Meet fellow Caregivers - Introduce yourself

<br><br><br><br><br><br><br>Colleen Young I have noticed that I receive a lot of email from the caregivers group, however I signed up for the chronic pain group.  While I did care for my father when he had Alzheimer's and helped with my mother when she had cancer, my real interest<br> is the chronic pain group which is what I have.  Please make sure that I receive information on chronic pain.  I receive a lot of emails and I need to reduce the ones I can.  Of course if there were something I could contribute to any group I would, but I<br> feel most connected the the chronic pain group.  Thanks 19lin

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Collen, sounds good. I don't know a lot about medically fragile children. However I went through early child special ed through transition age 18-21 special ed. I went through day programs, waivered services, guardianship as a parent caregiver. These things are all part of developmental disabilities system in Minnesota. I know how overwhelming it is for young parents. That's why I brought up. Developmental disabilities is a system.

Hi, I'm Mayflower7. I am 72 years old and have a dear friend of 25 years who is 62 and suffering from early onset Alzheimer's. She has been force to resign from her teaching position for almost two years. I live about two hours from her, but we are more like sisters than friends. She has very little family. Her son is taking charge of her personal finances etc..and is doing a great job, but he also is a couple of hours away.
She is going through "Confabulation"...and my last visit with her was very difficult to know the truth from her Truth..she is very combative, paranoid, and feels no one understands what she is going through.. some of her habits are unsafe.. no matter how I tried to help her she would not accept any help.
It was a hard visit.. when I left it was amicable...and I continued to text her positive messages etc.. she responded positively.
Then out of the blue she sent me a message and said " please don't contact me again. I am done with this!"
I was shocked, and upset...not understanding why she suddenly reacted this way. I text her back and asked her to please tell me why and what is wrong?
I received no response.. I informed her son and he suggested I let it lay for awhile!
How does someone who wants to do the right thing go about helping, not hindering a person with this type of dementia!

Hello @mayflower7 I am Scott and I was a secondary caregiver for my MIL who suffered from dementia from the age of 52, as well as the primary caregiver for my wife who suffered from brain cancer for 14 years and struggled with many dementia-like symptoms. Let me say I am in no way any type of medical professional, so what I say only comes from my experiences as a caregiver and having worked for the Alzheimer's Association.

With my wife it was very important for me to take, and accept, my cues from her. I would often tell folks 'if I wanted to I could spend all day arguing over almost anything and everything'. Instead I picked only those 'battles' which were crucial, let her have her thoughts, and did my best to, more often than anything else, just 'be' with her. I allowed her view of reality to be her reality with me just along to keep her company and safe.

Given what you describe, it could be that the phone is causing your friend increased anxiety. Could be the sound of calls/texts coming in, could be new confusion at using the phone, could be the light in it, the interruptions (especially if she happens to be focusing on something else at the time). Plus things simply change without notice and at time any rhyme or reason. Unexpected interruptions in daily routine can be very challenging for many patients with dementia.

I wish you courage and strength!

Thank you, Scott. You are encouraging. I have just been encountering this exact thing the last few days. My husband of 62 years is complaining that he is going to through the phone away as I am on it all the time. I made two business calls this evening! Also he will only let the TV be on if it is a program he wants to watch. We also had an altercation this a.m. about the fact that I was watching a local station to get a weather report. I feel like I'm being isolated from the world. But tomorrow may be a different day.

Thank you for the opportunity to express my concerns as a caregiver of my spouse who has dementia (2 1/2 yrs. diagnosed).

I understand your frustrations because my husband was diagnosed 2-3 years ago w/dementia and he was an active type a personality, very active, etc. and now he does not do anything.....oddly, he thinks he works hard all day, but mostly he is looking for lost items, etc. and takes forever to shave, won't shower (only sink baths,etc.). I still feel like he is "present" with me and our children but he is definitely different now. I am thankful that he still knows us and is happy with our present situation. One thing he does that frustrates me is his obsessing on one thing (like keys) for unlimited time....either hunting them or constantly trying them in one lock or another.

Hi, I have been married for 66 years to my husband, he is hard of hearing without his hearing aids. Perhaps your hubby needs to have a check up, not just his hearing. Could be a start of dementia.or something else. I know as we get older I am 83, hubby 89 things are not the same all the time. Just a thought.
Nancy shodrtshot80

Welcome to the Caregivers group on Connect, @dorothys! We have an active group of people caring for a partner or parent with dementia.

Here are a few discussions to get you started.
- Caring for someone with dementia / Alzheimer's http://mayocl.in/2ccA0jO
- Dementia Anger Issues - bathing http://mayocl.in/2g0Urkt
- Husband with early Alzheimers -question http://mayocl.in/2fd7gbG