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?

@rmftucker

I think my message got lost when I checked to locate the website of the University of Iowa Hospitals series of Caregivers videos that is available online. You may have to sign in, but it costs nothing and these are worth it. You might pass the word.

My husband had been admitted to the ICCD Memory Unit almost a year ago now. I was noticing some situations with my husband in the ICCD Memory Unit where he had recently become a patient. I had noticed that the younger staff was not as patient or calming with many of the patients like my husband who tended to be combative if he didn't wish to do something. They were talking with very loud voices, quick movements, etc., when dealing with the residents. It was causing a lot of noise and confusion in the Unit, and only fueled more agitative behaviors among the residents.

When I received a questionnaire from the Care Center asking input on various topics, I replied at length about the videos being developed by the University of Iowa Hospitals for Caregivers and Providers that had just recently (fall of 2017) been put online at their website. We had viewed many of them at the Caregivers Support Group I had attended and given them feedback on several items to be included. When I visited a few weeks later I noticed a TV in the conference room that was on to what looked like an educational film. When I entered the Memory Unit, I overheard the nurses saying they were a little short handed that afternoon as staff was being pulled out for some workshops. During the weeks following I noticed a change in the atmosphere of the unit, so I think they were using my suggestions.
I think we all need to speak up about the low pay these people who are caring for our loved ones receive. They are doing a difficult job even on good days, and most of them really do care.

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Hi,
how you describe it is real happened in many places as you said (They were talking with very loud voices, quick movements, etc., when dealing with the residents. It was causing a lot of noise and confusion in the Unit, and only fueled more agitative behaviors among the residents) is true. I support your words and to increase the payment it might help to develop the way how the care should be achieved.

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@straight_shooter

The food issues were the good! Now, the bad. A patient care employee took me aside in the first weeks of her admission and warned me that elderly patients like my mom tend to get ignored. On her good days she's as sweet and as polite as can be …. but on her 'uncertain' days she's like Granny Clampett on steroids and will (for example) exploit a nurse's physical weakness with impeccable timing, pinch, and take a swing at those attending her. She's been on her own for the latter part of her life and the fact that nurse's can be male is something she will never understand.

True to this patient care employee's word, I entered the room one day in the midst of an argument happening between my mom and a senior nurse of 35 years. I informed the nurse that she had recently been on the full spectrum of antibiotics and that she was still suffering hallucinations etc from their application and not to agitate her. She informed me that antibiotics do not cause any issues as such and that her issues were all due to education and upbringing. I reported her immediately and she was removed!

The bottom line is that 'some' health care employees should not be attending to geriatrics. There have been many other incidences, as such and in the line of 'delaying' care due to feistiness …. and I have dealt with them all to the best of my ability and for the ones I have been informed about or personally observed. I also went to management and had them assure me that a geriatric dementia patient, rock star, hockey player and infant all get the exact same attention and care!!! (nothing written on paper for that one, though)

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@straight_shooter you are sure right about the complexity of the caregiving spectrum for our loved ones — and for lots of other patients I expect! I believe (based on nothing other than my personal experiences with my wife's care journey) this complexity will continue as more and more specialization and sub-specialization continues in the medical field. I remember early on, when my wife was in her post-surgical rehab she had five different folks she worked with, one for each area of her need. I understand specialization, but also witnessed the confusion, loss of progress, etc. these almost hourly changes in personnel, locations, etc. brought her.

In some ways I wish Dr. Welby was still in the house 🙂

Courage, strength, and peace!

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Fully condone an increase in pay for pro caregivers! Not the full solution though. I'm not sure you can 'buy' empathy and compassion. There are lots of caregivers who have it and don't moan and complain about their paycheck. Will the less_than_happy 'Squeaky Wheels' suddenly attain more of these characteristics of humanity should they get a $10.00/hr raise! Not so sure about that. There needs to be much more regulation, accountability and coummunication between the various levels of health care providers.

One systemic problem that I've noticed and for which causes Mom ongoing consternation is tone and delivery of speech towards her. Respect! The old adage that 'Only 10% of conflict is difference of opinion and 90% tone and delivery of speech' is spot on and for that extra $10.00/hr(or more) all staff would/should be held accountable for this 24/7 in a perfect healthcare world!

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I fully agree about the tone and delivery of speech. Too many times the reply is given in a way that sounds as if it is an imposition to respond to the resident.

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I was able to locate the website for this series that I referenced in a previous message. Search for "Family Involvement in Dementia Care Series – IGEC 1002" and it will open to the UI Learn website.

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@rmftucker

I think my message got lost when I checked to locate the website of the University of Iowa Hospitals series of Caregivers videos that is available online. You may have to sign in, but it costs nothing and these are worth it. You might pass the word.

My husband had been admitted to the ICCD Memory Unit almost a year ago now. I was noticing some situations with my husband in the ICCD Memory Unit where he had recently become a patient. I had noticed that the younger staff was not as patient or calming with many of the patients like my husband who tended to be combative if he didn't wish to do something. They were talking with very loud voices, quick movements, etc., when dealing with the residents. It was causing a lot of noise and confusion in the Unit, and only fueled more agitative behaviors among the residents.

When I received a questionnaire from the Care Center asking input on various topics, I replied at length about the videos being developed by the University of Iowa Hospitals for Caregivers and Providers that had just recently (fall of 2017) been put online at their website. We had viewed many of them at the Caregivers Support Group I had attended and given them feedback on several items to be included. When I visited a few weeks later I noticed a TV in the conference room that was on to what looked like an educational film. When I entered the Memory Unit, I overheard the nurses saying they were a little short handed that afternoon as staff was being pulled out for some workshops. During the weeks following I noticed a change in the atmosphere of the unit, so I think they were using my suggestions.
I think we all need to speak up about the low pay these people who are caring for our loved ones receive. They are doing a difficult job even on good days, and most of them really do care.

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Here is the link to the Family Involvement in Care online learning from the University of Iowa https://learn.uiowa.edu/browse/igec/courses/gec-1002
Thanks for the resource, @rmftucker

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I am a member of the sandwich generation, caring for my children and parent at the same time. My dad lives on his own but I need to keep close tabs on him to ensure that everything is going alright. One tool that I use is TheirCare (https://their.care), a service that is delivered via smart TV that enables me to do video calls with my dad. He can answer my call with his TV remote and just talk to me from his recliner in his living room. I can call him from my computer or smart phone and get to see him and get an idea of how well he is doing.
Recently I have become concerned that he has dropped 17 pounds in the past 6-8 weeks and has been struggling with weakness in one of his legs.

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@chadknudson

I am a member of the sandwich generation, caring for my children and parent at the same time. My dad lives on his own but I need to keep close tabs on him to ensure that everything is going alright. One tool that I use is TheirCare (https://their.care), a service that is delivered via smart TV that enables me to do video calls with my dad. He can answer my call with his TV remote and just talk to me from his recliner in his living room. I can call him from my computer or smart phone and get to see him and get an idea of how well he is doing.
Recently I have become concerned that he has dropped 17 pounds in the past 6-8 weeks and has been struggling with weakness in one of his legs.

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Hello @chadknudson That service sounds interesting! I will have to check it out. I love how many new (for me) ideas in caregiving get shared here on Mayo Connect!

What has your dad's doctor said about that weight loss and weakness?

Strength, courage, and peace!

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@chadknudson

I am a member of the sandwich generation, caring for my children and parent at the same time. My dad lives on his own but I need to keep close tabs on him to ensure that everything is going alright. One tool that I use is TheirCare (https://their.care), a service that is delivered via smart TV that enables me to do video calls with my dad. He can answer my call with his TV remote and just talk to me from his recliner in his living room. I can call him from my computer or smart phone and get to see him and get an idea of how well he is doing.
Recently I have become concerned that he has dropped 17 pounds in the past 6-8 weeks and has been struggling with weakness in one of his legs.

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The doctor sent my dad to physical therapy to see if he could regain some strength in his right leg. The doctor also noticed that the reflexes for that leg were markedly less than his left leg. If after several weeks of physical therapy they do not see improvement in strength then they want to do an MRI.

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@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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I have been caregiver for almost two years now as my main man has very short-term memory for quite some time now and he has diabetes and is blind in the right eye and his vision is failing in the left eye as well. He becomes very frustrated at times and i try and be very patient with his mood changes as depression sets in as well. We have been married since 1999 and i have such fine memories when we were both healthier and my husband could drive and we would take those special country drives together or just go out for coffee. It hasn't been easy a lot of the time being the main caregiver but my husband is a very kind and good person and it isn't his fault he has poor health at the age of 80. I shall be here until the end comes and never turn away from my soul mate, my husband.

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@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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Hello @tcphonehome Nice to e-meet you here at Mayo Connect! I am sorry to read of your husband's healthcare journey and yours as a caregiver. You sound very much in love with your main man and that is so nice to read! I believe it is love, which fuels much, if not all, of what we as caregivers do! I also agree with you that as caregivers one of the tougher aspects is while we are with our loved one everyday, we cannot help but remember 'the better times'. I did it with my wife frequently and now that she's gone I miss those early days, when we were a healthy couple, and did the simple, everyday things. Funny how I think back and it is not to the trips we took or the fancy parties we attended, but the everyday things, which I know now were what bought us close in the first place! I miss all those so much — as you do with your partner!

I lost the vision and hearing on my right side in December to a stroke, so I can also commiserate with your husband. I hope his sight in his one eye continues as best as can be hoped for.

You are also correct when you say "it hasn't been easy a lot of the time being the main caregiver…" Caregiving ain't for wimps that is for sure! Love may fuel us, but it is an amazing inner strength that pulls us through on the toughest of days! I also like to say this: There are no superheros in caregiving. Superman and Wonder Woman only exist in the comic books! We each can only do the best we can!

Thanks for posting and be sure to keep in touch! Caregiving can also be very isolating and Connect can help bust that isolation down at least electronically!

Strength, courage, and peace!

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@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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Mom is 93. I am her only child. I stay with her at nights and have for 4 years. I have care givers with her during the days and some evenings. I leave her house at 7 and go to my
Home and get ready for work. I have no children. I have to get up 2 times a night to help
Mom to bathroom. The broken sleep is rough. I'm considering looking for an assisted living facility for mom but not sure she'd do well there. I'm tired all the time

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Hi Colleen, Thanks for your welcoming me to Mayo Clinic Connect. I have shared a few times and need your help in navigating the system. I was diagnosed July 2017 with Giant Cell (temporal) Arteritis, and have appreciated pertinent shares on GCA, but so often get sidetracked to another unrelated group. Apparently I am not correctly unsubscribing from groups I’m not interested in following. Thanks for your help.

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@captainkenny

Hi Colleen, Thanks for your welcoming me to Mayo Clinic Connect. I have shared a few times and need your help in navigating the system. I was diagnosed July 2017 with Giant Cell (temporal) Arteritis, and have appreciated pertinent shares on GCA, but so often get sidetracked to another unrelated group. Apparently I am not correctly unsubscribing from groups I’m not interested in following. Thanks for your help.

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Hello @captainkenny, If you click on your profile picture at the top of any Connect window and select Account Settings, then scroll to the bottom you will see Email Notifications where you can edit the notifications for Posts, Groups, Pages and more. You can also unsubscribe from all notifications at the bottom.

John

Capture

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@captainkenny

Hi Colleen, Thanks for your welcoming me to Mayo Clinic Connect. I have shared a few times and need your help in navigating the system. I was diagnosed July 2017 with Giant Cell (temporal) Arteritis, and have appreciated pertinent shares on GCA, but so often get sidetracked to another unrelated group. Apparently I am not correctly unsubscribing from groups I’m not interested in following. Thanks for your help.

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Thanks John. I took your direction and we’ll see what happens.

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