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?

HI, I’d like to join the caregivers forum My situation is a little different then most of you. I am a 79 year old caring for my 85 year old husband who has Alzheimers. He was diagnosed two years ago and it was confirmed when they did a brain biopsy while inserting a shunt for his NPH hydrocephalis. I was hoping that was the cause for his memory problems but unfortunately it was not to be.I know there is no cure or hope of recovery. Only medication to try and slow down the decline.I care for the man I love who is slowing changing in front of my eyes,at times I do not see the man I married at all. It.s a difficult situation and at times the stress gets the best of me. As I write this I am not sure if this is the right group for me to join. If not let me know and I wish all you caregivers out there my best wishes and my prayers.

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@rozalia

HI, I’d like to join the caregivers forum My situation is a little different then most of you. I am a 79 year old caring for my 85 year old husband who has Alzheimers. He was diagnosed two years ago and it was confirmed when they did a brain biopsy while inserting a shunt for his NPH hydrocephalis. I was hoping that was the cause for his memory problems but unfortunately it was not to be.I know there is no cure or hope of recovery. Only medication to try and slow down the decline.I care for the man I love who is slowing changing in front of my eyes,at times I do not see the man I married at all. It.s a difficult situation and at times the stress gets the best of me. As I write this I am not sure if this is the right group for me to join. If not let me know and I wish all you caregivers out there my best wishes and my prayers.

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This is EXACTLY the group you should be a part of. All our situations are different but we have one thing in common. We are Caregivers

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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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Thank you Colleen for the invite. My sis and I have been care givers to my mother who is 77 years old. It was stressful physically and mentally. As long as you have good intention, care, gentle and kindness with good judgement , it turned out well at the end. I have experienced with our Mother for her critical surgery. She had followed through the procedures and before and after the surgery. We have to be strong so that we can share the strengths, peace and love to whom we are caring for. My Mom realized later and she appreciated what we have done for her.

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@rozalia

HI, I’d like to join the caregivers forum My situation is a little different then most of you. I am a 79 year old caring for my 85 year old husband who has Alzheimers. He was diagnosed two years ago and it was confirmed when they did a brain biopsy while inserting a shunt for his NPH hydrocephalis. I was hoping that was the cause for his memory problems but unfortunately it was not to be.I know there is no cure or hope of recovery. Only medication to try and slow down the decline.I care for the man I love who is slowing changing in front of my eyes,at times I do not see the man I married at all. It.s a difficult situation and at times the stress gets the best of me. As I write this I am not sure if this is the right group for me to join. If not let me know and I wish all you caregivers out there my best wishes and my prayers.

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Rozalia, I agree this is a good group for you. As caregivers we need lots of sources of encouragement and this is one. I’m watching the person who was my Mom disappear just as you are with your husband. It’s not pleasant, very challenging, and sometimes the hopelessness of it all gets overwhelming. When that happens, we need each other’s support so much!

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Right now I am in a bad place and really struggling. The kind words and support I have received from all of you is like a small candle in the dark. Thank you all.

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@rozalia

HI, I’d like to join the caregivers forum My situation is a little different then most of you. I am a 79 year old caring for my 85 year old husband who has Alzheimers. He was diagnosed two years ago and it was confirmed when they did a brain biopsy while inserting a shunt for his NPH hydrocephalis. I was hoping that was the cause for his memory problems but unfortunately it was not to be.I know there is no cure or hope of recovery. Only medication to try and slow down the decline.I care for the man I love who is slowing changing in front of my eyes,at times I do not see the man I married at all. It.s a difficult situation and at times the stress gets the best of me. As I write this I am not sure if this is the right group for me to join. If not let me know and I wish all you caregivers out there my best wishes and my prayers.

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@rozalia this is the perfect place! While each caregiver’s journey is different, there are many commonalities, which we all can benefit from sharing. I witnessed my wife change from a successful business owner to a person who was unable to ever leave her bed. While it was very sad, we decided to accept each of the many stages she went into and through and not focus on what had been lost. By the way my mother-in-law had dementia so I send you strength and peace.

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@rozalia

Right now I am in a bad place and really struggling. The kind words and support I have received from all of you is like a small candle in the dark. Thank you all.

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@rozalia I send you strength and support from afar. The roller coaster times of caregiving are especially challenging and often the smoother segments seem to be too far apart. One technique I used in the darker times was to hum (I can’t sing) my wife’s favorite song. It often made her smile, soothe her, and put me, momentarily af least, in a nicer place.

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Hi, my name is Tammi
Im a care giver to my husband who suffers from sarcoidosis of the lungs skin and GI. I also care for my mother who is 73 year old stroke victum.

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@lisa_sj99

Coleen, thank you for the invitation! As a caregiver, the emotional up and down can be very stressful at time. Since my husband diagnosed with throat cancer in late June, life has not been the same. Although he has HPV positive throat cancer and is considered a curable cancer, the treatment journey will be difficult since radiation will impact his ability to eat and swallow. I am also very concerned about the long term side effect and his qualify of life. We have great relationship. This latest event gets us even closer. We just take it day by day.

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Hi Lisa, my husband is battling stage IV colorectal cancer with metastasis to his liver and lungs. The liver tumor was so huge that it pressed on his stomach and he had to be on a liquid diet for a while because he just couldn’t handle solid food. During that time I ‘enhanced’ many soup and smoothie recipes to make them about 1000 calories each. Haha. So if your husband starts losing weight and you want the recipes please let me know, I’m happy to share.

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@lisa_sj99

Coleen, thank you for the invitation! As a caregiver, the emotional up and down can be very stressful at time. Since my husband diagnosed with throat cancer in late June, life has not been the same. Although he has HPV positive throat cancer and is considered a curable cancer, the treatment journey will be difficult since radiation will impact his ability to eat and swallow. I am also very concerned about the long term side effect and his qualify of life. We have great relationship. This latest event gets us even closer. We just take it day by day.

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Thank you for the words of encouragement! I think I am good for now. I have done ton of research and have read every articles related to head and neck cancer that I can find. I have quite a few recipes collected and will try to see if that will help him. He is probably ok during the first week of treatment. Most of the difficulties will start from week 3 onward. I just need to stay strong and healthy so I have the energy to help him through this. Thanks and stay strong. You and your husband are in our prayers.

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@rozalia

Right now I am in a bad place and really struggling. The kind words and support I have received from all of you is like a small candle in the dark. Thank you all.

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HANK YOU FOR THE SUGGESTION,ONE GOOD THING ABOUT ALZ. THEY FORGET WHAT HAPPENED SO I DON,T FEEL BAD ABOUT MY REACTIONS FOR LONG.AND ITS,S EASIER TO GET BACK INTO THE LIGHT FROM THE DARK PLACES.

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@tavi

Hi – thank you for the invite. I’m new to the Mayo Clinic Connect and very curious to see how it all works – I used virtual communication a great deal during my work and appreciate the opportunity to cross geographic boundaries! I joined the Mayo Clinic Connect with the specific goal of exploring solutions to a physical problem my husband experiences each night — he has profuse sweating on the upper right side of his body. None of our local specialists have been able to identify a cause or provide solutions… I’m hopeful someone may have ideas for us to try….

It is a great added benefit to be able to participate in this care giver group. My husband was diagnosed with dementia in the spring of 2014 — I had noticed many changes before the actual diagnosis and was able to transition from my career into full-time care giver status by November of that year. With 30+ years together, it has been a blessing to be able to be here with him on this difficult journey. At the same time, I know that I have never faced as great or as many challenges on a daily basis. Each step has involved a tremendously steep learning curve — I look forward to hearing from each of you and sharing my experiences.
Best regards

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Thanks – I will. This weekend we started a 4 week trial of Robinul.

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Hi all, I’m so sorry to hear about all of your stories and hope you are all doing well. 1 thing about me is I tend to ramble and write long messages so sorry about that! If anyone has any ideas on how to pull patients out of depression I’d REALLY appreciate it (3rd paragraph)

***My Story***My husband and I are 36. In January ’16 he was diagnosed with stage IV colorectal cancer which has metastasized to his lungs and badly to his liver (tumor the size of a football). He went from never having any health issues that we knew of (the cancer was actually there for 4 years) to a prognosis of 3 years (which we are optimistic will be longer). We were engaged in May ’15, planning a big wedding for next month, I just got a new job, we just bought a house, planning on starting a family a year or so after marriage (next summer), things were the best they’ve ever been. The day I quit my job late Dec ’15 (the only negative thing hanging over our heads) he found the bump on his side which led to hospital and diagnosis. Went from our lives as close to perfect as they could be to cancelling the big wedding (got married in our living room in March w/4 friends, it was perfect), I’ve since lost that new job, found out we can’t have kids (cancer had already ruined his body) and worst of all the realization that after FINALLY finding my soul mate and best friend I’m going to lose him.

***Treatment*** The past 8 months have been surgery to remove half his colon, chemo (it REALLY helped but the agents should have lasted for 10 months but only lasted 2 due to neuropathy) and targeted radiation to his liver. Thursday we’re finding out what the next treatment will be – some clinical trials are being considered. The normal treatments have been put on hold due to the sir spheres (targeted radiation) surgeries. He’s been extremely anxious over the past few months waiting to find out what’s next. All treatment goals are to extend his life, the cancer has spread too much to eradicate it and he’s not eligible for a liver transplant.

***This is where I could use some HELP***He’s fallen into depression which I completely understand, it took SIX months for him to stop being 100% positive. But from positivity to depression has taken a bad toll on us both. He’s never been depressed and doesn’t know the signs so he’s blaming the symptoms on his hemoglobin level and needing another blood transfusion… yet he refuses to go to the doc before his apt. He’s sitting in our dark finished basement on the couch watching TV 24/7… literally… barely comes to sleep in our bed upstairs anymore. I don’t know what to do. He’s tired, body can barely handle a short walk now (he doesn’t relate this AT ALL to not moving and sitting on the couch for 2 months!!), went from so positive to SO negative, irritable, not wanting to go out to do anything or see anyone, not responding to calls and texts from friends, barely any appetite, etc etc. I’ve tried to schedule short 1-2 block walks and yesterday he FINALLY agreed to go in the evening. when i went down to get him he pretended to be asleep. I know he was pretending because he wakes up so easily just when I walk in the room and i said his name a few times and he still didn’t wake. Doc mentioned antidepressants 2 months ago and he says he’s open to that but I don’t know if he’ll actually take them. Funny thing is I’m bipolar and although I’ve been stable for about 8 years, throughout our entire 5 year relationship, he knows the stories of my struggles prior to being stable. Yet he still doesn’t take my word for it when I tell him the signs of depression. It’s frustrating. Anyone have any suggestions? @IndianaScott gave fantastic advice about letting him feel what he’s feeling which I have and its helped a great deal! But its really starting to effect his body and he won’t handle the next treatment as well if he’s weak and not eating much.

As I warned… I ramble sorry! Can’t seem to help the long emails even when I try. Before this depression I’ve had the experience that many of you have that ironically our relationship has never been better. Its the shining light through this nightmare. No longer do we take each other for granted or time for granted. Those little things that used to upset me SO much (like my job not going well) just seem ridiculous now. No more daily grind and no more living/planning for the future and not appreciating the present. Priorities have changed.

Hugs to you all!
Beth

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Beth, how my heart and my prayers go out to you. What a lot to experience in such a short time! Your own grieving for all you are losing or afraid of losing also needs to be experienced and honored. Sounds like getting him on anti-depressants is a good start, though you may have to hand them to him with a glass of juice and watch him swallow in the beginning – and that may irritate him, but CAN be done with grace and love, both of which you appear to have lots of. Two of my sisters, one of whom is bipolar, have struggled with depression and my takeaway from that is that I can’t fix it. But here’s how one of them described it. “It’s like you’re down in a deep hole and can’t see any way out. But there are people at the top of the hole, shouting down their love and encouragement. You can hear it but you can’t respond to it. Even so, it’s so important to survival that they are up there trying to reach out to you and they’re not giving up on you.” It was a huge “aha” for me, as I’d felt like I was not only wasting my time, but more importantly, I thought I had become more of an irritant than an encouragement. So I guess my thought is to just keep loving him like you’re doing, and don’t be afraid to go to him on that couch in the dark basement and gently rub his arm or shake him awake and gently say how much you need his company on a quick walk. Maybe he’ll do something for you that he’s not willing yet to do for himself. There appears to be a good bit of research that shows that if you change the physiology – I.e., get him off the couch for even a few minutes a day – that in itself begins to change the emotional processing. It’s actually not possible to continue feeling depressed if you are smiling, standing straight up, and walking with a posture of confidence — even if you’re faking. It still changes how the brain responds. Hang in there and find all the emotional support you can, including this group. Your situation is one of those that makes me aware of how very cruel the world can be. May you continue to have the heart and mind to keep fighting to have that loving life you dreamed of every single day, one day at a time. Blessings, love and prayers!

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@tavi

Hi – thank you for the invite. I’m new to the Mayo Clinic Connect and very curious to see how it all works – I used virtual communication a great deal during my work and appreciate the opportunity to cross geographic boundaries! I joined the Mayo Clinic Connect with the specific goal of exploring solutions to a physical problem my husband experiences each night — he has profuse sweating on the upper right side of his body. None of our local specialists have been able to identify a cause or provide solutions… I’m hopeful someone may have ideas for us to try….

It is a great added benefit to be able to participate in this care giver group. My husband was diagnosed with dementia in the spring of 2014 — I had noticed many changes before the actual diagnosis and was able to transition from my career into full-time care giver status by November of that year. With 30+ years together, it has been a blessing to be able to be here with him on this difficult journey. At the same time, I know that I have never faced as great or as many challenges on a daily basis. Each step has involved a tremendously steep learning curve — I look forward to hearing from each of you and sharing my experiences.
Best regards

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Tavi, you’ll notice that I moved the discussion you started about night sweats into the caregivers group https://connect.mayoclinic.org/discussion/sweating-at-night/

I also encourage you and @lindabf @IndianaScott @rozalia to join this discussion about dementia and caregiving in the Caregivers group https://connect.mayoclinic.org/discussion/caregiving-for-dementia-sufferers/

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