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Caregivers, Cancer, Chronic pain, Eye disorders, Neurology (brain and nervous system), Palliative and end-of-life care

Posts (819)

1 day ago · Palliative Care: What is it? How do I get it? in Cancer: Managing Symptoms

Hi @debbmol62 I am sorry to read of your many health issues. That must be a tough road you are on for sure.

Due to my wife's brain cancer, for years she was on palliative care, prior to her entering hospice care. I know that a portion of her palliative care was always pain-management oriented. I know in her situation they didn't want her in unnecessary pain and I would guess that is how all physicians feel.

Have you discussed pain management with your doctor?

Strength, courage, and peace

3 days ago · Meet fellow Caregivers - Introduce yourself in Caregivers

Hello @kayakeradams Nice to e-meet you here on Mayo Connect. I am Scott and was my wife's caregiver during her 14+ year war with brain cancer. I am glad to read you found Connect. I also came here due to the isolation and stress of caregiving. You are correct that this group is a good place to share, learn new hints and tips, and vent. I think caregivers need all three at times.

I am sorry to read of your wife's health journey. Sounds like a tough one, indeed. The roller-coaster aspect of caregiving was one of the most difficult things for me to cope with — as was the daily grind of being needed 24/7.

Looking forward to your next post. Do you have any specific questions?

Strength, courage, and peace

3 days ago · Dementia - First 5 years report - sharing experiences in Caregivers

Hello @rafaeln27 Good to her you are dong well! Sorry to read of the UTIs I know they plagued my wife during her illness.

All is well here — enjoying the first bits of late summer color in the trees and soon my favorite weather!

Best regards to you and all your family!

4 days ago · Lessons I Learned From Caregiving in Caregivers

Thanks for the kind words, @becsbuddy

As I think about your great question, here is what I think:

1 — Caregiving must be demanding. How are you doing?

2– Is there anything I can do to help either of you?

3 — See #1

4 — Is there anything I can do for YOU?

5 — I've heard XYZ is a good (person/company) have you ever tried them?

The only other thing I'd add here is that if something is offered, I hope the person will actually follow through. So many times folks said 'sure I'll do that' and never did. This is especially true if it is said in front of the patient — offering, then not doing it, was especially crushing to my wife.

5 days ago · Meet fellow Caregivers - Introduce yourself in Caregivers

Hello @ice I am sorry to read of your husband's healthcare journey, but it is good to hear you are somewhere with good medical care!

While you will find many hints, tips, and suggestions here on the caregiving discussion group, I am wondering if you have checked out the resources of the national Alzheimer's Association at http://www.alz.org? Also there is some good stuff at http://www.caregiver.org.

As a longtime caregiver for my wife, who while suffering from brain cancer but suffered from many dementia-like symptoms, my daughter-in-law's father who had Alzheimer's, and my mother-in-law who suffered from frontal temporal dementia, one of the things I can say is the dementia journey is highly individualized as are the caregiving demands of each patient. One thing I found in each was routine was incredibly important and helpful to the patient as well as the caregiver. Changes of any kind (location, medical visits, etc.) were often causes for additional decline.

What educational resources have you accessed so far?

Strength, courage, and peace!

Fri, Sep 13 1:34pm · Lessons I Learned From Caregiving in Caregivers

Good day caregivers everywhere! I hope, no matter where you are, the sun is shining on you today.

I love to write and just the other day I finally felt strong enough to begin to write about the experiences and lessons I learned during the time of my wife's illness and my years of caregiving. Up until now I have basically written about the pre-cancer times in our lives.

Rather than take up space here and retype them, I thought I'd invite any caregivers here, who are interested, to simply check out the below links. I have titled them as Shifting Gears since prior to this my website has been mainly focused on wine. I know — big shift 🙂

The first is what I see as some of the primary lessons I learned as a caregiver, noting there will no doubt be more to add:


The second, which I just wrote today is what I call busting the bromides I encountered so often as a caregiver:


Certainly I have not hit them all so I ask are there any bromides that as a caregiver particularly get your dander up?

Fri, Sep 13 1:16pm · Dementia - First 5 years report - sharing experiences in Caregivers

Hello @rafaeln27 This is @IndianaScott here. An old friend of mine from Brazil just emailed me yesterday and it made me think of you. I just wanted to reach out e-style and ask how you, your mom, and sisters are doing these days?

Fri, Sep 13 1:00pm · Feel so lost in Loss & Grief

Hello @vickiekersch I am sad at your story, but pleased you found the grief and loss discussion here on Mayo Connect. I am Scott and I was my wife's caregiver for the 14+ years she fought her war with brain cancer so my comments are based solely on my experiences during this time and as I continue my daily fight with grief.

There are no reasons we are given anything in life. There is no rhyme nor reason to it. As I say to our adult children all the time "there's a reason for the expression 'sh*t happens', because it simply does". My wife was only 49 when she was diagnosed. No cause, no reason.

We often said things we shouldn't have during her illness. I believe everyone does when they are either exhausted from caregiving or exhausted by the toll the pain and their own grief at dying takes its toll. Some folks apologize, many don't. If I knew why folks do and some don't I guess I'd be a gazillionaire psychiatrist with wonderful answers 🙂 During my wife's illness she felt the need to make amends with only one of her five siblings. More often than I can count she would lash out at me. Her neuro-oncologist said it was common for the person suffering to lash out at the person they felt safest with. The more I thought about that the more I came to understand the grief my wife must have been dealing with daily over the losses of so many abilities in her life and her pending death) that while she had to hold it in for many, it was the safety of our

I believe the journey though grief is personally unique to each of us who grieve a loss. It matters what we are made of, what our love was for our lost one, and of course how each of us chooses to think about the hole that is left gaping in our souls. For me, my journey improved the day I took the book someone gave me on the 'stages of grief' and tossed it into the trash. At that very moment I gave myself permission to grieve how I needed to grieve, not how someone else thought I should do it. That permission didn't lessen my grief at all, but it allowed me to actually more fully grieve.

Thanks for posting here.