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

Posts (917)

1 hour ago · So sad: Husband has glioma and I feel he is fading away in Brain Tumor

Hello @rosez Sorry to read of your husband's continued decline. Chronic illness is such a difficult thing to manage with its almost daily changes and a caregiver's constant monitoring for any alteration in our loved one! All the changes are so hard to witness!

I remember when our lives revolved around the medical calendar of when the next test, MRI, etc. was. I am hoping for the best outcomes possible for your husband as he continues his chemo.

Strength, courage, and peace

Sun, Jul 26 9:10am · Death of my wife in Loss & Grief

Hello @charlieindia I am sorry to read of the loss of your wife. I am Scott and I lost my wife a couple years ago after her 14+ year war with brain cancer. During those years I was her caregiver and also often had feelings, which still surface, that I could have, or should have, done more than I did. Guilt, doubt, and anxiety are emotions all too common of with caregivers I believe! We do our best in each situation and each day, but often I would find myself questioning if it had been enough when I'd finally fall, exhausted, into bed. Now I like to say 'superheroes only exist in he comics! Superman and Wonder Woman weren't caregivers!'

You also touch on another subject I struggle with, which is grief. Early on I got sucked into the belief one had to follow someone's supposed 'steps of grief' that are often promoted to us as the right or only way to grieve. It wasn't until I threw that book away that I personally started to believe one's grieving is as unique as was the love we hold for our lost loved one. I became much less anxious over how I was feeling each day once I accepted I could grieve in my own, unique way and that was just fine. I continue to take my grieving slow and as it occur in my life. After all the years I had done nothing but be a caregiver, I began a list of things I could do that I had put off. Wrote letters to friends, visited our adult children, read books, did a few way overdue home maintenance projects, and eventually expanded (pre-pandemic) to visiting a couple of distant friends who had been stalwart supporters of my wife and/or me.

I also discovered Connect and the Caregiver group, which allowed me to open up far more about caregiving and my feelings as an electronic form of therapy, which works for me. I hope to read more from you in the future!

Unfortunately I have no advice on dating. Personally, I'm comfortable right now with my life. I am lucky to have a couple good friends and since March have been called on to take care of additional family members in need during the pandemic. Also I have found (again probably just me) that after so many years of constantly being on call 24/7/365 as a caregiver I enjoy being just in charge of me.

Strength, Courage, and Peace

Sun, Jul 19 4:41pm · So sad: Husband has glioma and I feel he is fading away in Brain Tumor

Hello @rosez Good to hear from you again here! I might imagine your husband is relieved to be done with his most recent radiation and chemo regimen.

Your post helped me recall the tough times in life when my wife would say to me 'this isn't what I expected from life'. I would remind her of a phone conversation she and I had in the early days of our courtship. She was in one city while I was hundreds of miles away in another. We were on the phone, late at night (remember waiting until after 11:00 pm so long distance was the cheapest?), talking about the future when she said to me 'you know, Scott, neither of us knows what the future will hold nor how easy or hard it might be. I know we don't have much of anything right now, but I know I'd rather struggle with you than without you'. I told her I absolutely agreed!

That sentiment never changed for us. I always remembered those words — that we’d rather struggle together than struggle apart. After we married our life held more than a share of little struggles, significant struggles, and then the monumental struggle of her years with brain cancer. As partners there were struggles where she shouldered the majority of the load, then other times when I did. In each of those times we’d remind each other of that old phone call.

From the day I met my future wife nothing was ever what I had thought it would be. At first I didn’t even think we’d ever marry since we were both engaged at the time, just not to each other. 🙂 I guess I’m trying to say none of us ever know the twists and turns our lives will take or where our paths will lead. Certainly times of caregiving are a prime example of this! I never expected to be my wife’s caregiver at 49 nor did she expect to have to battle for her life as she did.

Wishing I had some magic words to soothe your way, but at least I can send strength, courage, and peace

Thu, Jul 2 9:22am · Post-op care locally after surgery at Mayo? in Visiting Mayo Clinic

Hellon @amywood20 My wife had very complex brain surgery at Mayo (Rochester), but after her hospital stay she did her rehab for over a year back in our home community, Her Mayo specialists interfaced terrifically with her gp back home, too.

Strength, courage, and peace

Sat, Jun 27 7:53pm · Going my way: Decided to stop cancer treatments in Breast Cancer

Hi @merine I am sorry for the delay in responding, but I had my entire post written to you and the system ‘burped’ and ate it! So here is try #2!

Thank you for your kind words. I wish I had some knowledge of your Topotecan, but I am not at all familiar with it. I’ve thought about advice I might give your husband and again, no magic words, but just my thoughts on caregiving.

First, I’d tell him superheroes only exist in comic books. Not in caregiving! None of us can do it alone or do it all. We can only do the best we can with what energy, abilities, etc. we each have. My wife and I talked about how we could simplify our lives and did so. We agreed there would be some things in our lives that would become ‘good enough’! Meals got simplified, laundry was OK in piles, focus was on what my wife needed (nightgowns, clean sheets, towels, etc.) and the rest could wait. Dirty dishes could sleep an extra day/night in the sink without regret. Dust bunnies became our accepted pets, etc. We agreed to spend our time on those things we cherished the most – two best friends, tea times together, her daily favorite word game in the morning, watching the birds at our feeder, and the deer in the yard. When her abilities changed our chant was ‘it is what it is’ and moved forward rather than looking back at what was lost. We added a bit of humor. I posted a sign at her wheelchair ramp and called it “Mr. Toad’s Wild Ride” from Disney. She named her cane ‘Her-icane’ and I taped it on! When she could no longer manage both lunch and dinner in a day we ate “Linner” once a day. As I often said to my wife, too, she had the truly tough part of the journey so I tried to see life from her perspective and not mine. That said, there were also times when tempers grew short, flared, and when the pain and anger got overwhelming. We worked hard to accept those times. I also tried very hard to eliminate the words doubt, anxiety, regret, etc. Impossible to totally jettison, but I know they serve no healthy purpose in caregiving. Perfection is not a caregiving option for those of us who are merely human!

I appreciated a book by James E. Miller. Half is titled “When You’re the Caregiver: 12 Things to do if Someone you care for is Ill or Incapacitated”. The other half is titled “When You’re Ill or Incapacitated: 12 Things to Remember In Times of Sickness, Injury, or Disability”. By Willowgreen Publishing, I got it free from the cancer library at Mayo Clinic, Minnesota.

Please let me know of any more questions you might have or if your husband has any!

Strength, courage, and peace

Sat, Jun 27 8:49am · Going my way: Decided to stop cancer treatments in Breast Cancer

Hello @merine I hope this finds you doing as well as can be hoped for today and that the sun is shining wherever you are located! I am sorry to read of your health journey. I know every patient and their disease is unique, but I share my wife's experiences for what they are worth for you.

I am Scott and I was my wife's caregiver during her 14+ year war with brain cancer. During her war she made two decisions, which she never regretted. One was in the very earliest days of her disease when she told me she would be a 'quality over quantity patient' no matter what. Many of her subsequent decisions were ruled by this master decision and it served her well. While certainly not for all, she did forego some treatment options due to the potential outcomes and/or side effects.

Her second grand decision was to enter home hospice immediately once her neurooncologist prescribed it. She never regretted this and received truly amazing patient-centered care for the 14+ months she was in home hospice. Her pain management was also a challenge during her disease, but it was the best in home hospice and her nurses and doctor were amazing!

I wish you continued strength, courage, and peace!

Fri, Jun 26 1:09pm · So sad: Husband has glioma and I feel he is fading away in Brain Tumor

Not at all, @rosez Please stay and know we all unload from time to time here! I did that often when I was first in the caregiving discussion group! We all need to talk at times and this is a great place to do it! All caregivers need other caregivers!

Fri, Jun 26 8:18am · So sad: Husband has glioma and I feel he is fading away in Brain Tumor

Hi @rosez I am so sorry to read of your husband's continuing health difficulties. I remember it was beyond difficult when I desperately wanted my wife to get better, but her disease had alternate plans. It was very hard for me to accept the fact I had no control over any aspect of her disease, nor did she. I think as caregivers we want to make things as best we can, but often cannot. That was one of my supreme challenges — having to come to grips with my inability in that area and to instead be forced to change my life as a result.

Mayo Connect was a sanity saver for me so I hope you stay here as your time allows!

Strength, courage, and peace!