But there's something worth addressing, and I'd love your input...it's what I call the caregiver's dilemma.
You're taking care of your terminally ill spouse...and you want him or her to have the best quality of life available.
But how do you do it?
If he or she sinks into the sofa or bed and dozes through DVDs, do you support that, or push for activity, even when you meet resistance?
If your spouse keeps pushing to the point of collapse, do you stand back and ready to pick up the pieces, or do you chide their selfishness and lack of consideration? Because, after all, it's you who will be picking up the pieces, at no small cost to your psyche.
(I'm in the latter group, and I suspect I have caused my dear wife no end of heartache by being willing to beat myself up to prove a point, that I'm still man enough to beat myself up.)
Reality lies somewhere between these extremes, of course.
But...what would you rather face? And if you've been a caregiver, what of this did you see?
Since I'm a permanent beat-the-crap-out-of-myself patient, the only appropriate music can come from Imagine Dragons...
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.
For the most part, it's going to depend on what the ill spouse is going through. Such as, your cancer is not the same as my husband's failed spinal surgery (plus the 26 other medical conditions he has) that keeps him in a wheelchair or his recliner. Both are excruciating in their own ways, yet separate in what they cause either of you guys to contend with. Jerry had a couple medical problems that began before we ever got married (married in 1995, but we've been together since 1992)... things have just snowballed from there with one issue piling on top of another. Practically our whole marriage has revolved around me caregiving for him. In the beginning stages of his medical problems, we were still reasonably active, but with each succeeding issue that cropped up, his energy and activity level decreased, especially after the failed spinal surgery in 2013. Since then he has pretty much been in a wheelchair (he can barely walk 25 feet with his walker), has gone from 180# to currently #340 (many factors to this), and has been in a nursing home since April 2015, a decision we had to make because his health was directly affecting mine and I could no longer be full-time caregiver. I've watched him suffer through some of the worst chronic pain episodes I've ever seen in my life and not been able to do anything about it (he's on enough pain meds to kill a horse and still has intractable chronic pain). Although he might not admit it, I believe he gave up on trying to "get better" after my oldest son died in 2013... I saw that as one contributing factor to how he viewed his life (my sons always told him that he has been the father to them that their own dad never was... he has always loved those boys as his own). I'd tried for years to help Jerry get his health turned around, but much of what he is living with is genetic (his dad, brother,and uncles all sharing so many of the same health problems).
ReplyDeleteBut at what point do either of you say that it's pointless to continue? At what point do you and your spouse decide to "let it go" and let life move along its course without any prodding for things to get better? Only that couple can decide what's best for their relationship and for the ill spouse and the caregiving spouse. I haven't "given up" on Jerry... I've just learned to rely more and more on God, handing over my husband to Him for whatever His Will might be for him... and me. I'm 60. I'm tired. My health has suffered, too. I'm no good to Jerry if I don't take care of myself. Of course, he has Medicare and Medicaid... and I have no insurance, so getting the things taken care of for myself is currently out of the question due to extremely limited income. But I know he's taken care of at the nursing home and that's one less stress off my shoulders. Don't know if I answered your questions. And I bet this is gonna look like a novel when I hit "publish." Ha! I'm sure there's a lot more I could tell you but it escapes my thoughts at the moment. There is one thing though... you and Barbara need to be HONEST and OPEN with each other. Discuss how this situation has been affecting each of you personally. If you guys hold anything back, you may have misunderstandings and regrets later. You can only work out the answers to your questions by TALKING with each other. And talk with God. That's most important. God MUST be at the center and you have to turn over control over to Him.
Keeping you all in prayer as always! We love you with the love of Christ, brother. Blessings.
Good golly molly that turned out long. Ha! Sorry, Andrew. Geesh.
DeleteDiana, I am so honoured that you shared the story of your life with Jerry here...I think you have really illuminated many of the caregiving issues for readers of this blog, and you've sharpened my focus in some areas...like the need for honest and open communication on how the situation is affecting Barb and me, as individuals.
DeleteI know from what Barb has told me that watching someone with chronic and intractable pain is perhaps the hardest part of caregiving. I take no meds because the side effects send my PTSD out of the box, and I'm not good nor safe to be around when that happens. I am very lucky, though, that I was very well trained to manage pain through biofeedback and meditation. It does help.
We so appreciate the prayers, and love back!
Andrew- I've never been a caregiver and I'm praying for you! I guess if I was caring for my terminally-ill husband, I'd hope he would still have the desire to remember my needs and feelings. There has to be give and take even when life is hard. Even for a few minutes, it would be maintaining the relationship and focusing on that instead of the the hard circumstance.
ReplyDeleteI would be praying for wisdom about how to maneuver this difficult situation.
Julie, you're so right...that give-and-take that respect the real, underlying marriage relationship is vital. I do my best at this; not sure how well I succeed. Sometimes better, sometimes worse, I guess.
DeleteThank you so much for being here!
Hubs broke his neck in Nov 2003 and was in a halo brace for 6-1/2 months, in a hospital bed in the laundry room. He was a relentless patient. I was his (kind of) caregiver; however, he was very uncooperative. I was afraid to go to work because of what he would try to do with that 30 lb contraption bolted to his skull. More than once he'd overdo himself. SOUND FAMILIAR, Andrew?
ReplyDeleteSUsan, wow...and yes, it does sound familiar.
DeleteI am working on it. Baby steps, but moving forward!
Honestly Andrew, I cannot imagine 100% of either scenario. I would think each moment might bring different needs in you both and what it requires is constant honest communication?
ReplyDeleteI'm late from Inspire Me Monday - but I get here eventually. As always, I look forward to your posts.
Carol, thanks so much for being here! Constant honest communication is truly vital, but it can be tough when pride, personality, and deeply instilled training get in the way...as they do for me, I'm afraid.
Delete