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?

@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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Hello @linda49 Nice to e-meet you here. I am sorry to hear of your mother’s and father’s health problems. I am Scott and I was the primary caregiver for my wife for 14+ years as she fought brain cancer and the last 14 months she was in home hospice. Almost all of this time she exhibited several mental and emotional distress.

Caregiving is an extraordinarily demanding role, but even more so when your patient is emotionally unstable as well as having the physical demands normal to failing and/or chronic health issues. Often times I found it was a lose-lose proposition. Demands of caregiving being the primary focus and demand, yet other parts of life also ‘requesting’ time and attention, both of which in high demand, primary caregiving situations are rare or often nonexistent! As I would say “if I had a dime for every time a person said to me ‘take care of yourself’ and did nothing to help with that I’d be a very rich man today!

While I am only speaking from my 14 years of experience and not as a medical professional I can say one thing, which helped me immensely, was to pick my battles with my wife. 99.9% of the things she said, did, etc. as long as they were not dangerous to herself I just let go. I did a lot of head nodding, agreeing with things I didn’t agree with, repeating myself and chores she asked me to redo (pillow fluffing, sheet tightening, were some of her favorites), and saying to myself “it is what it is”. Otherwise I could have spent every minute of every day fighting and I treasured what time I had with her too much to do that. I knew in my heart it was the disease lashing out, not her so it made it easier to take. Plus I knew she was terminal so she was fighting the hardest fight and I wasn’t.

My wife’s neurologist said to me the reason she lashed out at me was I was the one she felt the safest with, so she could vent, etc. and know I would still be there taking care of her. I was her only pressure valve as he said. I took that to heart and it helped me often.

He also said for me to remember “Courage does not always roar. Sometimes courage is the quiet voice at the end of the day saying ‘I will try again tomorrow'”,

Peace, courage, and strength!

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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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Thank you. I have seen a therapist in the past who helped me tremendously with my depression. I fear the depression and I think you are right. I need to give her a call. Again, thank you for your excellent suggestion.

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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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Thank you Nancy, for sharing your story. My father was only expected to live a couple months when he was diagnosed. He has exceeded that and although he has weakened, he is still able to bathe himself, go to the table to eat, etc. I was staying with him but left at his request. I check on him daily and I expect to walk in and find him gone every time. He is determined to die on his terms, which means trying to do something he isn’t physically able to do. I have to live with myself after he is gone so I just try to make sure he doesn’t cause injury to someone else.

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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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Your message was beautiful and strengthening. You made me feel better and I cannot thank you enough for that. You truly understand and you must be one the kindest people on earth! I am so sorry for your loss and I know how much you must have loved your wife by your remarks. She was lucky to be loved by you.

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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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shortshot80 ) Nancy…Hello everyone. This last weekend has been a crazy weekend. Last Friday June 16 I had my last radiation. So my appt was at 10 am, finished this a had to wait for the Doctor. He wanted to see me.He checked me over, Gave me a “Diploma” for finishing all my sessions. Told me he would call my cancer doctor and then after discussions will call me and tell me what will happen now. So we drove home 65 miles. Arrived home fixed a quick lunch. I was really tired. My husband (89) wanted to take a shower. He went into the bathroom, cut his depend off and caught his catheter with the sissors, and the catheter fell out. Well we called his nurse who drove about 45 miles to get here. She tried four times and could not get it in. So told us that she called the emergency room at the hospital and for us to go there now. away we go. Arrived in the emergency room and three nurses tried to put the catheter in ans failed. So now the doctor comes in and tries to get it in and he can’t do it ether. So tells us he will try to get the urologist for us on Monday. Now Bob has a new depend on with a pad to catch the blood that was happening while everyone was trying to put the catheter in. So Bob jr, oldest son who lives with us to do the driving and what ever else. Anyway calls # 2 son Randy who lives close to the hospital to come and get me and take me home, after five hours at the hospital. I was really tired after everything that happened. Well # 3 son Richard was here at the house with his two friends Jerry & Dave. Dinner time…..So I had hamburger in the refrigerator. So Richard got busy and started cooking spaghetti for dinner. Now dinner is over, time is about seven. Dinner over, get the dogs outside,
I want to bed. Went into the bathroom, Wow! another job to do is to mop up all the urine. Finished that job, bucket of hot purex water.
Now it is Monday morning, have called the doctor at 8am. 10:30 now and still have’ not heard anything. If I thought a beer or drink would help my attitude at this point I would take the whole bottle, but that won’t help, Prayers at this point is better. Just got hold of the doctor,, Bob jr us taking Bob sr in to the doctor. Not only the catheter he is having a problem with his oxygen this morning. So driving 25 miles to the doctor and back. I will guard the phone the rest of the day. Note: we live in not quite the boondocks, but 25 miles either direction from a hospital. But we are happy and that is all that counts.

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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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Good morning, Nancy. What an incredible weekend and beginning of the week you’ve had. I simply can’t imagine it. It is Tuesday morning now and I hope that you were able to sleep solidly and uninterrupted last night. Did Bob Sr’s catheter issue get resolved yesterday? Was he agitated throughout all of this? How are YOU doing?

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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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Nancy, what a crazy time you have had! Praying and hoping you got some good rest overnight.

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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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@shortshot80 Hi Nancy, I’m so sorry to hear of your difficult weekend – I can only imagine how tired you must feel. I’m always pleased to hear how your children are involved in your life – it really does take the edge-off a very difficult event. I’m praying for you and your entire family. How is your husband doing now? Teresa

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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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Hope you have resolved all the issues by now. Congratulations on you last radiation and I wish you good health. I have said a prayer for you and your family (I hope that is ok) and I hope you have an uneventful rest of the week.

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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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shortshot80 ) Nancy. Thanks for all the caring and prayers. I really needed them. He was at the hospital for over five hours yesterday,
Urologist could not get the catheter in yesterday. So today this afternoon they are going to take him to surgery and look with a camera to see what is the problem. Yesterday they put a “baby” catheter in. Guess they tried just about everything. Today will be different. He isn’t looking forward to all the attention, But it is necessary. Today they are going to sedate him, So will see what happens. Nancy

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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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shortshot80) Nancy, Well last night was un-event -full.. Today will be another pretty full day for my husband Bob, he has to go to the hospital this afternoon. Doc’ will sedate him and look with a camera to see what is plugging him. They used a baby catheter yesterday. So will see how it goes today. I had a not so good day yesterday, better today. Nancy

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@shortshot80 I pray that they will find a good solution to his problem, Nancy. Keep strong and stay in touch with us. Teresa

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@lindabf

Thanks for the invitation. I look forward to giving this a try. I enjoyed reading each of your introductions. Caregiving is a challenging story to be a part of and you have my support and appreciation. So here’s my situation:
I am 68 and my husband is 74. We are caregivers for my Mom who is 97 and has been with us since just after her 90th birthday. She is entering what appears to be late stage dementia (not Alzheimer’s – probably fronto-temporal or possibly Lewy’s Body Dementia (LBD). She seems to be reasonably happy and very healthy except for the increasing pace of the cognitive decline. My husband and I are blessed with good health and a home that accommodates her easily. Up to now, the biggest frustration has been accepting that incontinence is requiring more and more attention. I get up most nights when I hear her heading for the bathroom because if I don’t, she will forget to change Depends, which means beginning her day and mine with a major clean-up operation while she wonders who made such a mess. I can usually find my humor and good nature, but have been known to snap at her when I get really tired after several nights of interrupted sleep. She is a sweetie, so I always feel incredible guilt after that. The other huge challenge is how to connect with her. When she was first with us, she continued to knit, even though she could no longer follow a pattern but could only knit “squares” (which sometimes weren’t square, of course). She has always been quite intelligent, both mentally and emotionally, so she noticed the discrepancy and it was very frustrating to her and she finally quit. Then for awhile we would play Rummy together, with her own set of rules, designed to ensure that she won. That worked until it didn’t and she no longer wants to play cards. For awhile she would also play Scrabble, as she has always been able to beat all four of her bright daughters at this, but she began to forget the rules and forget what she was doing and need help with words — all of which we were willing to give — but she has declined to play for the past 2 years. For awhile she would sit and sing hymns with me. That will still occasionally work, but she wears out very quickly. She seems to have given up on crossword puzzles and word search puzzles in the last few months. She still occasionally plays Solitaire. When I read to her, she falls asleep in her chair within minutes. When the TV is on, she dozes intermittently. Food is always interesting, but of course there are limits to how much I can use this as entertainment. This gives you a picture of Mom’s life. It is painful to watch her daily decline. She was an outstanding surgery nurse for years and a really amazing single Mom after my Dad’s death when I was 14. I so want to make her last years all they can be, but I get pretty frustrated with defeated attempts to engage her with Alzheimer’s store jigsaw puzzles, adult coloring books, etc. She says she doesn’t need to be entertained, and she refuses all invitations to go out unless I insist that she go to the hairdresser or nail salon. All her grandchildren and great grandchildren live in other states, so there’s limited opportunity for her to enjoy them.
As for me, I have had a very rewarding career as a public speaker, consultant, and trainer in corporate America – mostly focused on teaching people how to better manage the people side of having an effective and engaging company. I had no intention of retiring — but here I am. I miss my work very much and can still figure out how to do a few short-term projects and engagements, particularly if they are local. I worry that if Mom lives another 10 years (or even 5), I will have become completely outdated. My husband and I were hit hard by the 2008 recession and between that and its impact on the small business we had started, we lost most of our savings, so I do still need to bring in revenue and am increasingly worried about how much I will have the ongoing ability to do that. We are renting a room to a no-goodnik brother-in-law, but that is not going to be tenable for very long. He lies and steals while smiling and looking us in the eye. Not okay for very long. So it won’t surprise you to learn that my blood pressure has risen and I’m exhausted an awful lot of the time. We are hoping to get VA Aid and Assistance which will provide 11 hours per week of respite care. That will help, yet honestly, it seems like such a little dent in the overwhelm.
My husband and I do still find time to go out to dinner or to a concert from time to time, but our tether is fairly short. My local sister covers a night or two so I can fly to California every few months to see my newest granddaughter (who is almost 7 months old and whom I now haven’t seen for 3 of those months). I have a sister who helps as she can, but she owns her own business and has all the stress of that. So anyway, thanks for listening. I rarely talk this much about my situation and if nothing else, this has given me an opportunity to look more objectively at things and see that (1) I have a lot to be grateful for; and (2) there’s a reason I’m tired. I try not to let all these other stressors take away from my relationship with Mom, but she can still tell when I’m stressed and then instead of just asking for any help she needs, tries to “not be any trouble” which is the last thing I want because my mind-reading skills are not well-developed. I don’t know if I’m actually asking for help as much as just saying “thank you” for providing a place where I can perhaps be understood without being labeled a complainer or a martyr.

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That was NOT complaining. We are all in similar “boats” so to speak. I think you are doing the best you can. If you do get the 11 hours of respite care and that person do some of the work load like shower/wash her hair/do her laundry. I’ve been a home health nurse and a worker can do anything that directly relates to the client.

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shortshot80) Nancy Well, they did not do any surgery, he came home and told me that they are going to do the surgery next week on Tuesday) hopefully the small baby catheter will not plug or cause him any problems. Another small thing happened yesterday. Have a pretty large tree that has a enormous amount of leaves on it. Well the large limb in the middle of the tree.The wind yesterday blew pretty hard and the weight of the limb swaying just broke>
Wow! I needed another lemon to work with. Sometimes so many lemons drop out of the sky, that you can’t make lemonade!I’m going to just rest today, I have a small head ache, so will just watch tv. Hey guys/gals Thanks for listening and for all the prayers. Nancy

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@shortshot80

shortshot80) Nancy Well, they did not do any surgery, he came home and told me that they are going to do the surgery next week on Tuesday) hopefully the small baby catheter will not plug or cause him any problems. Another small thing happened yesterday. Have a pretty large tree that has a enormous amount of leaves on it. Well the large limb in the middle of the tree.The wind yesterday blew pretty hard and the weight of the limb swaying just broke>
Wow! I needed another lemon to work with. Sometimes so many lemons drop out of the sky, that you can’t make lemonade!I’m going to just rest today, I have a small head ache, so will just watch tv. Hey guys/gals Thanks for listening and for all the prayers. Nancy

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You’ll have the best lemonade ever, Nancy. You’re attitude is amazing!
They say “things come in 3s.” Here’s hoping the branch was number 3, and you’re done with lemons.

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