Thursday, February 28, 2013 Heaven

If one more person tells me how blessed I'm going to be at some future date, I think I might cuss. Honest.

Look, I get that people think that what I'm doing is some kind of martyrdom thing. It ain't.
I get that people think that what I'm doing ensures that I'll be blessed for forfeiting various things in favor of caring for my mother but I'm not entirely sure that I agree.

When you add to that (my uncertainty about the truth of these future blessings) the fact that on any given day there's some need that I have that I cannot fill, you'll forgive me if I cuss the next time I hear how blessed I will be either in Heaven or when I'm 102.

Spilt milk

For many years, I was a negative girl. I couldn't see how the future would be better. Then something happened. I started making a concerted effort to be more positive and the next thing I knew, I was thinking positive. I recently posted some old pictures of myself from my heyday when I felt that I could conquer the future. But the future that girl envisioned has not come to be. I don't cry, but if I were a crier, I would weep copious tears and heave with gut wrenching sobs. Fortunately, I don't cry. Tears, split milk and all that.

The worst thing about this experience is that I have to fight constantly to stay positive. Well today, I give up. Staying positive in the face of the insanity that my life has become, is itself, a kind of insanity. I worry now that the constant hits that I take - six emails this week about crap that I'd already worked out; the back and forth with my attorney about first one thing, and then another, and then another and then yet another; back and forth with the bank now because I'm locked out of the online system - I worry that all this will break my own mind in much the way my mother's mind has been broken.

How does one protect oneself? I have bad family history (and bad genes potentially) and a sh*tload of stress on my side. Working in apposition to those factors, I have my faith, my writing, my FB venting, my singing. The question is though: is it enough? Will it suffice to insulate my brain against invasion by plaque?

Your guess is as good as mine. But this day, this day, I feel like "Why bother?". I give up. This day, I feel like the milk hasn't spilled, it's being POURED out......all over my damn head.

Friday, February 8, 2013

Broken is the tree

Alzheimer's Disease is a storm that comes ashore bringing hurricane force winds. Bend or be broken. Them's the rules: bend or be broken. Broken is the tree that will not bend when the wind blows. (Run over, as I said yesterday, is the dancer who does not change her steps when the music changes.)

I imagine that it is possible to care for a dementia/Alzheimer's patient at home, but the things that would need to apply simply don't apply in my household. For one thing, there would have to be a whole lot more hands on deck. When my Granny was in the last phase of her life, she was nursed at home. The big difference there was that she had three children who participated fully in that care. Granny had a fourth child, but Lord Fauntleroy came by infrequently and usually drunk when he did show. Obviously, he wasn't much help. Granny also had four grandchildren, two of whom were local. There was also a housekeeper, a daytime nurse's aid and an afternoon companion. And still, towards the very end, the stress and work of it left me (one of seven people charged with her care) with dangerously low blood pressure.

Even with all those folks involved intimately with the process of dying, we were all still exhausted. Imagine then my situation now where I'm doing the lion's share of the work here; all of the work related to Mummy's affairs in Trinidad and trying to pretend all the while that the current division of labor is not a source of some significant anger. But even that I'm working on. I can't say I'm making a whole lot of progress, but I'm working on it.

A long time ago, I gave up the anger towards my mother. There's no point to it. Barbs was a bad parent. Deal with it. She showed little love or affection. Deal with that too. When I say that she was a 'pragmatic parent' as I did in an earlier blog entry, that's my nice way of saying she was emotionally withholding. Deal. With. It.

The great challenge of managing AD is that there is no opportunity to fix the broken places of the parent-child relationship. Ah well, gotta deal with that too. The other great challenge is figuring out how you want to be as a caregiver, especially if the parent-child relationship was unhealthy. I have said in the past that I want to give her what she didn't and I believe, couldn't, give me. I have done the best I can with that. Broken, you see, is the tree that will not bend. I could stand firm and resolute and be to her as she was to me. Who would that hurt more? I would punish her for being less than I needed, and scar me for being less than I could. 

I have chosen to bend. I have little residual anger at my mother for her failings as a parent. It has become evident to me that her challenges exceeded her capacity. She did the best she could, like her father before her; like the husband she chose. They all did the best they could. That what they did was insufficient unto my needs isn't really anyone's fault per se, it's just how it is.

I must bend or be broken. I treat her with all the kindness I can, all the gentleness I can. If I can't sit and chat with her the way another mother's child might, then I bring in a caregiver to engage with her in that way. (There are many things that I can do, manufacturing relationship at this stage of the game is not one of them I fear.)

Bend or be broken. Bend or be broken. It's my mantra. Bend or be broken. And when all is said and done, I will be able to say that I let this most horrific of experiences change me. In a good way.

Bent but never broken.

Wednesday, February 6, 2013

A new dance

I have a suspicion that I'll be retiring this blog this year. No, it's not that I expect my mother's journey to end, but rather, it seems my fulltime caregiving will transition to a different relationship as I've decided to find a facility into which Barbs can be moved.

This choice is not made easily, rather, it's made upon reflection on my life. It is clear to me that I'm getting all the help I'm going to from my sibling, leaving me toting some heavy bags. It is also clear to me that my needs, professional, personal and medical are getting very short shrift in this set up. This is not unusual in this setting but I don't like it and have determined that I have to stop it. (Of course, going to the doctor and hearing that my unmanaged condition needs to be managed, might have helped with that particular epiphany.) And finally, I've realized that there is no way for me to go back to work any time soon while giving care of any kind. It simply isn't possible. I've tried it and ended up experiencing severe dizzy spells within two weeks of starting the job. Not good.

Having finally realized these things (you would think I'd have figured some of this stuff sooner), my new plan of action is to put myself first. I finally got the memo that no one else would. It's time for me to be emancipated. The last thing I want or need, is to be sacrificed on the altar of caregiving. There is no coming back from being a sacrificial lamb, not so far as I know at any rate. If there is, I don't know what it is and I'd rather not find out later that there really isn't a way back. Who knows what will apply 'later'? Will I be physically well enough to work at the level that I want to work at? Will I be mentally agile enough to work at the level I prefer to work at? The time is now. I'm fresh, I'm able, I'm healthy, I'm making a move.

One other thing: my housing advisor, the young woman who is providing us with housing options to review, was quite surprised when I advised her that Barbs had an LTC plan. We had already talked about her age, so Katie (the advisor), knew that Mummy is in her upper 70s. It's fairly rare for someone that age to have such a policy. I know. I've seen the uptake rates on LTC policies and they ain't good generally (less than 3%). So once again I say, beating my old drum, go get you some LTC coverage. Yes, the policies have lifetime maximums; yes, the older you are the more expensive the premium; yes, it's possible that you'll pay for the policy and never need it, but there's also a possibility that you will. If you do take that fall, you want there to be something to cushion your landing. Trust me on that. In Mummy's case, the premium was less than $200 per month. The coverage pays just shy of $200 A DAY for residential care. You do the math. That policy, makes it possible for me to make the decision to get Mummy into care and get myself back into the mainstream of life. That LTC policy is my 'Get out of Jail Free' card.

So there you have it. I'll write and report on the quest for acceptable digs for Mummy. I have to say that when this year started, this is NOT where I expected it to go, but when the music changes, you either change your dance steps or get run over on the dance floor.

It's time for a new dance my friends. Time for a new dance.