Mixed Bag

Ron has recovered from his chest congestion last week.  His lungs have cleared completely, which means it was just a cold he caught and not his body failing him.  He continues to have significant weakness and fell again early Thursday morning while trying to go out of the house in the wee hours of the dark.  He is supposed to call for me when he wants to get up, but he prefers to do it on his own, with his walker, whenever he can.  His nurse has stressed the importance of someone being there to assist him at all times - that all it takes is one fall to break a bone and he would then wind up stuck in a hospital room, which he would loathe.  I heard the thud of his body hitting the floor.  I jumped out of bed, throwing all my bedding on the floor, and said “No, no, no, no, no, no,” as I ran the short distance down the stairs, during which time Ron found his breath and said, “I’m OK.”  He was on his back, his head a few inches from the coffee table, the front door open wide with his walker parked there.  He reassured me that it was his knees that buckled and hit first and that he didn’t fall over backwards, which is what it looked like.  Other than a small rug burn and bruise on his right knee, he was unscathed and I got him up and out to the porch where he was headed for a smoke and a pee. 

Since he fell again, Ron has been relying on the wheelchair to get around.  He tried the walker briefly yesterday, but was able to say he felt too weak and needed the chair.  This means I am pushing him and doing more hands on transfers in and out of his chair.  Ron is really struggling with the loss of independence, mobility, and freedom to do what he wants when he wants.  I am also struggling and trying not to feel too overwhelmed with it all, knowing that it just continues to get increasingly labor intensive.  My stress level is quite high, for a few different reasons.

My paid time off from work has ended, so, for now, I am on unpaid leave.  I was approved for FMLA for myself, due to anxiety, depression, stress, etc.  So, I have another seven weeks left during which time my job is held for me and I am safe.  I am waiting to hear whether I will be approved for short term disability, which would mean I would be paid at 60% of my income and would retain my health insurance.  The company that reviews my disability claim is waiting for providers to send records for review and I have done all I can in prompting them to send these in as soon as possible.  It feels weird posting this stuff online . . . but I believe in transparency and honesty . . .  and I always hold out hope that somehow my process will help someone else with theirs - so, I am putting it all out there.  Anyway, I often fight in my mind against the idea that I could be “disabled” by my mental health.  But, then I think about working right now, with all of this going on, and I realize that I am, at least for the time being.  My cognitive processes (especially memory and ability for finding the words I want when speaking) are not what they were.  I cry all the time, sometime over the silliest, littlest things.  I worry CONSTANTLY and do not sleep much.  I am so tense that my body aches physically, especially in my neck and shoulders.  There is no way I would be able to do my high stress job in addition to managing my high stress situation at home right now.  Whether that “counts” or not is up to the company that will review my claim.  I have no control over it, so I have to let it go.

Until I hear about the disability claim, we will be living on savings and the small amount Ron gets from Social Security (does not even cover the mortgage, let alone other bills and expenses) and his DHS food assistance.  I know we have enough savings (thanks to the three benefits people held for us last spring!) to last us a few months, so I am trying not to worry.  I am trying to trust that it will all work out - that we are taken care of, for now, regardless of what happens with my claim.  I have people who have offered small loans if we run out of money, so when the time comes, I can look into that.  Or we could always have another benefit.  Or who knows, something will come along . . . there is always a way, right?  I am not writing this as any kind of plea for assistance at this time – so please do not read it as such.  Right now, we are covered by savings.  I am just noting it as another stressor - wondering where the money will come from and how long the money we have has to last - and trying not to spend too much of what is saved because we do need to make it last.  Ron and I have not been spending too much these days anyway, in part because we rarely leave the house, and in part because, when we do, people often pick-up the tab for us (and now we actually let them).  But, there are a few areas where we may need to tighten the proverbial belt to make it last, and I am okay with that.  I am sure Ron will be, too.

As mentioned in my last post, a bit over a month ago, Ron’s care providers thought he had a month or so left to live.  That is part of why I took off work in such a hurry – to spend that last month with him.  Ron has always enjoyed outliving everyone’s expectations and he continues to do just that.  This week, in talking with his nurse, now that he is healed from the cold, she remarked at how stable he is.  Other than the weakness and some significant new edema in his abdomen, he is doing really well.  His heart and lungs are doing great.  He is not dehydrated.  His skin color is good.  He is eating a little more and has had no bouts of vomiting in over a month.  His nausea and pain are much better managed.  Without wanting to give a definitive answer, she told Ron he could live for “quite a while” the way he is now.  She added that the expectancy can always change at a moment’s notice, but for the time being, he seems to be in pretty good health, all things considered.  She, like other providers we have worked with, is amazed at how well his body actually is functioning, given the extent of the tumors still growing inside.

Hearing that Ron has more time is happy news.  You would think he and I would both be overjoyed.  We are happy.  We talk about how great it will be to enjoy one another for more months to come.  But, it is a mixed bag.  Logistically, I stress over the amount of care he now requires and financial stability and job stuff.  I worry about how long we can survive this and what it will do to us as a couple.  If my job is only held for seven more weeks, what happens if he lives past that?  I cannot go back to work and leave him home alone like I did before, but the nurse pointed out I would be spending my entire take home pay to hire an in-home provider.  She offered that maybe we could work something out if I went back part time, like between friends and family watching him and maybe a few hospice volunteers and home help providers, maybe I could do it.  But, there again, the emotional impact of trying to manage that, along with my grief at what his happening, while also coordinating all of these schedules and two trips to the hospital for him to be drained each week and everything else makes my head spin and I start crying just thinking about it.  I am safe for the moment, so I try not to leap that far forward. 

Just getting out of the house to run errands or do any kind of self-care or even to mow the lawn is tricky.  Hospice can set us up with a volunteer to be with Ron, but our social worker informed me that the volunteers are not allowed to assist in any kind of transferring or hands-on care for Ron.  This kind of defeats the whole purpose, in my mind.  If they can’t help him sit up in bed or get out to the porch for a smoke or go to the bathroom, what’s the point?  He can have home help, but it sounds like that would only for specific tasks, like to bathe (which, so far, he refuses outsiders’ help with), and only for the time it takes to do the task.  The more we learn, the more we feel alone in dealing with this cancer bullshit.  Hospice does help, but they will not do it all.  I have known this from the beginning, but as we need more help and the help is not readily available, it starts to sink in.

Trying to work with our hospice social worker to get our needs met has been extremely frustrating this week.  She has been pessimistic about every request I have made, for example, answering, “Well, I have never had that work before, there are so many barriers to the assistance programs,” when I asked about whether we could get help obtaining a ramp so I can get his wheelchair in and out of the house.  When I asked about help with lawn care, since I cannot leave Ron in the house alone while I do it, she called around and offered that I could pay a company $80 a week to cut my lawn, which is not feasible.  When I talked to her about my stress about the possibility of Ron living longer and what that will do to my work situation, she suggested I could put him in a nursing home so that I could return to work. 

I am going to refrain from the barrage of expletives that come to mind with these multiple ridiculous conversations.  Suffice to say, I don’t feel like she knows, cares, or really gets us at all.  Put Ron in a nursing home?!  Really?!  He is 29 years old, for goodness sake!  And I don’t feel like she wants to be very creative with finding any solutions.  In fact, I think I have gotten farther on my own playing social worker (which fortunately I know how to do) just using 211 and making some calls.  In theory, Ron and I should have a social worker who does this job for us, exploring resources and making calls and coming up with solutions, so that I can focus on caring for him (which is a 24 hour job) and just being with him because I love him and he won’t be here forever.  So, the current situation is not working out well.

Ron has never felt a strong connection to our current social worker.  He gets so upset when she has to come to the house that he almost cries.  This is all supposed to be what Ron wants.  So, he has requested to switch back to the social worker we started with the first time we were in hospice, before we had to drop out so he could get his shot (which, again, never would have happened if people had been on top of it, and which I had to resolve myself in order to get him back into hospice), and we will see where that gets us.

In the meantime, never fear, because our nurse is awesome and is making sure our needs get met.  Even when the social worker has no hopeful advice for us, our hospice nurse does.  She knows some people and made a connection and found a building company that will construct a ramp for us, for free.  They were out taking measurements this morning and it is to be built Monday morning.  AMAZING!  She also believes we can get a volunteer to either mow or be with Ron while I mow, so we will work this out.  She is also working to see if maybe, through her connections, she can find someone to just mow for us, for free.  I found a local company to fix my lawn mower for not too much money, so I will be able to mow soon, if needed, which is needed because the grass has grown so much this week that I can hardly push Ron’s chair through it, and I have to be able to get him out of the house and into the car to get him to his appointments.  Again, just a lot of stressors on my mind this week, but it feels like they are now getting addressed and we will get back on track soon.  Ron’s nurse added that she would NEVER let Ron go to a nursing home, so to ignore that insensitive statement completely.  Needless to say, we love our nurse. 

From my last post, I got several offers from people to come be with Ron so I can go out of the house.  His family is trying to come up with a regular day that someone can visit each week so that I can plan for outings/activities on that day and they can spend more time with Ron.  His mom came alone this week and his sister will be coming alone in just over a week.  I think he likes these 1:1 visits very much because it is less energy and easier for him to be with and really talk to people in that capacity.  My supervisor from work, Laura, has offered to come spend time with Ron each week so that I can go get some horse time, which is a respite for me to prevent burnout and about the most soothing, wonderful activity I can do for my own self-care.  My fabulous cousin Stacey came over yesterday so that I could go have a long overdue lunch with my dear friend Gretchen.  Ron didn’t need or ask for anything from Stacey while I was gone, but she was here and willing to help if needed and was able to just be quietly working while he napped, so he didn’t feel like he had to entertain her. 

One nice thing about timing out my leaves from the house with family and friends is that they are willing to help Ron as he needs it.  This is different from what the social worker said about hospice volunteers, since she is adamant that they are not allowed to help Ron in any kinds of hands-on way.  If they can’t physically help, it becomes impractical to have them stay with Ron while I am out.  So, the more we can figure out family and friends being here and that I can coordinate my errands and time off with that, the better off we will be.  Plus, Ron is more comfortable with people he knows rather than a stranger coming into the house.  He is sick of what we are now referring to as “The Parade” of people who come to the house and look at him in his bed like he is some kind of exhibit. 

Anyway, all things considered, I got as much “me” time as I could this week.  I visited and lunched with great friends from work during both of his paracentesis appointments.  I walked the dogs on nature trails with my sister-in-law while Ron’s mom was here.  I walked the dogs with Laura when she came to visit and to drop off some yummy food.  I lunched with Gretchen and got to chat with Stacey yesterday.  I had interactions each day of the week with friends and that was a very nice change of pace.  I hope we can keep it up.  However, I am still stressed and physically sore and worried.  There is so much to figure out and plan and problem solve for.  And then, besides all of the logistics, there is the overwhelming, looming sadness of this whole thing.

Ron is really having a hard time.  He has been sad and angry, pretty much ever since he got sick last week.  Normally, if he has an off day, it lasts for just that, about a day.  I have never known him to be this unhappy for such a consistent amount of time.  Of course it makes sense for him to be unhappy and I have expected it to come at some point, but it is still hard to see someone you love feeling so bad.  I see him isolating himself more and more from people . . . it even seems like he isolates from me sometimes, which I have read is to be expected, but that doesn’t make it any easier.

As the weakness and loss of body functions progresses, Ron becomes increasingly discouraged.  He hates that he cannot move around on his own.  He hates asking for help.  He hates feeling trapped and confined to his hospital bed, even if he does have a nice view.  I offer to take him places, but the very acts of getting ready and leaving the house, getting in and out of the car, or even just of being out of the bed for too long all exhaust him.  And that is just not fair when you are only 29 years old.  He hates his bed sore, which is right on his tailbone.  He cannot lay on his side or his stomach because of the tumors, so he can only lie on his back with pressure in the same place; it hurts him.  I see him mourning the loss of mobility, of freedom, of independence.  He talks of missing the days when he could de-stress by just jumping in the car and going for a drive. 

This is the very ugly part of cancer – what it robs from the person.  The life they should have had is taken away, even while they are still living.  They are forced to stick around and have it waved right in their face, all the things they want to do, but cannot.  I am quite certain, watching Ron go through this, that while it would be no less tragic, it would be a heck of a lot easier to be snuffed out by some traumatic accident than to slowly wither away from a terminal illness.

I think Ron heard the nurse say he could live for “quite a while” like this with mixed emotion.  He says he is glad to live, glad to go on spending time with me and glad to still have time to see his family and friends, glad for the spring and the birds and the smell of freshly tilled fields and the sun and moon rises.  But he is also so exhausted and weak and sick of being trapped.  And if there is no hope that he will regain function, it becomes a kind of prison sentence – trapped in a body that does not work.

Still, all mixed feelings taken into account, we are glad to be able to report that he will hopefully be sticking around a bit longer.  He has more time than we thought a few weeks ago.  I am going to do everything I can to try to make each day for him as good as it can be.  And I am going to try to trust that all of my worries will work themselves out and to know that, for today, we have bills covered and are alive and are OK.  We have each other.  We have another day, and hopefully another and another and another.