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?

'Highly recommend Savvy Caregiver Workshop (free) . I attended it, many yrs ago, in MI. Found out about it from the local sr center. I believe it was 6 wks, for 2-3 hrs ea. session.

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@gznqk5

'Highly recommend Savvy Caregiver Workshop (free) . I attended it, many yrs ago, in MI. Found out about it from the local sr center. I believe it was 6 wks, for 2-3 hrs ea. session.

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Hi @gznqk5 – Yes. Our Savvy Caregiver Workshop was 6 weeks with a 2 hour session each week. The workshop itself was free but if we wanted to, we could pay $10 to get the Manual that came with it. It was well worth the $10! I like to have it available to refresh my memory from time to time. For me, one of the most valuable parts was the information on stages of dementia. Can you share what you found most helpful?

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@debbraw

Hi @gznqk5 – Yes. Our Savvy Caregiver Workshop was 6 weeks with a 2 hour session each week. The workshop itself was free but if we wanted to, we could pay $10 to get the Manual that came with it. It was well worth the $10! I like to have it available to refresh my memory from time to time. For me, one of the most valuable parts was the information on stages of dementia. Can you share what you found most helpful?

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@debraw706 I also attended in Mi. Very informative. Best part was that everyone shared their experiences. And the stages explained a lot. My husband is in a facility…hardest thing ever done. Still have doubts he should be there. Our daughters were worried about my health having him home. Alzheimer and Aphasia are his diag. I'm all alone. Going through counseling…seems helpful. Highly recommend the workshop.

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this is a good outlet for stress, etc. Everyone is so helpful and all have little hints on how to deal with the daily stress we all endure. Know that everyone here wishes the best for you and your wife. Just one day at a time, and prayer helps.

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@debbraw

Hi @gznqk5 – Yes. Our Savvy Caregiver Workshop was 6 weeks with a 2 hour session each week. The workshop itself was free but if we wanted to, we could pay $10 to get the Manual that came with it. It was well worth the $10! I like to have it available to refresh my memory from time to time. For me, one of the most valuable parts was the information on stages of dementia. Can you share what you found most helpful?

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The video showing ALZ ladies making peanut butter & jelly (or ham & cheese?) sandwiches, at various stages of the disease, was the most memorable. To this day, my husband often makes his own PB & J for lunch. Encouraging independence, at any level, is so important. BTW, the 3-ring binder, full of exercises & info, was free.

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@kayakeradams

This is my first time on Mayo clinic connect. Seems to be a good resource for sharing and learning. My wife has been battling lung cancer for 3 years and it metastasized to her brain in January. It's been a roller coaster of hospital stays, doctors appointments and steady decline. I'm fortunate because I have support from family and friends. However, after becoming ill from chronic stress I realized I needed an outlet so here I am. Looking forward to reading and posting on this site. Thanks

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@kayakeradams, I add my welcome to the Caregivers group. I'd also like to introduce you to @burrkay and @cindylb who care for partners living with lung cancer.

I encourage you to start a new discussion about chronic stress and caring for someone with metastatic cancer. Connect is a great please to be able to let it out without judgement.

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@gznqk5

The video showing ALZ ladies making peanut butter & jelly (or ham & cheese?) sandwiches, at various stages of the disease, was the most memorable. To this day, my husband often makes his own PB & J for lunch. Encouraging independence, at any level, is so important. BTW, the 3-ring binder, full of exercises & info, was free.

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Yes @gznqk5 – the sandwich making video was such an eye-opener. I think our local Council on Aging had to print out the copies and buy the binders so the $10 cost of the manual just helped cover those costs. As I said, well, well worth it.

And @dianajane – I feel for you on having your husband in a memory care facility. It must be an excruciating decision to make. I'm glad you have your daughters in your corner and glad you are seeing a counselor. I just started seeing one and I agree that counseling is hugely helpful. I just found a counselor I really like. My 2nd appointment is next week. I know this is going to be more and more important as we go forward. I also find our local Caregivers Support group to be helpful. Do you have a support group in your area?

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@debbraw

Yes @gznqk5 – the sandwich making video was such an eye-opener. I think our local Council on Aging had to print out the copies and buy the binders so the $10 cost of the manual just helped cover those costs. As I said, well, well worth it.

And @dianajane – I feel for you on having your husband in a memory care facility. It must be an excruciating decision to make. I'm glad you have your daughters in your corner and glad you are seeing a counselor. I just started seeing one and I agree that counseling is hugely helpful. I just found a counselor I really like. My 2nd appointment is next week. I know this is going to be more and more important as we go forward. I also find our local Caregivers Support group to be helpful. Do you have a support group in your area?

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@debbraw Yes. DO have great support group. Once a month. Counselling therapy has been great. I am experiencing anxiety and depression. PRAYER and my church are another support. I'll pray for all of you.

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Thank you so much, @dianajane. I am glad you have that kind of support. How long has your husband been in the memory care facility?

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Debra since Jan this year. He is settling in well. Initially was constantly trying to leave and acting out when I left. Seems to be adjusting but does not interact with me. I kiss and hug him but he is platonic which is part of his frontolobal dementia….? Not sure of the spelling….indifference is part of that diagnosis. The worst is his inability to communicate. Cannot find his words. My heart is sad….although he does know who we are. Lights up when our kids and grandkids visit.

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@kw1904861

Well i think he agreed to go to therapy finally… I was gonna go for guardianship if he didnt go… Lets hope he does go….. She put him on a new med too to help with his anger… Towards me..

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@kw1904861 Have you started any therapy yet? How is it going? Been thinking of you

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Hi all. I didn't want to just come in and drop my baggage so I guess I should introduce myself. I'm from Colorado. I grew up in Iowa and was part of the "caregiving team" and a Stephen Minister at my church for many years so this is not my first go-round with helping folks who are struggling with illness or grief issues. That said, the caregiving has piled on us deep and heavy this summer and we are struggling a bit. After a 6-year battle with breast cancer, my sister-in-law passed away in August and the entire family is in grief. Losing her at 57 was a big loss to all of us, so I'm using my Stephen Ministry skills to help family members navigate their grief process. On top of that, my in-laws live with me. My FIL has significant health issues and my MIL has mental illness and dementia due to a condition called Cerebral Amyloid Angiopathy. Because she's a bully and will literally prevent him from resting and sleeping, we are constantly dealing with drama both from her treatment of him and just her liking to create scenes. Thanks for letting me join the group.

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@coloradogirl

Hi all. I didn't want to just come in and drop my baggage so I guess I should introduce myself. I'm from Colorado. I grew up in Iowa and was part of the "caregiving team" and a Stephen Minister at my church for many years so this is not my first go-round with helping folks who are struggling with illness or grief issues. That said, the caregiving has piled on us deep and heavy this summer and we are struggling a bit. After a 6-year battle with breast cancer, my sister-in-law passed away in August and the entire family is in grief. Losing her at 57 was a big loss to all of us, so I'm using my Stephen Ministry skills to help family members navigate their grief process. On top of that, my in-laws live with me. My FIL has significant health issues and my MIL has mental illness and dementia due to a condition called Cerebral Amyloid Angiopathy. Because she's a bully and will literally prevent him from resting and sleeping, we are constantly dealing with drama both from her treatment of him and just her liking to create scenes. Thanks for letting me join the group.

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Hello @coloradogirl .
As a long time Stephen Minister myself I understand what great skills you must have but I also know how hard it is to effectively care for your own family, especially with them living with you.
You undoubtedly need to get some support for yourself. Have you considered seeing a therapist to help you work through this difficult situation?
Sometimes when we are so close to a situation it becomes hard to be objective. Will you consider some counseling?

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@hopeful33250

Hello @coloradogirl .
As a long time Stephen Minister myself I understand what great skills you must have but I also know how hard it is to effectively care for your own family, especially with them living with you.
You undoubtedly need to get some support for yourself. Have you considered seeing a therapist to help you work through this difficult situation?
Sometimes when we are so close to a situation it becomes hard to be objective. Will you consider some counseling?

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Hi @hopeful33250 , you are right and i am being careful to stay within the bounds of my Stephen Ministry training and not take on too much. Honestly, all I am doing is letting our younger ones talk through their feelings since this is the first death they have encountered and it is a big loss. One of the 20-something nieces is struggling with the standard American approach of "the funeral is over, get back to normal." My in-laws don't seem to have even noticed that their son's wife is gone, although they did attend the funeral. (That might be a blessing…)

I have considered going back to counseling for the in-law situation but I'm not sure how much good it would do. I have done my work in therapy over the years due to childhood trauma / PTSD and have both solid coping skills and a strong network of people that support me. It's just all a bit much all at once – funny how life does that sometimes.

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@coloradogirl

Hi all. I didn't want to just come in and drop my baggage so I guess I should introduce myself. I'm from Colorado. I grew up in Iowa and was part of the "caregiving team" and a Stephen Minister at my church for many years so this is not my first go-round with helping folks who are struggling with illness or grief issues. That said, the caregiving has piled on us deep and heavy this summer and we are struggling a bit. After a 6-year battle with breast cancer, my sister-in-law passed away in August and the entire family is in grief. Losing her at 57 was a big loss to all of us, so I'm using my Stephen Ministry skills to help family members navigate their grief process. On top of that, my in-laws live with me. My FIL has significant health issues and my MIL has mental illness and dementia due to a condition called Cerebral Amyloid Angiopathy. Because she's a bully and will literally prevent him from resting and sleeping, we are constantly dealing with drama both from her treatment of him and just her liking to create scenes. Thanks for letting me join the group.

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Hi @coloradogirl It is good to have you here with the caregivers group! I read your post as well as your other post and it sure seems like you have your caregiving plate filled to overflowing. It is easy to get overwhelmed with caregiving as you know! I bet you are thankful for your Stephen Ministry training!

While each patient and situation is different, I know from my experiences with my MIL (dementia) and my wife (brain cancer with many dementia-like symptoms), it was always very hard to keep telling myself and believing 'it's the disease talking not the person'.

Also, my wife's neuro doctor told us, very early on in her disease progression, that a person with a brain illness often has their personality and personality quirks magnified a hundred fold. He also said rarely does their personality change, but what they were like before is a beast with brain diseases. It was very true with my wife!

It was interesting to me to read about how your MIL interacts with your FIL. When my dad was dying from congestive heart failure my mom all of a sudden began to constantly nag him to not rest, do more, sleep less, keep going, etc. Her doctor told us it was her way of coping with her fear of losing my dad.

What do you see as your biggest caregiving challenge right now?

Strength, courage, and peace

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