This is what life can be like for a terminally ill patient and his or her caregiving spouse.
The days seem to blur together, a swirl of assistance and medication and work (for the caregiver in the workforce) and trying to keep some kind of life-focus (for the homebound patient).
It can be exhausting for all concerned, and the source for a lot of frustration. It can be soul-wearying in the extreme, because it feels like life is slipping away, sucked into a black vortex of illness and medication schedules and doctor visits.
What to do?
The first thing is to try to differentiate the days. If going to church is impossible, designate Sunday morning the time for 'church TV', and hold to it. Even Joel osteen has something to say to the terminally ill.
For other days, try to have things like 'board game night', 'movie night', and 'pizza night', if the patient can still stomach even a little bit of that mircle food.
And, yes, if it's possible, 'sex night'. I won't be specific, but sexual activity can mke a patient - and caregiver - feel both connected and, at least for a little while, part of the normal world. There are many options; put aside prejudice, and do some research. It's importnt.
Next, dress for the day. Pajamas may seem the most comfortable for the patient 9and for the caregiver on non-work-days), but in the long run they are a bad idea. on't go business-formal., but upon rising put on clothes that will allow a walk or drive in public. And no bathroom slippers. Get some comfortable cross-trainers, or desert boots (thanks, Susan and Christy!).
Avoid the medical we, as in "How are we feeling today?" It robs the patient of individuality, and sets the caregiving spouse at a 'professional remove'. bad idea.
Look forward to something. If the patient cn still get out, plan on seeing an upcoming movie...or, if homebound, look for the release date on Netflix of Redbox, and make a date night around it.
Start new traditions...like, maybe, poker night, if your terminally ill wife is an inveterate gambler? Or quilting Saturday, for the cancer-fighting husband who has discovered a love for the oft and gentle? (Any resemblance to the author and his wife are purely coincidental. Or not.)
Whatever you choose, the caregiver has to take the lead. The patient-pouse already feels like a burden (trut me!) and asking for anything special can be really, really hard.
For some appropriate musical accompaniment, there's no one like Mick and the gang...
I do ask that you be patient with my slow replies to your comments (which we treasure). I'm trying to stay caught up.
Still hoping to get the new and improved version of Blessed Are The Pure Of Heart up and running in the near future. Just haven't had the energy to do it yet...but if you would like to read it, please say so in your comment and I'd be glad to send you a PDF (which should fit your Kindle).
Marley update... been moved to a sanctuary, and Bay County will revise their 'dangerous dog' codes.
If you can, please do leave a comment. I am trying to answer all, and I am failing, but please know this - I read and treasure each one.
Below are my recent releases on Kindle -please excuse their presence in the body of the blog. I haven't the energy to get them up as 'buttons' in the sidebar. You can click on the covers to go to the Amazon links.