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

Posts (906)

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

Hi again, @rosez You talk about so many important feelings in your posts caused by caregiving! I, too, had no help with my wife so I understand your feelings of isolation and wondering how to carry on all the multitude of required tasks. I'm hoping you have at least a couple neighbors who aren't snowbirds. I find even waving across the yard these days is good for my mental health — and a smile can go a long way to boost my spirits.

I found it interesting how you said your husband's doc parrots 'you're doing good'. My wife and I heard this at every one of her appointments with her primary care doc that it made both of us uneasy. We'd explain a change, something new happening, etc. and yet we were always 'doing fine'. I don't remember exactly when but one appointment when my wife was explaining a new tremor she was having, the doc saying 'well, you're still doing fine' and my wife looking at me and saying out loud 'Scott, do you think she's as full of bull (deleted) as I do?' It caught me so by surprise I burst out laughing! Not the most gentile way to get the doctor to actually listen, but it did the trick!

If I may ask, how much longer is your husband's course of chemo and radiation set for?

Sending Strength, Courage, and Peace

Sat, May 16 11:15am · Stopping medication in Caregivers

Hello @pcolunio I read your post with interest as it reminded me of several points in time while my wife was on her journey with brain cancer.

While I know every patient and disease are different, as a caregiver I noted some similarities between your situation and mine in what I struggled with as a caregiver.

In my wife's case she made all of her decisions for her care based on her profound desire to always place quality of life over quantity of life. She decided to pass on several 'options' in her care based on her choice of quality. It was not always easy, but it was her choice and I worked hard to understood her perspective during this incredibly difficult time. Often times when I had trouble with some of her decisions I reminded myself how harsh life must have been for her when she awoke each day confronting her own coming death.

The other thing you said that struck a chord was how little, if anything, stays the same during times of caregiving. Chronic diseases begin to run our lives as caregivers. We find ourselves living lives we never imagined and making adjustments we never before considered. We are called on to react to each change and try our best to manage in new and uncharted territories, sometimes daily. No doubt it is daunting and some days just about unmanageable. In those unmanageable days I'd say to myself, over and over, 'love conquers all'.

I am wondering how old is your husband?

Strength, Courage, and Peace

Fri, May 15 11:47am · When the Primary Caregiver Stops in Caregivers

Hi @fiesty76 The only thing I can add is to ask if your friend is in 'end of life' care, are they receiving hospice care? I know in my wife's case it was an incredible change for her and her care in a good way!

Strength, courage, and peace!

Sun, May 10 11:49am · Can anyone recommend computer headphones? in Hearing Loss

I bought a set of DJ headphones. Just one sided, but with all channels on that side. They work the best for me for my computer and music.

Sat, May 9 6:44pm · So sad: Husband has glioma and I feel he is fading away in Brain Tumor

Hello @rosez Nice to e-meet you here on Mayo Connect. I am sorry to read of your husband's health issues. I am indianascott and I was my wife's caregiver during her war with brain cancer.

I noted you said you are weary. Not surprising for a caregiver! It is a tough and demanding road and one which indeed makes all of us weary for sure! I imagine it is tough for you during his treatment regimen especially with that drive!

My wife's condition required I be with her constantly too. If I can offer any suggestions or tips let me know.

Wishing you the best and hoping it is sunny wherever you are!

Wed, May 6 9:29am · Life is an Adventure - How to keep it up with Covid-19? in Aging Well

Good morning @sueinmn You bring up an interesting aspect of our new world. These times can certainly be frustrating!

While everyone is different and how we react to change is unique to each of us I've chosen a different way of looking at this.

First, having lost my wife recently and yesterday losing a longtime friend, I look at our current societal changes as temporary and mostly an inconvenience.

Likewise, since my wife died I bristle when people talk to me about 'getting back to normal' or asking ' how do you like your new normal'. Again, just how I look at life, but I believe if we spend time looking at what was normal or looking to get back to normal, we are spending our time and energy on looking back — not forward in life. Trying to recapture what was, not looking to what is or will be. Significant changes in our lives do exactly that — change our lives. I look at my life now as different and that makes it a new unknown. Just as I look at these times as different and not looking back. Sure I miss doing some things, but at the same time I have found far more than what I may have missed. I've spoken to more friends of old, relaxed, completed more long delayed projects, written more letters, read, etc. than ever before.

It's different, but to me different can be very good 🙂

Strength, courage, and peace

Fri, May 1 6:34pm · Lessons from caregiving paying dividends during the pandemic in Caregivers

Hi @jeanne5009 I hope all goes well for your friend's recovery and for you with your upcoming transplant.

You raise an interesting thought with your comment 'Likely never will be totally over for me.'

I have tried to explain to many folks, after the loss of my wife and with the pandemic, that I view the future without using the word 'normal' or 'new normal'. To me using that phraseology leads one to be always looking back and measuring the future based on the past. Our lives, once we have a major change, are never the same — we can't go back, I prefer to not to look back wishing for something that will never occur, but rather admit life is now simply different!

I am glad your caregiving — for someone else and for yourself is providing a beneficial foundation for you!

Cheers to you!

Thu, Apr 30 11:50am · Lessons from caregiving paying dividends during the pandemic in Caregivers

Hello to all our caregivers! I hope you are all safe, healthy, and doing as well as can be expected during these unique and challenging times.

I had an interesting conversation the other day and it made me want to come here and ask if anything similar has happened to any of you.

A couple of friends I was on a Zoom call with were complaining about how they couldn't stand the monotony and the unknown of being in their 'stay-at-home' situations. Interestingly I realized it has not been all that challenging for me. As they asked me why I said it was because I feel as though I've been through it all before — in a lot tougher way while I was caregiving. The combination of being bound to the house for my caregiving duties, the unknown path my wife would be taking, the intense isolation caused by caregiving, and the exhaustion of the day-in-day-out demands while being 'cooped up' readied me for this bout of isolation.

Not that there aren't bad days, but in my case I think I did find a previously unnoted silver lining to caregiving.

Anyone else thinking about this?

Strength, courage, and peace