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An unbelievable journey
Most people can't grasp the gravity of our situation or simply don't want to take the time to fully understand it. But I'm hoping I'll find the support and understanding I've been searching for these past 20+ years of assuming the role of my husband's on and off again "caregiver". I'm not necessarily looking for sympathy, just helpful tips and suggestions from those who are or who have been in similar situations.
My husband was diagnosed with a rare kidney disease (MGN) in 2008 and ever since has had one serious illness after another. Three pulmonary embolii episodes, Hepatitis C, and Stage 4 Non-Hodgkins Large B-Cell Lymphoma being among them. Obviously, he's been through a great many physical health challenges and, thankfully, has been in remission after 6 rounds of RCHOP chemotherapy in 2018.
Obviously, we've both been through a great deal. His challenges have been of a more physical nature than my emotional ones but we have both suffered a great deal, just in different ways. I've administered stomach injections, packed surgical wounds, spent sleepless nights doing research while trying to hold a full-time job, changed bed linens multiple times during the night, driven him back and forth to Emergency Rooms, gone with him for scans and doctor appointments and so much more than I can possibly articulate here; but, because he still undergoes yearly MRI scans to monitor cysts on vital organs, largely due to the one they've discovered on his pancreas a couple of years ago . . . we are still finding ourselves challenged by the medical profession and all that goes along with that.
We are both retired now and have been married for over 47 years but 20 of those years, unfortunately, have been riddled with unimaginable health challenges few have ever taken the time to understand . . . friends, family and health care professionals alike.
I am not an overly religious person . . . faithful, just not religious per say and have had to reach deep inside for the strength necessary to do the things I have had to do. Even he, at times, fails to grasp how difficult it is to face the challenges of a person who has had to play the myriad of roles I have had to face over the years.
I've found that an amusing story or the written or spoken words of encouragement from someone in a similar situation to be invaluable. I'm hoping that someone in this forum will be able to offer the support and understanding I still search for. Hopefully, I too may be able to offer someone else the same.
Thank you for listening!
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@lizzyj58 Thank you.
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1 Reaction@suppiskey2surv Thank you so much!
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1 Reaction@lizzyj58
So here I am again this morning. While my coffee is brewing, I shall try again to send the reply I was trying to send you before I "lost" it to the world of glitches.
I was just going to say that I had to position myself somewhere between being an annoying "Pollyanna" and a depressing "Eeyore" from Winnie the Pooh coping with all the waiting and trying to live with what, at times, feels like an impossible challenge. I hate the conventional expression of "staying positive". To me, being "positive" is not in accepting bad news, especially when it involves health information. Rather, I believe that good comes from good and bad comes from bad; so, when we are told "bad" news . . . for me, it's an invitation to "fight" for a good outcome . . . or as "good" as I can make it. How much more "positive" could that be? At least that's how I look at it. Sitting around and waiting for an answer or a solution to come to me in some sort of "bolt of lightning" (something that, probably, will never materialize) doesn't work for me. When I'm told something "bad", I'm "positive" it will suck. So, rather than hum myself into some sort of mantra that everything will be okay if I just "accept" it, I start looking for ways to turn things around and look for every cotton-picking thing I can find to cope with it that will make us both feel better . . . Here are a few examples that have helped us through some of the toughest times.
1) Flavored coffee
2) Bubble baths
3) Chocolate
4) Clean sheets
5) Sites like these, looking for tips, suggestions and support to help us through
6) Long walks
7) A glass of wine (or two)
8) Music (Foo Fighters and Led Zepplin are my personal favorites)
9) Finding out as much as I can about whatever "they" tell us
Things like that . . . things that will help me help that special someone I love
I've learned to set certain limits, though . . . something I wish I had decided years ago. If I don't think I can possibly take another day of doing stuff and I'm exhausted from all the worrying and trying to sleep on a lumpy cot next to my husband's hospital bed (which was usually the case when he was at his sickest), I've decided that, should those things start happening again . . . well, I just won't. Fast forward from 20 years ago . . . I've decided to go home, recharge and take advantage of some of those things I mentioned.
A modicum of peace, a place where I don't "accept" poop but look for ways to "fight" it, even in the midst of despair, is a place I wish I had discovered 20 years ago. Disappointing, disturbing information has just become part of our lives that I can't say I "accept" or ever will. I've decided that wishing it away is a waste of energy. I've decided it's okay to hate it . . . wherever it comes from and embrace those things that make it easier to bear, wherever THAT comes from.
Life is hard sometimes but if I give it my all to try and turn things around with every fiber I have inside of me, then I find the peace I long for that helps me wake up the next day with hope.
I feel most "effective" when I put myself in that place somewhere in the middle between the ponies and rainbows where I drop like a cannonball when we get devastating news and walking around feeling like I'm in a dark cave. That may not work for everyone but 20+ years (and counting) of this rollercoaster has landed me here . . . somewhere in that middle spot between lulling myself into a state of delusion and becoming totally depressed all the time.
I, also, came to realize that everyone is dealing with something. It may not feel like that sometimes, when I'm at the drug store filling a prescription for a serious illness and everyone else is happily meandering around with smiles on their faces while I'm in a state of worry and despair . . . but they are. It just doesn't seem that way when your world stops and everyone else seems so "happy".
I wish you and everyone else who finds themselves dealing with all that confounded waiting and worry all the time, all the best. We are all in the same boat really . . . you are not alone!
Okay . . . time for that morning coffee.
Love to all!
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6 Reactions@suppiskey2surv Wow,you have a wonderful attitude, I just hope I can be even a little like you when we get results and after dr appointment on .Monday. Thank you so much.
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2 Reactions@lizzyj58
Well, I'm not sure you want to be like me, honey. Just listen to what your heart tells you and follow its lead and don't look back. What works for me may not work for someone else.
I'll be thinking of you and your husband the whole time.
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4 ReactionsHang in there!
I'm in this forum because my husband got diagnosed with stage 4 prostate cancer earlier this year. He's ok now, finished chemo but is still doing ADT which is medically castration. THAT was the hardest for him, because it's his "manhood" though I told him, after almost 27yrs of marriage and 4 kids later, I don't care about the sex life, I'd rather have a husband who's alive, than a dead husband and still no sex life!
But knowing he'd have to take those shots made me almost at my breaking point!
But it's also because we were the caretakers of my in-laws for quite a while, they passed away exactly a year ago! Both in their 90s and were pretty independent until the last few years. It wasn't all of a sudden they got sick, they just got older and more frail and had some health problems, my MIL had a pacemaker for over 20yrs, my FIL got dementia that got really bad at the end! several years ago I was more their driver to doctor appointments, they were able to do local stuff and drive until they couldn't! (two fender benders in a week!) then it got to the point of not eating or being able to cook or clean, several doctor appointments and ER visits and not being able to leave grandpa (my FIL) home alone, so I'd drive or be with grandma while my husband stayed with his dad. At some point we moved them in with us but that lasted just a few weeks, none of us were getting any sleep, grandpa would wake up and turn on all the lights or rummage in the kitchen or go outside to look for a bathroom, grandma would be screaming at him in the middle of the night, so of course we'd ALL wake up! (including 3 of our kids still living at home) we moved them back to their own house AGAIN, (before covid they lived in an independent living apartment place but covid had them locked down and they felt like prisoners and grandpas dementia really went a lot worse then so we moved them out)anyways, last summer hospice got involved for both of them! I really thought hospice did MORE than they did, but only weekly visits and phone calls, they DID help more near the very end, but we hired a CNA to come and help, at the end she even lived there Monday to Friday (she was a friend from church) and my husband lived there Friday to Monday... it was exhausting! Even though I took a back seat with helping the last few months, I was still the driver for errands etc and taking care of our kids at home and our house!
It's so important to reach out and get help when you need it, we don't have any other family, so we had no help but the CNA was well worth it!
I don't know but I can speculate that all the stress of it all, brought on my husband's cancer! who knows... but you gotta take care of yourself! I often cry because I'm overwhelmed by it all, we have a supportive church and friends, and I have a hobby (I'm a quilter) so after I'm done homeschooling my kids, after lunch I go sew and put on headphones and listen to an audiobook just to mentally "get away".... granted my husband doesn't "look" sick now, other than being bald from the chemo! He still does stuff.....But it's still hard.
I don't have any family left either, my mom passed away 2 weeks after my husband's diagnosis! at some point we had 3 sets of ashes in the closet! I told my husband to FIGHT this because I don't want a 4th set, I'm NOT starting a collection!
I still cry and pray and get sad and mad and that's ok, we're human!
Just want to send a big hug! hang in there!!
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8 Reactions@beaquilter
OMG, honey! What a story! How hard it must be to NOT give into the tears that must well up inside you each and every time you recall what you've been through and what you're still dealing with! It's so hard sometimes, isn't it? You know what, though? I say . . . cry when you need to. Don't fight it! Let it out, my friend. Then, pick yourself up and go to those places within yourself and turn to that support network it sounds like you're so lucky to have.
My husband has never been one to share much of anything, let alone how he feels about anything. I suppose most men don't; yet, that leaves us to "fend for ourselves", doesn't it? Things are better for us now but the "fairies" didn't make that happen. It's taken us over 47 years to come to this point of "semi" tolerable existence, tolerating each other and our opposite ways of handling problems. The problem, I think though, is that when it comes to serious illnesses (and they tend to get worse as time goes on with old age) . . . is, well, when it starts affecting the other's well-being and (frankly) "sanity" . . . it's time to talk it over and work on those things we can do to help each other through it.
You sound like a strong person too . . . so, don't lose that in submitting to anyone else saying you should. It's a necessary and vital part of surviving hard times.
Stay strong and keep that quilting part of your survivor's tool kit.
Love and hugs to you and your husband!
Dawn
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4 Reactions@suppiskey2surv
Aww it's ok. I could also go into detail about the sexual abuse by my dad when I grew up, from very little until I moved to the US to go to college at 18! But I won't....It's really a BIG reason why I gave my heart to the Lord!
Anyways, the whole last year sucked! Oh my husband also got laid off by his job last spring, but it was a blessing in disguise because his parents got worse and he was able to help them more.
At least my husband is active still but I still have PTSD from my in-laws, being old and frail and giving meds and morphine to them near the end! The sleepless nights, diapers etc... my husband and the CNA did all that at the end, though I've still seen parts of my in-laws I didn't WANT to see. LOL
Though taking care of my husband- when the time comes, will be quite different! I've seen him naked, so it won't be as bad, just heart breaking!
Knowing your spouse is going to die is such an odd feeling....I know I'll be ok but still I won't! I worry about stupid things like mowing the lawn or fixing stuff around the house or doing taxes! Stuff that he DOES and I want no part of, of course I can do them! I just don't want to 🙂
Sometimes I just want a drink and forget about it all, I do have one drink at night, but that's it...my parents were alcoholics when I was little, so I know I could probably fall into that too.
Life is hard!
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4 ReactionsTo suppiskey. I hope if, when, things get worse, I can be as strong as you !
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2 Reactions@lizzyj58
Good luck, tomorrow, sweetie! AND on Monday as well.
I'm still getting used to posting on this forum, so please forgive me if I've skipped over in how to private message someone. I really just wanted to let you know that I'll be thinking of you as you look at those results and again, in the room, when they give you their opinion on Monday.
Thinking of you, for sure!
Dawn
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4 Reactions