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?

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

@bensgal

I am Joygirl 1 and I am caregiver for my husband

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Thank you for your reply. I'm always happy to hear others comments and opinions. God bless.

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@bensgal

I am Joygirl 1 and I am caregiver for my husband

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I understand totally the evening attitude. Dementia sufferers very frequently get more so as the day goes on and by evening it is the most difficult. I work on bearing that in mind, almost like a small child that needs an afternoon nap and the earliest bedtime that is doable, dementia people have these type of challenges that are very different from non-afflicted senior citizens. You are to be praised for your valiant work, day in and day out caring for your cherished life partner. I am 3.5 years into frontotemporal lobe type dementia with my loved one due to a carotid stroke. I give thanks he survived and I do pray for strength and peace for all of us rowing this same boat. I try to go one day at a time, and never hesitate to give yourself that pat on the back for all you do just to get through the day. I don't get out much as I would like now either but keep in touch by phone & online for moral support and connection to the "regular" world. I have worked with dementia seniors, they will mimic your feelings and reactions so I am careful about what I share now with him. Keeping the conversation light and easy seems to allow for less anxiety and confusion on his part. He no longer requires certain levels of intellectual type talk , love, hugs, reassurance and making him feel safe is the priority now. God Bless You, the Good Lord and his Angels are watching over You and Your cherished one.

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@bensgal

I am Joygirl 1 and I am caregiver for my husband

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@ladycat I hope you have a good Sunday ahead!

Peace,

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@bensgal

I am Joygirl 1 and I am caregiver for my husband

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Thank you very much IndianaScott, wishing you a good day too !!

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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.

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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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@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.

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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!

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@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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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!

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@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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<br><br><br><br><br>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. <br><br>

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@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 i

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