirmed she wasn’t doing anything I mentioned. I was having hip problems at the time and could not get around well. Took her to our family doctor and he said she was clean dressed nicely and talked with him about things. Said he didn’t see any problems. I went down every day to make sure she took her meds did her grocery shopping and wash. Found out she had bags of dirty laundry hidden around the house. Next she started forgetting about appointments would come down to take her only to find out she would be sleeping and not even ready. This was her hair appt. would call her 2 hours before an appointment so she would be ready. Then after she started going back to sleep and forgot that I even called her. She started not remembering current things. Wouldn’t even remember what she ate. Finally I was able to get her in a hospital too see what was going on. Found out she had a severe uti and they started treating her. Thought that might have been the problem. No not really. They transferred her to a nursing home for physical and occupational therapy. She stayed there 3 Weeks and they determined she needed more care then I could provide. During this time I had severe hip problems and could hardly get around. I was on pain medication for it but had to find a place for my mom. Couldn’t take her to my house because bathroom was upstairs and she was using a walker and couldn’t do steps. Dont know if I did the right thing but I called a place for mom to see if they could help. Actually made appointments for me to see the assisted living places. I did check out the reviews and one seemed pretty nice. We admitted her there. Now I am questioning myself if I picked the right one. Seems there are somethings that I am concerned about. One was there air conditioning not working the past week when it was really hot. It was not just her room it was other places. An aide told me to talk to the director when I did they blamed it on the patients why it was not working. I was there one day when it was off. It had tripped the circuit. Two days later it wasn’t working and by the end of the week still was not working. Also asked if a doctor had been in to see her at all. One was supposed to come in every 3 months to check on her. Asked the director said she has been there long enough he should have came said they would check never got an answer. Now I am wondering if this was the right place to put her. Maybe I am just feeling guilty I put her in there. My brother who lives in Texas never even came up to help with anything. I couldnt walk and my husband who has a slipped disk had to get everything moved out of her apartment. I felt at the time we were doing wrong. That she should have had some say to what she wanted to keep. Everybody said I was crazy. My husband felt the same way when he was getting rid of things. Months later she has been realizing that she has been there awhile and has started asking about certain things. Told her my son and daughter have most we kept a lot that thought she might want. She seemed to be happy about that. It’s just been hard and now a year later I am finally starting to get around better and spending more time with her. Worst of all I am feeling bad that I had to place her anywhere. My brother tells me if I didn’t she probably would have died already. its botherig me know because I feel I wasn’t capable enough to making important decisions and am questioning myself.

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It was a hard choice to make for you. You can only do your best,take comfort in that. I have learned that A PLACE FOR MON ONLY RECOMMENDS HOMES THEY HAVE A CONTRACT WITH. These are not always the best places. If you keep finding problems with the home she is in you can move her. Best of luck to you.

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@rozalia

Right now I am in a bad place and really struggling. The kind words and support I have received from all of you is like a small candle in the dark. Thank you all.

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I am really sorry to hear you are struggling. This forum has given me
hope and has made me feel I can get answers, but the health issues don’t
disappear in a day. Hang in there. Look for something to make you
smile. Best, Kathryn

REPLY
@sma1952

My mother has dementia. We noticed last year she had some signs that something wasn’t right and asked her if she was taking her meds, just doing things like laundry and making meals. My sister in law came to visit and confirmed she wasn’t doing anything I mentioned. I was having hip problems at the time and could not get around well. Took her to our family doctor and he said she was clean dressed nicely and talked with him about things. Said he didn’t see any problems. I went down every day to make sure she took her meds did her grocery shopping and wash. Found out she had bags of dirty laundry hidden around the house. Next she started forgetting about appointments would come down to take her only to find out she would be sleeping and not even ready. This was her hair appt. would call her 2 hours before an appointment so she would be ready. Then after she started going back to sleep and forgot that I even called her. She started not remembering current things. Wouldn’t even remember what she ate. Finally I was able to get her in a hospital too see what was going on. Found out she had a severe uti and they started treating her. Thought that might have been the problem. No not really. They transferred her to a nursing home for physical and occupational therapy. She stayed there 3 Weeks and they determined she needed more care then I could provide. During this time I had severe hip problems and could hardly get around. I was on pain medication for it but had to find a place for my mom. Couldn’t take her to my house because bathroom was upstairs and she was using a walker and couldn’t do steps. Dont know if I did the right thing but I called a place for mom to see if they could help. Actually made appointments for me to see the assisted living places. I did check out the reviews and one seemed pretty nice. We admitted her there. Now I am questioning myself if I picked the right one. Seems there are somethings that I am concerned about. One was there air conditioning not working the past week when it was really hot. It was not just her room it was other places. An aide told me to talk to the director when I did they blamed it on the patients why it was not working. I was there one day when it was off. It had tripped the circuit. Two days later it wasn’t working and by the end of the week still was not working. Also asked if a doctor had been in to see her at all. One was supposed to come in every 3 months to check on her. Asked the director said she has been there long enough he should have came said they would check never got an answer. Now I am wondering if this was the right place to put her. Maybe I am just feeling guilty I put her in there. My brother who lives in Texas never even came up to help with anything. I couldnt walk and my husband who has a slipped disk had to get everything moved out of her apartment. I felt at the time we were doing wrong. That she should have had some say to what she wanted to keep. Everybody said I was crazy. My husband felt the same way when he was getting rid of things. Months later she has been realizing that she has been there awhile and has started asking about certain things. Told her my son and daughter have most we kept a lot that thought she might want. She seemed to be happy about that. It’s just been hard and now a year later I am finally starting to get around better and spending more time with her. Worst of all I am feeling bad that I had to place her anywhere. My brother tells me if I didn’t she probably would have died already. its botherig me know because I feel I wasn’t capable enough to making important decisions and am questioning myself.

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I knew about mom and me probably had contracts. The nursing home where she was was first weren’t that good. Checked the review and they were worse. My mom started working in a nursing home full time as a nurses aide when she was 62. Retired 20 years later only because she couldn’t drive at night. Then she babysat my 2 grandchildren until she fractured her pelvis. I thought she recovered. Think that’s when things must have started declining. That was two years ago. Did think about moving her but she had her room changed and she is even more confused. Think the problems with our nursing homes is shortage of help. Nurses there are working double shifts. Have heard from people and even my family doctor that it’s a good place. Thank you for your response. I will defenately keep my eye on things there.

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@sma1952 I applaud you for the strength and courage it takes to trust others to the care of your mother. It is so difficult.

Towards the end of my mother’s struggle with glioblastoma. Mom had to make a decision of staying in her home or having assistance from a facility as she was a primary parent two young boys. They were 9 & 11 yrs old and staying in her home was not an option. My medical back ground had prepared me for the dying process for which I had great confident the boys would not be able to handle.

Mom was admitted to the care center on Thursday and passed away on Tuesday. The cancer had eaten holes in her face and scalp. I beat myself up for many months deciding what to do. Not having her pass away at home, I know now that was the absolute best decisions we could have made. That was not how we wanted those boys to remember her.

Demand great care. You always have a choice to call your state hotline and report you concerns if they have not resolved the issues.

Trust your heart
Dawn

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@dawn_giacabazi

@sma1952 I applaud you for the strength and courage it takes to trust others to the care of your mother. It is so difficult.

Towards the end of my mother’s struggle with glioblastoma. Mom had to make a decision of staying in her home or having assistance from a facility as she was a primary parent two young boys. They were 9 & 11 yrs old and staying in her home was not an option. My medical back ground had prepared me for the dying process for which I had great confident the boys would not be able to handle.

Mom was admitted to the care center on Thursday and passed away on Tuesday. The cancer had eaten holes in her face and scalp. I beat myself up for many months deciding what to do. Not having her pass away at home, I know now that was the absolute best decisions we could have made. That was not how we wanted those boys to remember her.

Demand great care. You always have a choice to call your state hotline and report you concerns if they have not resolved the issues.

Trust your heart
Dawn

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Dawn, how long did your mom battle glio?

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@sandydominy1
I was 8 months pregnant when mom was dx in Sept 2011 and she went to her forever home on Feb 2012 – we were very, very blessed to have 5 months with her. Which was far longer then the doctors had every expected. They told us she would only have maybe a week or two.

Peace
Dawn

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I have early onset Alzheimer’s. I am quite functional and self-supported in an independent living situation. I am a professor emerita in the psychology of learning and memory. Is ANYONE aware that there is absolutely no help (not at the national, state nor local level) available for me to learn practical coping skills? Not a single support group for me? I am allowed only social workers and social activities. My non-existent, unneeded caregivers receive all the help. I am just the afflicted. After leading a professional life IN THE FIELD, I am given the status of a piece of crap. Yes, I am angry that the system has so utterly failed me.

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@nocaregiverneedednohelpavailable

I have early onset Alzheimer’s. I am quite functional and self-supported in an independent living situation. I am a professor emerita in the psychology of learning and memory. Is ANYONE aware that there is absolutely no help (not at the national, state nor local level) available for me to learn practical coping skills? Not a single support group for me? I am allowed only social workers and social activities. My non-existent, unneeded caregivers receive all the help. I am just the afflicted. After leading a professional life IN THE FIELD, I am given the status of a piece of crap. Yes, I am angry that the system has so utterly failed me.

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Hello @nocaregiverneedednohelpavailable. You deserve to be just as damn angry as you can be! In my opinion, the system of caregiving and of many medical/insurance personnel deciding who needs what is deeply and seriously flawed.

My wife was caught in caregiving limbo for many years as she was able to do certain things, so the decision was made she did not need caregiving. It is a system that needs reform, but I cannot see it transforming itself.

Skill building/retention for coping is desperately needed, but unless the individual fits some predetermined format or ideal, there is often no help. At one point in my wife’s rehab I was told simply ‘she is not like our other patients so we can’t do anything for her’.

I send you strength and peace — and hope others have some knowledge of resources you seek and want!

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