Thursday, January 22, 2015

Couples Getting Healthier Together

From an article in Medical News:


"People are more successful in taking up healthy habits if their partner makes positive changes too, according to research published in JAMA Internal Medicine today (Monday).

Scientists at UCL funded by Cancer Research UK, the British Heart Foundation, and the National Institute on Aging looked at how likely people were to quit smoking, start being active, or lose weight in relation to what their partner did.

They found that people were more successful in swapping bad habits for good ones if their partner made a change as well.

For example, among women who smoked, 50 per cent managed to quit if their partner gave up smoking too at the same time, compared with 17 per cent of women whose partners were already non-smokers, and eight per cent of those whose partners were regular smokers.

The study found that men were equally affected by their partners and were more likely to quit smoking, get active, or lose weight if their partner made the same behavior change....."

Have you found this to be true in your relationship?  Do you and your partner support each other in developing better health?

I have found that my partner and I do indeed support each other in exercising regularly.  But the influence doesn't extend much beyond that.  We continue to stick to our own patterns in other areas, like eating habits.

And when it comes to dealing my pain relapses -- he suggests, but I do it my way.  Do you and your partner influence each other when it comes to dealing with illness and pain?

Monday, January 12, 2015

Help for Someone Drowning

I received the comment below on my blog posts entitled:
Caregivers and Suicide.   The author is drowning in her efforts to care for her two seriously ill parents; and this is taking a toll on her relationship with her partner.

My guess is that many of you can relate to her situation -- whether you are caring for parents or a partner -- the experience of losing yourself and your lifeline is a familiar one.

Do you have any stories about your own experiences and thoughts about how to cope you can share with Anonymous and with all of us?

Here is Anonymous' comment:
Anonymous said...
I can relate. I have become physically ill from caretaking. Parents in 80's .mom beginning of dementia. Dad is 88 and barely going. We are at a breaking point. I cannot afford nurses, she chased any we had because she was so combative. She is combative to me. She now took several heart attacks and may become bed ridden. If I lose my job, we will lose our house. My fiancé is at the end if his rope. Our relationship is in trouble. I can't afford for them to wipe us our financially but she needs residential skilled care. I am physically becoming a fatal stroke case and I need help badly.

Monday, December 22, 2014

When Illness Turns Your Relationship Upside Down

When we were interviewing couples living with illness for our book (In Sickness As In Health: Helping Couples Cope with the Complexities of Illness), one phrase we heard over and over about the impact of illness on the couple relationship was:

"A partnership of equals becomes one of patient and caregiver."

Pre-illness, each partner does have roles he/she plays in the relationship.  One person may deal with the financial while the other deals with the emotional.  One person may be the planner, while the other is the spontaneous do-er.  And of course these roles are not immutable.  They are preferences, and either person can most likely undertake any role - but each person has his/her comfort zone.

Illness disrupts the established order of routines and roles.  The ill parter may not be able to buy the groceries, keep the household budget, or even keep working.  The well, caregiving partner takes on not only these extra chores, but may also need to help the ill partner manage the physical and emotional impact of illness.  The well partner may need to help the ill partner dress, bathe, get to doctors' appointments, while also boosting the ill partner's hope and holding the ill partner when he/she despairs.  And while taking all this on, the well partner is also coping with his/her own overload of exhaustion and anxiety.

So how can a couple whose equilibrium has been overthrown by illness and replaced by an imbalance of dependency still be a partnership of equals?

Here are some suggestions:

  1. The ill partner should try to stay as close to "normal" as possible.  Do what you can do, while taking care of yourself so you don't overload and wind up paying for the exertion.
  2. The well, caregiving partner, as hard as it may be for some, needs to ask for help.  That help can be in the form of having friends/family/others pitch in to do chores like laundry, meal preparation, chauffeuring.  Helpers can also carry some of the emotional load - yours and the ill partner's - by sitting and listening.
  3. While the ill partner may not be able to do activities, she/he can try to be emotionally present and supportive to the caregiving partner.  Often being is more important than doing.
  4. The well, caregiving partner should not get so caught up in doing that he/she neglects the being part.  If both partners can be emotionally present for each, other loads will feel lighter.

The illness can foster a relationship between partners that is one of an overfunctioning well partner taking care of a dependent ill partner.  If the partners can find that emotional connection that binds them, they can each do their part to sustain it, as equals.  This is one way of restoring the balance illness upsets.

Of course, not all partners can find that emotional connection.   It may never have been strong enough or may have weakened over the years and turned to animosity.  Ot the long haul of chronic illness may have eroded it.  What can partners in this situation do?

One approach may be to try to rekindle that emotional bond.  Some couples find that illness has the power to slice through the resentments and the noise and help the them focus on the essential - the love they shared and the compassion they can still feel for each other.  Working with a therapist can help.

Others who don't find love when they search their bedrock may need to buoy themselves with the love and support of friends and family.  Filled with this support, the partners may be able approach each other with kindness, if not love.

How have you been able to be both partner and caregiver/patient?  Have you found a way to hold onto a relationship with you partner that is balanced, or has illness made that too difficult?  I'm interested in  your experiences.

Wednesday, November 26, 2014

Thanksgiving Flare Up

It seems that my pain tends to pick the holiday season to remind me of its presence.  I have learned not to call these episodes relapses, but rather to call them flare ups.  The connotation is that if something can flare up, it can slide back down.  Whereas relapse implies defeat.

Thanksgiving requires gratitude.  My inbox is filled with messages from airlines, charities, clothing stores, shoe stores -- all letting me know what they are thankful for, mostly for my patronage.  So, how can I find something to be thankful about while in the middle of a relapse....oops, I mean flare up.

I recently read a blog post that contained this gem:
"...once you reach a level of healing, no matter the intensity of the flare, your body can, and will get back to that level."

This solves my gratitude dilemma. I am miserable and yes, angry, that I am having a flare up.  But I am indeed grateful that I know what it's like to be without pain, for months at a stretch.  And I am hopeful that I will get back to that place of ease.

I am, of course, thankful for my sweetie, Richard.  He is the one who reminds me that "that was then (unrelenting pain) and this is now (mostly OK, with some flare ups )."  

I wish you all Thanksgiving with a lot to be thankful for.  And I'd be interested in hearing what brings out your gratitude.

Thursday, November 13, 2014

Being Together.....Apart

Richard is on the west coast; and I am on the east coast.  And of course, my pain picks the week we are apart to exercise its right to flare up whenever it wants.

Richard is an essential part of my coping strategy.  I can just be in pain with him without having to pretend I'm doing fine.  He asks me, "How are you?" I answer, "Not good."  I don't say that to my work colleagues or my outermost friends (my innermost friends I tell).  To them I say, "Not so bad," or "Pretty OK."  I don't want to have to explain anything to them or accept their sympathy.  It's easier not to tell the truth.

I also count on Richard to remind me that this is just a flare up and not a cataclysm.  That I now have tools at my disposal for coping with pain that I did not have ten years ago.  He needs to remind me of this because when I have a flare up, time collapses, and my pain PTSD awakens.  And ten years ago becomes ten minutes ago, and my fear in the present is overburdened with memories of the darkest times when pain had no limits.

And I count on him to make me laugh and to annoy me and to be so sweet that I get overwhelmed.  He is my bedrock, and it's hard to have pain visit when my bedrock is 3000 miles away.

But then I remember that bedrock doesn't get lost when there's geographic separation.  Bedrock is ubiquitous.  Bedrock persists and can support me, no matter where or when.

And Richard sends me texts throughout the day - telling me about the ham and cheese croissant he ate, and about the small red dog who looked like our old dog; and that he is sending me his strength and love to lean on.

How do you and your partner manage to cope with illness when one of you is away?  How do you be together when you're apart?

Saturday, November 8, 2014

The Caregiver

I'm about to give a talk to a group of family/friend caregivers and decided to look back into this blog's history to see if there was anything I could include in my talk.  I found the piece below.  It took me back a year and a half ago when Richard, my sweetie, had open heart surgery and I went from being the designated patient to becoming his caregiver.  I realized then that, if I could choose, I'd rather be the ill partner than the well caregiving partner having to watch my beloved suffer and be unable to make it all go away.


Over the past ten years, I have talked to many caretakers of ill partners. Many have been angelic; many have been depleted; all, in their own ways, are heroic. Here is a montage of what I have heard. I am interested in what you have to add from your experience

How profound and humbling and degrading to prepare bland, easily digestible foods and spoon feed them to your partner who on that day at that time is too weak or feverish or pained to be able to feed himself. To wipe the sweat from his face after rounds of chemo. To maneuver him into the shower and wash the urine that leaked down his legs from a bladder no longer control in his control. To run to his side when he calls out, fearing that, this time, something really bad happened.

How sacred it feels to read aloud to him from his favorite novel until the strain etched in his face by pain slowly softens, and he slides into sleep. To hear him snore is the sweetest song.

How desperate and hopeful and tedious it feels to discuss endlessly the algorithms of treatment options. Should we (not you) stop this medication, which seems to be losing momentum, and switch to that medicine, which has untested side effects? Should we travel to Johns Hopkins or the Mayo Clinic or the Cleveland Clinic to see the specialist whose monograph on gene therapy or angiogenesis we stumbled across in one of hundreds of web searches? Would it be bad or good to combine acupuncture, Chinese herbs, and chemotherapy? How do we know whom to trust?

How rageful it is to lose the time you were supposed to have, the money that was to build a retirement cottage on the lake, the thousands of moments that were supposed to flow without constraint from one mindless activity to the next.

How tragic when your sacrifices are met with indifference, resentment, or manipulation. When family and community expect you to sacrifice endlessly for his comfort and safety. And when you berate yourself for an instance of selfishness, and eventually have been worn so thin that you can no longer distinguish between selfish and selfless.

How profoundly sweet it is to know that you are helping, you are making his life worth living, even though you can't make him well.  You are making him better.  How very special it is to have found that, through illness, you have been able to rediscover how much you truly love each other.

Saturday, October 25, 2014

12 Things a Marriage Is

This list is from a piece in the Huffington Post.  I think it applies to all couples who are in a committed relationship, not just formally married ones.  I have highlighted the items that are relevant to those of us living with illness in our relationship.

12 Things That Marriage Is:
1. Marriage is the potential for an intense, deep and diverse intimacy. Sexual. Emotional. Relational.
2. Marriage is knowing someone has your back. Always. You have theirs. It's about interdependence.
3. Marriage is realizing that you have been seen in your worst times, and that you are still loved. There's an overriding sense of gratitude and security.
4. Marriage is sharing old jokes. Or some story that may be told over and over but it still makes you laugh 'til you are left gasping for breath.
5. Marriage is getting teary-eyed together.
6. Marriage is thinking about the other one not being there anymore. And not being able to think about it.
7. Marriage is getting irritated by the things that always irritate you. Have irritated you for 24 years. Will irritate you for 24 more. And tolerating it because it is way overbalanced by the good stuff.
8. Marriage is not being able to wait to get home to share some little something.
9. Marriage is wishing you were the one having the operation. Or the illness. Not him.
10. Marriage is sometimes fighting. Trying to slowly learn to fight more fairly. To apologize. To listen. To learn. To find resolution.
11. Marriage is about vulnerability. Giving someone the right to hurt or disappoint you. While simultaneously giving that someone the opportunity to bring you tremendous joy and laughter.
12. Marriage is a promise. A vow. To try the hardest you have ever tried in your life. Marriage is a place for the achievement of a personal integrity like no other.

#6 and #9 really hit home for me.  

#6:  I know I should become more competent in some of the areas Richard has expertise -- like setting up a universal remote for the TV, programming our Nest thermostats, keeping meticulous financial records on templates he designed.  But every time I think of approaching him for lessons in these areas, I back down.  Not because the tasks are onerous for me (although they are), but because my taking them on foretells a time when Richard is not there to do them himself.  And I can't bear thinking about that.

#9:  Sixteen months ago, Richard had open heart surgery and I got to be the caregiver, for a change.  I was not exhausted by the tasks I had to do.  Nor did I feel the least bit burdened.  What I could not tolerate was the depth of my own helplessness -- no matter what I did, I could not make him better, nor could I force his pain to go away.  I realized I'd rather be the patient than be the caregiver unable to cure my sweetie.

What are your thoughts about #6 and #9?  Do you ever imagine losing your partner? Do you ever wish to change places with your partner (whether your the ill or well partner)?