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Moderator

Meet fellow Caregivers - Introduce yourself

Posted by Colleen Young, Connect Director @colleenyoung, Aug 27, 2016

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?

Interested in more discussions like this? Go to the Caregivers Support Group.

charlismom | @charlismom | Feb 27, 2017
In reply to @charlismom "I dont know where to start. I feel like i am sick and dont want to..." + (show)
@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

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Thank you

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medicmaria | @medicmaria | Apr 17, 2017

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.

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ladycat | @ladycat | Apr 17, 2017

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

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sallysue | @sallysue | Apr 17, 2017
In reply to @medicmaria "Hello, I am Maria. I care for my mom who has advanced Alzheimers. I also work..." + (show)
@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.

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

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moopy1950 | @moopy1950 | Apr 17, 2017

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!

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2 replies
Mentor
Scott, Volunteer Mentor | @IndianaScott | Apr 18, 2017
In reply to @moopy1950 "I am the caregiver for my husband of 45 years. I fell in love with him..." + (show)
@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!

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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!

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moopy1950 | @moopy1950 | Apr 18, 2017
In reply to @moopy1950 "I am the caregiver for my husband of 45 years. I fell in love with him..." + (show)
@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!

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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

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sharonekb | @sharonekb | Apr 20, 2017

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

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sallysue | @sallysue | Apr 20, 2017

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

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14 replies
sharonekb | @sharonekb | Apr 21, 2017
In reply to @sallysue "Hi Sharon, I'm Shirley caring for my sister with dementia. Keep trying on that computer. You're..." + (show)
@sallysue

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

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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?

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