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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Thankyou indianascott. Husb just started being mean. It helps to hear your touching way to deal with it. So much of your post is how I feel and react to people and my husb. Thanks

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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 for you. We've been married almost 58 yrs. I'm in it for the long hall but like the most of us I didn't sign up for this. Primary Progressive Aphasia with Alzheimer's is just as hard on the patient.

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My name is Mona and i have been caregiving for 4 years now. Social work before that. I love what i do but many of my clients have serious health problems and just want to die. They feel there is no reasin to stay in such pain or a body that doesnt work anymore.
I try to encourage, smile and give them purpose but I sometimes agree with them and dont know what to say or do. Any suggestions?

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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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Hi, My husband also has PPA and Posterial Cortical Atrophy. It is very challenging to communicate to say the least! He gets frustrated not being able to get the words out and I just try to guess what he means. I encourage him to keep trying but he is saying less and less. I continue to pray for patience for him and for me. Look for the small blessings in each day and let go of the frustrations.. Not easy but we have to keep our sanity somehow!

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My name if Clara. I have my husband in a Altzheimers Care Home but the stress when I visit him almost makes me sick. He has been on a downhill slide for at least 10 years. Up until 2 years Ago i was his caregiver..

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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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Hi Remi. Thanks for sharing. I could have written that post word for word. It is so disheartening not being able to understand what he's trying to say and of course he gets angry about it. A long with changes of Alzheimer's he is so miserable. What posterialcorticalAtrophy? And did his PPA come about with stroke? My husb didn't have a stroke. Praying for patience and trust in God's plan for us…..looking forward to chatting again. Diana

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@dianajane

Thank You for the warm welcome. I am Diana, live in S W Michigan, the fruitbelt and home to many grapevine and wineries. We are orig from Chicago. Husb has PPA Alzheimer's. Diagnosed 3 years ago. I'd appreciate chatting about caregiver techniques and just have a bit of support. I am getting some support from family. 3daughters and a son. Girls' husb are gems and close by. But they have their own young families or grand kids to cater to. Son lives 2 hrs away, and is busy with "happy wife happy life", but she is a great person. Hope I don't sound too self centered but having issues,with depression and anxiety. Looking forward to chatting

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Hello @dianajane I am sorry to read of the healthcare challenges you are facing with your husband's situation. It is always a challenge to be a caregiver, but especially when our patient has mental challenges from dementia and related diseases. I am Scott and I was my wife's caregiver during her battle with brain cancer, during which she had multiple dementia-like symptoms. I also was one of the caregivers for my mother in law who had dementia.

We have two adult children and we wanted them to be able to live their lives without having to give up too much for their mom's care. It made caregiving a bit tougher for me, for sure, but did make my wife feel better seeing them be able to accomplish things they wanted to in their lives. It is a fine line to walk and a very difficult situation in caregiving.

I can tell you I fought depression and being anxious during much of my caregiving years for sure! It is impossible not to I believe! Plus it is an incredibly heavy burden to carry! I like to say "Superman and Wonder Woman only exist in the comics. Caregivers can do their best, but it is impossible to be a Super Hero!

What kind of hints and techniques are you interested in? Any particular area of caregiving! Folks here are always very happy to share what they have learned during their caregiving journeys!

Strength, courage, and peace!

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@bamby

My name if Clara. I have my husband in a Altzheimers Care Home but the stress when I visit him almost makes me sick. He has been on a downhill slide for at least 10 years. Up until 2 years Ago i was his caregiver..

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Bless your heart. Clara how did you know it was time for the home? We are 4 yrs into diagnosis so a long road ahead of us. Husband cannot find his words. I dont know how to help him communicate his needs. He cant write anymore and pictures dont help. He is frustrated and depressed. Talks about hurting himself. I'll keep you & your husband in my prayers. Looking forward to future chats with you.

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@monarae

My name is Mona and i have been caregiving for 4 years now. Social work before that. I love what i do but many of my clients have serious health problems and just want to die. They feel there is no reasin to stay in such pain or a body that doesnt work anymore.
I try to encourage, smile and give them purpose but I sometimes agree with them and dont know what to say or do. Any suggestions?

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Hello @monarae It is nice to e-meet you here, Mona. I am Scott and I am pleased to read your question here! It is a tough one for sure.

I don't have a magic answer, but I know frequently, during the 14+ years my wife battled her brain cancer she asked me the same question in one form or another. It was a bit different in that I was caregiving for my wife and not someone else, but often I would tell her we needed more time to be sure we had talked about everything she wanted me to know, remember, tell others, etc. This often would help her move into a different place for a bit and change her thinking.

Often times I would also just say 'honey, I just don't know why. I guess none of us really know why we have to suffer, especially when it came from nothing we ever did as a person.

As I said no magic answers, but I wish I did! What have you tried that has worked so far?

Strength, courage, and peace!

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@monarae

My name is Mona and i have been caregiving for 4 years now. Social work before that. I love what i do but many of my clients have serious health problems and just want to die. They feel there is no reasin to stay in such pain or a body that doesnt work anymore.
I try to encourage, smile and give them purpose but I sometimes agree with them and dont know what to say or do. Any suggestions?

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Bless you and what you do. Difficult to know how to respond with someone wanting to die. It certainly has crossed my mind. At times my husband who has PPA Alzheimer's makes comments like that. I've been able to encourage him somewhat but like you I see the limited quality of life and my attitude changes. Just being a good listener can do most good. The less I comment the better for both of us. If the patient is religious perhaps the fact that we do not have the right to take a life including our own could be mentioned.

Liked by monarae

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@bamby

My name if Clara. I have my husband in a Altzheimers Care Home but the stress when I visit him almost makes me sick. He has been on a downhill slide for at least 10 years. Up until 2 years Ago i was his caregiver..

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Hello @bamby It is nice to e-meet you here at Mayo Connect, Clara! I am so sorry to read of your husband's healthcare challenges. It is so very hard to see our loved ones suffer and be in a situation that is beyond our ability to care for or help them with.

I know while I took care of my wife, I would frequently have physical reactions to her deteriorating condition. We love and then we really hurt when we see our loved one suffering. No wonder caregiving is so stressful! Interestingly, all four of the hospice nurses who cared for my wife when she chose to go into hospice care all are no longer working in that branch of healthcare. When my wife passed away they each told me they were just too drained to continue with others. I was shocked, but then it dawned on me — if caregiving is that hard on trained professionals, it is no wonder it's so hard on us family caregivers!

I don't know if it would help, but what if you visited when one of the care staff were with him to help you have some support when you are visiting him? Just a thought. Wish I had more!

Peace, strength, and courage!

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@dianajane

Thank You for the warm welcome. I am Diana, live in S W Michigan, the fruitbelt and home to many grapevine and wineries. We are orig from Chicago. Husb has PPA Alzheimer's. Diagnosed 3 years ago. I'd appreciate chatting about caregiver techniques and just have a bit of support. I am getting some support from family. 3daughters and a son. Girls' husb are gems and close by. But they have their own young families or grand kids to cater to. Son lives 2 hrs away, and is busy with "happy wife happy life", but she is a great person. Hope I don't sound too self centered but having issues,with depression and anxiety. Looking forward to chatting

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Thank you Scott. I too have bouts of anxiety and depression but try desperately to take one day At a time. I fear being unable to care for my husband and leave a double burden on our children. 3 have younger school and college age children, 1 has grandchildren and all are still working besides. They are very supportive even so. My main concern is that my husband cannot find his words and is unable to communicate his needs. I'm going to ask his neurologist if we should look into some patient trials that may be available if it's even worth the time. Just finished with the 2nd speech therapist who was unable to help. It is a progressive disease and he may eventually have trouble swallowing choking and not be able to make any sounds. I'm scared. He doesn't know this. He's not very active. Sits most of the day but is doing physical therapy lately. Sorry to ramble. Looking forward to chatting..

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@bamby

My name if Clara. I have my husband in a Altzheimers Care Home but the stress when I visit him almost makes me sick. He has been on a downhill slide for at least 10 years. Up until 2 years Ago i was his caregiver..

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Your post brought tears to my eyes, @dianajane Yours is definitely a very tough journey.

I simply wish I had something soothing to offer other than saying I will hold you in my thoughts extra tonight.

Peace!

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@dianajane

Thank You for the warm welcome. I am Diana, live in S W Michigan, the fruitbelt and home to many grapevine and wineries. We are orig from Chicago. Husb has PPA Alzheimer's. Diagnosed 3 years ago. I'd appreciate chatting about caregiver techniques and just have a bit of support. I am getting some support from family. 3daughters and a son. Girls' husb are gems and close by. But they have their own young families or grand kids to cater to. Son lives 2 hrs away, and is busy with "happy wife happy life", but she is a great person. Hope I don't sound too self centered but having issues,with depression and anxiety. Looking forward to chatting

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Good evening @dianajane You aren't rambling at all! Just doing what every caregiver I have ever met has done….search out some way to deal with the sense of loss we each grapple with daily, the isolation of caregiving, and looking for any hint, tip, or kind word we can find to help us have a day a tiny bit better!

My wife was never qualified for any of the patient trials during her illness, but she would have done it in a New York minute! She said, over and over, if her suffering could help someone else in some way, she'd do whatever she could.

One thing which occurred due to my wife's illness was it had a positive effect on our grandsons. Seeing the situation of their grandmother they developed an amazing deeper empathy for people in their lives. I never saw that coming for sure.

Feeling helpless when we are caregiving is a double whammy. It hurts us inside as we wish we could do more for our patient and outside when we so want to see our efforts help improve our patient in some way — any way at all!

I hope Connect can give you the same support as it has me!

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@monarae

My name is Mona and i have been caregiving for 4 years now. Social work before that. I love what i do but many of my clients have serious health problems and just want to die. They feel there is no reasin to stay in such pain or a body that doesnt work anymore.
I try to encourage, smile and give them purpose but I sometimes agree with them and dont know what to say or do. Any suggestions?

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I try to help them find a purpose instead of just sitting in a chair watching t.v.
It took me a year and a half to get one client out to play bingo once a week. He enjoys it and is making some acquaintences. I donate the time to transport him the one block he cant walk and am trying to find a donated electric scooter. For him.

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