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

Posts (871)

Sat, Jan 4 12:36pm · How to get accurate information and ways to get answers from docs? in Just Want to Talk

I'm with you on the use of patient portals with my healthcare, @colleenyoung It used to be 'if you don't hear from us everything is OK'! Now I can look and prepare any questions I might have.

The issue that currently bothers me the most is the move to 20 minute appointments, while doctors feel free to keep patients waiting for hours, as you point out. I have never had a doctor tell me I could spend more time with them since they kept me waiting for a long period of time. Tells me immense amounts about how most doctors value their patients' time. While I was my wife's caregiver and the GP (we both had the same one) knew time and ability to focus were extraordinarily challenging for us, nothing changed! Even if I booked a 20 for my wife and a 20 immediately after for me, the office would not allow me to use all 40 for my wife. Crazy to me! In my wife's condition it took the vast majority of the 20 minutes just to delineate her current status and needs. If it hadn't been for her neuro-oncologist her care would have been subpar for sure.

How did I focus on getting good care? For my wife it was very hard since change was a huge hurdle for her, but the moment she entered home hospice care I began begging the hospice medical director to take on her care, which she ultimately did. For me, two days after my wife passed away I quit that GP and even though I have to travel farther I changed to a doctor who runs his own independent office, which luckily is in my network.

This is a tough issue for many of us!

Wed, Jan 1 7:29am · Meet fellow Caregivers - Introduce yourself in Caregivers

Happy New Year, @soberhoumom Please do not worry about rambling here! Just look at some of my past posts and you'll get to read some ramblings 🙂 Just this past week I began a plan to de-junk our home to avoid this same thing. I have also told, and written down, that our children have my express permission to take what few things they might want from the house and then hold an estate sale to get rid of all the rest. I am thinking of what, back in the day, used to be called a 'contents of the barn' sale!

Hoping you are doing well so far in this new year.
Strength, courage, and peace!

Dec 31, 2019 · Meet fellow Caregivers - Introduce yourself in Caregivers

Hello @soberhoumom Nice to have you here chatting about the challenges of being a caregiver! I am Scott and I was my wife's caregiver for 14+ years during her war with brain cancer. I also lost both my parents during those years.

You are so very correct in saying 'life as I know it has changed'. Loss, grief, and caregiving all carry huge amounts of change to our lives. LIfe is now different as we cope with each of these difficult areas of our lives. I entered being a caregiver as one person and became another. So much changed and along with those changes intense feelings of all kinds of different emotions!

One of the changes I noticed most was my inability to manage my emotions. I wore them on my sleeve so much more than I ever had before — and still do. Our grandsons kid me about not being able to watch any Disney movie without crying these days — and they are 100% correct!

It must have been tough going through your folks home.

Strength, courage, and peace!

Dec 30, 2019 · Baker's Cyst in Just Want to Talk

IIRC she had it drained two times. Over time it did go away for her, but as with so many things in health, each body is different.

Strength, courage, and peace

Dec 30, 2019 · Baker's Cyst in Just Want to Talk

Hi @charlena My wife had them periodically. Once she did have it drained by her orthopedic doctor in the office with only a topical anesthetic. Provided solid relief for her.

How ling have you had this?

Dec 23, 2019 · Superfund means what? in Just Want to Talk

I would only add you might have been exposed. I would agree testing might be prudent, but also dependent on what jobs were held, which military installations, etc.

Dec 14, 2019 · Meet fellow Caregivers - Introduce yourself in Caregivers

Hi @arlenejc I am sorry to read about your husband's journey and your health issues as well. I was my wife's caregiver during her 14+ year war with brain cancer. For me caregiving sure was super demanding and having one's own health and pain issues can make it all even more overwhelming than it already is!

During my wife's illness she suffered from many dementia-like symptoms along with the physical decay from the cancer.

I know every patient, every disease, and every journey is unique, but in our case we found that home hospice was a positive solution for us. I know it is not for everyone nor is it possible for all, but I just wanted to raise it as a possible option.

Wishing you continued strength, courage, and peace!

Dec 14, 2019 · Talking Frankly about Living with Advanced Cancer in Cancer

Since we're sharing pups…here is my Napa (on right) and our daughter's Stella on left from last evening. Both Lab rescues. Definitely bffs (best furry friends) for sure!

On the topic of life/marriage/getting on after the loss of our loved one, I can only relate my personal experience on this.

Before my wife was diagnosed we never discussed the topic of my marrying anyone else. We were married to each other, I coveted no other, and I had no desire to move on then. Similarly when she was ill I viewed our marriage the same way — I treasured every day we had together and I had no interest or desire to end it prematurely by discussing what I should do about another marriage after my wife died. Nope. I was married and that was all I wanted to concentrate on — the time we had left. I knew it would end too soon as it was and I viewed any conversation on another marriage as encroaching on the precious time we had left to focus on each other.

Just my view as a guy.