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Moderator

Meet fellow Caregivers - Introduce yourself

Posted by Colleen Young, Connect Director @colleenyoung, Aug 27, 2016

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?

Interested in more discussions like this? Go to the Caregivers Support Group.

Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 27, 2019
In reply to @pattyinal "I am Patsy. My husband, an aerospace engineer, is the smartest man I know, but Mild..." + (show)
@pattyinal

I am Patsy. My husband, an aerospace engineer, is the smartest man I know, but Mild Cognitive Impairment has robbed him of all those engineering skills. He is still physically able, a sweet, kind husband, likes to be socially active but cannot remember what happened 30 seconds ago. Unable to reason, he gets frustrated and so do I! It can be physically, mentally, and emotionally exhausting. But when I say, “Lord, I cant do this!” He says, “No, but I can.”

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Hi @pattyinal, I add my welcome. I want to introduce you to @debbraw and @annavard. Their husbands also have MCI. Like you, they know exactly the frustrations that changing cognitive abilities bring for both of you.

Patsy, when did you start to notice the changes in your husband?

REPLY
annavard | @annavard | Jul 27, 2019
In reply to @ytmorgan1 "Hello to all, My husband July 1st woke up and could not walk 10 steps before..." + (show)
@ytmorgan1

Hello to all, My husband July 1st woke up and could not walk 10 steps before he sat down sweating very pale and a yellow tint to his skin, plus he could not breath.. I immediately rushed him to the nearest ER I could think of.
They immediately hooked him up to oxygen, IV fluids and called an ambulance to move him to the best hospital in our area.

He stayed in ICU 11 days..his heart was completly surrounded by fluid in which a drain was placed into the heart sack an came out of his chest into a colostomy bag....the fluid was pretty much all blood red.
It took about 3 days to drain his heart sack they said had I not brought him in when i did his heart would have stopped beating from the pressure of the fluid.
After the surgery a Cardio Dr came in and said point blank see that fluid.... its cancer. see this monitor look at the mass on his lung its cancer. Needless to say we where both in Shock as my husband is a non stop gardner, cook and enjoying his retirement at age 72. Stays busy always.

After 10 days in ICU , 4 days in a floor down in a private room he was going to come home and he was so happy as he had never been in the hospital before.

I brought him home and his Oncoligist appt was 12 days later...seemed to far away for me. I was uncomfortable and scared to bring him home.
1 and a half days later same scenario as the July 1st. back to ER at hospital...his lungs where almost filled with fluid..they immediately put him an antibiotic IV and drained one lung...yay he can breath we where happy. 2 days later they drained the second lung 2 liters of fluid....the first lung had a bit more.
He stayed another night till they could MRI his brain to ensure the cancer had not spread..he started the test made the tech stop after 25 min and she took him back to his room. The next day he said I'm ready to go home I said wonderful ....until the nurse informed me he had not completed the MRI...and had to have it done...I said may I take him to a place in the am close to home, sure we got him released and his now home. The next morning at 8 I got him as weak as he was and out of breath to have the MRI.
This Monday is the long awaited Oncologist appt. He will be given his options.

All that said I noticed after his 10lb weight loss in 6 days and constant coughing up so much mucus, blood I literally threw up...not a very good nurse but I did what any caregiver would do and cleaned up for my husband..
He seemed very confused when I got him up from a 4 hr. nap and he was saying things about people visiting him and just scared me really bad I just assured him no one was here and if they where they have left...he said good I dont want company. Again the next morning more hallucinations and almost as if he developed dementia
overnight..I feel so alone and lost. I just want to get him to the Drs on Monday and start treatment yesterday, I'm just a mess.

Please tell me it gets a little better I need to hear positive news from others as you who have been in my situation...I just want to rest and not worry about his severe sleep apnea new diagnosis by the way and make sure to check his oxygen every few hours and BP..all has been good.
I pray he will be himself again one day but until then I will take the best of care as I Love him even after 46 yrs of marriage...any advise would help.
Thank you for listening I hope to hear from someone who has been in my shoes .

With Warmest Regatds,
Yvonne a loving wife❤😭

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Yvonne, I have not been through such difficulties with my husband's health.
I am so sorry that you have to face such a heart wrenching time.
My brother, who is 66 years old, extremely sick, a most beautiful, kind man, has been so ill for about 14 years.
As I write this, I am waiting for bad news as he is in intensive care and not doing well. I know the pain of seeing a loved one so ill. Different circumstances, different kind of pain but it helps me to understand your journey, your need of support and prayers. Have you any support close to you... family? neighbors? Please keep us updated.
Ann

REPLY
Debbra Williams, Alumna Mentor | @debbraw | Jul 27, 2019
In reply to @pattyinal "I am Patsy. My husband, an aerospace engineer, is the smartest man I know, but Mild..." + (show)
@pattyinal

I am Patsy. My husband, an aerospace engineer, is the smartest man I know, but Mild Cognitive Impairment has robbed him of all those engineering skills. He is still physically able, a sweet, kind husband, likes to be socially active but cannot remember what happened 30 seconds ago. Unable to reason, he gets frustrated and so do I! It can be physically, mentally, and emotionally exhausting. But when I say, “Lord, I cant do this!” He says, “No, but I can.”

Jump to this post

Hi @pattyinal - I am so sorry to hear about your husband's diagnosis. I know that when my husband was diagnosed in 2015 it was heart wrenching. Can you share when your husband was diagnosed? Mayo Clinic is one of the few places in the US that has a program to help MCI patients and their partners. Here is a link: https://www.youtube.com/watch?v=0trSH5JnmIw Do you know of it?

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pattyinal | @pattyinal | Jul 28, 2019
In reply to @IndianaScott "Hello and good morning @pattyinal I am sorry to read of your husband's challenges with MCI,..." + (show)
@IndianaScott

Hello and good morning @pattyinal I am sorry to read of your husband's challenges with MCI, but am glad you have joined in the conversations here at Mayo Connect.

Caregiving is one of the most challenging jobs in the whole world I think! You are right that it often takes us to our limits physically, mentally, and emotionally. Plus there is an unfortunately unique challenge of having to rise to the occasion each day while watching our loved one fight their battle yet another day. One of the things I always reminded myself of was 'Superman and Wonder Woman only exist in the comics. There are no superheroes in caregiving.' Each of us can only do what it is we can do on any given day.

It is nice to read that your husband continues to enjoy social interactions, otherwise caregiving can certainly be incredibly isolating.

How long have you been caregiving?

Wishing you continued strength, courage, and peace!

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We first noticed mild memory loss, missing appointments, meetings etc.? in 2006. At that time he was also diagnosed with severe sleep apnea. He took early retirement in 2007. Neurologist agreed with us that years of oxygen deprivation could possibly have been the initial source of his dementia issues. Since that time, he uses a CPAP every day, but the cognitive decline has continued gradually, until the last couple of years when the memory loss has become more severe. Now, he cannot tell time, cannot do any of the handyman jobs he used to do, struggles to find the word for objects, cannot remember that he already ate, or has not had a bath or brushed his teeth. He does still dress himself, but would wear the same clothes every day, if I didn’t remove them from his closet. He knows that he cannot remember, and usually asks me for answers, but then is often sure I’m mistaken. He knows he is dependent on me, yet is very protective of me and hardly wants me out of his sight. Probably more than you wanted to know, but so far, we make a pretty good team and I certainly know that our difficulties don’t even compare to those of so many others.

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2 replies
Debbra Williams, Alumna Mentor | @debbraw | Jul 28, 2019

Hi @pattyinal - It sounds as if you have been dealing with this for a long time. My heart goes out to you. Just wanted to pass along something I learned recently that may or may not help. Our local hospice will provide help with anyone diagnosed with dementia - it does not mean they are at the end of life. They do it because dementia is progressive - and their services are free. Also, our local Council on Aging (COA) has been a tremendous resource for me in terms of caregiver support. Do you have hospice and/or COA in your area?

REPLY
1 reply
Mentor
Scott, Volunteer Mentor | @IndianaScott | Jul 29, 2019
In reply to @pattyinal "We first noticed mild memory loss, missing appointments, meetings etc.? in 2006. At that time he..." + (show)
@pattyinal

We first noticed mild memory loss, missing appointments, meetings etc.? in 2006. At that time he was also diagnosed with severe sleep apnea. He took early retirement in 2007. Neurologist agreed with us that years of oxygen deprivation could possibly have been the initial source of his dementia issues. Since that time, he uses a CPAP every day, but the cognitive decline has continued gradually, until the last couple of years when the memory loss has become more severe. Now, he cannot tell time, cannot do any of the handyman jobs he used to do, struggles to find the word for objects, cannot remember that he already ate, or has not had a bath or brushed his teeth. He does still dress himself, but would wear the same clothes every day, if I didn’t remove them from his closet. He knows that he cannot remember, and usually asks me for answers, but then is often sure I’m mistaken. He knows he is dependent on me, yet is very protective of me and hardly wants me out of his sight. Probably more than you wanted to know, but so far, we make a pretty good team and I certainly know that our difficulties don’t even compare to those of so many others.

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Good morning @pattyinal Never too much information in this discussion! Caregiving can be so intensely isolating, at least it was for me, that sharing can be a worthwhile outlet for some of that isolation.

I can fully appreciate your comment regarding your husband not wanting you out of his sight. That was 100% true with my wife. I do believe she would call my name over a hundred times a day when I was not at her bedside. She, too, knew she was dependent on me and I believe (although she never told me so) she was afraid of what would happen to her and her needs if I was not there for her.

Funny story --- rom her hospital bed we had to add at home when she was in home hospice she could see the bathroom in the hall I would use. She would beg me to keep the door ajar so she could see that I was in there. I was out one day grocery shopping and there was an art sale on the sidewalk. I saw a painting that was done in purples (my favorite color). It was abstract blocks and then in the center was a human eye peering out from the blocks. It reminded me of the bathroom door routine so I bought it and hung it on the wall --- in that bathroom above the toilet! It is still there, although I do shut the door these days 🙂 Seeing it all the time helped me keep in mind that so often it was the disease running things in our lives and not her.

Glad to read you see yourself as a good team! Huge help in caregiving, too -- as you know! Good to also read your husband can do some of his daily routine, such as dressing himself. My wife lost that ability pretty early so I went to a rotation of several of here favorites since routine was also incredibly important to her at all times. We even named each outfit -- we had 'pinky', 'flowers', 'greenie', etc. I hold up two and give her the choice, which she liked since it gave her a tiny sense of being in control of something in a life totally out of her control.

I hope your day and week ahead are solid and that the sun is shining wherever you and your husband are!

Strength, courage, and peace!

REPLY
Harriet Hodgson | @harriethodgson1 | Jul 29, 2019

I agree--never too much information in this discussion. This is my 22nd year as a family caregiver and I am quite isolated. To counter this, I stay in touch with friends via email, Facebook, and attending some events. Getting out lifts my spirits.

REPLY
Mentor
Scott, Volunteer Mentor | @IndianaScott | Jul 29, 2019
In reply to @debbraw "Hi @pattyinal - It sounds as if you have been dealing with this for a long..." + (show)
@debbraw

Hi @pattyinal - It sounds as if you have been dealing with this for a long time. My heart goes out to you. Just wanted to pass along something I learned recently that may or may not help. Our local hospice will provide help with anyone diagnosed with dementia - it does not mean they are at the end of life. They do it because dementia is progressive - and their services are free. Also, our local Council on Aging (COA) has been a tremendous resource for me in terms of caregiver support. Do you have hospice and/or COA in your area?

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Great suggestion, @debbraw I know each hospice organization is different, but the only caveat I would add to this for @pattyinal is to be sure to check with her hospice, insurance, etc. very carefully on any costs on this. In our case my wife's hospice care was only covered after it was officially prescribed by her physician. Then once prescribed be certain your choice is 'in network'.

I only bring this up as a cautionary tale given that I am continuing to pay down what was over $40,000 in uncovered expenses from early on with our hospice.

REPLY
1 reply
jimwills | @jimwills | Jul 29, 2019
In reply to @pattyinal "We first noticed mild memory loss, missing appointments, meetings etc.? in 2006. At that time he..." + (show)
@pattyinal

We first noticed mild memory loss, missing appointments, meetings etc.? in 2006. At that time he was also diagnosed with severe sleep apnea. He took early retirement in 2007. Neurologist agreed with us that years of oxygen deprivation could possibly have been the initial source of his dementia issues. Since that time, he uses a CPAP every day, but the cognitive decline has continued gradually, until the last couple of years when the memory loss has become more severe. Now, he cannot tell time, cannot do any of the handyman jobs he used to do, struggles to find the word for objects, cannot remember that he already ate, or has not had a bath or brushed his teeth. He does still dress himself, but would wear the same clothes every day, if I didn’t remove them from his closet. He knows that he cannot remember, and usually asks me for answers, but then is often sure I’m mistaken. He knows he is dependent on me, yet is very protective of me and hardly wants me out of his sight. Probably more than you wanted to know, but so far, we make a pretty good team and I certainly know that our difficulties don’t even compare to those of so many others.

Jump to this post

Being a caregiver is being a caregiver. Your line about some having greater difficulries isnt even an issue. When all of us are caring for those we care about, its just our life. Its on and off hard, rewarding, frustrating, exhausting and so on. When any of us read the weight of care giving in these share pages there is a recognition that we are doing a difficult thing but it is our love for these folks that brings us here. Many care givers have to dig deep to find that love and some are trapped. But, here, we're all in it together. My wife often wss concerned that she was destroying my life. Now I look back and know its probably the finest thing I've ever done.

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kw1904861 | @kw1904861 | Jul 29, 2019
In reply to @colleenyoung "Hi @19lin @aasthapuri @adri @bbams @besrus5 @bina @burrkay @charlena @chesneydell1965 @clayton48 @coladyrev @dawn_giacabazi @dawn0202 @eaglesview @IndianaScott..." + (show)
@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.. Thanks for letting me join.. Not sure what to say... My husband has brain injury and I think its getting tuff around here... He's up and moving around when he's not sleeping... He's angry to me a lot.. Any advise. ?

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