Monday, March 04, 2013

When Did I Become Responsible?

Sorry I've been a way for a while.  Life has been busy, and I just haven't been able to find the time (or frankly, the motivation) to write.  You probably needed a break from the sad story of my dementia-addled mom anyway because, yes, that's yet again the subject of today's post.

Jonah and I went back to Utah a week ago to take care of some legal and house matters involving my mom.  For once, I was actually grateful that the two of us were unemployed so we could take the trip down together.

Legally, essentially what we are doing is moving all of Mom's assets (except for her monthly Social Security check) into a new trust so that some of her assets can theoretically be saved.  Basically, it's a loophole that gives the trust ownership over her assets so that when she applies for Medicaid, the only money she will have in her own account is her monthly Social Security check, which is good since the state only allows a person to have less than $2,000 to qualify for Medicaid and only leaves the recipient with $45 a month to use for things Medicaid and Medicare don't cover such as regular dental care, vision care, podiatry care, and getting her hair done, for example.  Just another example of how our broken health care system bleeds the infirm and ill dry and leaves them with little dignity.

Of course, the downside is that gifting one's assets before applying for Medicaid carries a penalty.  Essentially, Mom's lawyer will apply for state aid now knowing full well that she will be denied and penalized for gifting all of her assets to the trust.  The penalty period is approximately four years, during which time we use Mom's assets, which will be in this new trust, to pay for her care.  Once the penalty period is over, Mom's lawyer will help her reapply for Medicaid, and because she, herself, will not make enough through Social Security to be denied, she should theoretically be approved, and the assets in the trust can be used to pay for those things Medicare and Medicaid don't cover, and possibly there may even be some money remaining after she dies, which is what should would have wanted.

Frankly, I don't care if there's any money left over after her death (well, except to cover funeral and death expenses); I just want my mom taken care of in this life.

Much of the success of this plan depends on selling her house because that is where the bulk of the money used to pay for her care during the penalty period will come from.  We should have enough from other assets to last 8-10 months, and we're sure we can sell her house in that amount of time.  I sure hope so anyway.  It's a nice house in a good area, and our appraiser actually valued it higher than we were expecting, so we hope we can get what it's worth.

Here's the big kicker: I am now sole trustee over the new trust that his been created, and I am sole power-of-attorney for my mom.  This carries an enormous amount of power and responsibility, neither of which I take lightly.

I am a responsible person, but I never would have imagined myself in this position.  Somehow I always thought my brother would be the one to deal with these sorts of things.  He's always been good with finances and has always struck me as level-headed and responsible.  I've always struck myself as the kid who never quite grew up.  I think that's part of why I'm an actor.

I have often been selfish in my life and freely admit I am lazy.  I would much rather play than work.  I have ambitions but rarely enough motivation to do anything about them.  I've always kind of lived my life in a "go-with-the-flow" manner rather than having concrete plans about how to get where I desire to go.  I tend to be more of a dreamer than a doer.  Certainly I have done many great things in both my personal life and career, but I've always felt I could have been capable of more if I had really put my mind to it.  Instead, I feel like much of my fortune, which I am truly grateful for, has often resulted more from happenstance than massive effort on my part.

I think my relationship with Jonah and Mom's illness have caused me to grow up more.  Mom's dementia, in particular, has really forced me to be more of a take charge kind of guy, which really is contrary to my personality.  The irony is I often have felt stymied in taking charge of some of the aspects in my own life, but somehow my love and devotion for my mother have caused me to take charge in hers.

The stress of dealing with Mom's affairs was too much for my brother.  This surprised me, actually.  His health was being adversely affected, and he asked me if I would be in charge.  My older sister didn't want the responsibility nor did any of us feel it would be wise for Mom's money to be near my brother-in-law, whose financial record hasn't been very great, partly because of troubles with his ex-wife.  My younger sister probably wouldn't feel comfortable taking the responsibility.  In any case, I am in charge.

I actually don't mind and, unlike my brother, I don't feel terribly stressed by any of it.  Perhaps I will later.  But I sleep well, and I try to manage Mom's affairs as best I can.  It does take some time and work to handle it, but I feel like I'm doing okay, and hopefully, in the long run, this will help her and us.

I do worry about what will happen if her health declines further or if she has to be moved to another facility, but I figure I'll cross those bridges when I get to them.

I have been particularly been saddened by how hard this has been for Mom.  She so wants to go home, even though she won't likely recognize her home anymore.   She feels so sad and lonely even though we visit her.  I call her every single day.  She complains that she's bored and lonely, but also makes little effort to participate or be social.  She also has a poor concept of time and a poor memory, which gives her the illusion that no one visits her or that they haven't visited her in a very long time.

Jonah and I tried redirecting her a lot while we were there.  It is almost like how you'd behave with a kid, making them forget that just bonked their head by distracting them with something else.  And that's another frustrating thing; Mom can be so childish in her behavior.  I'm truly glad there are two security doors at the place she's at because I know she would try to escape otherwise.

The time not spent with Mom or taking care of legal matters was spent going through old papers and photos of Mom's.  It was bittersweet.  Mom's house is a shell of its former self.  Furniture and donations and trash and things to sell are all placed in different rooms.  Mom's room is almost completely empty except for a chair, a vacuum, and a garbage can.  Going through Mom's stuff...selling her stuff...selling her house...spending her hard-earned money on a place she doesn't even want to be - it just feels wrong and unfair.  But it is what it is, and Mom is safer and healthier where she is.  But sadder, too.  And that makes me sad.

Jonah has been great through all this - very supportive and understanding.  I know it must get old.  And I am still is state of mourning, I suppose.  I've become almost obsessive about Mom - reading her journals...looking at old photos...preoccupying myself with her legal matters...calling her every day.  I had to take a break.  I do feel I need to call every day.  I don't want her to forget me...and she could.  But I have taken a step back from some of the other things.

I've been fortunate that some freelance writing work came my way, and I've been busy with that.  I also think I may be close to getting hired for a job here.  The company had me do two interviews and asked me to take a drug test, so I feel those are good signs.  It's an on call job, but it has the potential to turn into something more permanent.  It is theatre-related, but not acting, and somehow I seem to be okay with that.  I've had a very successful and wonderful career as an actor, and I certainly do not intend to give up that career.  But I do long for something a bit more secure.  Some days I feel like I'm getting too old for the transient, "feast-or-famine," "always-trying-to-hustle-for-the-next-job" lifestyle that an acting career is.  Maybe I am indeed growing up.  I also just want to be here with Jonah for a while.

Jonah was offered an on call position, too, but it could be very good money when he works.  He's also doing a temporary gig doing costume construction.  Anyway, after a long period of unemployment, I'm hoping things are picking up for both of us.

Well, I'm pretty wiped out.  I'm off to bed.

Oh, the very last photo I found at Mom's house (and the one I had been looking for without success) was this one taken of her at a conference President David O. Mckay presided over.

Mom is fifth from the left on the back row (with the "x" above her).  David O. McKay is on stand above and between the two men standing on the right.  I always thought it was a cool picture.  So Glad I found it.


Miguel said...

I think you've been responsible all along, life is just forcing you to look at it in a more restricted way, deep down you should still take it on with the "dance in the rain barefooted" attitude and then dry your feet and get back to the serious stuff as needed. Thanks for sharing.

LCannon said...

you have grown . . . a lot. You surpassed me, Bro - probably when you came out and turned your life around and made yourself happy. That's when you became responsible. Kind of symbolic, huh?

Dean Scott said...

My dad told me when I was in my 30s that he was concerned about me being "too responsible." He said I should have loosened up a bit.

I feel for you. I am glad you and Jonah have each other. I send my continued prayers and best wishes.

Gay LDS Actor said...

Thanks for your comments, all. As always, I appreciate them.