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So sad: Husband has glioma and I feel he is fading away

Brain Tumor | Last Active: May 1, 2024 | Replies (101)

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@daughterfuturemd

Absolutely! Great point, @becsbuddy. I think there are a couple of important messages that I have come across throughout my readings & am happy to share them on here. These messages/lessons have come to me through these books & readings but I think they are helpful for EVERYONE on this planet (not just caretakers):

(1) SELF CARE - this is *SO* important yet so hard to do at times especially when we feel tied down by so many restraints as a caregiver. However, it is very important for us to get time to ourselves to decompress, relax & clear our minds. This might means different things for different people. For instance, it could be 10+ minutes of mindfulness per day depending on what your schedule allows. It could even be those 10 minutes when your loved one is napping/sleeping so you aren't worried about constantly seeing how they are doing. Also, mindfulness could mean anything anywhere - its basically where you put everything else on *HOLD*, press the *PAUSE* button and just focus on that one thing for 10 minutes without letting any other thoughts/activities get in the way. For instance, for some it means 10 minutes of prayer or meditation per day, 10 minutes of reading your favorite book, or watching your favorite TV show for 20-30 minutes, etc. By giving yourself this time every day, you live a little for yourself as you take care of your loved one through their hardships.

(2) Rule of Eights (8 + 8 + 8):
*8 hours of work* - work can be anything that you define as "work" or "tasks". For instance, caretaking/giving fall under this category as well. For me, driving my loved one to his/her radiation appts takes up about 4 hours of this "8 hour block" and then I use the other 4 hours to coordinate their other appts, get some studying done, and check my emails/this discussion board.
*8 hours for you* - Now, after 8 hours of work, you are done working for the day. A new 8 hour round starts now, and this one is all for you. Each one of us has some hobby. Enable it in this period of the day. Whether is blogging, reading a book, playing guitar, watching a movie, meeting your friends, going to the gym, etc.
*8 hours of sleep* - Humans need (on average) around 8 hours of sleep in a single day. It is that period of the day where you need to regain your energy for the upcoming one. So try to give yourself these 8 hours of bliss. 🙂

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Replies to "Absolutely! Great point, @becsbuddy. I think there are a couple of important messages that I have..."

Scott, Volunteer Mentor | @IndianaScott | Jun 3, 2020

Hi @daughterfuturemd Your post is a good one and you make some solid suggestions! However, I feel the need to add my perspective gained from my years as a spousal primary caregiver and realize I may sound a bit blunt. If so I apologize in advance.

I believe there are no rules in caregiving beyond medical directives/orders. Every patient, every disease's path, and every caregiver is unique. When someone places 'rules' out there for caregivers to follow, and a caregiver cannot meet those rules, they feel they are not being a 'good' caregiver. That leads to increased feelings of guilt, anxiety, and incompetence. These feelings are already rampant in a caregiver's life so I truly believe they do not need any 'rules' to add to their burdens. Modifiers like 'might help', 'could be tried', 'maybe', 'perhaps', 'works for some people', 'I suggest', etc. can mitigate future feelings of failure by not adhering to, or meeting, some 'rule'. Eight hours of sleep? A nice idea, but for the last four months of my wife's life she required mediations every two hours around the clock in home hospice. Any sleep was a luxury and 8 hours an impossibility. Another for instance for me was for a long time I felt terrible anxiety over the fact I wasn't going through the 'steps of grief' properly, until I realized there are no rules to grief, even though so many folks demanded that there were!

Personally, I've also never met a caregiver who didn't want to take care of themselves. When you are in the pressure cooker that is a caregiver's life, one's own needs quickly come second -- or ninth. By necessity the needs of the patient are paramount and often there is no relief person, no time off, no money, no ability to do anything other than to attend to the needs of your patient. Plus caregivers cannot simply turn off their concern for their patient and her/his needs. And after the direct care duties are the bills, dishes, laundry, cleaning, grocery shopping, meal prep, and more. From my perspective telling a caregiver to 'self-care' is akin to yelling at a drowning person to 'swim'! Nice idea, might make the one who yelled it feel like they intervened, but didn't they think they'd swim if they could?