Tolerating the Intolerable

Posted by Andrea R. | April 27, 2009 | 35 Comments

There is a woman who walks into my house every morning at 7:00 am. Sometimes she goes into my kitchen and makes herself a cup of coffee. She uses my bathroom, helps herself to dishes in my kitchen, puts dirty laundry in my hamper, and pulls linens out of my linen closet. She reads the books on my book shelf. Occasionally she comments on the cleanliness of my house or on something clever one of my children says or does. She hears me yell at my kids, sees my bad moods, my messy kitchen, my pajama-wearing bra-lessness first thing in the morning, and I secretly believe she is tracking my menstrual cycle. She observes. She monitors. She records. She sits in my living room all day long.

Why do I put up with this?

Because she is my son’s nurse. E has severe brain damage and is considered “medically fragile.” Too sick to attend school with other children in similar conditions to his, he must be cared for in our home. Every few hours he needs some type of medical treatment – a breathing treatment, a medicine dose, or a feeding through the tube in his stomach. He must bathed, turned, and have his muscles massaged and exercised. He has therapists and teachers who visit him periodically throughout the week, and she is there to work with them when I’m not home. Even when E is healthy, his needs are critical and ongoing, and it is impossible for me to attend to him and my other two children who are 4 and 2 years old. Without her we couldn’t go to the gym or to preschool or to the grocery store or to church. Without her we couldn’t have any semblance of a normal family life. My younger children would suffer. E would suffer. Our family would suffer. I would suffer.

It’s an intolerable situation because we have no privacy – she is always there during the day. But the alternative – putting him in a nursing home – is also intolerable. I can’t bear the thought of E being out of my sight and influence even though I don’t directly attend to his medical needs.

We are blessed – E has two nurses that care for him on a regular basis. With many agencies, nurses come and go and often you may not know who will show up at your door. He gets better continuity of care because his two nurses know his habits, moods, and patterns. The situation is as good as it possibly can be.

Still, there is someone in my house. Every day. Sitting in my living room. Observing. Monitoring. Recording.

I know many of us live with seemingly intolerable situations. I’m not asking for advice on my particular situation, but thinking about it made me wonder how other people cope with their own intolerable situations. Discuss.

Category: Daily Special

Comments

35 Responses to “Tolerating the Intolerable”

traci
April 27th, 2009 @ 6:01 am

I have mentioned before at this site that I am physically handicapped. I have had over 50 major surgeries and this year I will be 50. I have spend months at time in bed and once 9 months on my stomach.

At the 9 month stretch I had visiting nurses, otherwise I would have never been able to afford the medical bills of the other options. Yes, it was intolerable at times – but in light of the alternative……

That I think is the secret – in light of the alternative. And that works with so many other things of life now. I am presently trying a new treatment that makes you feel really lousy and in pain for at least 30 – 90 days into it – but, in light of the alternative….

Other side – someone in your home – wow! – I weeded out the ones that I could not have some personable relationships with, so I saw them as a visiting friend or family member – and then just live!
Also I have spent the years 21 – 47 single and living alone. Now I have a husband (yeah!) and I see many of this differently. Yes, he is aware enough when I am in pain and it is mentioned as a matter of fact – and occasionly more. But what I see is the opportunity for me to be a better person. To smile and get chores done in spite of. To work for a special dinner when I would rather lie down. Why? – because life ain’t about me no more – it is about we – glorious!
And now I see that in everything – these day by day things are not about me – they are about the big We and ultimately HIM!
Sure puts things in perspective – we all have “them” days!
Annette
April 27th, 2009 @ 6:49 am

Great way to put it–tolerating the intolerable. Every person at some point in life will have that kind of situation–it’s part of mortality.

A good friend of mine gave me a great tool that’s helped me: “It is what it is.”

Sounds silly, maybe, but when I cling to “it is what it is” and stop fighting the reality of a situation–reminding myself that I can’t CHANGE it–I find that dealing with it is easier.
SilverRain
April 27th, 2009 @ 6:57 am

I agree that some things only become tolerable when seen in light of the alternative. It’s like that line from Labyrinth, when Sarah asks how she can believe Hoggle, he replies, “Let me put it this way: What choice do you got?”
Anon
April 27th, 2009 @ 7:43 am

I have a daughter who had brain cancer as an infant and because of it has been left with quite severe disabilities. She’s almost 11 now, and I often find myself bemoaning the fact that I am at home and not able to go back to school or work because of her needs. Then I remind myself that ten years ago I was told she would not live, and yet here she is, and she’s doing wonderfully. It’s a great reminder that the small sacrifices I make are nothing compared to the blessings my Heavenly Father has given me in allowing her to remain on this earth.

Love is the greatest motivator to tolerate the intolerable.
Jenny
April 27th, 2009 @ 8:21 am

Love and faith.
Yesterday in RS we discussed the conference talk “Hope Ya Know We Had a Hard Time” by Elder Quentin L. Cook. Some trials ARE for our own good, and are suited for our own personal development. You do discuss the good and I love the quote by Elder Neal A. Maxwell: “The sharp, side-by-side contrast of the sweet and the bitter is essential until the very end of this brief, mortal experience.” We are all subject to this conflict. Thanks for sharing yours.
Sue
April 27th, 2009 @ 8:38 am

Like Annette, I am also a fan of the “It is what it is” statement. Somehow that helps me shut down my ruminating on any given subject. Having said that, it would be very difficult for me to have someone in my house day in and day out; I really do like my alone time. (Even having people I LOVE visit can get a bit wearying after a week or so…)

It’s amazing what we can get used to when we, as everyone has said, consider the alternative. And Anon is right, “Love IS the greatest motivator to tolerate the intolerable.”

Hugs for all…

=)
Kay
April 27th, 2009 @ 9:15 am

Thank you for putting my life into perspective. I have been struggling with having my husband at home as he is now out of work. Ridiculous, right? He has been driving me insane, and I am supposed to love him. We have even been talking seriously about divorce the last few days. I should be grateful and get on with it as best I can, instead of selfishly wanting space and time alone back. The alternative is scarey, especially as he really wants the kids.
rebecca
April 27th, 2009 @ 9:38 am

I can relate to this one. My two special needs kids aren’t medically fragile (well, compaired to other kids yes, but for special needs, no) but we also have a full time nanny/therapist in the house. We alternate between doing the doctor/therapy appointments and working with them at home. I KNOW they are getting more help than they would otherwise, and I also know that I am getting more time with my big kids to do the things that they need me to do. Lucky for me, she is helpful and kind and pretty unobtrusive (I also have a space where she can go when there isn’t anything going on…). I think some of the difference is that I am her employer directly—so she get fired if she is not fitting with the flow..I know that with the nurses you don’t have that luxury.

It is still strange to have someone here. I get it. It has become the new normal for us now though. I hope you figure out a good way to fit it in. And I hope your E manages to stay healthy. That is the victory, right?
Andrea R.
April 27th, 2009 @ 9:52 am

Thank you everyone for your comments and insights.

Traci — you have been through so much! But you’re right — “in light of the alternative.” I can always see how things could be worse.

Annette, SilverRain and Sue — trying to be Zen and realize I don’t have any other alternative is a good way to look at it. It’s hard sometimes. I look at people with seemingly “normal” lives and think, “You don’t know how good you’ve got it!”

Anon — it IS a miracle, and I am grateful every day that she is still on this earth. But the day-to-day can be a struggle. I love you and I pray for you.

Jenny — thanks for sharing that quote. It’s very true — I appreciate the good, easy times (or even when I have the chance to be ALONE) so much more!

Kay — my prayers are with you as well. The one solace I have sometimes is that my nurses really aren’t part of the family and they do go home at night. I hope things work out for the best for you.

Rebecca — yes, having someone in the house IS the “new normal.” We are lucky that they fit with our flow pretty well. Having them care for E has kept him healthier, and that is the big blessing. I just have to keep reminding myself of that!

Thanks again to all who have commented so far!
Nan
April 27th, 2009 @ 10:00 am

As I read I had the impression that the angels in Heaven are also observing, monitoring, recording. No doubt they have made record of your patient smiles even when the world falls apart, the love you have for each of your children even when you aren’t sure you are doing your very best for them, and the sleepless nights you have endured.

I cannot relate in any way, but your honest thoughts give me perspective as I contemplate whether or not to take a sick four year-old to the doctor today. Thank you.
Mrs. Organic
April 27th, 2009 @ 10:11 am

In some small way I can identify with how you’re feeling (and you put it so well). Without the help we receive from very caring individuals, my children would have a very different life. They would not have me. I would be consumed by caring for my son’s needs. Now, I can be the mom and not just the nurse.

But still, it would be nice to just be a regular family sometimes. I rely on my help, but the lack of privacy, of just being a family, can feel oppressive at times.

I really hope we get a taste of that (the just being a family part) in the hereafter. In fact, I’m counting on it.
Josi
April 27th, 2009 @ 10:56 am

While I don’t have some of the trials mentioned, there is definitely intolerable things that I butt up against every day. I’m with Annette on the “It is what is is” mentality and as I get older I’m learning more about the fact that it really isn’t supposed to be easy and I’m not doing anything wrong when life is simply not what I want it to do–it’s part of the plan, damnit anyway. Great post!
Michelle L.
April 27th, 2009 @ 11:29 am

This is beautifully expressed Andrea. I’m going to remember it when faced with my small intolerable moments. Goodness– I don’t know how you do it.
Justine
April 27th, 2009 @ 11:58 am

I know that for me, I realize how much I’ve been through only in retrospect. And it sometimes seems overwhelming that we managed at all! But when we’re in the middle of crises, there isn’t time to contemplate our ability to deal with them. It’s usually only afterward that we look back and say, holy cow how did we survive that!?

But I’m another to vote with “It is what it is” camp. Sometimes things really stink for me, and I know there’s not a darn thing I can do about it, so I try to just not think about it. Total denial. It works.
Andrea R.
April 27th, 2009 @ 12:31 pm

Michelle L. — some days I handle it better than others. Some days I feel like I have things under control and have a good balance going, and some days I try to ignore the nurse as much as possible and pretend she’s not there.

Justine, I wonder if that’s how we’ll look back on our lives after we’ve moved on to the next life! I know you have a lot of hard stuff too — it’s hard to reduce your expectations of yourself and your life when you are in a position of not being able to do what you want. We can both be Cleopatra — queen of Denial.
mormonhermitmom
April 27th, 2009 @ 1:03 pm

Whoa. That’s a challenge. More power to you.
Jennie
April 27th, 2009 @ 1:27 pm

Kay-the unemployed husband is a nasty thing. (I know it’s not as bad as having a medically fragile child and things could definitely be worse) but we went through the same thing last year. For six months all I could do was grit my teeth and just slog through it. As well as the accompanying depression and anger that go along with it. My husband and I talked about divorce, though not really seriously. I have to say, now that he’s employed and feeling better about himself that it was really just the stress talking. Absolutely nothing would have turned out better for us if we’d decided to get divorced. It seemed like a tempting alternative, though, because I was so sick of the guy.
Good luck to both of you. My prayers are with you.
Linda Jefferies
April 27th, 2009 @ 1:31 pm

Strangers took over my home while we had Hospice for my dear hubby, Bob. They never scrubbed my floors the way I do and the grout in my tile became dark. I’ve now had the time to scrub ever line of tile on my hands and knees with a tooth brush. I have scrubbed my whole house. Now loneliness darkens my home and Bob is gone. What can I trade to have my Bob back? Dark tiles, the absence of an ugly hospital bed, stinky bedside comodes, sponge bath stains on my carpet, I’ll tolerate willingly. I now welcome all safe strangers here but none cam bring Bob’s return.
Andrea R.
April 27th, 2009 @ 1:46 pm

Linda,
My heart goes out to you. I feel the same way — I know my E will pass at some time, and it will be lonely not having him, his nurse, and all of his medical equipment. I’m so sorry for your loss.
Kerri
April 27th, 2009 @ 1:52 pm

I think most of us deal with our intolerable circumstances the same way:

One breath at a time. One hour at a time. One day at a time. With a total breakdown here and there, and gratitude for angels lifting us when we think we can’t take one more step.

(And what seems intolerable for one person seems easy to another. Thinking about what some of you are dealing with makes me feel ashamed to feel that my situation has been intolerable in the past.)
Melissa M.
April 27th, 2009 @ 2:53 pm

Andrea,
I am so moved by your situation and I so appreciate the honest and sincere way in which you share your experiences. As someone who just LOVES peace and quiet and alone time, I can imagine, in some small way, how hard it would be to have full-time help in your home. My heart goes out to you in this and in all of the other challenges you are facing.
And Kay, I sympathize with you as well. Last year, when my husband approached me with the idea of having a home office so that he could work part-time from home, I was horrified. Though I love my husband, I love having the house to myself during the day, especially now that my children are all in school. My husband is even afraid to come home for lunch, poor man.
Carolyn
April 27th, 2009 @ 4:50 pm

I empathize with your situation. It must be so difficult. I am a very private person and I really don’t know what I would do in your situation. I commend your strength.

I am in a very intolerable situation, albeit not similar to yours, still utterly maddening.

I am a second wife and step-mom. The ex in this situation has Borderline Personality Disorder (http://en.wikipedia.org/wiki/Borderline_personality_disorder)
and this makes life… well, not so good, to say the least. I will refrain from too details as I know it is hard for others to understand that what I explain is absolutely true, suffice it to say that if I knew then what I know now…

This is combined with the fact that my husband was recently diagnosed as permanently disabled so we’ve not only lost his income, but he’s also lost all mobility so I am now his full-time care taker through a nursing agency.

On top of all this, I am trying to put myself through school as fast as I possibly can and still run our home. Our girls are doing remarkably well (Honor Roll, sports, etc.) considering all.

Yeah, I know what you mean by tolerating the intolerable.
linda
April 27th, 2009 @ 7:37 pm

thanks for your quick concern
Ardis
April 27th, 2009 @ 8:23 pm

My intolerable situation lasted for eight years, and I’m afraid I didn’t handle it well at all. Anybody looking at me from outside must have thought I was okay, because I kept doing what absolutely had to be done, but nothing more. Something shut down inside and for months on end I little more than a fearful robot, following a strict routine, focusing only on what was the next item on the routine. I didn’t do anything well, and I didn’t know how to do anything differently.

I ordinarily don’t gripe about that lost period in my life, but it may be worth mentioning here in case there are others reading who aren’t coping as well as some. It never hurts to know that you aren’t the only one who, by almost every measure, seems to be failing. If that’s you, hang on, if that’s all you can do. Give it time to get better, even if you don’t know what you can do to make it better.
Andrea R.
April 27th, 2009 @ 9:09 pm

I think more than anything, it just helps to know that there are other people out there that are struggling as well and things aren’t always as peachy-keen as they appear on the outside.
momnmb
April 27th, 2009 @ 10:21 pm

Isn’t it ironic that almost everyone’s life isn’t the way they would want it to be?
My marriage did not turn out like I wanted, so I trudge through it until the kids grow up. I can’t ever get this period of my life back. But I sacrifice that for the happiness of my kids. Besides I don’t really relish the thought of “the garage sale of used husbands” as a dear friend put it. I don’t think life would be any better divorced or remarried. Life just isn’t meant to be what we wanted. It’s meant to test our tolerance. In the process, we discover that we can tolerate a lot more than we think we can.
Selwyn
April 28th, 2009 @ 7:08 am

I cope in small ways and bigger breaths.

I have chosen to do what I can. I hope to do what I’m not sure I am able to achieve. I choose how I respond, and try not to react.

I remind myself over and over that this too shall pass. I trust that the Almighty God is almighty, and He loves me and mine, and as such it will all work out.

I imagine and look forward to the day when He shows me the hows and the whys and I finally see the whole picture and cand and will say “Oh! NOW I get it!” I bet it’s going to be an amazing occasion.

I have friends I can talk to who don’t want or expect me to be strong, capable and inspiring. They want to know how I’m really going, and bug me until I tell them, or change the subject when I tell them to shut up already.

Whatever works, works.
Kathryn Soper
April 28th, 2009 @ 1:15 pm

Thanks for this, Andrea. It really helps to remember that all around me there are people bearing what seems unbearable.

A friend once asked me what I do when I feel like I can’t go on. I told her how I mumble to myself to comfort myself. “It’s okay, it’s okay” I tell myself, over and over. Out loud. Like a crazy woman. Because that’s basically what I am.

Then I asked her what she does. (She’d recently lost her firstborn child to cancer at age 3). She said, “Whenever I tell myself ‘I can’t do this,’ I ask myself, ‘okay, what can I do?’ and then I do it.” She was talking about simple things, little coping mechanisms to give the mind, body, and heart a course of action that feels manageable: I can take a bath. I can call a friend. I can shut the bathroom door and cry for 10 minutes.

Now I do the same thing. There’s something soothing about filling in the blank, “I can . . .” It’s not necessarily the thing itself (taking the bath, calling the friend) that helps the most. It’s the process of identifying something I can handle and making it happen. That little snippet of choice, action, and power is so important in the midst of an intolerable situation, even if the “I can” is something pretty ridiculous. Not long ago when I was in the middle of a pronounced depression I would tell myself, “I can lie down on my bed and look at the wall for a while.” Self-comforting is vital to survival.

I also continue to talk to myself. (This morning I required a couple dozen “It’s okays” before breakfast was even over.) But that would be harder to do if I had a nurse watching me all the time. She might write me up!
Melissa M.
April 28th, 2009 @ 4:52 pm

Such wise advice, Kathy!
kik
April 28th, 2009 @ 7:03 pm

I try to remember the quote:

“All your losses will be made up to you in the resurrection, provided you continue faithful. By the vision of the Almighty I have seen it.”
– Joseph Smith, Jr.

It does comfort me. Joseph Smith SAW that our losses will be made up to us. It’s nice to know that Heavenly Father can and will make it better…eventually
dalene
April 28th, 2009 @ 9:27 pm

Lovely post Andrea. Thank you. I appreciated all the comments, too. I want to sear Kathy’s advice in my heart so I will never forget it. “What can I do” is the operative question for so many of the situations life presents us with.
Andrea R.
April 29th, 2009 @ 4:47 am

I just wanted to thank everyone again — so many lovely comments. I appreciate all your willingness to share your hard things.

That is great advice, Kathy. I’ve become good at identifying things I can handle and things I can’t in a given circumstance, and have become willing to just let them go.

Kik — that is always my hope.
Heather O.
April 29th, 2009 @ 6:36 pm

This is such a tough situation. I’m speaking from the other part of the equation, as somebody who lived with a family who wasn’t mine to do exactly what you described—suction a trach, reposition, feed, bathe, dress, observe the family in all levels of hygiene. I ate their food, slept in their bed, read books on their shelf, used their dishes, left hair in their shower.

They were a good family, a strong family, and they knew they needed me. But I was not the older sister, I was not their daughter, and even though they were kind and loving towards me, my life was not important to them in so far as it extended beyond the walls of their home. Their life was consumed by the care of their children,as well it should have been, and ultimately I was expendable, just like any other nurse. And yet I had to live like one of the family. It’s a delicate, difficult balance to maintain.

One of the things that helped the most was communication. If I could do things different, I would have talked to them more about how I felt about things. And, I would have listened more to what they needed from me. I probably would have done more, but again, it’s hard to figure out exactly where the line is—should I mop, vacuum, dust, AND make dinner, AND do all the dishes, AND suction their son’s lungs? The lines blurred, and resentment was sometimes strong (on both sides). I think better communication could have solved some of that. I also know that they lost some PCAs who felt underappreciated and attacked. Again, better communication from everybody could have made things smoother. Clear expectations and good follow-through are always good things.

Still, having somebody who is not a member of your immediate family in the house all the time is awful. Hopefully you can carve out some family time with just you guys.
Andrea R.
April 29th, 2009 @ 6:52 pm

Heather,
I REALLY appreciate your comment — I was hoping someone who had been a live-in care giver would respond. I have had to work on my communication skills rather than just expecting them to read my moods and the tone of the house for the day. I’ve had to specifically say, “Please don’t do the dishes or the laundry,” and other things like that. I end up feeling like I need to tell them where I’m going at every moment or explain why I’ve had to discipline my child in a particular way. Some days, I just want to ignore them and have them ignore me. But you are absolutely right — communication about expectations is vital. I hope we can chat about this more!
Leslie
April 29th, 2009 @ 7:18 pm

I think it is the strange forced intimacy that is so hard to handle. I don’t know how I would live in that environment. I often wonder about these situations across the lifespan- what would it be like to be the dependant person never on your own schedule always at the prodding of others. A difficult family distruption for sure.