Tuesday, August 16, 2011

The Naked Spouse

Do you know what a spousal caregiver is? No? - I have something to share with you, most spousal caregivers are not aware of the terminology either and if they hear it, they think it means something for someone else.  Not them. 

Also, take your time reading because this post is not meant to be condensed into a bumper sticker slogan.  You deserve more than 750 words if you are new to this and a heck of a lot more if you have been at this for decades.  Relax and read, you are in good company. 

Are all caregivers the same? 

Yes, and No - everyone has a set of dynamics that are completely different.  The sandwich generation that is raising kids, working, and taking care of elderly parents who suffer from mobility or cognitive issues, deals with a situation that is different from someone whose elderly parent has been diagnosed with cancer and must undergo treatments.  

There are caregivers who take care of a sibling who suffers from a brain injury or developmental disabilities.  There are caregivers who take care of adult children with varying degrees of autism, mental retardation, mental illness or physical disabilities.

There are more resources available to these groups that is not available to spouses: Support groups, home health caregivers, and residential assistance or group homes are some of the resources available, as well as Medicare, and financial resources that are not tied to anyone's income or resources.  

Another big issue is respite care.  This is not available to spousal caregivers because no one seems to think they need it.

Aside from the above mentioned, caregivers across all platforms spend countless hours worrying and doing on behalf of others.  Dealing with bureaucrats and fighting for the rights of their loved ones.

What is a Spousal Caregiver? 

When  you first get married you may utter the words "for better or for worse, in sickness and in health" and you move on.  You are young, you are a beautiful couple and everyone loves you.

They can't help themselves, love is contagious and you two remind the older ones of their younger years and how deeply they still feel for one another.  The younger set envisions making that trip down the isle and be as happy as you two seem to be.  Life is beautiful, you are beautiful and you love your life. 

The Naked Truth 

A tragic accident turns your world upside down.  The urgency of the situation is so dire that your entire being jumps into hyperactive mode.  You speak for her to the doctors, you research treatments, medications, surgical procedures and alternative medicine.  

You adjust the way your home is setup, so he/she can move about comfortably.  You get a chair for the shower and you don't think twice when you have to wipe her behind or wash his private parts.  Why? because "someone" has to and you are "someone." 

Not only that, but remember those little words you uttered on your wedding day?  - EVERYONE will hold you to them, and I mean EVERYONE.  Including yourself.  We have been programmed that "he is your husband, it is your responsibility" and "she is your wife, it is your duty." - When your spouse becomes physically dependent on you to be able to carry on with his/her portion of life, YOU ARE A SPOUSAL CAREGIVER.  - No, I am not shouting, I just want to get your attention because you are too bombarded by all she/he needs to pay attention to anything else.  And pay attention you must if you are in this "Until death do us part" not "until the divorce papers dry up."


Forget about all the plans you made because now it is the time to really know what "one day at a time means" - You live for today and hope for a better tomorrow.  You will know a level of exhaustion for which you had no frame of reference or training.  

You are living life for two people, or more, if you have children.  Everyone's needs are YOUR responsibility and personal time is something you will have to carve out and insist upon if you are going to retain a sense of humor, a smile, and a quality of life you find acceptable.

Spousal caregivers become cape crusaders who advocate furiously on behalf of treatments for their spouses. Fight with insurance company, lawyers and Medicare.  They protect their spouses from the nasty comments from the extended family and forget that they too, are getting older, will have medical issues of their own and that stress can kill.  - Don't worry, it does get better.  Just not right away.

Spousal caregivers forget to eat, can't sleep and spend hours at night fantasizing of things going "back to normal."  Why at night? - Because that is the only time when no one is asking anything of them and their brains rage furiously through the "to do lists" and how to maintain the same lifestyle they embarked on by doing "more" and "better."

No, you are not Superman or Superwoman, you are a human being doing it all without any help and relentless demands on your time and energies.  You do it gladly because you love them.  Period, end of sentence.  

That is the only reason anyone would ever endure decades on end without relief - If you don't love them and you are still doing it, I surmise you are just insane or an bona fide angel vying for sainthood. 


Are you nuts? - Well, maybe not.  You may be one of those whose entire extended family rallies around and pitches in regularly.   You may have the in-laws from Heaven who compete for Halos with your own side of the family.  If that is your situation, stop reading unless you want to know how truly fortunate and blessed you are, and how different life is for others in similar situations.

The most common issues:
  • Extended family are the first ones to tell you it is your job because you married them.
  • Your extended family will either tell you to dump your spouse or expect you to do everything as it always was, because THEY DON'T LIKE CHANGE. - After the initial shock of something "bad" happening, they go back to their lives.  
  • If your spouse is in a wheelchair, must use crutches, suffers from chronic pain or mobility issues, you will still get the bedroom at the top of the stairs during the holiday celebrations and annual gatherings, because "that is the way things have always been" - How is she going to make it up those stairs? - that is your problem Superman!
  • Is your darling husband on a restricted diet because half of his intestines have been cut out through several surgical procedures? - You are guaranteed a relative who thinks it is all in his head and he should make the effort to not be such a Prima Donna.
There are other things that will drive you up a wall:

Insisting that you drive hours so they can visit with their son/daughter at someone's birthday celebration and refusing to understand  what is so darn difficult about you spending hours sweating bullets getting them, their medications and equipment ready.  What is several hours of driving, getting them settled, and then doing it all in reverse a few hours later?

They know full well that she is in a wheelchair but won't even bother putting up a temporary wheelchair ramp and are miffed you can't manage the few steps up to their house or that the wheelchair does not fit through the home interior doors. - somehow, you are to blame.

She has MS and Chron's disease and the medications are making her a zombie who can sleep 23 hours a day and someone, yes, someone will say:

"Have you tried Ju-Ju beans from the African Coast? I heard they cured someone's cancer in Brazil." - the first few times of "have you tried...?" will generate a complete explanation on your part of all  you have done for her/him, what doctors you have seen, how many therapies you have tried and a collection of all the medications she is on, what they are for, how often she must take them and what the side effects are.

After a couple of years of doing this, you become monosyllabic and grunt a lot.

"Have you tried ________" - Uhm, yes.
"Have you thought of seeing____" Uhm.. done it.
"Holistic medicine works and will cure ________.  A friend of a friend in my sister-in-law's prayer group was blind and now she can see." -  Uhm... that's great.

You may also stop answering the phone or passing it quickly to your spouse so they can deal with their own side of the family.  

Your spouse will tough out their condition in front of others and you will get a reputation for making a mountain out of a mole hill.  This behavior is typical of someone who is dealing with a chronic and permanent condition.  Learn to deal with it, because it could take decades to change. 

More so, if the person we are talking about is a man.  Showing weakness is a sin to them, being viewed as "less than a man" hurts them more than the pain they endure on a consistent basis.  They will be funny, agreeable, charming, pleasant and do more in the presence of "company" than they will once they are home.

This last part is going to drive you nuts and you will want to strangle them until one day you realize what is happening and you let it go permanently.

What happened? - At first you will be baffled, you might even argue about it, you will be resentful and then you realize: Your spouse is spending physical capital reserves they can't afford in order to fit in with the rest of the population - Home is where they are safe, you make them feel safe - and this is where they collapse into their disability. - Let it go, let him have his "normal" moments and learn to roll with it and enjoy those times too.

Would you like to know what else is going to drive you nuts? - Whenever they are in the company of others, someone will pull you aside, give you a quizzical look that indicates "you have been lying, explain yourself" and say: "She looks really good!" 

My Stock Answers:

"Yes, he does.  He is having a "good day" - That's it, no further explanation required.

Refrain from saying: 
  • He/she is disabled not dead. (actually this is pretty good, I have used it, but the look you get may be more than you can bear)
  • He/she looks good after I spent 5 hours getting them ready to go out the door. (they don't get it, so don't waste your time)
  • It is an act and she won't last another hour. (This serves to demoralize your spouse, don't do it)
  • You are a moron. I have explained it all before and your are too stupid, thickheaded or ignorant to want to understand anything that has been said to you about her condition for the past five years. (If this is your mother-in-law, hold your tongue, no matter what you do, it is never good enough for her baby)
  • Shut the hell up and leave me alone. (see above)
  • You think this is easy? You have her come and live with you for one year. (don't say it, it won't happen)
  • F** U & your entire clan. (only if your spouse agrees with you and she/he says it first)
At some point you may say to yourself that you are done and you will only handle what is really important.  This is the time when you have fully grown into your own as a spousal caregiver and as a new person, even if sometimes you look in the mirror and wave to your old self or don't recognize the reflection. 

This is the part when it all gets better (if you want it to be)
  • Schedule time that is just for you.  If you think this is selfish, so be it.  No doctor or nurse is on duty 24/7/365 - you should not be either.
  • If your spouse is bedridden, you need respite from someone.  If there is nothing available in your area and you can't afford quality home-health aides, you need to TRAIN a relative for a week and take them up on their offers of "If there is anything I can do..." and allow them to take care of your spouse for two weeks.  
  • You need to LEAVE town.  Don't stick around the house or you'll be catering to your "helper" as well.  Take your kids on an active vacation because they are NOT disabled and neither are you.
  • Research every social program in your community, State and Federal government available to your wife/husband and USE IT.  Your wife/husband wants to be just that, not your patient in perpetuity.  You do too.  Let others do what they get paid to do and make your life less stressful. 

Spousal Caregivers Are NOT Saints

You are a human being, not a martyr, so don't fall into the trap of putting life on hold in perpetuity on behalf of the disability.  Keep communication frank and open with your spouse and make a pact that the disability will be given the amount of attention it deserves and not an ounce more.  The rest of your life belongs to the two of you. (or more, if you have kids).

When someone says: "I don't know how you do it" - You say: "It's just life and everyone needs to adapt" - You don't have to explain anything.

When someone offers to help you out... LET THEM.

When someone says: "you do too much for her, you should take care of yourself" - You say: "What would you suggest and how can you help me do that?" - They either help you, or shut the hell up.  Either way, you win.
The Attention Getter 
You may have a spouse that loves the attention and milks it for all it is worth.  Let them. There is nothing you can do about it in front of company, but there is a lot you can resolve by going together to counseling and forcing her/him to see you as a human being - not as a clinical aid.

If you had a lousy marriage before the disability, it is unlikely your marriage will last long after diagnosis.  Guilt trips, blame and problems that were there prior to the diagnosis will be magnified and compounded.  Do you want to get out? - Think it through and if that is your final conclusion, go right ahead.

What? Leave? Divorce? Separate? - Yes, you can.
Get the hell out. 

Make the decision that you are either into this with both feet or you are out.  Getting out will save everyone a lot of grief and allow her/him to live a life without resentment on your part.  It is not cruel to admit you can't do it, it is perfectly fine and honest.  NOT EVERYONE is cut out for this lifestyle for decades on end.

At the onset of a chronic illness or disability, most marriages end in divorce within a year.  Period.  This is true of disabilities that will go on for decades and the couple is fairly young.

Disability and chronic illnesses are not the domain of old people, a car crash in your early twenties will put you both in the driver's seat of uncharted medical waters that is too much to handle. 

You may want children, a "normal" life, social activities, friends, vacations and most of all, no stress.  It is okay to get out.  really, it is.

Marriage is not meant to be indenture servitude and should be a strong relationship in which both partners benefit and thrive.  Many couples will continue to thrive because their relationships were healthy and strong prior to the condition, not because it got that way after diagnosis.


You will be called every name in the book by your out-laws and your ex-wife or ex-husband because you promised "in sickness and in health" and you bailed out.  But after the sting wears off and you have a normal life, you will be just fine.

No one understands that "for sickness and in health" was easy to achieve in the Middle ages where men died of infected wounds in a matter of months and women died at child birth.  In this day and age, a sickness or chronic illness can last 50 years or more with a continuous roller coaster of declines and continuous crisis.

Benefits of getting out:
  • You won't be financially and personally responsible for all her medical care.
  • You get to have a life that is not tied down to his moods, medications and declining health issues.
  • You get to take care of you.
  • He will qualify for more medical services and in-home health care than if you are married.
  • She will have relatives willing to help out that you won't see when  you are married.
  • He can get married to someone who knows him in this new way and has no previous expectations.
Stay and Shut the Hell Up (or not) 

Everyone will expect you to stay and not complain (after all, it is YOUR lot in life).  Complaining to them is like talking to a wall because in their mind, your job is to make sure your spouse is doing fine. 

Remember: everyone sees the wheelchair but no one sees the person pushing it.

Grit your teeth when you go out on her "good days" and some JERK parks his car in the handicapped stall, or parks his car in the striped section next to the handicapped space.  - They don't care or understand that the striped section is designed to get disabled people out of the vehicle safely. 

Expect your sense of humor to become warped and surprised that both you and your spouse enjoy it.  No one else gets it, but neither one of you cares.

Be amazed at how normal your life really is because  you have adapted to the "good days" and "bad days" beautifully.

Your kids are well adjusted, intelligent, caring, loving and empathetic.  The teenage years are not a pain in the behind, but a source of sorrow at how fast they have grown and what great people they have turned out to be while you were semi-watching.

Your parents and siblings finally "get it"

One day someone ask you: "How are you doing?" and you become mute.

Expect the medical community to ignore  you completely until there are instructions on how to care for  your spouse at home for the rest of her life.  At that point, they will, depending on the severity of the situation, insist that you take classes on caring for someone with her/his condition.

A spousal caregiver once said: NO! if it is illegal for me to do it for a total stranger, I should not be expected to do it for my husband.  - She was threatened with being reported to social services and in the end, she prevailed and her husband got the in-home health care he needed and she was free to be what she wanted to be; His Wife.

There is a huge difference between medical conditions.  Some of us are "luckier" by comparison since our spouses can lead a more "normal" life, but others are bedridden and the "healthy" spouse is working to bring home the bacon and maintain the health insurance he/she so desperately needs.  

Fears abound: 
  • "What if the house catches fire?" how will she get out?
  • "What if he falls and lies there for hours?"
  • "How to get her meds on time?" "His food?"
Methods used: 
  • Cell phone with programmed buttons.
  • Laptop by their bed.
  • Medication alarm and dispenser.
  • Checking in throughout the day.
  • Hourly caregiver a few times a week (this is the subject of another long blog - sorry)
If you are new to understanding what a spousal caregiver is, I want you to get your feet wet and join a great forum.  You don't have to post, just sign up and read.  You will realize that, as their motto says: "You are not alone." The Well Spouse Association can help you cope, develop skills and offer support and resources you may not find in your current location. There are tons of forums dedicated to the illness and the patient.  This forum is just for you.

Learn early on from other people's experiences and draw a line of what others should be doing for your ill spouse because you married them to enjoy life together and weather the storms as they come, but you did not sign up to be treated like the hired help by the medical community.

Next Blog Post: The Naked Doctor
Related Post: The Naked Patient

Image: photostock / FreeDigitalPhotos.net

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