Connect
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!
Like
Helpful
HugInterested in more discussions like this? Go to the Caregivers Support Group.
Connect
@suppiskey2surv Oh thank you so much! Very frightened about what we will hear. I will let you know the diagnosis.
-
Like -
Helpful -
Hug
2 Reactions@lizzyj58
Only if you can do that without making me another chore, on top of everything else you're dealing with.
Thinking of you!
-
Like -
Helpful -
Hug
4 Reactions@suppiskey2surv scan is over, results should be available in 24 hrs. Thank you for keeping in touch with me.
-
Like -
Helpful -
Hug
1 ReactionNo problem, my friend. So, now, we wait.
Sending you both much hope for good news Monday.
Thinking of you.
-
Like -
Helpful -
Hug
4 ReactionsI too have been an on and off caregiver for 20+ years. From 5 major joint replacements to battling cancer during COVID and could list more. It can be a lonely life with so many challenges. It gives me comfort to know someone else faces similar challenges so thank you!
-
Like -
Helpful -
Hug
4 Reactions@oaapae
You know . . . . as one ages, it's unfortunately expected that a person will face many, many health challenges. Just part of getting old, I suppose. Yet, when one of two involved in a relationship has repeated health issues that can be linked to one that keeps resurfacing as either the reason or as a contributing factor . . . especially, when that person was misdiagnosed from the get go, it's really hard not to start blaming someone in a system that will even admit to your face they have to "word things carefully" to gain coverage for a test or procedure that could identify the reason your lives are being torn apart, OR within a system that shrouds itself in protections against being held accountable and one that leaves you having to make up for their mistakes or deliberate dismissal of a person's unique or "rare" circumstances. We have been soooooo disrespected and misguided at the local level where we live over the years. Seeking and finding proper care hasn't been easy, especially when you're put in that "rare" category. MAYO has been such a different experience for us; and for that, we are grateful. Nothing is perfect. That's for certain; but, at least we're both in a better place than we were years ago when all this started. AND, we've come to learn a great deal about each other through this process, as well as just how hard it is to walk that line between advocating for yourself with respect and diplomacy. Do what you have to do. Say what you have to say and leave the tears and blubbering for your trip home. AND, if you need to become what some would term as a "you know what", well, then GOSH DARN IT, that is what you just need to do!
Best wishes for good health! Thanks for taking the time to comment!
-
Like -
Helpful -
Hug
3 Reactions@lizzyj58
I don't seem to be able to private message yet. But I wanted to let you know that I hope those results will be encouraging. You had said you were going to find out the direction you're going to be taking today.
Hope you find out something good.
Thinking of you 😘
-
Like -
Helpful -
Hug
3 Reactions@suppiskey2surv YOU are a warrior! I think all of us here are! We didn’t know how strong we were until we had to fight for our loved ones. There may have been options for us to choose an easier road, but we chose to stand up and take the hard one, and we WILL persevere! We will also cry in dark and feel we can’t go on. We know how to fight back the fear and keep putting one foot in front of the other until it ebbs.
-
Like -
Helpful -
Hug
3 Reactions@janna2 I suppose we don't know how strong we are until we're put to the test of having a loved one with cancer. It's such a scary time and support from this site helps.
-
Like -
Helpful -
Hug
2 Reactions@janna2
You put that so eloquently, my friend!
-
Like -
Helpful -
Hug
1 Reaction