Where Does the Time Go?

Sometimes I don’t write because there really isn’t that much to say.  And I have been sad.  And I don’t like to only write depressing content.  Suffice to say, everything is status quo.  No new changes with Ron.  He spends his time in his hospital bed.  I walk him down the road in his wheelchair with the dogs when he feels up to it (the dogs are getting awesome at this).  He has good days and bad days and, lately, a lot of tired days.  We are both getting excited for his birthday party in 10 days and I think it will be a good turnout. 

I am amazed at where the time goes.  I struggle with not having a routine.  I think that is part of my time disorientation.  We don’t always get to sleep at a reasonable hour and if Ron doesn’t sleep well, I don’t sleep well.  I attend to his needs whenever he has one.  Bathroom needs are pretty urgent.  So, even if I am in the middle of something, for example, eggs that just started cooking on the stove, I have to stop what I am doing to get him out of bed and where he needs to go.  Food needs I never want to neglect, since he hardly eats anything.  So, even if it is 3 in the morning, if he wants me to go scoop out a bowl of sherbet for him, I do it.  I am not going to tell him to wait, because his appetite goes away so quickly.  Ron hates to be a bother and I hate him to worry about this.  But, with me putting all of his needs first, it really means that my own needs go by the wayside.  Like with the eggs - I sometimes feel like I shouldn’t try to cook for myself.  I have given up on trying to do yoga or have any semblance of a morning routine.  My routine is taking care of whatever Ron needs.  And Ron cannot predict or time out his needs, he has been so betrayed by his body.  It is really hard for both of us and a lot of responsibility for me.  Most days, I am okay with it; this is my choice.  But sometimes I get burned out and discouraged.  The last thing I ever want is for Ron to feel bad, so I am trying to be really mindful of not venting about how I feel to him.  Yet, since I am able to leave the house or see friends so rarely and have no time to talk on the phone, of course I do vent some of it to him; he tells me he wants me to be able to tell him how I am feeling.  We are really in an unfortunate predicament.  It is not his fault that he needs so much.  He doesn’t want this – he hates what has happened to his body.  I know that.

When I stopped working, I thought I would have all this time.  I imagined I would clean and fix up my house.  I saw myself gardening and writing letters to long lost friends.  I had all these craft projects I intended to get started and CD mixes for friends I thought I might finally finish.  I even thought I would start painting and writing again.  None of these things are happening.  I ask Ron, “Where does the time go?”  We stay busy with hospital and hospice appointments, sure, but he has had fewer visitors because he hasn’t felt up to seeing anyone lately.  I cannot seem to account for how little I seem to be accomplishing.  Ron points out that taking care of him takes up all of my time.  It does, and it doesn’t.  I have to be always nearby and on-call for his needs and therefore I don’t feel like I can get started with too many big, time-consuming projects.  I can’t leave him alone to go work in the yard, so unless he feels like it (and mostly he doesn’t), I don’t.  But attending to his actual needs probably takes an average of 20-30 minutes, about once every hour or two.  So, that is not all of my time, by far – I have the other time, in between when he needs me.  Maybe I am just not using time well.  I don’t know.  I get caught up in the daily tasks.  Everything seems monumental.  I feel exhausted all the time.  Maybe it has more to do with lack of energy than in actual time loss.  Maybe it also has to do with lack of space . . . like, emotional space . . . to start anything new or extra.  I can just do what I can do.  Ron needs 24 hour care.  I provide that.  It seems to be all I can do.  We don’t even seem to have time for the big conversations I anticipated we would have, or the moments of just enjoying one another.  I mean, we do that stuff sometimes, but far less than I thought when I envisioned this time together.

I leave the house for 6-9 hours (total) per week without Ron, broken into 2-3 episodes per week.  Those are the only times when I am not responsible for caring for him.  We have really nice volunteers that come on Tuesdays so I can go to therapy and go grocery shopping.  Every other Wednesday, I get to go ride horses for a couple hours.  And on Fridays I can leave to do something for myself or see a friend or run errands while his family is here with him.  I am grateful for all of this, truly.  Yet, it is not enough.  I feel like a selfish person for saying so, but I need more respite from being a 24/7 caregiver.  I really thought hospice would provide something like this, but since the volunteers cannot physically move Ron, even that is a tenuous and time-limited situation, and hospice doesn’t really provide any hands-on services for care.  The only solution is to increase the visits from family and friends who are willing to physically care for Ron, but this wears him out.  Additionally, he often does not make his needs known during the couple hours I am out  - whether out of embarrassment or knowing the volunteers cannot help him or thinking someone is not strong enough to lift him or just not wanting to be a bother.  So he just waits quietly until I return and can help him with whatever he needs.  Above all, I place his needs before mine, so I don’t want to put him in situations where he feels like he has to entertain or gets exhausted by too many people in and out of the house or has to go without having needs attended to.  I also often feel like I need to entertain and am exhausted by visitors, even just talking to them before and after I leave the house.  Sometimes, I find myself feeling angrier about the situation when they leave than I was before they arrived.  I have a lot of anger, I am realizing, and since I cannot escape the situation or fight it, I just swallow it and keep it in . . . until sometimes, about once a week, I go off on a verbal tirade that no one needs to hear (but poor Ron often does).  I feel like I am a terrible person.  I often hate myself for not being the perfect caregiver I have envisioned in my head – she never gets tired and can do it all and never complains.  I am such a far cry from that. 

I feel selfish for wanting or needing to get out of the house and away from the situation because Ron can’t escape the situation.  For him, there is no respite from cancer.  How dare I complain that I need more respite than I get?  He is dying.  It really doesn’t get any worse than that.  When I think about this, I try to suck it up and shut up.  And I cry because it is so sad that Ron is dying.  I still cannot get over that.  My heart is broken each and every day as I notice things . . . like his legs becoming more wobbly when I get him up to standing or yellow creeping in on the outsides of his eyes or new veins visible in his hollowed out face.  All of these serve as reminders of what I am losing, but more importantly than what I am losing, it is what Ron is losing.  I still get to live my life when this whole thing is over, no matter how sad it will be without him.  So what if I have to make some sacrifices right now?  Ron doesn’t get to choose to sacrifice anything.  His life is just being taken from him.  It is not fair and yet he handles his sadness with far more grace than I.

These are the ugly parts.  The pretty parts are, of course, how I love Ron and am honored to care for my husband and happy for all the moments we share.  I hate to talk about the ugly parts, but they exist.  Anyone who has gone through something like this knows what I am talking about.  And I want to talk about it to prepare anyone who will go through something like this in the future - you wind up hating yourself in the end, no matter how hard you try to be and do everything.  I need more grace.  I need to be more selfless.  I am hyper critical of all the ways I screw up each day.  My therapist pointed out that I am focusing on this – the ways I am not doing enough – rather than on all the ways I am doing so much more than what many people would do.  She always wants me to be kinder to myself.  What can I say?  I am my own worst enemy.

Because I don’t have time or energy to spare and because I am 99% certain I would be denied again anyways, I have made the choice not to appeal the denial on my short term disability claim.  It feels good to have made a decision about this . . . to have one less worry to attend to.  I just cannot fight that fight.  I don’t have it in me and I don’t think it would go anywhere, anyway.  Of course, this means financial worries remain looming.  But, we have already received a great deal of support from friends who have sent us checks and gift cards and made themselves available for however we need them.  I remain confident that we will be able to get through this time, for how ever long we need to, with the savings we have and support from our community . . . and if and when that all runs out, we will figure something else out.