Rheumatoid Arthritis Support Group
Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...
I spoke today at a state agriculture conference.
I'd spoken there ten yars ago about being a second-career farmer and the challenges involved in the midlife career switch - sort of an encouraging talk for people who might be considering a similar path. It went well, and I was invited to return in ten years - this year - for what we all assumed would be an even more upbeat, optimistic report of continued successes.
After my diagnosis a few years ago I really had to restructure the entire farm to reflect my new reality. It has - duh - been a challenge, but I have managed to get back to the same income level with far less physical and mental stress. Some of the changes I made were necessary disappointments and some were actually things I might have done anyway as I got older.
So I couldn't go talk about how things had expanded or improved as I'd originally planned. But I spoke for ninety minutes about how you pick yourself up after things go all to hell - which can happen because of a diagnosis, or a loved one's illness, or an accident, or many many other things. I talked about resilience and needing to be honest and humble and the pointlessness of looking backward with regret - learn whatever lessons you need to and then move on.
It was actually a better talk than the fairy-tale one that had been rattling around in my head in the ten years since my first presentation.
I kept people laughing, which was no mean feat given that my basic premise, after all, was hey we're all gonna die but we might go downhill before we do and we oughta be thinking about contingency plans.
Two points I want to make here: one, the courage and humor and resilience I've seen on this site since my diagnosis definitely informed my presentation today. Thank you for that.
Second, based on the response to today's talk, this is something people need to hear, regardless of their profession. In the half hour discussion after my talk, people spoke of realizing they were in denial about aging and the bell curve of physical strength (it's a common problem for farmers to consider themselves invincible). I think there are many people here who could have delivered the kind of talk I did today. I found the prep work for the presentation to be both challenging and healing for me, and i'm going to accept some of the invitations I received today to go elsewhere with the same message. Have you thought about doing something like this? Because you could do it.
As sucky as this whole disease is, there is definitely something good that we have to offer other people from our experience. Give it a thought.
The 'no' thing might not even mean no, as you're probably realizing. I have a husband who doesn't talk much, and I know what you're saying about just making assumptions - I probably say "Use your words" to him as often as I did with the kids and the grandkids, trying to get him to give me feedback on, well, anything. So yes, you and I make assumptions based on what we think they want. They don't give us an alternative. We do our best.
For my mother, regaining speech was enormously frustrating, and it would sometimes explode into 'no' or in some memorable cases, 'no' accompanied by really serious cussing. And this from a woman who wore white gloves to the grocery store and never even said "damn' as far as we knew. Who knows what brain circuitry was realigned by that stroke. Sometimes in the early stages, where you are now, 'no' meant "I'm so frustrated that I can't communicate clearly' and not really "No, I don't want soup for lunch today."
The best suggestion I can give you is to allow yourself to grieve for the pre-stroke husband. The loss of that person may be temporary, because treatment is now lightyears better than it was when Mom had her first stroke in 1985. Sadly, some parts of the loss may be permanent, and of course one great frustration here is that it will simply take time to figure it all out. But you will begin to find firmer footing in your new reality once you let yourself grieve (and be angry, and all the component parts) for the lost bits.
Once you start that process, you can begin to get acquainted with the post-stroke spouse, who will have some parts of the pre-stroke person, and some new parts. Some of those new bits can actually be kind of awesome. In my mother's case, it manifested as letting go of decades of societally reinforced inhibitions. Post stroke Mom spoke her mind, and it was actually a pretty fascinating one. There was an intense, passionate person inside pre-stroke Mom that we could have never met.
Her total disability was tragic, but in the three years between her stroke and my father's death, it allowed them to find a genuine connection - he'd been disabled all along, and it often frustrated her, and he had never felt that she understood. And conversely, he didn't understand what caring for a disabled spouse actually meant (they were both masters of non-communication). After her stroke, their roles were reversed. He finally had to step up and be the grownup in the relationship, something he had never been allowed to do - everyone just 'took care' of him, and, I think, unintentionally demeaned him in the process.
Your situation is not the same as theirs, but you may find, going forward, that you have previously unsuspected strengths that come into their own now. Your relationship will not be the same going forward, but.........sometimes the changes can be positive ones, once you get beyond the enormous logistical changes.
I'm sure you're familiar with the Serenity Prayer, and this sure falls into the 'accept the things you cannot change' category, in the sense that there is no magic wand to unstroke a stroke, and this is in fact our new reality. But it's one that's till very fluid. You'll see improvements literally for years. Some of them might seem tiny, but when you're in the trenches, even the tiny ones can be enormous (I'm thinking of the point when Mom could wipe her own butt again. I went out and bought champagne and we both got a little silly celebrating.)
You can do this, because you don't have a choice. But with some deep breaths and thought and prayer, you can do it in a way that doesn't totally deplete you. Please keep writing and let us know how things are going. The forum and this whole site seem to be fizzling, but I'll keep checking. Hugs.
After my Mom's massive stroke, my sister and I dealt with things in different ways, and I do not mean to imply mine was better. N. kept thinking Mom would make a total recovery if she just believed enough, and thus, every single visit was a tragedy requiring an intense emotional reaction. N. felt little losses every single time she visited. I sort of took the opposite approach and dealt with it as if I had experienced an actual loss, and in many ways I had. The vibrant person who'd hiked ten miles on the Appalachian trail with me on Sunday left for good on Monday when that damn aneurysm burst, and there was a different Mom there after that point. I think I allowed myself to grieve for the Mom that was gone forever, while still retaining of course some hope that things would improve somewhat for her, but it was a massive stroke, and it was (good heavens) thirty five years ago, and both the initial care and the rehab process have made enormous strides since then. So your experience may be very different.
Still, you can't un-pop a balloon, and this is one of those situations where the 'after' is different from the 'before' pretty much no matter how much recovery there is. The 'after' can still be pretty good, but if, like my sister, you're constantly mourning the 'before', it's going to be rough on you both. Like all of us, your husband would have experienced age-related changes in the next decades anyway, and you would have dealt with them, because they'd be gradual. This is kind of a crash course in coping, and it's really hard.
Your autistic son's rigidity about things sure complicates life. But you're 41 years into that, and you know him as well as anyone ever will, so there's that. Just try not to have your medical crises on a Saturday (sigh!). And hopefully his innocence, like that of a six year old, can be a balm to you as well.
It's a tough thing to do, but you're going to need to ask for, and accept help, and do so without guilt. Please be sure that you allow yourself to (insert appropriate thing here) get a nice haircut or spend an afternoon in a coffeeshop with friends occasionally or whatever. It can be so hard to manage the logistics, and the coronavirus uncertainty adds to the complications. You can't pour tea from an empty teapot. You need to protect yourself as fiercely as you advocate for your husband and son. Use the Social Services that are available, or tap into your church or other local groups, or hire someone if you can manage that for some relief. You are worth that.
Your other son has, to the extent I've described above, lost his father, as you know, Dad 1.0 isn't there any more, and he too is going to have to adjust to Dad 2.0. He's also got the added craziness that can come from wondering if there's a hereditary aspect to this. Guaranteed he has already calculated how many years he has until he reaches the age your husband was when he stroked. (I just celebrated passing that point a few months ago - I knew to the day that Mom was 59 years, four months and nine days old when she stroked, and I knew when the corresponding day was for me, and even though the specific date is meaningless it was still a huge relief to pass that date.)
And he and his spouse, if he's married, have probably had a tough conversation, because they're already assuming they'll have some responsibility for your autistic son at some point, and now they're thinking omigod, what if Mom and Dad are both disabled too, and so on. It's a realistic thing, not a selfish one, and he'll need some help with working through that. His reluctance to be helpful now might in some way be the equivalent of him thinking that inevitably, this may one day control his whole life, and he wants to postpone that as long as possible. You'll need to have a Mom-talk with him when you're ready. But do that on your own timetable, when it feels right.
Our situations are different, but when Mom stroked Dad was already a medical mess and had major addictive and bipolar issues, my college-age sister had an emergency partial hysterectomy for reasons that were hard to untangle, my husband developed a bile duct infection that was not diagnosed for years but left him too depressed to get out of the fetal position in bed, and my then six-year-old chose that moment to break his leg in a manner that required several followup surgeries. (I remember at one point looking at the OTHER kid, who was four, and saying "just don't. Just don't add to this', and I've always been grateful that at least one family member had a calm couple of years.)
When I'd got o bed at night, I'd ask myself: did they all eat? Were they wearing clothes? Did I refrain from strangling anyone? Were my clothes rightside out today? And if so, I called it a win. Lower the bar for now. It will give you more days in the win column.
And keep writing here. It's a good safe place. Hugs.,