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?

I dont know where to start. I feel like i am sick and dont want to go to dr because then i might have to stay in an unbearable situation if i get feeling better. We moved closer to elderly parents thirteen yrs ago as i could see that mom as not doing well. She had Alzheimers and was a danger to herself and my dad. She set fire cooking several times. After along struggle with family she was put in a care home. Then it was looking after dad. For the first few months he had a tough time adjusting and frankly so did i. Midnight calls etc. We got a system set up but then he told me he didnt like my husband and never had. Now we had been married almost 50 yrs. so it meant my husband wasnt going to dads house and we didnt have family dinners either. My dad didnt want to go visit mom as he thought i was going to leave him there. I will tell you i would have liked to because he was so ornery but i didnt. In 2010 my husband was diagnosed with colorectal cancer. Thankfully he survived all the traetments and has to wear a bag, but as a result he has cognitive impairment. He is 80 yrs old. In 2013 i was diagnosed with Fuchs dystrophy and late last year we moved to Alberta to be close to son. Now i cant drive intil transplant in a month and i have totally lost my independence. So i am burnt out depressed and stressed

REPLY
@hmr52

I’ve been caring for my husband since a minor stroke two years ago left him weak on one side and also with the slightest of memory issues. In those two years, his physical abilities have gotten much worse and the cognition is worsening as well. he is 78, and I am 15 years younger and still working full time. He has been retired for many years, and his “job” was grocery shopping, doing the dishes, vacuuming, running errands. Since his stroke, I pretty much do everything and work full time, albeit from home. My job does have set hours and minimum daily requirements, so I can’t just work when I want to. He is not at all difficult, but has no problem letting me wait on him. He does all his own ADLs, but making his own meal for breakfast/lunch takes him about twice the time it used to. He is quite content to sit in his recliner all day reading or playing on his tablet and now napping a great deal. He is dealing with back/hip pain that limits any plans we might make as we never know when it is going to be debilitating pain that requires a narcotic which then can mess with the cognition or make him sleep that much more. He also has unexplained dizzy/vertiginous spells where I don’t feel he can be left alone. I myself suffer from fibromyalgia and am intolerant of any of the medications to help with it. I only really get out to buy groceries or go to the library. We do have a medic alert system for when I am away, but I’m not comfortable leaving him for any length of time. I’m retiring in December this year, and all the financial decisions, etc are left to me. We will need to move from our rented town home, and I need to decide where our next home will be. I tried having a house cleaner come in, but it was a huge disaster and expense lesson for me. He would be insulted if I had someone “sit” with him so I could get out for a few hours and relax while doing so. Family that is close in geographic location are not helping. It seems there is no end to my having to be “on,” whether it is my paying job or my loving/caretaking job. I’m overwhelmed and exhausted. Thanks for listening.

Jump to this post

Hello @hmr52 I am Scott and I was the primary caregiver for my wife for 14 years. I am sorry to hear of your challenges with caregiving! You are correct to feel overwhelmed and exhausted! Plus the tension that is caused by the friction between caregiving demands and job demands can be crushing and impossible to meet everyone’s expectations at those times.

We who gather here on the Connect Caregiving discussion group are good listeners, have broad shoulders, are nonjudgmental, and love to share what we know from our caregiving experiences. I smiled when you related your situation with a housecleaner. I experienced a similar disastrous outcome when I was just trying to get ahead of the mess! I always say caregiving is the hardest job I have ever had where I got no training and no job manual when I was ‘hired’!

Be strong and all any of us can do is our best at each time. I hope you can find someone to spell you a bit.

I send peace, strength, and courage! Know you have understanding new friends here!

REPLY
@charlismom

I dont know where to start. I feel like i am sick and dont want to go to dr because then i might have to stay in an unbearable situation if i get feeling better. We moved closer to elderly parents thirteen yrs ago as i could see that mom as not doing well. She had Alzheimers and was a danger to herself and my dad. She set fire cooking several times. After along struggle with family she was put in a care home. Then it was looking after dad. For the first few months he had a tough time adjusting and frankly so did i. Midnight calls etc. We got a system set up but then he told me he didnt like my husband and never had. Now we had been married almost 50 yrs. so it meant my husband wasnt going to dads house and we didnt have family dinners either. My dad didnt want to go visit mom as he thought i was going to leave him there. I will tell you i would have liked to because he was so ornery but i didnt. In 2010 my husband was diagnosed with colorectal cancer. Thankfully he survived all the traetments and has to wear a bag, but as a result he has cognitive impairment. He is 80 yrs old. In 2013 i was diagnosed with Fuchs dystrophy and late last year we moved to Alberta to be close to son. Now i cant drive intil transplant in a month and i have totally lost my independence. So i am burnt out depressed and stressed

Jump to this post

Hello @charliesmom I am Scott and it is nice to e-meet you here and I am sorry to hear of your caregiving challenges and your own health concerns on top of them. It is not an easy row to hoe. I was the sole caregiver for my wife during her 14 year battle with brain cancer.

Feelings of being overwhelmed, depressed, and stressed go hand-in-hand with caregiving and I wish there was some magic potion or words that would help. The isolation of caregiving I found to be one of the biggest challenges for me. I also understand you saying you don’t want to go to the doctor for yourself. I didn’t go for various ailments of my own for those 14 years and now am paying a price for all the ‘delayed maintenance’ I have to address now. No easy answers to any of this.

You will find the Connect Caregiving group to be a new source of friends who are nonjudgmental, have big shoulders, and love to share their ideas and support for fellow caregivers. We don’t always have any answers, but sometimes it is good to know you are not alone in this journey and we each, in different ways, have learned some pretty nifty and helpful ‘caregiving hacks’ to make some portion of our work easier or at least no harder than it is.

I send peace, strength, and courage your way and may spring come early to Alberta!

REPLY
@charlismom

I dont know where to start. I feel like i am sick and dont want to go to dr because then i might have to stay in an unbearable situation if i get feeling better. We moved closer to elderly parents thirteen yrs ago as i could see that mom as not doing well. She had Alzheimers and was a danger to herself and my dad. She set fire cooking several times. After along struggle with family she was put in a care home. Then it was looking after dad. For the first few months he had a tough time adjusting and frankly so did i. Midnight calls etc. We got a system set up but then he told me he didnt like my husband and never had. Now we had been married almost 50 yrs. so it meant my husband wasnt going to dads house and we didnt have family dinners either. My dad didnt want to go visit mom as he thought i was going to leave him there. I will tell you i would have liked to because he was so ornery but i didnt. In 2010 my husband was diagnosed with colorectal cancer. Thankfully he survived all the traetments and has to wear a bag, but as a result he has cognitive impairment. He is 80 yrs old. In 2013 i was diagnosed with Fuchs dystrophy and late last year we moved to Alberta to be close to son. Now i cant drive intil transplant in a month and i have totally lost my independence. So i am burnt out depressed and stressed

Jump to this post

I’m here for you too. I’m caring for my sister who lives with my husband and me. Day by day solutions sometimes grow more permanent. Thinking of you in your struggle. 

REPLY
@charlismom

I dont know where to start. I feel like i am sick and dont want to go to dr because then i might have to stay in an unbearable situation if i get feeling better. We moved closer to elderly parents thirteen yrs ago as i could see that mom as not doing well. She had Alzheimers and was a danger to herself and my dad. She set fire cooking several times. After along struggle with family she was put in a care home. Then it was looking after dad. For the first few months he had a tough time adjusting and frankly so did i. Midnight calls etc. We got a system set up but then he told me he didnt like my husband and never had. Now we had been married almost 50 yrs. so it meant my husband wasnt going to dads house and we didnt have family dinners either. My dad didnt want to go visit mom as he thought i was going to leave him there. I will tell you i would have liked to because he was so ornery but i didnt. In 2010 my husband was diagnosed with colorectal cancer. Thankfully he survived all the traetments and has to wear a bag, but as a result he has cognitive impairment. He is 80 yrs old. In 2013 i was diagnosed with Fuchs dystrophy and late last year we moved to Alberta to be close to son. Now i cant drive intil transplant in a month and i have totally lost my independence. So i am burnt out depressed and stressed

Jump to this post

Thank you i

REPLY
@charlismom

I dont know where to start. I feel like i am sick and dont want to go to dr because then i might have to stay in an unbearable situation if i get feeling better. We moved closer to elderly parents thirteen yrs ago as i could see that mom as not doing well. She had Alzheimers and was a danger to herself and my dad. She set fire cooking several times. After along struggle with family she was put in a care home. Then it was looking after dad. For the first few months he had a tough time adjusting and frankly so did i. Midnight calls etc. We got a system set up but then he told me he didnt like my husband and never had. Now we had been married almost 50 yrs. so it meant my husband wasnt going to dads house and we didnt have family dinners either. My dad didnt want to go visit mom as he thought i was going to leave him there. I will tell you i would have liked to because he was so ornery but i didnt. In 2010 my husband was diagnosed with colorectal cancer. Thankfully he survived all the traetments and has to wear a bag, but as a result he has cognitive impairment. He is 80 yrs old. In 2013 i was diagnosed with Fuchs dystrophy and late last year we moved to Alberta to be close to son. Now i cant drive intil transplant in a month and i have totally lost my independence. So i am burnt out depressed and stressed

Jump to this post

Thank you

REPLY

Hello, I am Maria. I care for my mom who has advanced Alzheimers. I also work full-time, (I’m a parmedic that works in a clinic), and am active in my church. Most of my time is spent on my mother, either caring for her or keeping track of the aids caring for her. I am even in the process of selling my home to live in the same building where she resides as to make it easier on me to care for her. I do understand the demand the disease takes on resources, time, space and life. I am the oldest of 3 siblings who help me not at all. I understand the isolation and resentment as the one in the family who is the caregiver for all. Remember, Life is great when you put others before you. I love my mom and eventhough she makes me nuts sometimes, I have no regrets.

REPLY

Wishing you strength and peace !! You are a true Angel on Earth !! People say they can’t see the Angels, well, just look around!!

REPLY
@medicmaria

Hello, I am Maria. I care for my mom who has advanced Alzheimers. I also work full-time, (I’m a parmedic that works in a clinic), and am active in my church. Most of my time is spent on my mother, either caring for her or keeping track of the aids caring for her. I am even in the process of selling my home to live in the same building where she resides as to make it easier on me to care for her. I do understand the demand the disease takes on resources, time, space and life. I am the oldest of 3 siblings who help me not at all. I understand the isolation and resentment as the one in the family who is the caregiver for all. Remember, Life is great when you put others before you. I love my mom and eventhough she makes me nuts sometimes, I have no regrets.

Jump to this post

Very nice to have you in our discussion. People here understand and come up with helpful tips.

REPLY

I am the caregiver for my husband of 45 years. I fell in love with him when I was 13. Love at first sight! A few years back, my son that worked with him noticed some little changes. We went to a neurologist then and he didn’t think it was Alzeheimers. We followed up a doctor visit 2 years ago and he said the same thing. You’re fine, but let’s put you on a CPap. Last year we went again, right after my husband retired in March, and by then I was seeing small things that cropped up in his figuring out problems, here and there. Once again, after the 7 question test and chat, he said he thought he was fine. That’s when our family doctor, a personal friend called the neurologist back and convinced the neurologist he wasn’t “fine.”He has Early Stage and is taking both normal meds for AD. But I wasn’t happy with the confusing care we got in our town, so I had him evaluated by a psychcologist here, and we decided to seek care at UTSouthwestern in Dallas. What a difference! I know there is no cure, but they have done so much more than just let us just sit here a waste away. They gave us a top notch neurologist. She suggested a drug trial that he might enter down the road. She sent him to an endocrinologist he needed and by persevering, we got into a drug trial for Aducanumab this month. I’ve learned that since I’ve loved him so long I have to be the best advocate I can. He’s been a prince of a husband and father. We will fight this.Thank you for all you do!

REPLY
@moopy1950

I am the caregiver for my husband of 45 years. I fell in love with him when I was 13. Love at first sight! A few years back, my son that worked with him noticed some little changes. We went to a neurologist then and he didn’t think it was Alzeheimers. We followed up a doctor visit 2 years ago and he said the same thing. You’re fine, but let’s put you on a CPap. Last year we went again, right after my husband retired in March, and by then I was seeing small things that cropped up in his figuring out problems, here and there. Once again, after the 7 question test and chat, he said he thought he was fine. That’s when our family doctor, a personal friend called the neurologist back and convinced the neurologist he wasn’t “fine.”He has Early Stage and is taking both normal meds for AD. But I wasn’t happy with the confusing care we got in our town, so I had him evaluated by a psychcologist here, and we decided to seek care at UTSouthwestern in Dallas. What a difference! I know there is no cure, but they have done so much more than just let us just sit here a waste away. They gave us a top notch neurologist. She suggested a drug trial that he might enter down the road. She sent him to an endocrinologist he needed and by persevering, we got into a drug trial for Aducanumab this month. I’ve learned that since I’ve loved him so long I have to be the best advocate I can. He’s been a prince of a husband and father. We will fight this.Thank you for all you do!

Jump to this post

Hello @moopy1950 Nice to e-meet you here! I am sorry to hear of your husband’s medical travails. Tough, tough, stuff for sure! I am Scott and I was my wife’s caregiver for 14 years. Also for about 10 with my MIL who had dementia. I fully agree with your ‘take’ on medical care. Especially in my MIL’s case the local doctors were unwilling to diagnose her disease and many precious months were lost as a result. It was only after seeing specialists that her care became world class and far better for her and the family.

With my wife we also had similar experiences. Once we had our neuro-oncologist with her we stuck with him for all 14 years at Mayo. It was a godsend.

Wishing you peace and strength!

REPLY
@moopy1950

I am the caregiver for my husband of 45 years. I fell in love with him when I was 13. Love at first sight! A few years back, my son that worked with him noticed some little changes. We went to a neurologist then and he didn’t think it was Alzeheimers. We followed up a doctor visit 2 years ago and he said the same thing. You’re fine, but let’s put you on a CPap. Last year we went again, right after my husband retired in March, and by then I was seeing small things that cropped up in his figuring out problems, here and there. Once again, after the 7 question test and chat, he said he thought he was fine. That’s when our family doctor, a personal friend called the neurologist back and convinced the neurologist he wasn’t “fine.”He has Early Stage and is taking both normal meds for AD. But I wasn’t happy with the confusing care we got in our town, so I had him evaluated by a psychcologist here, and we decided to seek care at UTSouthwestern in Dallas. What a difference! I know there is no cure, but they have done so much more than just let us just sit here a waste away. They gave us a top notch neurologist. She suggested a drug trial that he might enter down the road. She sent him to an endocrinologist he needed and by persevering, we got into a drug trial for Aducanumab this month. I’ve learned that since I’ve loved him so long I have to be the best advocate I can. He’s been a prince of a husband and father. We will fight this.Thank you for all you do!

Jump to this post

Thank you so much for your kind note. I’m sure i will be needing shoulders to lean on in this jpurney. Nice to vent here..God Bless

Liked by ladycat

REPLY

Hi, my name is sharon and not good with computers but will try.

REPLY

Hi Sharon, I’m Shirley caring for my sister with dementia. Keep trying on that computer. You’re doing fine.

REPLY
@sallysue

Hi Sharon, I’m Shirley caring for my sister with dementia. Keep trying on that computer. You’re doing fine.

Jump to this post

I’m glad to have this site and thank you My kids [all grown} just don’t understand how dumb I can be-ha. My husband of 62 yrs has dementia. He thinks people are hurting or going to kill him and gets so mad at me when trying to reassure that no one is. What approach should I take?

REPLY
Please login or register to post a reply.