Wednesday, July 04, 2007

The Long Run

He looks like Gerry, he sounds like him and has the same sense of humor - but I have the nagging feeling that it's not really my husband sitting in the kitchen or lying next to me in bed. I want to shake him - "Who are you, and what have you done with my husband?" - but that would be useless.

I might as well look into a mirror and ask,
"Who am I, and where did Annie go?"

Gerry has so much pain - it runs through his body and announces itself with every movement. He's taking Oxy, but - being a 12 hour medicine - it tends to get him in trouble. He'll take it and in an hour or so feel well enough to make plans to do this, or go there.

Then a few hours later the medication begins to wear away and I can see on his face and in his posture how much pain he's trying to hide.

But he WANTS to do so much - and it's hard to convince him that he can't right now. I don't think it's a male / emasculating thing (I felt the same way when I was sick, and was ALWAYS being yelled at for going out and mowing the lawn or moving furniture) as much as a feeling that one does NOT want to be considered useless.

Unfortunately, it means more work for me - or, rather, more stress. I feel a bit like I felt when the kids were younger - that they were just old enough to get into a lot of trouble if I didn't watch them, but I needed to get work done so it was hard to watch them every minute. I worry that Gerry will want to go for a drive, go shopping, mow the lawn, move some furniture - and will wear himself out halfway through.

My fear: He'll either be in a dangerous situation, or I'll have to come and finish the job.

Perhaps it's an unreasonable fear on my part, but I've seen how just doing what used to be the most elementary of physical tasks wears him down and makes his pain worse and ruins his focus.

It's a vicious circle; When I can get him to sit and rest, he feels well enough to do stuff. As he sits and begins to feel better, he ALSO feels useless so he wants to get up get stuff done.

And then he wears out so quickly, his tremendous pain increases, and I have to become involved in some way. The mental wear and tear is harder for me to handle than the physical work - jumping all those emotional hurdles; making him feel needed, strong, necessary - but also making him understand that the way he can be MOST helpful is to rest his body so I can get more work done.

And that sounds like such a slap in the face. I feel like a friggin' prison warden (hair cut notwithstanding.) Convincing him that he is FAR from useless is a hard dance. I can tell him all day not to do this, or don't do that - and it just sounds like nagging. The truth is, he has to be the one to give himself permission to slow down a bit, and he has yet to be that kind to himself.

Convincing him that this is NOT HOW THINGS WILL ALWAYS BE is hard. Forcing him - compelling him - allowing him to see that this is just the short run is beyond me many days.

THIS is when I really wish he had some men friends around, who could come over and shoot the sh*t with him, occupy his mind and engage him in some discussions so he's not talking to the radio all day.

There's so much to do (and here I am, blogging...) that I can't really drop everything to drive out to Oakbury to look at a cheap sink for the kitchen and still get my shawl finished. And Gerry can't go alone (aside from the drive, I can't see him getting that sink into the car.)

So I feel guilty that he has to call and change the appointment, and he feels guilty for making it without thinking of my deadline (these have never been a problem, but now I'm pushed and pulled in several different directions.) It's rough.

DUPLICATE ANNIE
I wish I could create a second me - there's so much I need to get done, and so few waking hours in a day.

I'm a nut for sleep, I know that I can't do without it (and I personally feel that sleep health is one place where most Americans could drastically improve their lives - just by getting a decent amount of sleep!) So I'm not really in danger of burning the candle at both ends.

What I am in danger of is stressing myself with the amount of stuff I NEED to get done.

TODAY I have to finish the VK Shawl - it's due to NYC on Friday - I will fed-ex it on Thursday. The knitting went pretty quickly, but the duplicate stitching is going s l o w l y.

The new bathroom - we met with the contractor yesterday and got the news. This is the hard part, where I KNOW that if Gerry and I were able to devote our full energy to this we could do much of it ourselves - but also knowing that realistically we DON'T have this energy now (especially not Gerry!) and we do need the bathroom on the ground floor.

We can go one of two ways
  • The expensive contractor with the proven track record who we feel we could trust implicitly to just get the job done with as little fuss and mess as possible.

  • The less expensive contractor is newer, just starting his contracting business, and that concerns us a bit.
We'd budgeted for this - and had anticipated taking out a short term loan for it - so I think our gut feeling is to go with the contractor who has a proven track record.

A decision like this is so hard because it forces us to not just be penny-wise and pound-foolish, but to look at the long-term picture and calls up every ounce of hope that we have. Hope that Gerry will get better, hope that doing the job right will mean eventually when/if we sell our home this addition will be a selling point (not something to hide or apologize for.)

It's especially hard to be considering an expenditure at a time when finances are blood-chilling scary - but the amazing response to Gerry's MM Fund has helped us look at the long picture. When we're honest with ourselves we KNOW that we must do this, and we must do it right or we will pay for it as long as we own the house. It feels very counterintuitive, though.

Money's tight - so why do this? To save money (and increase Gerry's quality of life) in the long run.

Envisioning the long run takes hope.


It's like the blogging. On the surface it seems so stupid to take time that I can't spare to write my feelings - outline my days - and talk about how little time I have. But this accounting (to whom?) makes everything a little clearer. It's like taking the time to look for my glasses.

Or it's like making a gauge swatch. Not a lot of fun, and feels like a waste of time - but it will save so much time in the long run.

Thank heaven a new knitting friend I met at the guild a few weeks ago has offered to take the kids to the Highland pool today for a few hours with her Max-aged daughter. That will be a relief for the kids, and will give me some uninterrupted, guilt-free time to get more of the damned s l o w embroidery finished.

How we'd all like some more time around here.

36 Comments:

Anonymous said...

Hi Annie,
Gerry looked great on vacation-glad you were able to get away.

Pain management has been lax in the medical profession up until a few years ago when it became a mandate to keep pain away, it was pushed with nurses and physicians. If Gerry is in pain i think you need to let his caretakers know now-you don't need to wait until the next evaluation.

My prayers are with you and please don't take anytime to respond to this e-mail, spend the time with your family.

July 04, 2007 11:38 AM  
B. said...

Thanks for the shawl preview. I was so curious about it, and will look forward to seeing it in VK.

Good luck with your renovation. Living through a renovation is a very stressful experience, so I would vote for going with a contractor you really trust. But once it is done, you will be relieved and happy.

July 04, 2007 11:51 AM  
...e... said...

go with the money one, otherwise you'll spend the whole time on (more) pins and needles, no pun intended. penniwise is pound foolish here.

July 04, 2007 11:55 AM  
Cathy Henry said...

Hi, Annie, I can see you are feeling a bit "worn" today. As my husband (a palliative care nurse practitioner) always says, "Unrelieved pain serves no useful purpose." If Gerry is on twice a day Oxycontin, he should also have faster and shorter acting pain medication on-hand for breakthrough pain. His doctors should know that he still has pain on his current meds. He doesn't get any extra points with them or in heaven for putting up with it, and continued pain is BAD for the immune system. He (or you) should call them tomorrow!

On another note, being a physician myself and a homeowner, I have to confess that your trials with getting estimates for remodeling/repairs are more daunting to me than the medical stuff! But I agree with your gut feeling, go with the experienced contractor.

And right now, take THREE SLOW DEEP BREATHS. Repeat as needed (doctor's orders).

Well that's enough unsolicited advice for one holiday morning.

July 04, 2007 11:56 AM  
Liz R. said...

Why don't you ask Gerry's doctor if he can take the oxy every 8 hours (3X a day) instead of every 12 hours. I did that and it helped. I agree that he should have some percocet for breakthrough pain in between doses.

I suffer with chronic pain and I understand.

July 04, 2007 12:57 PM  
Yarn Thing said...

Annie,

Hang in there girlfriend! I know this must be tough but knowing how strong of a woman you are I know you will surly persevere and manage the day properly! Just so you know, I pray for you and your family daily!

I hear you might be coming to Colorado in Oct. Is that still the plan? If so, I can't wait to meet you! How about going out to dinner? Jill and I would love to take you out if you want...just let me know :-)

Talk to you soon,
Marly

July 04, 2007 1:05 PM  
RogueTess said...

Hi Annie -- keep blogging! It helps YOU and, even if you don't realize it, others like ME who read your blog and take comfort that we are not alone. I just returned from visiting my parents in a bit of crisis. My dad was admitted after an emergency room visit for breathing trouble. Bottom line: new pacemaker, adjusted diabetes meds and new diagnosis of early Parkinson's. My mom, who has only recently begun paying bills as my dad has declined, is devastated to finally admit she must go it "alone" from now on. I had to arrange for 24-hour care, meal delivery, setting up a downstairs bedroom and transportation to doctor appts while I was there. I am exhausted. My sister flew up to tag-team me -- neither of us could do it without help. Reading your blog reminds me I am not the only one who must manage and to keep knitting. I am taking comfort in community and beautiful creations.

July 04, 2007 1:05 PM  
auntiemichal said...

Ditto all the above! Regarding Gerry's urge to do stuff that needs doing, can you do some shuffling of jobs so he gets more of the ones that are less physical or that can be paused easily? You are probably already doing that, but if he can do some of the things you usually do, then you can work on the income-producing stuff. Duh! Do the kids have chores? I'm imagining Gerry running the washer & dryer while the kids run the washables up and down the stairs. I bet the kids would be glad to be helping, learning, and spending time with Gerry.

July 04, 2007 2:21 PM  
Brenda said...

Hi Annie, I hope all of these ideas are helping!

I read about you on Knitting Daily last night and read your blogs thru the past few months. I think your blogs are helping you and all of us at the same time. We can identify with you, and that somehow makes it better. All of us have had or will have health crises - my husband just got out of the hospital with Kidney stones. He had more pain today, so they are unresolved right now.

I want to encourage you, as we all want to - we want to help. We will be knitting your patterns and thinking of you and your family.

Hope to meet you when you come to Nine Rubies, if that works out.

Brenda in San Mateo

July 04, 2007 2:25 PM  
Bonnie said...

Hi Annie,

I'm so sorry your husband, and all of you, are going through this. My gut feeling is that you need to do whatever it takes to free yourself up to be available to your husband 24/7. The knitting world loves you and will wait. Don't make the terrible mistake of thinking you will lose ground by stepping out of that realm for a time. In the event that the worst happens, you won't be thinking, "I wish I'd spent more time working." Everyone understands the priority is your sick husband and family right now. I'll be praying for you all and hope for some good news. ~Bonnie

July 04, 2007 2:56 PM  
Marigold said...

Annie, thanks for taking the time to blog. It may not seem important, but there's all of us out here in blog-land, thinking of you and Gerry, and wondering and worring about how you're doing. Thanks for updating us.

July 04, 2007 3:09 PM  
Helen said...

I know I'm a boring old fart, but I would go with the seasoned tradesman; you don't need someone who is going to even ask you too many questions, let alone make mistakes or not turn up or any of the other things that the unknown quantity might do, not at this particular time.

I do hope G can get some help with the pain.

July 04, 2007 3:21 PM  
jane said...

Hang in there, all your blog readers are thinking about your family and sending positive vibes your way. Jane

July 04, 2007 3:51 PM  
Leslie said...

Living with worry is a pain - especially when the worry is about your husband, a man you love and don't want to be without. I've been there, done that - heck, I still do.

I'm sending you a few hugs, Annie. Put them with your pda or cell phone and when you are out somewhere feeling stressed, one will come out and help you along.

Keep blogging. It's cathartic to analyze your feelings enough to vocalize them and can give you some perspective that can't be gained through primal screams. Know you're loved and in our thoughts.

July 04, 2007 4:15 PM  
Carol said...

If the Oxycontin is wearing off then Gerry probably needs a higher dose of it. The other thing he should have is what they call"breakthrough" pain medication. The idea is that the Oxy gives regular pain control, but if the pain breaks through the Oxy, then he takes the quick acting med. If he needs to take the quick acting med alot, then the Oxy dose needs to be increased. Talk to his doctor or your pharmacist and see if this can be remedied.

**hugs***

July 04, 2007 4:22 PM  
ML said...

Consider asking both contractors for names of former clients so that you can ask them about their experiences. Just because someone is more experienced doesn't mean he's a fair businessman. Less expensive contractor might be less jaded and more willing to go the extra mile for you. My biggest sub-contractor buggaboo was having to hear, "I've never done it that way before." Hmm. You do this everyday and this has never occurred to you?? Give me a contractor who will listen to me, not one who insists on doing it only one way--his way. You can get a feel for these things by talking to former clients. Insist on it.

July 04, 2007 4:32 PM  
fritzl said...

Dear Annie,
Keep blogging. It's the best catharsis around. All of us are feeling for you and Gerry and the kids, so you just keep talking to us and we'll keep reading, and sending you all good vibes.

July 04, 2007 4:48 PM  
Knittah said...

Definitely go with the experienced contractor who will just do the job right with minimum oversight. I have a chronic illness, and paying big money for SMOOTH renovations we love was worth every penny.

July 04, 2007 5:40 PM  
Beverley said...

Hi Annie

You don't know me from Adam, just another blogger [ and knitter ] but I feel compelled to comment. I too had a very ill husband for 10 years. In Geoff's case it was a brain injury so hard to watch him struggle to do and remember when he was no longer able to.

The important thing is I think to have a serious talk and think about things he is able to do or creative ways around doing things he used to. You may be able to draw up a list of tasks important to you that he is able to do which will make him feel valued and that he is contributing to your load.

Because believe me he will be concerned about the effect his illness is having on you and will be very aware of the extra work you are having to do.

There may be more you can do to help his pain load as well, check out alternatives to meds to help. Not really qualified to speak on these but I am sure there must be more that can be done. [I know my Auntie found much relief from acuapunture.]

But the most important thing here... believe it or not is to look after yourself!!! Allow yourself your feelings, vent them here to us... it is a safe place. Also sleep, knitting, walking whatever but important if possible to take time out to yourself as well. I know I nearly went under at the time. Fortunately had some great friends to help.

The best way you can look after your husband and family... look after yourself.

Anyway I will get off my soap box. Just to let you know that thoughts and prayers are going your way.

Knit on >^..^<

Beverley

July 04, 2007 6:29 PM  
shoeboots said...

Keep your head up, and don't overwork yourself! Gerry being sick has re-prioritized a lot of things, and that's okay too. Family comes first, the rest will eventually fall into place. Still sending the good juju your way.

July 04, 2007 7:30 PM  
Debbie said...

You are right about the sleep. I know you have a ton on your plate but you do need to take care of yourself. Have you ever thought about some type of grieve counseling? I know it has helped me when both of my parents were ill with cancer.

Keep venting! Those of us that can't be there to support you will support you via the blog.

July 04, 2007 7:51 PM  
Suzanne said...

I'm glad to hear the blog is helping you -- I hope that knowing there are lots of people out there rooting for you gives you some extra strength when you need it.

And on the contractor issue -- go with the experienced one. While I am usually up for giving the new guy some experience, this is NOT a great time for you guys to add to the things you have on your plate. And it could be no big deal, but if it turns out to be a HUGE deal, you'll regret it. Good luck and blessings your way.

July 04, 2007 7:58 PM  
Barbara Skoglund said...

I'm going to echo what a few others have said - brainstorm the things Gerry can do. Even if you can do them faster. You seem to be doing a lot of the "research" tasks. I sure felt more empowered by researching my medical problems - even when things felt hopeless, I felt I was doing what I could. Can he do the hotel searching for Rochester? Maybe gathering the info about local temples and fall Hebrew school registration. What ways can he support your work? Typing, proofing, making travel arrangements, calling shops to pitch teaching gigs, entering help needed on the FOG site, folding the wash while sitting in a chair, reading books with the kids, and so on. I can't do stairs so Dave has to do the laundry and other tasks my knees won't allow. I take care of all the holiday and school "stuff" and folding and Dr. appts. and things I can do. I'm sure you can think of knowledge tasks and those light tasks (like clothes folding or writing up shopping lists) that can be done in chunks if he gets tired. I've had two major surgeries since Dave and I got together, including months in a wheelchair, and having my "sweetie" take care of me felt good at first, but then I felt like a burden. My esteem only started to rise when I started doing what I could. It also have me a sense of hopeful normality.

July 04, 2007 8:53 PM  
Lynn said...

Sending you hugs from TX. I remember that you said you're not so much for praying, so I *hope* that you find your local support group growing as you need it. I have never had to deal with anything like this, but it's been my experience that help shows up when it's needed the most, and sometimes from the most unlikely source.

Your gratitude for the small daily good things, your honesty about how hard this is, and your clear-headed consideration of your sweetheart's point of view, all suggest to me that your phenomenal creative talent is by no means the greatest gift you have been given to get you through.

Thank you for the gift of sharing your struggles and triumphs with us.

July 04, 2007 8:57 PM  
jmk said...

Thank you, Annie, for an excellent description of what it's like to be concerned for someone who is "frail" for whatever reason and to whatever degree. My husband had heart surgery a number of years ago now and most of the time he's fine. But once in a while he has a bad patch and I can *so* see both our reactions to it in your post. The times I've wanted to tie him to his chair and make him watch telly or read or just sit, for goodness sake! I think I'll keep a copy to show him the next time so maybe he'll understand my nagging, LOL.

July 05, 2007 2:45 AM  
Pat said...

Hi Annie,
I've been reading your blog for a few months now and have not yet left a comment, but at this point, I just want to tell you that my thoughts are with you. My husband has had some serious health issues and I can certainly relate - it's very difficult. I hope that writing about this is cathartic for you and I also hope that you realize that there are many of us out here who are sending you and your family lots of positive energy. Stay strong and take care.

July 05, 2007 7:42 AM  
Milly said...

Again, I wish there was something more I could do to help you guys are in such a stressful place right now. Go with the proven contractor, it will save you money and stress in the long run. You don't need the stress of a halfway done job that you will have to coordinate someone else to come in a fix it there is a problem. Right now it is all about what is the easiest for you guys. You have so much on your plate a bathroom does not need to be added let someone else worry about that. Could you ask the contractor to go get the sink? Just a thought.
Thank you for keeping us all posted and hopefully in turn we are a release for you.
My thoughts and prayers continue to be with you.

July 05, 2007 7:57 AM  
Harriet L. said...

First of all, it doesn't sound like Gerry's pain is being managed well. If the Oxy is only working for a little while, he may need something stronger and longer lasting. You may need to push the doctors on this. When my mother was ill, we really had to push to get her adequate pain relief. Pain is strength sapping. In addition to the MM, the pain can be making him more tired.

I don't know how to tell you, but you are doing fine. Ultimately whatever you get done in a day is what you get done. Unless it's life or death (and some of the choices you make right now might be) it's not that important. Now is not the time to decide to be Wonder Woman.

Hang in. You are in the thoughts and prayers of many people.

July 05, 2007 9:52 AM  
Lori said...

Go with the experienced contractor. You will save yourself headaches and money by getting the job done right the first time. Plus, it will not take as much over-sight time by you. I've been there and made the "economical" decision once - never to venture into that mistake again!

Good luck on everything - and remember to enjoy (at least part of) every day.

July 05, 2007 11:47 AM  
Kathryn said...

Annie, breakthrough pain that results when Oxycontin is not enough can be treated with the short acting form of the drug, commonly known as Percocet or Roxicet. I hope that one of you will let the doctor know that the Oxycontin alone is just not sufficient. Gerry could feel so much better. I am an RN, but am basing this on my own personal experience of living with pain. Best wishes to all of you.

July 05, 2007 12:07 PM  
Pat said...

Annie, there is no reason that Gerry should suffer as much with his pain. When my husband was first diagnosed they put him on Oxy too, but quickly moved to Fentynl - a slow-release patch that lasts 30-48 hours (comes in different dosages too) which means that there are not these ups and downs all the time. Ask your doc. It's the same drug basically, just a different delivery system. Dealing with pain is exhausting, and taking meds lets a patient have a quality of life. I talked to lots of docs about the addiction issue and they pretty much assured me that yes, the body gets "addicted" to the narcotic, but there is not psychological addiction that folks who use drugs for other than pain relief get.

Pat

July 05, 2007 2:08 PM  
AlisonH said...

As someone who has gone through that level of illness and come out the other side, my family tells me that it's in a way easier for them when I'm really sick and when I'm really well--they know I need them to do everything (or not.) It's the in-between stages, when I can get some stuff done but then collapse in a heap, where they don't quite know how much they're supposed to step in and keep me from overdoing. There's a book (probably OOP but you can find it on abebooks.com) called Mainstay: for the well spouse of the chronically ill. Its author points out that there aren't a lot of books out there for those whose loved ones are ill, and she wanted to help fix that.

Best of luck with it all, all of you there. It's a struggle and a process

July 05, 2007 2:09 PM  
Ruth said...

Oh, Annie. My heart is aching for you. There is a special Hell for the spouse/caregiver of a very ill person. It includes grief, fear, anger, guilt for the anger and for being well and pain-free, so many confusing and contradictory emotions. I'm glad you can make time to blog--it gives you a place to express and share the rollercoaster you're on now and we can give you a caring and supportive safety net so that if you feel like you're falling, you'll know we're there to catch you.
My husband is terminally ill and knowing that people are caring for us, that prayer groups mention us regularly, and that friends check in often is a huge comfort to me. I hope we can be of some comfort to you.
Ruth

July 05, 2007 11:06 PM  
ellen said...

Dear Annie,
I cannot add any advice. I wish I could. The only thing that I can do is to say that I am thinking of you and your family, I am sending good thoughts your way. I truly wish that we could all share and lessen the pain that you and family are experiencing. Please know that there are so many of us who send loving thoughts and wish that we could help in some way.

July 05, 2007 11:50 PM  
Chris said...

Annie,

I have just read about Gerry's illnes, and will be praying for you all. (I met you at the Fall Fiber Fashion Weekend last year in Indiana.) I was diagnosed with colon cancer last summer at age 44, and have been undergoing treatment since then. I wanted to share a post that one of the nurses left in the chemo room: "Life is not about waiting for the storm to pass, it's about learning how to dance in the rain." I have found this so true, and hope this encourages you in the midst of this storm.

July 06, 2007 10:09 AM  
Anonymous said...

Annie,

If you need a second opinion at any point, my father-in-law was treated at the Myeloma Institute in Little Rock, Arkansas. Here is their website: http://myeloma.uams.edu/default.asp
They are world renowned and specialize in only multiple myeloma.

July 06, 2007 11:01 AM  

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