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?

Welcome to the group! You have just joined people who understand–and sympathize–with your life. This is my 23rd year as a family caregiver. My mother had vascular dementia and I was her caregiver for 9 years. My twin grandchildren's parents died from the injuries they received in separate car crashes. (Our daughter was their mother.) The court appointed my husband and me as their guardians/caregivers. In 2013 my husband's aorta dissected and he had 3 emergency operations. When he awakened from the last surgery he was paraplegic. I became his caregiver the night I drove him to the hospital. So what have I learned? I kept my occupation as a freelance health/wellness author because it's my self-care. I shifted the focus of my writing to caregiving and wrote a series for family caregivers. I've also written two additional caregiving books and my latest is The Grandma Force: How Grandmothers are Changing Grandchildren, Families, and Themselves. I still volunteer with a couple of organizations because that's what I do. I still give talks and workshops because that's what I do. Every so often I have a "nothing day," a time to relax, kick back because that's what I need to do. I cherish the time I spend with my disabled husband because each minute is precious. We have been married for 62 years and are a caregiving team. You will figure out your approach to caregiving and the self-care steps you need to take. Again, welcome!

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@harriethodgson1

Welcome to the group! You have just joined people who understand–and sympathize–with your life. This is my 23rd year as a family caregiver. My mother had vascular dementia and I was her caregiver for 9 years. My twin grandchildren's parents died from the injuries they received in separate car crashes. (Our daughter was their mother.) The court appointed my husband and me as their guardians/caregivers. In 2013 my husband's aorta dissected and he had 3 emergency operations. When he awakened from the last surgery he was paraplegic. I became his caregiver the night I drove him to the hospital. So what have I learned? I kept my occupation as a freelance health/wellness author because it's my self-care. I shifted the focus of my writing to caregiving and wrote a series for family caregivers. I've also written two additional caregiving books and my latest is The Grandma Force: How Grandmothers are Changing Grandchildren, Families, and Themselves. I still volunteer with a couple of organizations because that's what I do. I still give talks and workshops because that's what I do. Every so often I have a "nothing day," a time to relax, kick back because that's what I need to do. I cherish the time I spend with my disabled husband because each minute is precious. We have been married for 62 years and are a caregiving team. You will figure out your approach to caregiving and the self-care steps you need to take. Again, welcome!

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Thanks for your message! We have very similar stories to share! After I took care of my mother, who passed away from cancer at 44, my husband and I became my youngest brother's legal guardian, he was only 12 and my mother was a single parent to five children and I am the oldest. I feel like I've been taking care of others my entire life and I think it's finally catching up with me now with my husband's Glioblastoma diagnosis.
Prayers for all!

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I agree with Harriet. I have been caregiver for my husband of 65 years for the past 5 years?? who has Alzheimer's Disease with vascular dementia. While he was still mobile and able to leave our home, I took him along and tried to keep up with taking him to events and occasions he had previously attended. As it became harder to transport him, I kept up my commitments to the organizations I had always been an active part of. I told them I could not attend their meetings and events, but I could do things from he home for them, so took over the newsletters for three groups, and I continue to edit those for two of them. They are quarterly so don't take a great deal of time.

I had regular contact with my church and the women's group there, as well as attending monthly lunch with two groups of people who were employed at the school with me and the genealogy group that had disbanded a year ago. About 7 of us who had become good friends, felt we wanted to keep in touch so chose a monthly lunch. We attend if we are able and since most of them can still travel, they come when they are available.

My advice to all caregivers is to not isolate yourself but keep in touch with friends, family, church, etc. Many people will say at times like this "What can I do to help you?" When you need help, call them. They don't know what you need unless you ask, I have taken advantage of this several times and they are always gracious and ready to help again when I ask.

My husband who is now 89 has been in a care center about 45 miles from our home for almost 3 years, i visit every other day if weather permits. Since we live in Iowa, winter is always iffy, but I watch the news and if schools are called off, I don't go. He knows us but is unable to do anything but feed himself. About a year ago he was transferred from the Memory Unit to the skilled nursing area since he was unable to walk at all and needed more care. This has worked well and when we had an opportunity to move him to a facility closer to home, I chose to leave him where he was as the care is so good, staff is very stable, some having been there 30 years, and change was so difficult when he went there.

I will continue to remain in our home with our rat terrier, Suzie, while I can still drive. I am 84 so it it always a question of how long, but I fell well and have a daughter and son living close. I'm how able to attend meetings of the organizations and church on a regular basis, so that keeps me occupied and with friends.

Just take one day at a time, and don't regret what has happened. We can only help with the future and do nothing about the past. The pastoral visitor came one afternoon this past week, and as I was reminiscing about past years and events that I had encountered, she remarked, "You have had so many tragic events and still seem so cheerful." I replied that I had just read a statement that fit me. "It is said that "God only gives you what you can handle, but I wish he didn't have so much faith in me." Fits my life to a T. So each morning I spend time with devotions and prayer and then go on with what the day brings.
Ruth

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@debraannk

My name is Deb and I'm currently a caregiver to my husband, who was diagnosed with Glioblastoma early in 2019. I also was a caregiver to my mother, who passed away from cancer at the age of 44, back in 1987.
This is certainly a very stressful time of my life and I hope to hear from the rest of all you amazing caregivers.
Deb

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Hi @debraannk So nice to e-meet you here, even if it is due to such a difficult health issue for your husband. I'm Scott and I was my wife's caregiver during her 14+ year war with brain cancer. She was diagnosed at 49.

I agree 100% with you that caregiving is certainly an incredibly stressful time! I often say caregiving was the toughest job I never applied for and the only one that came with no instruction manual, employee handbook, or benefits package. I also believe it is a job that fundamentally changes a person. Sometimes for a short period and sometimes for a lifetime. I know my caregiving years truly changed how I look at the world thanks to the myriad of lessons it taught me.

I hope the sun is shining on you wherever you are today! It always tended to make my days just a bit better no matter how stressful!

Strength, courage, and peace

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@rmftucker

I agree with Harriet. I have been caregiver for my husband of 65 years for the past 5 years?? who has Alzheimer's Disease with vascular dementia. While he was still mobile and able to leave our home, I took him along and tried to keep up with taking him to events and occasions he had previously attended. As it became harder to transport him, I kept up my commitments to the organizations I had always been an active part of. I told them I could not attend their meetings and events, but I could do things from he home for them, so took over the newsletters for three groups, and I continue to edit those for two of them. They are quarterly so don't take a great deal of time.

I had regular contact with my church and the women's group there, as well as attending monthly lunch with two groups of people who were employed at the school with me and the genealogy group that had disbanded a year ago. About 7 of us who had become good friends, felt we wanted to keep in touch so chose a monthly lunch. We attend if we are able and since most of them can still travel, they come when they are available.

My advice to all caregivers is to not isolate yourself but keep in touch with friends, family, church, etc. Many people will say at times like this "What can I do to help you?" When you need help, call them. They don't know what you need unless you ask, I have taken advantage of this several times and they are always gracious and ready to help again when I ask.

My husband who is now 89 has been in a care center about 45 miles from our home for almost 3 years, i visit every other day if weather permits. Since we live in Iowa, winter is always iffy, but I watch the news and if schools are called off, I don't go. He knows us but is unable to do anything but feed himself. About a year ago he was transferred from the Memory Unit to the skilled nursing area since he was unable to walk at all and needed more care. This has worked well and when we had an opportunity to move him to a facility closer to home, I chose to leave him where he was as the care is so good, staff is very stable, some having been there 30 years, and change was so difficult when he went there.

I will continue to remain in our home with our rat terrier, Suzie, while I can still drive. I am 84 so it it always a question of how long, but I fell well and have a daughter and son living close. I'm how able to attend meetings of the organizations and church on a regular basis, so that keeps me occupied and with friends.

Just take one day at a time, and don't regret what has happened. We can only help with the future and do nothing about the past. The pastoral visitor came one afternoon this past week, and as I was reminiscing about past years and events that I had encountered, she remarked, "You have had so many tragic events and still seem so cheerful." I replied that I had just read a statement that fit me. "It is said that "God only gives you what you can handle, but I wish he didn't have so much faith in me." Fits my life to a T. So each morning I spend time with devotions and prayer and then go on with what the day brings.
Ruth

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@rmftucker I loved reading your post! You are quite inspiring. I do hope you’ll stay in touch with everyone on Connect—you have so much to share! Becky

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Loss and Packing belongings: At 78, with friends with end-of-days illnesses, I am getting ready for the day with distribution of house items after a friend passed away. She could not take care of her cats and her personal care when her illness caused hospitalization and death in a skilled nursing care facility. She refused hospice. In 1998, my husband and I lived with his mother when her mouth cancer returned and she could not swallow. She was in remarkable good health until the effects of treatment and possibly a new metastasis caused her demise. This time, with my friend's son overwhelmed with working and packing up her apartment, I volunteered to help. It's a slow process, and the extra month to clean up is almost over! The lessons I'm learning include my goal of getting rid of years of saving stuff that have no meaning any longer!

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Hi @ceclark41 You must have been good friends. I imagine that is not an easy chore!

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@ceclark41

Loss and Packing belongings: At 78, with friends with end-of-days illnesses, I am getting ready for the day with distribution of house items after a friend passed away. She could not take care of her cats and her personal care when her illness caused hospitalization and death in a skilled nursing care facility. She refused hospice. In 1998, my husband and I lived with his mother when her mouth cancer returned and she could not swallow. She was in remarkable good health until the effects of treatment and possibly a new metastasis caused her demise. This time, with my friend's son overwhelmed with working and packing up her apartment, I volunteered to help. It's a slow process, and the extra month to clean up is almost over! The lessons I'm learning include my goal of getting rid of years of saving stuff that have no meaning any longer!

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@ceclark41 While that was such a gift you gave to her son to help out, do you think it may have been a gift to yourself, also, to help you grieve her passing? Packing up an apartment couldn't have been that easy as you figure out what to do with so many things. Bless you!
Ginger

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I’m looking for a memory care facility using lots of different resources—digital and company services. I have talked to so many people in the “business”and read so many conflicting reviews that I feel like I’m going crazy. It took me a while to realize that for many this is a “sales” job where people get paid if they place someone in a facility they have a contract with. Also the facilities stay in business when they can convince someone to place their loved with them, so what can you really believe??? I I’ve also realized some of the “comments” online can be from people with “an axe to grind”, so again what do you believe. I can’t place my husband of almost 50 years anywhere I don’t feel 100% confident about. Any help you can give me will be hugely appreciated!! Desperately, Talie

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I would visit at several times a day and try to get a feel of how the caregivers are responding to the residents. Also take to a local social worker. They are wonderful help in finding placement that fits the person. Get involved with a support group. Just listening to people there will give you an idea of where the best place is for your situation.

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@talie

I’m looking for a memory care facility using lots of different resources—digital and company services. I have talked to so many people in the “business”and read so many conflicting reviews that I feel like I’m going crazy. It took me a while to realize that for many this is a “sales” job where people get paid if they place someone in a facility they have a contract with. Also the facilities stay in business when they can convince someone to place their loved with them, so what can you really believe??? I I’ve also realized some of the “comments” online can be from people with “an axe to grind”, so again what do you believe. I can’t place my husband of almost 50 years anywhere I don’t feel 100% confident about. Any help you can give me will be hugely appreciated!! Desperately, Talie

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@talie Good morning. What an awful decision you’re having to make. Have you checked your states ratings list? They are required to teach all facilities to make sure they meet Medicare standards. Also check Healthgrades—they also follow doctors and facilities. I also suggest talking to the folks at the Area Agency on Aging in your town. Years ago I worked as a nurse in a nursing home. It wasn't perfect but the patients all got great care. I certainly hope you find something and feel ok with what you find.

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@talie

I’m looking for a memory care facility using lots of different resources—digital and company services. I have talked to so many people in the “business”and read so many conflicting reviews that I feel like I’m going crazy. It took me a while to realize that for many this is a “sales” job where people get paid if they place someone in a facility they have a contract with. Also the facilities stay in business when they can convince someone to place their loved with them, so what can you really believe??? I I’ve also realized some of the “comments” online can be from people with “an axe to grind”, so again what do you believe. I can’t place my husband of almost 50 years anywhere I don’t feel 100% confident about. Any help you can give me will be hugely appreciated!! Desperately, Talie

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Hi @talie When I looked into this in our local area I first went to our local hospice organizations and had conversations with the staff there. In our case I found they had no axe to grind, no financial interest in one place over another, and they really had a solid 'inside scoop' if you will since they were friends, colleagues, or past colleagues of many of the staff at the places.

Wishing you strength, courage, and peace!

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@becsbuddy

@talie Good morning. What an awful decision you’re having to make. Have you checked your states ratings list? They are required to teach all facilities to make sure they meet Medicare standards. Also check Healthgrades—they also follow doctors and facilities. I also suggest talking to the folks at the Area Agency on Aging in your town. Years ago I worked as a nurse in a nursing home. It wasn't perfect but the patients all got great care. I certainly hope you find something and feel ok with what you find.

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Very, very helpful. I will follow through on your advice. Do you by any chance know anything about Senior Services of America. They have a facility in Gig Harbor, Wa, I’ve toured and researched and am getting such conflicting reports that I feel like my head is spinning. I will look them up on Healthgrades but any help anyone can give would be much appreciated. I have looked them up on my state’s DSHS website.
Talie

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@colleenyoung

Hi everyone,
As the number of discussions related to caregiving increase, it was time to open a new group dedicated to caring for someone who has dementia. Many of you have already participated in discussions centered around dementia, such as mild cognitive impairment, Alzheimer's, long term care, medications, activities, self care and more. Those discussions have been moved to the new group.

General caregiving discussions and caregiving specific to other situations, such as cancer, ALS, Parkinson's, aging, lung disease, transplant, etc will remain in the Caregivers group (https://connect.mayoclinic.org/group/caregivers/)

If you are caring for someone living with dementia, I invite you to +Follow the Caregivers: Dementia group https://connect.mayoclinic.org/group/caregivers-dementia/

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CV0

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In reply to @kathymcl "CV0" + (show)
@kathymcl

Hi @kathymcl, It looks like your message got cut off. How are you doing?

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