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?

Hi, i’m Bensgal, taking care of my husband who has Alzheimers. I am happy to have found your group. Ben was recently hospitalized for 4 days
with an infection and internal bleeding. All is cleared up now, and we are doing fine, but he has suffered a set back due to the severity of his illness.
Slowly he is remembering, but we have no way of knowing how much he has lost.

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@bensgal

Hi, i’m Bensgal, taking care of my husband who has Alzheimers. I am happy to have found your group. Ben was recently hospitalized for 4 days
with an infection and internal bleeding. All is cleared up now, and we are doing fine, but he has suffered a set back due to the severity of his illness.
Slowly he is remembering, but we have no way of knowing how much he has lost.

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Welcome to the Caregivers group Bensgal! I’m glad to hear Ben’s infection and internal bleeding has cleared up. That must have been a fright.
I encourage you to also meet others talking in the discussion “Caring for someone with dementia / Alzheimer’s” https://connect.mayoclinic.org/discussion/caregiving-for-dementia-sufferers/

We’re happy you found us too.

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Hi. I’m Joyce and I am a caregiver for my husband. I have never joined a discussion group before. Give me an idea how this works.

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@rahji

Hi. I’m Joyce and I am a caregiver for my husband. I have never joined a discussion group before. Give me an idea how this works.

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Hi Joyce, welcome to Connect. Good for you for taking the first step of posting a message. That’s usually the hardest part. To learn more about How to Get Started, you can read this page https://connect.mayoclinic.org/get-started-on-connect/
You will get an email notice telling you that I have replied to your message. Simply click VIEW & REPLY in the email and you’ll be taken right to the discussion and see my response.

Here is the Caregivers group we talk openly and without judgement about the challenges and joys of caregiving. @IndianaScott @tavi @julz @sandydominy1 @lisa_sj99 @burrkay will you join me in welcoming Joyce?

Joyce, we look forward to getting to know you better. What diagnosis does your husband have? What do you give thanks for this holiday weekend?

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Thanks you for inviting me to be part of this group. I am Bensgal and am caring for my Husband, who has Alzheimers.

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I am Bensgal and I have my cup of tea! I’m thankful to have found this group. I am caregiver for my husband who has Alzheimers.

Liked by macbeth

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@bensgal

I am Bensgal and I have my cup of tea! I’m thankful to have found this group. I am caregiver for my husband who has Alzheimers.

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Bensgal, I’m a tea drinker too. I like strong Assam team. We have several members caring for a partner or parent with Alzheimer’s. I encourage you to read some of the other Alzheimer related discussions where you’ll meet @IndianaScott @donnajane @lindabf @nanax2 @rmftucker @sallysue @kmkm @tavi @caregiver49 @macbeth @tsoy @annie33 @tntredhead @julz and others.

Here are a few discussions that will be sure to interest you.
– Caring for someone with dementia / Alzheimer’s http://mayocl.in/2ccA0jO
– Dementia Anger Issues – bathing http://mayocl.in/2g0Urkt
– Husband with early Alzheimers -question http://mayocl.in/2fd7gbG

Caregiving is a round-the-clock job. Bensgal, do you have a little something that you do just for yourself? Tea, reading, exercise?

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I also am my husband’s caretaker. He was diagnosed with Alzheimer’s Disease with Vascular Dementia, from several small strokes he has also had during the past couple years. He is 86 and in reasonable good health if not for the dementia, and lack of strength in his legs. It is challenging but we are finally getting help and our home arranged to aid in caring for him so it has been getting easier. Don’t be afraid to ask for help. Many people just need to be ask to do a specific task enough though they probably don’t volunteer.

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My wife was diagnosed with Alzheimer’s 7 years ago and she is still at home. We are doing okay so far with no serious issues. I am fortunate to have some good help from a woman who is a CNA and comes every morning to get my wife up and ready for the day. She also comes back 5 evenings a week to get her ready for bed. I take my wife to an Adult Day Care facility 5 days each week where she also has lunch. She also gets her showers at the Day Care facility. She no longer communicates, rarely feeds herself, cannot dress herself and needs full toileting help. I feel fortunate that there have not been any problems with wandering (outside), agitation or aggression. She still walks but is quite unsteady and has fallen in the house. So far so good

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@whitey85
It sounds like you have a great set-up. Still, this must be very difficult. My thoughts are with you.

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@bensgal

Thanks you for inviting me to be part of this group. I am Bensgal and am caring for my Husband, who has Alzheimers.

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Hello @bensgal Nice to e-meet you here! I am sorry to learn of your husband’s medical condition. It is a challenging disease in so many aspects, one of which is also caregiving for sure.

I was the primary caregiver for my wife for my wife’s 14+ year war against brain cancer during which she exhibited many symptoms of dementia and I was a secondary caregiver for my MIL who had frontal temporal dementia for 20+ years. Both opted for home care their entire journeys and my wife’s included the last two years in home hospice. I say this NOT to suggest it is the best option, just so you know what environment it was we conducted our caregiving in.

While I am NOT a medical professional in any manner, I have had lots of caregiving experiences and am happy to reply, answer questions, and suggest options if that would ever be of help to you.

I wish you courage and strength!

Liked by macbeth

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i am member of other groups here, but this seems to be the best choice for me. Scott, one of the members in your group, has invited me to join.
I am a disable vet married to another disable vet. We just moved to Colorado, in Aug. this year from Florida. I told my friends and his family that my husband could get better care from VA here. I convince him of this move, and our only grown child lives here, too. My daughter and I are not close, and she has no time or plans on helping her parents. But the real reason I push my husband for this move is me. I plan to die before him, even if he is in a wheelchair, full time. And he is 54 years and I am 66. I have been his caregiver for over 20 years, I am so burn out mentally (PTSD,too) and physically ( unable to feel my legs , but walk, and high blood pressure, due to stress. I have a painful neck and back , due to helping him off the floor, when he slips and falls, been his wound care nurse, and mental support to keep him going. He denies he needs help to other people, and prides himself to family and friends that he is not depend onone, and cares for his wife all the times(cause he drives, and I can not). My physical health is poor, and my mental health is worse. I feel so alone and just want to live in the streets, to care only about me. My husband does not touch me, only when I help him up off the floor, or care for his wounds. So how I am no a good caregiver, or wife or mom, cause nobody ever ask me what I need or want in life. I feel like workhorse , so to be not even notice when I am gone, just replace by a new wife( my husband said he would find someone, when I die, he needs help). I hope to find a friend here in this group and support.

A caregiver, looking for a caregiver…….

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@timerdude

i am member of other groups here, but this seems to be the best choice for me. Scott, one of the members in your group, has invited me to join.
I am a disable vet married to another disable vet. We just moved to Colorado, in Aug. this year from Florida. I told my friends and his family that my husband could get better care from VA here. I convince him of this move, and our only grown child lives here, too. My daughter and I are not close, and she has no time or plans on helping her parents. But the real reason I push my husband for this move is me. I plan to die before him, even if he is in a wheelchair, full time. And he is 54 years and I am 66. I have been his caregiver for over 20 years, I am so burn out mentally (PTSD,too) and physically ( unable to feel my legs , but walk, and high blood pressure, due to stress. I have a painful neck and back , due to helping him off the floor, when he slips and falls, been his wound care nurse, and mental support to keep him going. He denies he needs help to other people, and prides himself to family and friends that he is not depend onone, and cares for his wife all the times(cause he drives, and I can not). My physical health is poor, and my mental health is worse. I feel so alone and just want to live in the streets, to care only about me. My husband does not touch me, only when I help him up off the floor, or care for his wounds. So how I am no a good caregiver, or wife or mom, cause nobody ever ask me what I need or want in life. I feel like workhorse , so to be not even notice when I am gone, just replace by a new wife( my husband said he would find someone, when I die, he needs help). I hope to find a friend here in this group and support.

A caregiver, looking for a caregiver…….

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Hi again, @timerdude. Good to see you found our Caregivers group and discussions here. This is a very non-judgmental place. Feel free to say your peace, speak your heart, and seek whatever we offer.

Caregiving is an arduous and often exhausting journey. It is not for the faint of heart, which you are obviously proving with your husband. I applaud you and wish you all the strength and courage you need.

Caregiving is the only job I have ever had, which came with no training, no employee manual, and vacation days built in. Know you are not alone in your struggles or your feelings. I cannot pretend to understand the demands PTSD puts on an individual or couple, but can say I have felt other of the ‘symptoms’ you describe. My wife had brain cancer and her mental condition was fragile and unpredictable. Being the closest and most frequent person in her life her anger, fear, frustration, etc. was always taken out on me. Be strong and know it is the disease not the person acting out. I was her fulltime caregiver daily for 14 years and am now in the worst of it, having lost her in July.

Your physical maladies are also familiar. I am now beginning a series of medical appointments to begin dealing with 14 years of what I call ‘deferred maintenance’ on this caregiver. It takes a toll. I blew out a knee, which I’ve been told needs to be replaced, carpel tunnel surgery on both hands, uncontrolled blood pressure, lower back surgery, and a few more tidbits. As I have said elsewhere ‘caregiving ain’t for wimps’ and I for one am very proud you are staying with it for your husband.

I wish for some words of wisdom, but sadly I have nothing more than I send you all the strength, courage, peace, and fortitude I can!

Glad you are here!

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@timerdude

i am member of other groups here, but this seems to be the best choice for me. Scott, one of the members in your group, has invited me to join.
I am a disable vet married to another disable vet. We just moved to Colorado, in Aug. this year from Florida. I told my friends and his family that my husband could get better care from VA here. I convince him of this move, and our only grown child lives here, too. My daughter and I are not close, and she has no time or plans on helping her parents. But the real reason I push my husband for this move is me. I plan to die before him, even if he is in a wheelchair, full time. And he is 54 years and I am 66. I have been his caregiver for over 20 years, I am so burn out mentally (PTSD,too) and physically ( unable to feel my legs , but walk, and high blood pressure, due to stress. I have a painful neck and back , due to helping him off the floor, when he slips and falls, been his wound care nurse, and mental support to keep him going. He denies he needs help to other people, and prides himself to family and friends that he is not depend onone, and cares for his wife all the times(cause he drives, and I can not). My physical health is poor, and my mental health is worse. I feel so alone and just want to live in the streets, to care only about me. My husband does not touch me, only when I help him up off the floor, or care for his wounds. So how I am no a good caregiver, or wife or mom, cause nobody ever ask me what I need or want in life. I feel like workhorse , so to be not even notice when I am gone, just replace by a new wife( my husband said he would find someone, when I die, he needs help). I hope to find a friend here in this group and support.

A caregiver, looking for a caregiver…….

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You two are strong, caring people. My life with my sister is easy compared to what you have/are experiencing. I admire you. It is tough and when you are going through it it seems to last “forever”. I guess the best thing is one day at a time …. maybe one event at a time.

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@timerdude

i am member of other groups here, but this seems to be the best choice for me. Scott, one of the members in your group, has invited me to join.
I am a disable vet married to another disable vet. We just moved to Colorado, in Aug. this year from Florida. I told my friends and his family that my husband could get better care from VA here. I convince him of this move, and our only grown child lives here, too. My daughter and I are not close, and she has no time or plans on helping her parents. But the real reason I push my husband for this move is me. I plan to die before him, even if he is in a wheelchair, full time. And he is 54 years and I am 66. I have been his caregiver for over 20 years, I am so burn out mentally (PTSD,too) and physically ( unable to feel my legs , but walk, and high blood pressure, due to stress. I have a painful neck and back , due to helping him off the floor, when he slips and falls, been his wound care nurse, and mental support to keep him going. He denies he needs help to other people, and prides himself to family and friends that he is not depend onone, and cares for his wife all the times(cause he drives, and I can not). My physical health is poor, and my mental health is worse. I feel so alone and just want to live in the streets, to care only about me. My husband does not touch me, only when I help him up off the floor, or care for his wounds. So how I am no a good caregiver, or wife or mom, cause nobody ever ask me what I need or want in life. I feel like workhorse , so to be not even notice when I am gone, just replace by a new wife( my husband said he would find someone, when I die, he needs help). I hope to find a friend here in this group and support.

A caregiver, looking for a caregiver…….

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Excellent thought, @sallysue. Yes, one event at a time is a very valuable thought. For almost four months my wife was on an every two-hour medicine regime and that is how I had to look at it. If I could do one, then I could do the next, etc.

I appreciate your kind words too. I believe it is of the utmost importance for caregivers to relate what they are experiencing for the benefit of all. Far too many people do not understand it or have some false ideas, which are so often perpetrated in the media. All caregivers deserve to have the public and policy makers have a more realistic understanding of what caregiving actually entails.

Peace, strength, and courage to all caregivers!

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