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?

@kepi

Hi i am new to this group my name is Kepi and i care for my husbands mom whom i love very much we moved in with her in Dec 2015 because she had some silent strokes that has left her legally blind and in Feb on the 8th she was Dx with late on set Alzhymers. In Dec i downloaded a book called the 36 Hours because i felt there was something else going on with her. On the 8th of Feb. Her secondary caregiver brought home the same book from her Dr. She was put on Aricept after her mmse was 18/30 in May her mmse was 25/30 after i looked at her lab work i noticed her vitamin B levels were way down along with her vitamin E so I also added those in February. She is doing really great. And of course we had a small dog which she now owns lololol Bella just lives mom and mom loves Miss Bella. Thank you for ketting me share and join this group.

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Hi @kepi I am sorry beyond words for all the losses you have suffered. More than most and your strength must be ironclad!

You are right — caregiving is all about the care and not ‘things’. Tough adjustment as we give up more and more, but the inner peace can not only be a source of strength, but refuge as well.

God bless!

Liked by kepi

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Amen to that

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@macbeth

@shortshot80

I, too, have been uncharacteristically down for about the past month, and I am not a crier or complainer, either, and am also, usually, very strong. So…I hear you. I am sending you strength, prayers, and good vibes!

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Thank you Indiana Scott. This morning is a little better for me, I have to just hold my retorts to my husband. He isn’t feeling too sharp either. We will be married 66 years next month. Things just keep going. I’m not feeling to sharp either, Need to have another cat scan to see if any of the cancer has grown. Feel like I’m getting a cold, or something. Being married this long, we sometimes share little barbs with one another. Making spaghetti tonight. Nancy

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Yes, each day is different and expect ups and downs. As I’ve said before, just take one day at a time and enjoy the good times.

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@macbeth

@shortshot80

I, too, have been uncharacteristically down for about the past month, and I am not a crier or complainer, either, and am also, usually, very strong. So…I hear you. I am sending you strength, prayers, and good vibes!

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@shortshot80 Nancy … pasta here tonight too 🙂

I am convinced if my wife and I had agreed on everything all the time and not suffered a few slings and arrows we’d have left one another early on!

Thanks for the smile!

Scott

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Hi, I have been a caregiver since 2007 for my terminally ill dad who is battling Multiple Myeloma and now under the care of hospice, it has been the hardest years of my life. Now that I’m sick with stage IV CKD severe and many other illnesses I’m unable to give him the care I use to give, does anyone else feel guilty when their unable to continue care for their loved one?

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Hi @megwill100
My heart aches for you. I know it is so incredibly difficult.

My mother was dying of Stage lV GBM and I was so busy being caregiver, nurse, doctor and daughter came last. Towards her final days I was not able to care for her in the way she needed. I was finally able to be daughter.

It is ok to ask for help. It gives you time to accept and to be his daughter. Just try to enjoy the time you have now. You are helping him, just in a different way.

Prayers for healing
Dawn

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@megwill100

Hi, I have been a caregiver since 2007 for my terminally ill dad who is battling Multiple Myeloma and now under the care of hospice, it has been the hardest years of my life. Now that I’m sick with stage IV CKD severe and many other illnesses I’m unable to give him the care I use to give, does anyone else feel guilty when their unable to continue care for their loved one?

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Hello @megwill100 Nice to make your e-acquaintance here! I am so very sorry to hear of your, and your father’s, health journeys.

I am Scott and I was my wife’s caregiver for 14 years while she fought her battle with brain cancer. It must be very challenging for you to have to manage your care and worry about your dad too.

Caregiving is never an easy ‘assignment’ and always seems to come with some level of guilt even in the OK times, but when you get in those ‘rock and a hard spot’ situations the guilt can seem crushing. .

I know of no easy suggestion or answer, but can only say try and keep the guilt in check as you take on your own battles. Take pride in the care you were able to give your dad for so many years and know in your heart it must have made a huge difference to him! Easier said than done, I realize.

As a dad myself I would tell my own child to focus on themselves now…and not to feel guilty in doing so.

Strength and courage to you!

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@megwill100

Hi, I have been a caregiver since 2007 for my terminally ill dad who is battling Multiple Myeloma and now under the care of hospice, it has been the hardest years of my life. Now that I’m sick with stage IV CKD severe and many other illnesses I’m unable to give him the care I use to give, does anyone else feel guilty when their unable to continue care for their loved one?

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Hi Meg, Unfortunately guilt is an all too common emotion that many caregivers struggle with. I encourage you to share about this in the discussion Scott started. It is aptly named “The Caregivers’ Guilt Dumpster – Open for business” http://mayocl.in/2cHbo19

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@megwill100

Hi, I have been a caregiver since 2007 for my terminally ill dad who is battling Multiple Myeloma and now under the care of hospice, it has been the hardest years of my life. Now that I’m sick with stage IV CKD severe and many other illnesses I’m unable to give him the care I use to give, does anyone else feel guilty when their unable to continue care for their loved one?

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I believe we all care to the best of our ability and yes we feel guilty because we can’t continue with the family care giving.. But there is no need to feel guilty because circumstances happen and we are unable to “finish the care giving job we started. No guilt!
shortshot80 / Nancy

Liked by Candy, Debby - @tavi

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@megwill100, Hi, this is Rosemary, again. We keep meeting!
I want to share my experience with you.
My mom’s husband died in Nov. 2008. He was her caregiver: Multiple Mylenoma, severe hearing loss, dementia. He had covered for a lot of her dementia, and we had blamed her ‘ways’ on her not hearing. We quickly learned that mom needed 24/7 care. At this exact time, my liver disease was making its downward spiral to cirrhosis. I was in the process of evaluation for listing for a liver transplant, and feeling and looking very sick. My dear brothers told me to go home (120 miles) and stay there and take care of me. This was hard because I needed mom, and my mom needed me. They brought her to see me when I was in ICU . My mom, with all of her own needs, knew me, and she wanted to stay with me and care for me. I tell you that because even in her suffering, her concern was for me. Well, after that I was transported 800 miles away to Rochester. My brothers would keep me updated. They said she kept wanting to go to take care of me. However, on the phone, she did not know me. Months passed. I received my organ transplant and mom continued to decline. She was in hospice care by the time I finally got home. My husband and I went to see her, for the very last time. Mom actually woke out of her delirium when I called out to her. I was able to let her know that I was better. We said good bye. She never woke again. She died 3 days later. My brothers feel certain that she waited to see that her little girl was going to be okay. The love that I felt at that special moment with her made up for all of the guilt that I had been feeling.
Thus my purpose in relaying this long episode: Our parents love us and they want the very best for us. Even when/if they cannot tell us. I can’t take away your guilt, but I can’t take away your other health issues, either. I am sorry that you have found yourself as both a patient and a caregiver. Its not an easy road. I can see that by the many responses you are not alone. I’ll keep you in my prayers. Rosemary

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Wonderful, granddaughter was married over the weekend at Mt. Hood. We stayed at a motel in Hood River. Took a motel, it’s too long a drive to attend the wedding and drive back home 190 miles for us one way. Anyway the wedding was great. I met Mikala at my daughter Becky’s home.Before the wedding Took the gifts there, Also bought an Ottomen along with the Amish basket full of (sea foods) She like them all. It was a great weekend, but I’m glad it’s over. Both Bob & I had a great weekend.
I had a cat scan last week. See the oncologist on the 14th.

Liked by macbeth

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Hi, my name is Cheryl, age 56, and my husband, age 57, is going to be having a allogenic stem cell transplant next week. He is being treated for ALL B cell Leukemia. Is anyone here going through a similar experience? Thank you, Cheryl

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@cgar1959

Hi, my name is Cheryl, age 56, and my husband, age 57, is going to be having a allogenic stem cell transplant next week. He is being treated for ALL B cell Leukemia. Is anyone here going through a similar experience? Thank you, Cheryl

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Hi Cheryl,
Welcome to Connect and the caregivers group.
I’m tagging fellow members @reflections @azjulie @irishk who may be able to offer some insight into stem cell transplant from a caregivers perspective.

I’m so glad you found our group here. We look forward to getting to know you a bit better. If you’re comfortable with it, can you tell us a bit more about your situation? When was your husband diagnosed? How are you preparing for next week’s transplant?

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Hello & thank you . I’m JULZ.
I am the sole caregiver for my 86 yr old Mom who has frontaltempral dementia , congestive heart failure , fluid in her lungs as well as inoperable breast cancer in both breasts as well as behind her bladder, & glaucoma.
It has been quite the journey over the past two years starting with the Alzheimer’s.

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