Intimacy & Chronic Illness

Changes in a couple’s intimate life are expected as we grow older. The fires of passion experienced in youth evolve into burning embers that take a bit of fanning now and again to ignite. But what happens when those changes happen suddenly or as a result of an illness? For some couples, changes in intimacy can be devastating to their overall relationship. Or, depending upon their attitude, the changes can just be another hurdle that needs to be jumped together.

From my own personal standpoint, the changes in intimacy were probably the most horrendous to overcome. Those familiar with Dr. Gary Chapman’s 5 Love Languages will understand when I say that I am bilingual. My “love languages” are acts of service and physical touch. So when my husband became disabled and no longer could do as many “acts of service” and the amount of “physical touch” was decreased I felt lost and unloved. It was especially hard during the months that he’d be hospitalized and I’d find myself unable to sleep alone.  A lot of recovery time was spent on his Lazy-Boy in the livingroom as it was too painful to attempt to lay flat. Even when we’d make an attempt at cuddling it always felt awkward as we struggled to find the right position to both be comfortable.

And then there was the “ick” factor. He developed an abscess that measured 13cm x 13 cm and for 14 months had a drain stuck in his flank. It was a post-op MRSSA infection. So between not having a desire to get MRSSA myself and the puss draining from his body I can honestly say that during that period I was grateful to be sleeping alone.

Add to that the guilt I’d experience “the day after” when my beloved would suffer in pain or be extremely fatigued. Some relationship experts will suggest scheduling a rendezvous on the calendar for busy couples who need to build into their relationship. In our case, recovery time needs to be factored in, too!  Knowing the reason behind his pain often causes me to feel selfish and annoyed at myself for letting passion rule.  Many times I have tried to tell myself that we need to forgo a physical relationship in order to avoid his discomfort afterwards. Fortunately my husband is able to persuade me otherwise without much effort.  LOL.

So over the years we have had to deal with medication affecting libido, pain, fatigue, guilt, separation, less opportunity, aging, etc. It has not been easy.  However, we have also learned to be patient with one another and remember that “Not tonight, dear” is not a personal affront. Instead, we anticipate those precious moments together grateful that our devotion to one another has survived all that life has to offer (the good and the bad!).

Be willing to try talking things out. Chances are your mate is feeling just as perplexed by the changes as you are.  You CAN achieve a balance where you both are satisfied both physically and emotionally and emerge stronger than ever in your relationship.

Relieving Caregiver Stress

Chronic illness and disability affect all members of a family, not just the person suffering from the condition. Typically, one person assumes the role of caregiver and as such assumes much of the responsibility of the household. For many, this role is assumed without fanfare as it is only natural to have a desire to help the one(s) we love and to keep the home fires burning. Too often, however, the caregiver will find him/herself drifting toward caregiver syndrome, also known as caregiver stress, without even realizing it.

Caregiver syndrome is only recently being recognized as a by-product of the increasing demands that are associated with long-term care of a loved one. It is not uncommon for the caregiver to feel resentment or depressed.  One might feel completely overwhelmed and alone, be irritable, have problems sleeping, neglect one’s own health needs, feel anxious, etc.  Juggling the needs of the disabled or ill spouse, a career, household duties and all of the demands of day to day living can create a situation that can adversely affect the caregiver’s health and the health of the relationship in general.

It is strongly recommended that the caregiver find avenues to relieve some of the day to day stress associated with caring for a loved one. It is important to take care of yourself. Some ways to do that are:

• develop a support system of family, friends or church family. Do not try to do it alone
• communicate with your spouse and other family about your feelings and needs
• prayer and meditation
• physical exercise (walk, garden, go to the gym, swim, etc)
• continue to have your own hobbies or interests even if it means doing so without your spouse participating. Plan a day trip with a friend.
• get regular check-ups
• have a special place in your house as your “quiet spot” where you can go to regroup and get away from the chaos, even if for only 20 minutes at a time
• learn to change your expectations and work toward acceptance of the situation
• speak to a counselor or pastor or join a support group
• educate yourself about the condition(s) your family member suffers from
• forgive yourself if you come to the realization that it is no longer possible for you to maintain adequate care of your loved one without outside services or potential placement in a care facility. Do not be a martyr.
• Share special moments with your loved one each day, even if it’s just a quiet cup of coffee together while listening to relaxing music
• Cry. Punch a pillow. Call a friend. Pray some more. Don’t give up!

Too often couples will ignore the signs and symptoms of caregiver stress until it is too late. It is essential that the parties involved learn to work together and understand that the illness affects each of you in a profound way. Remember that the illness does not need to define you or your relationship.

Do's and Don'ts for Hospitalization Support

My family has reached the "expert" level when it comes to handling major hospitalizations. Each time a crisis hits, I hear the well-meant refrain from kindhearted folks who simply say, "Call me if there is anything I can do."

Face it. I am not going to call. It's not that I don't need assistance. It's not that I don't appreciate the offer. It's just that it is too burdensome to pick up the phone sometimes. 

It's daunting to try to remember precisely who casually said, "Call me." And I hate to inconvenience people. Everyone is busy, after all, with their own obligations. Besides, it takes precious time to call around. I am certain I am not alone in thinking this way.

Here are some simple, practical suggestions that may help YOU as you help others in a crisis mode.

§  Instead of saying, "Call me if I can do anything," identify a need and just do it. It is better to say, "I can pick Joey up at school on Tuesday and bring him to practice," instead of "Call me if you need anything." Be specific in your offer to help. What are you willing to do? When?

§  Fresh fruit, cold cuts, bread, milk, paper plates and bowls are all things that will be appreciated by family that's commuting back and forth to the hospital or who has someone home recovering. Caseroles or meals that can be reheated are appreciated. If you don't have time to cook for your friends, order a pizza to be delivered to their house at a time you know they are home.

§  Patients discharged from the hospital often need prescriptions picked up or medical equipment (such as a shower chair) and it is difficult for the caregiver to get out to obtain them. Offer to stop at the pharmacy or to sit with the patient so the caregiver can do it. 

§  Does your friend have pets? Pick up some animal food. If you are comfortable doing so, offer to stop by the house to walk the dog while your friend is inpatient and continue to do so, if possible, immediately following discharge. 

§  Laundry tends to pile up. As someone who has had to buy new underwear during a family member's hospitalization I can attest to that! Spend an afternoon at your friend's home and wash some clothes. Or, bring it home to your house and return it the next day or so.

§  Do you like yard work? Mow, rake, pull weeds (whatever needs doing.)

§  Is it the time of year to tune up a snow blower? Cover a pool? Put in or take out air conditioners? Move the patio furniture? Chances are these tasks will get overlooked during a hospitalization or recovery period, as will other home maintenance jobs.

§  Remember that commuting to the hospital (gas), parking garages and cafeteria meals are unexpected expenses that most do not budget for. (Some hospitals have fees for TV service for the patient. I once paid $8 per day so Larry could have TV and a phone in his room. And he was there for 3 weeks.) A small gift to offset these costs will be most appreciated.

§  When you go to visit, look around you. Are there dishes in the sink? A litter box? Trash that needs to go out? Take the initiative and put the coffee pot (or tea kettle!) on and tell your caregiver friend to sit. Then, over his/her objection, get the dishes into the dishwasher, empty the trash, etc, all the while lending an ear to your friend. Or, encourage the caregiver to take a nap. Chances are, he or she has been going full tilt since the incident began and can really use the rest.

§  Keep visits short as the patient and the family are often tired following a major illness or surgery. Pain medications can make the patient sleepy. Respect the need for the patient to rest.

§  Pray With your friend, not just for your friend.

It is INCREDIBLY HARD to ask for help. It is humbling. Most are too proud to admit there is a need. Or, like me, they don't want to bother anyone.

If you do help someone out, DO NOT mention how busy you are. It will only make your friend feel guilty for taking you away from your obligations.

At a time like this, I really miss my Mom. She would help to keep the home fires burning during a crisis. She'd make me a cup of tea, put food on the table despite my insistance that I couldn't eat (and I always managed to eat what she served!), she'd fold the laundry, do the dishes, encourage me to take a nap, listen when I just needed to vent, etc. Her support was invaluable.

You, too, can be invaluable to your family or friends who are faced with a challenge such as a major illness. Remember, there is a good chance you might need someone to help you out some day. Let's all try to help one another.

Don't Let Your Burdens Weigh You Down

Learning to Delegate

Do you ever feel over- burdened? If you're like most of us, the answer will be, "Yes." As a matter of fact, my answer is more like "When am I not?" Too often I feel the weight of the world on my shoulders as I go through the day. And frankly, that really is not necessary.

There was a day not too long ago that despite being over tired and achy I decided to do the food shopping on my way home. Feeling exhausted I muddled through the experience and loaded the car with oodles of bundles that included a 50lb bag of dog food. A feeling of dread accompanied me on the drive home as I thought about how I was going to have to unload the car and put all the stuff away. Then, pulling into the driveway I realized I had three choices:

1.            Do it all myself without asking the family for help.

2.            Ask someone to help me but still do the bulk of it myself.

3.            Ask others in the family to take over the task and go inside and rest.

If I did it all by myself, the feeling of being over- burdened would only increase as would my physical tiredness. If I asked for help but did not let go of the task I'd feel a little relief but not enough to be restored. I figured out I needed to just let others carry my load. I needed to delegate. And just as importantly, I needed to relinquish the burden.

As caregivers we need to take a hard look at the number of tasks we try to accomplish and recognize that it is acceptable to ask for assistance, especially when the burdens seem to be weighing us down. Asking for help is not easy for most of us. It might take some practice. But in the long run, by not being a martyr, you will find that the load is much easier to handle.