More Grace, Please

Lessons learned over the past few days: 

1)   It is a bummer to get a little head cold on any given day.

2)   It is more of a bummer to get a cold when you are having a week of 70+ degree temperatures in Michigan in mid-March and not be able to do as much as you want to outside. 

3)   It is even more of a bummer to get a cold when you are responsible for taking care of another person and still have to rise to the occasion even when feeling crappy yourself. 

4)   It is infinitely more of a bummer than that to get a head cold on top of already having a body that is fighting off cancer – at least this is what I surmise from Ron.

We are both sick, though he, obviously, has it much worse than I do.  We had a few different guests last week/weekend who came over when they thought they might have been a little bit sick.  There is no way to know if we got the cold from them, or from going to the hospital (all hospitals being known germ-fests) on Monday for Ron’s usual paracentesis, or even if it was from something else entirely.  It could possibly be the weather change and/or allergies getting to us, but this seems less likely since we both got it at the same time with the same symptoms and I am not known to suffer from allergies. 

At any rate, this makes us think twice about making any exceptions for folks to visit when they are feeling under the weather.  We again want to remind all visitors that you really should not come into the house if you think you may be ill.  Additionally, we will start to implement some hand washing/sanitizing procedures when folks first come in, just to make sure no one is carrying any bugs from the outside that could pose a threat to Ron’s weakened immune system.  Saying this again makes me feel like some kind of rule-bound tyrant, but my number one priority is keeping Ron as healthy as can be.  If that means treating everyone who enters as a potential germ-carrier, so be it.  And, that being said, Ron and I will both do a better job of sanitizing when we are out in public.  We just can’t take any chances.

Before we got sick, Ron and I made use of the awesome weather to drive over to Grand Rapids and go to the John Ball Zoo.  He had never been there before, so we decided that if he felt up to it on Wednesday (giving him a day to recover from the hospital trip) we would go.  I was so glad when it worked out.  He got a shower, ate some McDonald’s on the way, and enjoyed some tunes while we cruised the freeway.  (I feely admit that I derive enjoyment from getting Ron out of his hospital bed and back into the world.)  We met up with our Wheatland friends and spent a little over an hour enjoying the zoo.  Ron’s favorites were the bears, who were shaggy and lolling about on logs.  My favorite was the sloth, who moved his head and stuck his tongue out just a little, which is a lot of movement for a sloth.  After the zoo, Ron said he felt up for hanging out a little longer, so we found an outside deck where we could chat and enjoy beer (water with lemon for Ron).  How nice to be out in the world, spending time with friends in the evening sunshine in March!  After a little while, Ron knew it was time to head home (he is getting better about listening to his body), so we made for the car and I took the back way, which is all winding roads and hills and lakes and trees.

Then, Thursday, we both woke up feeling, to use my mom’s word, punky – head congestion, runny noses, sore throats, coughing, etc.  Neither of us did much all day and Ron needed a little more help with things than he has been.  Sometime in the night, he called for me to come down and pat him on the back.  He had been trying to cough, but lacks the space in his abdomen (because of the tumors) for his diaphragm to work right.  He was congested in his chest and couldn’t get it loosened.  I gave him a soft pat on his bony back.  He told me he needed it to be harder, so I placed one arm across his chest to hold him steady, like you would a child, and patted harder.  He told me that was the right strength, but it hurt because there is no flesh there to protect his bones.  So, I used a small throw pillow as a buffer and kept patting harder.  He never produced any mucus, but said he felt better and was able to go back to sleep. 

Friday morning, he woke up really late and felt much worse.  He didn’t even want to smoke, which is rare for Ron.  Finally, he did go out to smoke around noon.  He didn’t come in and when I went out to find him, the cigarette was stubbed out, still about ¾ unsmoked.  I asked him what was up and he said he didn’t feel right.  He stood up very slowly and on wobbly legs used his walker to navigate the dozen or so paces from the front porch to his bed.  He told me there would be no showering, as we had planned.  I asked whether he was able to go for his scheduled paracentesis and he said he didn’t know and I knew something was wrong.  He has never declined paracentesis before; I think he kind of likes seeing all the staff at Borgess, especially since they gave us a surprise congratulatory party for our wedding.  But this time, he was tearful and said he knew he just needed to be in the hospital bed.  He couldn’t pinpoint what it was exactly, but said something felt very off.  Ron almost never complains about anything, so the fact that he was acknowledging something wrong frightened me.  I called his hospice nurse, Pam.

Ron said he felt extremely weak and dizzy, like he might pass out.  I relayed this to Pam, who said to put his oxygen on, which we did.  She said she would come see him and to go ahead and cancel the hospital trip, since he shouldn’t be leaving the house when he feels dizzy.  The oxygen did help Ron to feel better.  When Pam arrived, all of his vital signs were normal, but when she listened to his chest, which had been clear on Tuesday, she said she could hear fluid in his lungs.  She listened to our theory that we both have a cold and said she would have an antibiotic called in for him to fight off infection.  If I don’t recover from my cold, I will need to go to the doctor and get on one, too, so that I don’t stay sick and make Ron sick again.  Pam said we needed to rest for the weekend and try as much as possible not to have visitors or go anywhere.  In other words: quarantined. 

Pam said there is one other possibility about the fluid in Ron’s lungs.  It is one we don’t like to think about, but it is real and therefore needs to be spoken to.  She said his lungs could be filling up because his body is failing him.  She said this could very likely be how it happens – that systems start failing and he becomes increasingly tired and weak and just fades away and dies.  However, because I am also sick and we had sick visitors, we are all hopeful that it is just a cold that can be cured and now is not his time.  It’s scary, heavy stuff to talk about, but good to be informed.  This is one of the benefits of hospice – they tell you like it is (when you need to know) and don’t sugarcoat.

Saturday, Ron woke up feeling better, so he thinks the antibiotics are working.  He spent a couple hours in his wheelchair on the back deck, listening to a book on his iPod and enjoying the weather.  I also felt a little better, but was super restless knowing we needed to stay put while having the weather be so nice and having my neighbors all outside working on their lawns when I have so much to do on mine.  We stayed quarantined, but I did not really rest.  I had to be busy.  I walked the dogs (twice), washed Ron’s bedding while he was outside, did three other loads of laundry, vacuumed, mopped and cleaned the kitchen, washed mold off the slider door, washed the dogs, washed my car, and moved some dirt around in my yard, repairing what damage the snow plow did.  I was a busy-body, but it still did not seem like enough.  I feel guilty because my yard is a 2 acre mess of sticks and leaves and my neighbors are out cleaning and mowing their yards and I feel like I should be doing the same.  But I also know my wheelbarrow has a deflated tire, mice chewed through the cords in my air compressor (needed to inflate the tire), and mice also chewed through the cords in my lawn mower so it won’t run, plus it has flat front tires.  Essentially, I just get overwhelmed with all the stuff I have to fix and buy to even begin the big spring clean-up.  Plus, I am a little sick myself and also had to take care of what Ron needed, so my busy-bodying around the house ended up being all I could do yesterday.  The rest will have to wait.

And I know it can wait.  I know I have a friend who has promised to bring her sons over to help with sticks and lawn debris when we are up for having people out to the house.  I plan to call a local guy to see how much it will cost for him to fix my lawn mower.  I can probably use a neighbor’s air compressor for the tires.  I have solutions.  I just have to find time to implement them.  Finding that time is hard on top of everything else I am doing to take care of Ron, who is pretty hands-on now.  I can’t imagine working on top of all of this busy and overwhelming stuff, so I thank my lucky stars that my employers have been supportive and flexible enough to allow me this time to just care for Ron.  I tell myself all the yard stuff can wait because this is just early March.  The real warm weather has not even arrived.  It is premature to feel rushed to get to all of this when it is still technically winter!

Over a month ago now, the hospice nurses were thinking Ron had about a month left to live.  We have decided to just keep that in perspective – a month – and it will always be a month - tomorrow, next week, and next month - we will just say he has a month.  He has certainly grown much weaker.  He needs help to go from sitting to standing, to move his legs onto the bed or foot rest, to change his pants and put on socks, to get in and out of the shower and to dry off, to go up a stair step, to get in and out of the car, to get up if he is laying on his back, etc.  He fell down to the ground twice the week before last, after our trip to Alma, and lacks the strength to get up on his own.  Luckily, both times I was nearby to help him and he was not hurt.  Still, it is scary.

Suffice to say I am at Ron’s side almost 24/7 and do not feel comfortable leaving him alone for more than an hour or two.  This makes it hard for me to do anything, even to run errands or go shopping, let alone visit with any friends or do any kind of self-care.  If things were to remain as they are now and he were not to get any worse, I think I could just about manage the status quo.  But, we know things won’t stay the same.  It is going to get worse.  He will need more and more help.  He will become increasingly dependent.  This thought frightens both of us.

Knowing that he will progressively decline, Ron and I have talked.  We both admit we need help.  So, we will ask hospice for a volunteer who can be with him while I run errands or go out to take care of something I need to do.  And we will take up offers from friends who are willing to come be with him while I get some respite.  Ron has been reluctant to have people to the house because visitors take up extra energy from him and he has such a limited supply as it is.  But, if people are at the house just to be there for him if he needs them, with the understanding that he will not be visiting with or entertaining them, maybe that will be an okay compromise.  All we can do is try it and see how it goes.

I feel bad about not being able to do it all on my own.  I feel weak admitting I do need respite.  It is so hard.  I never want Ron to feel like a burden, but admitting I need a break sometimes feels like admitting that it is a hardship to take care of him.  I am just so tired.  And I think I may be hurting myself.  I go to bed every night with an ache in my low back (people who know me know I have had back/hip issues for almost 10 years now) and with extreme tightness in my shoulders, neck, and chest, sometimes to the point where it hurts to breathe.  The tightness thing is new and I cannot tell if it is from all the transferring and lifting I am doing with Ron, or if it is stress and emotional tightness I am carrying, or what – maybe it is a combination.  At any rate, laying in bed and realizing that Ron is going to need even more care and this is not the worst it will be (emotionally, physically, mentally, socially, or spiritually) and that I don’t know how long it will go on (which is a whole other issue), I know I cannot do this all alone – not long term.  Weak or not . . . I do admit that I need some help so I do not become too overwhelmed to adequately care for him, or, worse, become resentful.

Not knowing how long “this” will go on . . . it is such a hurtful thought to have.  Of course I want Ron to live for as long as he can, provided he is not in too much pain or discomfort.  Yet, I want “this” to be over with.  I admit it.  “This” is so hard and tiring and sad.  And, it doesn’t feel real.  I feel like we are in an alternate reality, like when Doc Brown shows two parallel time lines in Back to the Future II.  Someone must have altered the space-time continuum and Ron and I are in the wrong future – the real future is somewhere else and is much brighter and happier and more normal.  Like, in that future, planning a wedding wouldn’t get in the way of planning out his statutory will and memorial services.  In that future, me undressing him would be “sexy time” and would not exhaust him or cause him to feel shame.  If only we had a flux capacitor and a DeLorean and could get to the right future.  In this future, which is our present reality, the only way “this” ends is with Ron dying.  I suspect that will hurt me much more than “this,” so obviously I don’t want that, either.  I feel like I can’t win.  And that is just me . . . imagine how much crappier it feels for Ron, who also wants “this” to end, but doesn’t want to die.  It just sucks.

I feel like the most selfish prick on the planet for having the thoughts that I do.  Like, sometimes I look forward to returning to work and having a house that is free of hospital equipment and sleeping a full night and only having to worry about myself and the dogs.  Every time I think, ‘I just want this to end,’ my OCD kicks in and I feel the need to do something to make up for it or to take it out of the universe.  So, I busy-body like crazy.  I clean.  I fix.  I wash.  I organize.  I make lists.  I take care of Ron.  I try to keep him comfortable and happy.  I joke.  I tell stories.  I make him laugh.  I make him food.  I try not to sigh when he asks me to bring him something.  I try not to notice when my own body says it is sore and tired and needs help.  I try to just do the right thing and be a good person . . . a good wife.  I don’t want “this” to end if it means that Ron Clark is no longer on the planet.  If that is the only ending, then I guess “this” can go on for as long as possible.  I just don’t know that my body or sanity will hold out long enough.  I worry about these thoughts . . . and other things.  I worry a lot. 

I am just a human.  I am not perfect.  In fact, I am so imperfect that sometimes I think I am a bad human.  I am weak and I am selfish and I am sad.  Ron and I both try so hard to be rock-stars with this whole cancer thing – to focus on the positives and show our great senses of humor and take it all in stride and stay optimistic.  People seem to like us like that - fighters to the end, unwilling to give up.  But it is hard for both of us.  We are both sad and tired and hurt.  And we both have the thought cross our mind that we want “this” to be over . . . yet we don’t . . . not really.

I guess this post is just to say that it is not all peachy keen.  Sorry if this has been a depressing ride or has disillusioned anyone, but I am having a hard time right now and sometimes I need to say so.  To not say it would not be real.

We will persevere.  We always seem to.  Another day will go on – another week – another month.  As Ron says, “It will all be alright.”  I don’t see how that is possible, given the end game scenario.  But we have to tell ourselves something to get through “this.”  In the meantime, my elderly neighbor, who is also care-giving for her husband with cancer and therefore understands some of what I am going through, told me two days ago that I should ask God for more grace.  I think I will heed her advice.