2013.12.26

Christmas eve we went shopping. My wife tried on a lotion at T.J. Maxx and - lo! - her knuckles were all swollen! She ran from the store in a state of near panic. We rushed home and she spent the day looking at her swollen knuckles.

For the record, I couldn’t tell they were swollen. Not at all. Certainly, they weren’t the exact same size - I showed her my hands and explained that we are, none of us, perfectly symmetrical - and that seemed to calm her somewhat, however the majority of the day was spent agonizing over her “swollen” knuckles.

Same drill at night. She stayed up worrying about her knuckles until around midnight then dozed off until around six.

Christmas day, morning, she stood up fast and experienced vertigo. Also note we have both been dealing with head-colds and she had just complained her ears were “closed”. Anyway, Christmas was all about the vertigo. I explained that vertigo is common (I experience it often because I am tall) and having a head-cold would certainly account for it, but she still obsessed over it all day. We did go over to my brother’s for diner, and she did okay there, but she couldn’t sleep until around 1/1:30. Again, crying and wailing in the middle of the night for Jesus to save her from the vertigo. She did eventually sleep, but woke up at around 5/5:30.

NOTES: Holidays are hard. If it weren’t for my brother, they would be impossible. Mostly because we live lies upon lies. MW hasn’t had a full time job in decades. She has worked part time at various call centers from time to time, but she doesn’t have anything you could call a career. The story, however, is that she works full time in Human Resources. The story changes slightly over the years and I have to keep up the lie or else she’ll have a breakdown. This is another one of those areas - like taking medication - that is not open to conversation or debate. She lies about working and I tow that line.

She lies about her family relationships. Her immediate family can’t stand her. They don’t talk. Because of this, her father’s family also hates her. They don’t talk either. Her mother’s family is slightly more accepting - one cousin in particular does try to keep in touch - but on the whole they don’t express much interest. However, MW talks up her family as if they are a big part of her life (they are not). Because of this, my family thinks we spend all our vacation time with her family (we don’t).

The result is that most of our Thanksgivings, Christmases and New Years are spent alone, just the two of us, with me waiting desperately to get back to work so I can leave the house. This Thanksgiving my dinner was cold cereal and milk. Again, fortunately my brother does have us over for Christmas. Thank God for that. At least I have one connection I can rely on outside the office.

Slow days at work, the holidays, so I’m being somewhat indulgent with background information. I realize much of it sounds bitter and pathetic. And, well, yeah…. I am forty one years old and I am the sole caregiver of someone with Huntington’s disease. We haven’t been husband and wife for years now - it has been over a decade since we’ve had marital relations. We don’t even have conversations - I just react (hopefully positively) to her myriad complaints. Try to steer her away from “crazy” as best I can. The relationship between us is platonic and barren. She is not a wife, she is a responsibility. Were I to leave, she would not be able to survive on her own and she has no other family to help.

There is no cure for this. There is only management. And I’m all alone with that burden.

I’ve been through this before - with my mother-in-law - so I know how it goes. Ten or fifteen (maybe even twenty) years of isolation and sadness. In fact, we are worse off than my mother-in-law because she had children. Certainly they weren’t very useful, but they could at least be there. We have no-one. No one will visit MW once she becomes house-bound. I will be all she has. And I’ll have to keep a job as we don’t have enough money to support a house without my paycheck. So it’ll be down to either putting her in an assisted living facility or hiring in-home help. Either way it’s going to be a long road with my life compressed to work and hospice and nothing else. Indeed, I’m already there, except we can’t call it hospice yet. Right now it is all just work and the lies.