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).
I have another blog, "Starting The Day With Grace". The focus is a grace quote from someone you might not expect (like, say Mick Jagger) and a short commentary. I hope you'll join me.
Marley update... been moved to a sanctuary, and Bay County will revise their 'dangerous dog' codes.
WE MADE A DIFFERENCE!
And marley has a Facebook page! Please drop by to see how happy he is today.
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.
Love all of these suggestions, Andrew. There's just something encouraging about feeling and looking your best each day--even if that's not anything more than donning some khakis or, as you've stated, cross-trainers. I also love the idea of planning activities to look forward to each week with your mate. I know how much writing has kept you alive, Andrew, and so much more a date with your beautiful wife! ;-) Great thoughts, my friend! I'll be sharing in the Twittersphere!
ReplyDeleteBeth, I completely agree about looking one's best. I've seen people with terminal illness retreat into the PJs, bathrobe and slippers routine, and it's terrible for morale (albeit it can be necessary when bedridden).
DeleteWriting, and meeting a schedule, has indeed been vital for me, as are the date nights we have...Saturday night, for instance, it's Hour of Power with Bobby Schuller.
I really appreciate your sharing this...and thanks so much for being here.
Those sound like good ideas. Fortunately, I've never had to use them.
ReplyDeleteAs you know, I pray for both of you every day.
Jan, I am SO GLAD you never had to use these.
DeleteWe are so grateful for your prayers. Things are rough.
GREAT stuff here, Andrew!
ReplyDeleteSadly, much of it has been gone from my life since Jerry's medical issues ramped up to high gear over a decade ago, and then into the nursing home nearly 4 years ago. And since he's in a facility an hour away, and me with unreliable transportation, being a long-distance wife is really, REALLY hard. Then when stuff happens, like yesterday morning (he was in ER because he blacked out, fell and hit his head... he's okay though, thank the Lord), that kind of stress is really hard on the both os us... especially since it happens SO OFTEN. Most of the time nowadays all I can do is shake my head and think, "Really, God? REALLY??"
I know, doesn't sound very Christian of me at the moment. *sigh*
The "poker night" idea made me laugh. Jerry and I always played Uno or Scrabble at the kitchen table while we had supper cooking. Now THAT was our fun!
Prayers always. Blessings on ya both and the crew of doggies.
Diana, thank you for this...and I had to smile, because, "Really, God? REALLY??" is one of the most oft-used phrases for me...and, I suspect, even more for Barb.
DeleteI've never played Uno, but we often played Jenga at the dinner table...with sometimes interesting results.
Prayers are appreciated; this has been a dreadful week. Blessings back, from all of us (cue barking in background).
Great suggestions. Prayers continue.
ReplyDeleteThanks so much, Debbie! And we truly appreciate the prayers. They are needed.
DeleteGreat ideas for special things to do. I like the idea of quilting Saturday! I have never learned to quilt, but would like to learn someday.
ReplyDeleteRachel, I hope you do get the opportunity to learn to quilt. It's a process that can't be rushed, and that gives it its own special grace.
DeleteYou are and will remain in our prayers.