Hard Things...

My dad is getting worse.  His mind has become his own private island, upon which no one else may land.  He makes little to no sense anymore.  Rarely speaks, and when he does speak, it is either some weird amalgamation of words that do not go together or brief statements of fact that are also usually off when compared to the situation.

This isn’t new.  It has been an ongoing thing for the last eight years.  It has just gotten worse, pretty drastically recently.

I mean I knew it was coming.  I knew what was going to happen.  It isn’t like this is a surprise, and yet, it is.

I have long been trying to pre-feel things.  I think that somehow overthinking things way in advance can somehow prepare me, spare me from having to deal with the emotional fallout when the coming event arrives.  I guess I have some marginal success because, well, I am still doing it.

You cannot be prepared for dementia though.  It is a weird and tangled road.  There are so many peaks and valleys that you get lost with your loved on in the terrain.  I have watched my mom navigate it with him, me being only an outsider, looking into their private journey.  I help when I can, but there isn’t much I can do, mostly because I am me and he is him.  After a lifetime of mistrust and hard feelings going both ways, we both worked hard to reach this tentative peace we have achieved.  My ability to “jump in” is precarious and limited.

We are rounding another hard corner after the last eight years of multiple other hard corners.  There isn’t much we can do for him at this point.  Keep him safe, ensure he is well cared for and wait for the disease to do what it is going to do.  It has been a very long good bye, this is clear. 2,920 days, but who is counting?  My mom and I are, perhaps not a daily count, but those 2,920 + days have added up and she is exhausted from ever increasing care demands and increasingly bizarre behavior from him.

It is so strange how life changes course.  My dad was always a force to be reckoned with.  A slight man, but what he lacked in physical stature he made up for with intensity and emotional tirades.  He was both hilarious and fear producing.  And that was all underscored by a level of unpredictability that never allowed you to fully relax.  

There are just certain people in this life that just seem to lack the ability to make you feel safe in their presence.  My dad was one of those.  I don’t think he intended this to be the result you felt, it just was...

I have done a lot of work on this relationship with my dad.  And I think the fact we reached this level of peace and love with each other evinces the growth on both our parts.  I am going to take more credit here, because, well, I deserve it.  I have had to do a lot of healing around him and a lot of therapy and a lot of forgiving.  But in the end, well, at least the end as it appears now, I think he and I are good. We are clean.  He knows I love him and I know the same.

I think it is almost harder to let go of someone who you had a complicated relationship with...there are so many feelings, regrets, forgivenesses, it is a lot to sort through.

We are rounding into another hard decision.  And it will alter all of our everyday.  Huge changes that are not going to be easy but can and hopefully will make every day living easier for all.  Still, not easy thresholds to cross.

Living with someone with dementia, whose quantity of life seems never ending, while the quality of that life slips away a little more each day, is a special kind of hard.  My dad is loved, cared for, wants for nothing, but is also just sitting around waiting to die.  It is hard to participate in.  It is hard for me to watch my mom’s life be curtailed and truncated because of her dedication to his care.  I want something different for her, but I also do not want him to suffer or be hurt or in pain or not have all he needs.

I am clearly not in control and that is also as it should be, I suppose.  I am just here, doing my best to show up and be a sounding board for her and some very limited respite also.  I am so very grateful for all she has done for him and continues to do, but it is time for change to take over.  His care and mental decline scream for it.  And even though I know this is the best thing in this impossibly hard situation, it is still very hard.  For her.  For him.  For me.

I have always described grace as “unearned merit.”  Today, I am feeling like perhaps grace is something else. Perhaps grace is the granting of safe passage from one stage of life to another.  Perhaps grace looks like the ability to walk through hard things and not allowing them to crumble you to the floor.   I am not sure, but I think that is what grace feels like in this moment.

I am tired.  Which cannot even compare to what my mom must feel, her in the trenches with him every day, watching her husband of almost 58 years slip into some sort of mental beyond that we cannot ever know, and witnessing just breaks your heart a little more every day.

This is one of those times that I wish there was immediate Divine guidance.  For some reassurance that this next step is not only required but the kinder thing.  But since I doubt just about everything all the time, there is no particular peace with this next phase.  I just have to trust that what is best for one is what is best for all.  There will never be complete symmetry on the decisions about to be made.  It is an incongruent situation and there is no “right” here only “better” and “better”is not a truly knowable thing.  It is just a feeling, a fleeting feeling that you ride until the next phase achieved.  Right is something that you will only be capable of deciding long after the decision is made...

So I am asking for some grace, some kindness, some peace and some prayers.  It is a hard time for my family.  It is an awful situation from which there is no good solution.  We are not trying to make the right choice or even the better choice but we are attempting to make the choice that causes the least amount of damage for those involved.  It is not fun.  It is not easy and it is exhausting.

Again, still...