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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.

barb kaser | @barbkaser | Sep 16, 2016

My name is Barbara Kaser and I live in Chapel Hill. My husband is being treated at Duke in a clinical trial for stage 4 gioblastoma. He has already had a year of surgery, chemo and radiation. He is doing ok all things considered but is slowing down. It is hard to see him go from a man who could do everything to just walking is taking a toll. I have much to be grateful for but going through this has really changed us and our priorities.

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5 replies
barb kaser | @barbkaser | Sep 16, 2016
In reply to @sandydominy1 "Hi, I'm Sandy. My hubby was diagnosed with a glioblastoma (brain cancer) that is the deadliest..." + (show)
@sandydominy1

Hi, I'm Sandy. My hubby was diagnosed with a glioblastoma (brain cancer) that is the deadliest cancer. We had surgery, radiation and chemo. We are now on maintenance chemo. After the initial kick to the gut, I had 2 choices: Fight or
Flight. I chose to fight. After 45 years of marriage, how could I not? We are confident in our doctors but needed to take control ourselves. I've read everything I can get my hands on, which had led us to Duke Cancer Center for possible clinical trials. The tumors usually come back. So far, we've been blessed that it hasn't but, if it does, I believe Duke can help. The first thing I recommend is to get an accordion folder and keep copies of EVERYTHING, including
Dr notes, discharge summaries. The doctors have been surprised at how organized we are (everything is WE because it's our fight). I've even made sure I keep the dates of when chemo was/is and MRI dates, to include copies of the disks and reports. It's impossible for the patient to keep up with everything and to absorb everything. That's the job of the caregiver. It's a huge job but worth it when you love someone. The best advice I can give? Try to maintain a normal life and make sure the patient gets out and about, exercise etcetera. They can't be allowed to sit around, feeling sorry for themselves

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You have enormous strength and have given some good advice. Since we are in clinical trial at duke getting MRV I'm sure they are the best choice and luckily we live here in Chapel Hill.

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kepi | @kepi | Sep 16, 2016
In reply to @sma1952 "My mother has dementia. We noticed last year she had some signs that something wasn't right..." + (show)
@sma1952

My mother has dementia. We noticed last year she had some signs that something wasn't right and asked her if she was taking her meds, just doing things like laundry and making meals. My sister in law came to visit and confirmed she wasn't doing anything I mentioned. I was having hip problems at the time and could not get around well. Took her to our family doctor and he said she was clean dressed nicely and talked with him about things. Said he didn't see any problems. I went down every day to make sure she took her meds did her grocery shopping and wash. Found out she had bags of dirty laundry hidden around the house. Next she started forgetting about appointments would come down to take her only to find out she would be sleeping and not even ready. This was her hair appt. would call her 2 hours before an appointment so she would be ready. Then after she started going back to sleep and forgot that I even called her. She started not remembering current things. Wouldn't even remember what she ate. Finally I was able to get her in a hospital too see what was going on. Found out she had a severe uti and they started treating her. Thought that might have been the problem. No not really. They transferred her to a nursing home for physical and occupational therapy. She stayed there 3 Weeks and they determined she needed more care then I could provide. During this time I had severe hip problems and could hardly get around. I was on pain medication for it but had to find a place for my mom. Couldn't take her to my house because bathroom was upstairs and she was using a walker and couldn't do steps. Dont know if I did the right thing but I called a place for mom to see if they could help. Actually made appointments for me to see the assisted living places. I did check out the reviews and one seemed pretty nice. We admitted her there. Now I am questioning myself if I picked the right one. Seems there are somethings that I am concerned about. One was there air conditioning not working the past week when it was really hot. It was not just her room it was other places. An aide told me to talk to the director when I did they blamed it on the patients why it was not working. I was there one day when it was off. It had tripped the circuit. Two days later it wasn't working and by the end of the week still was not working. Also asked if a doctor had been in to see her at all. One was supposed to come in every 3 months to check on her. Asked the director said she has been there long enough he should have came said they would check never got an answer. Now I am wondering if this was the right place to put her. Maybe I am just feeling guilty I put her in there. My brother who lives in Texas never even came up to help with anything. I couldnt walk and my husband who has a slipped disk had to get everything moved out of her apartment. I felt at the time we were doing wrong. That she should have had some say to what she wanted to keep. Everybody said I was crazy. My husband felt the same way when he was getting rid of things. Months later she has been realizing that she has been there awhile and has started asking about certain things. Told her my son and daughter have most we kept a lot that thought she might want. She seemed to be happy about that. It's just been hard and now a year later I am finally starting to get around better and spending more time with her. Worst of all I am feeling bad that I had to place her anywhere. My brother tells me if I didn't she probably would have died already. its botherig me know because I feel I wasn't capable enough to making important decisions and am questioning myself.

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Hi, i know my mother in law was gonna sell her home of almost 50 yrs of livin here and she wanted to stay in her own home but knew she couldnt alone due to her eye site caused by silent strokes so we have moved in here home her son my husband and i care for her. He has 2 other brothers but in almost 10 months the youngest just now said he wanted to help with mom. The older son doesnt want anything to do with her because ahe changed her trust to make my husband trustee. And its hard carein for anyone who is gonna pass, she is pretty healthy at 79 walks 3 miles almost daily but i can say that givin her vitamins B & E along with the Aricept has greatly improved moms memory she leads a very active life even though she cant see.. if we would have put her in assisted living for her that would have made her life short and she would be unhappy my job is to see that she is get best self at any and all costs even when the time comes that she doesnt know us.
If you feel like you didnt make the right choice for yer mama, I'd make sure they took care of her like you would if it were possible fir you but never feel guilty. A great book to read is The 36 Hours. In Feb mom's mmse was 18/30 now with Aricept
And bring her vitamins B & E level up her last mmse which was in May was 25/30
And if she could see she would be great here at home alone.. i hope i have helpef you
I do understand caring for our parents is gard i took care of my own mother when she was Dx with cancer and she was at home until her last days and she passed in hospist 4 months later.. after being in hospist for only 3 days. Those were her wishes but it still wasnt easy. I play a game with mom now i "lose" my coffee cup and she'll find it in the microwave. I think keeping them happy any and all cost is the key to them living longer also on Amazon they have a macanical cat that my mom just loves by hasbro but she also stole my little tiny dog lololol for her own which is fine with me. It comes down to allowing them to be as independent as possible. Just do the best ya can and see that her care center is giver her the same care you would give her if you could.
I'll keep yall in my prayers..((((hugs)))
Kepi

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nanax2 | @nanax2 | Sep 16, 2016
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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@hopeful33250 Thank you! It is nice to be able to share and learn from others who have walked this road before me.

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Mentor
Scott, Volunteer Mentor | @IndianaScott | Sep 16, 2016
In reply to @kepi "Hi i am new to this group my name is Kepi and i care for my..." + (show)
@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 Great to e-meet you here! I wish you well on your caregiving journey and congratulate you on your great efforts!

I'm Scott and I was a secondary caregiver for my mother-in-law who had dementia and then for 14 years as the primary caregiver for my wife, who while battling brain cancer had many symptoms of dementia.

Oh, and I send a belly rub to Miss Bella too!

Strength and peace,

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nanax2 | @nanax2 | Sep 16, 2016
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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@colleenyoung Thanks for the link to the caregiving for dementia sufferers; I'll join that group as well. I'm always looking for more understanding of this crazy disease and how I can best love my Mom as she struggles through this. I'm so happy to have found this website!

REPLY
nanax2 | @nanax2 | Sep 16, 2016
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.

Jump to this post

@IndianaScott It is always encouraging to find those who have walked this path before. It's not something I ever thought we'd be dealing with. I'm excited about this support group and the dementia suffers caregivers group, as well.

REPLY
Mentor
Scott, Volunteer Mentor | @IndianaScott | Sep 16, 2016
In reply to @barbkaser "My name is Barbara Kaser and I live in Chapel Hill. My husband is being treated..." + (show)
@barbkaser

My name is Barbara Kaser and I live in Chapel Hill. My husband is being treated at Duke in a clinical trial for stage 4 gioblastoma. He has already had a year of surgery, chemo and radiation. He is doing ok all things considered but is slowing down. It is hard to see him go from a man who could do everything to just walking is taking a toll. I have much to be grateful for but going through this has really changed us and our priorities.

Jump to this post

Welcome @barbkaser. Nice to make your e-acquaintance here. I am Scott and for the past 14 was the primary caregiver for my wife during her battle with brain cancer.

Your post struck a special chord with me. My wife was a Type-A, entrepreneur, mother, wife, and the glue of her extended family. As a caregiver I believe one of the most challenging aspects to our 'job' is witnessing the daily changes in our loved ones. Being ever watchful for even the slightest change, alteration in activity level, interest, or ability is a different kind of draining.

I never visualized our priorities would change as much as they were forced to during our journey. But new priorities also brought us new things to try and celebrate and relish.

I send you strength and peace for you and your husband.

REPLY
kepi | @kepi | Sep 16, 2016
In reply to @kepi "Hi i am new to this group my name is Kepi and i care for my..." + (show)
@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.

Jump to this post

Hi Scott i will certainly do that for Miss Bella thank you for this group caregiving is very hard but i try and keep mom happy healthy and want her to be het best self even when she wont know who we are.. im so sorry for yer lose i lost my only brother dec 12 2007, our youngest son was murdered in our home november 19, 2008 and lost my mamma Jan 7th 2013
I took care of yer the last 4 months of her life she was dx with cancer in Sept 2012
My father in law we lost him to ALS in 2005 and now mom has late on set alzhymers life just isnt fair but i have to remember the lords thinkin is higher than mine.. i dont understand the why's of it all but i do it all because i love my mother in law.. we are doing what she wants and that is to stay in her own home. We have to sell our home. But its just a house her happiness is what counts for me she has lived here almost 50 yrs.. even if she were totally blind she could still find what she looks for...anywhere else for her wouldnt be a good thing. So here i am and here you are... im sure i will learn alot from everyone here and yer all in my prayers
Kepi

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barb kaser | @barbkaser | Sep 16, 2016

Keeping a positive, happy demeanor is the most challenging. Balancing pushing him to make extra efforts walking, going out with acknowledging his limitations and going by his wishes to sit and just watch tv. Thank you for your post and good wishes...and back to you!

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