Let's Not Forget Our Caregivers

I am blessed beyond words in that my dear hubby has been here through the thick and thin of this chronic lyme mess and continues to care lovingly for both myself and the kids.  It's coming up on 5 years now and he has never given up.  Never hinted at throwing in the towel. 

This blog focuses on gratitude, and I have heaps of it for his hero husband of mine. I am also well aware that there are many suffering from chronic lyme and other chronic illnesses who are suffering alone.  This journey is too hard.  And my heart breaks for all of us, but especially those who are soldiering on alone. You are playing both rolls, caretaker and patient. I can only imagine the insane amounts of extra strength this takes. :(

Caring for someone sick, non-stop for years, takes a massive toll.  The rougher patches seem to come and go, but I can really see it in him this last month.  Christmas and New Years brings up a lot of tough feelings for those with chronic lyme and their families.  Memories of better times, hopes that this year will be better than before, hopes that in the future maybe life might go back to normal.  Hopes that can be dashed pretty quickly without all the extra stress, pressure and exhaustion at this time of year. It's devastating.

And never mind what the bitter cold weather does for our emotions!

DH and I have been forever hopeful and positive that we're going to get through this. From day one.  (In between the panicking. haha!)  I am healing. I will heal.  Life will be more okay again one day.  An okay life of course where I am really careful not to overdo it - there is no way ever I want to hit remission and then be knocked right back out of it by overworking myself or something like that.  But now, we're several years into this fight.  Things have improved.  But nowhere near enough for it not to be a little frightening.  Not better enough for me to consider basic Mom/wife/adult norm duties - like going back to work even part time.

What if it doesn't get better?

Physically, I don't want to think about that scenario.  Being in a state like this for the rest of my life.  I know deep down, after going through all of this nightmarish madness, that I could do it.  We could do it.  But I'm really not in the mood.  (Because that makes a difference... yaaaa.  Ha!)

Financially, (if we want to get pragmatic), it's terrifying.  Hubs and I have been through the budget literally (sigh) hundreds of times.  We should be able to sort of survive long-term.  If we do nothing, and buy nothing but meds and food. And if absolutely nothing else goes wrong or comes up as an emergency - ah ha ha ha... cause it never does in life, right?

Unsurprisingly, emotionally we're a train-wreck at this point.  So tired of keeping on keeping on.  I'm at my wits end just trying to get through each day physically, emotionally, spiritually... trying to be a Mom my kids want to remember having in their childhood vs Momzilla. He's not in a good state either.  Emotionally, but also physically because he does everything.  Cleaning, errands, dogs, kids, social events, holding down a job.  I'm not in bed all the time anymore.  I plan. I tidy!  I make meals here and there. But he never knows if I will be up to which tasks or if he'll be on the hook for even more chores when he gets home from work each day. How fun.

Emotionally and spiritually speaking, he's also a boy (or anatomically speaking??!).  Why don't they talk like us girls do???  How do they get the support they need? I'm here for him.  But he could use more.  I push him to go out with the guys for a beer when I can tell he is desperate for it (and yes, it would be better not to wait until he is desperate!).  But they talk sports.  Meaningless guy talk.  Which is great to help DH forget his normal life for awhile.  But not so great for receiving authentic empathy.

Came across this article yesterday and it of course was just perfectly timed for our troubles:
http://www.psychologytoday.com/blog/turning-straw-gold/201401/not-do-list-caregivers-the-chronically-ill

Shared it with DH and it resonated.  It became clear immediately that he is not NOT doing all this stuff on her list either.  Oops.  Shocker.

I know it's his life which he is the boss of. And he is very private.  I will continue to be open with him about this.  I'll continue to encourage him to go out with friends when he can.  (Difficult due to both budget and time, but we can prioritize it).  Maybe get him to share these thoughts with his family. 

Grateful beyond anything to have him in my life.  Wishing like crazy I could help ease his burden.

In the meantime, I will let compassion flood my heart... for all of us struggling to make it through.