Helping Those Who Need it Most

There is a link below to a blog written by Herb Reese of New Commandment Men's Ministries. In his blog, he included a letter from a woman he knows who has had to deal with chronic illness and disability in her family for many years.

I have to admit: I am the woman who wrote to Herb. For a number of years I  have been envious of the people that are served by his ministry. New Commandment Men's Ministries serves widows and single mothers by equipping and training churches to develop teams that will roll up their sleeves and provide help to those who need it on a consistent basis.

It's true that over the years my family has been blessed beyond measure by friends, family and the church. I love each and every one of you who have helped. I truly do. And I do not want to appear ungrateful. But the help is inconsistent. And frankly, the further down this path we travel (it has been years!) the less support is there.

Many well- meaning people have said, "I don't know how you do it."  If you look around, you'll see I am not doing it. Do you see my lawn? the grass is up to my calf. The weeds in my garden? The stack of bills? Dishes? Home repairs that are screaming to get done? The "to do" list is getting longer each day and it is almost impossible to juggle all the needs of my family.

Chronic illness sucks.

This week alone, I have been ping-ponging between two healthcare facilities as one member of my immediate family is in the hospital and another was transferred to sub acute care and rehab.

And I am at the end of my rope.

Ironic isn't it? I have this great desire to help caregivers in their struggles and yet here I am. Most likely I have crossed over from feeling caregiver stress to burnout. I don't need a mental health day. I need an escape from reality.

Take a moment to read what I wrote to Herb and his response via his blog. And please remember to set aside some time to help someone in need. It doesn't need to be much. Spend an hour pulling weeds, for instance. Your efforts will go a long way in making someone's life a little easier.

If Your Church Really Wants to Help, Consider This

Less than a week ago my husband Larry was brought to the hospital in septic shock. He had been home 16 days after being hospitalized and in rehab for 8 weeks. The past few days have been a whirlwind as we have tried to come to grips with the reality of the situation. Once again, he has defied the odds simply by surviving. It is uncertain what the outcome will be. He has some hurdles to overcome. Doctors do see some improvement if you go strictly by the lab results. He was moved out of the ICU. We wait to see what the future holds.

As you can imagine, once word got out  that he was hospitalized I was bombarded with questions, including inquiries about how I am handling the crisis. I've pondered that question most of the week. It's been a roller coaster, to say the least.

In answer to the question about how I am doing, this is what came to mind:

I visualize the two of us walking together hand in hand along a path in the woods during our 32 years of marriage. Most of the time it has been a pleasant stroll. Yet sometimes the path has been rocky. There have been obstacles to maneuver around. Up to the mountain tops and down into the valleys we've traveled, helping one another, celebrating with one another, loving and living life.We walked the path together, always hand in hand. 

But now we have come to a fork. He must travel along one path. It is clear that I cannot go with him. I must travel my own path. Letting go is painful. At the moment, we are walking alone on parallel paths. We still have the other in sight. But the fork is veering off and soon we won't be able to see each other. I feel lost. Scared. Sad. Alone. 

God is with each of us, reassuring us He is still guiding us and we will each be alright. But like the child who falls and skins a knee, there are tears. It hurts. Our paths will meet up again. We will continue our journey once more. I trust in God and know He is in control.

Managing Stress

Managing stress is something that everyone needs to do. Competing time demands, family, work, the endless “to do list”, finances etc., etc. contribute to the stress load of most adults. Add the challenge of caring for another individual and the stress is greatly exasperated.

What can you do to alleviate some of the stress? Here are a few things to think about:

• Recognize the signs in yourself. Are you over-tired? Irritable? Depressed? (List some of the signs that you find in yourself )
• Discuss with your family members how the stress is affecting you. Are you anxious? Exhausted? Overwhelmed? Involve your family physician if necessary to seek a solution.
• Seek assistance whenever possible. Don’t try to do it alone. (Who can you call? Make a list of both professional agencies and friends you can access for help or respite)
• Find activities that you and your care recipient can do together for fun. Do you like to watch old movies? Listen to music? (List some ideas here)
• Learn to let go.  (What are three things that you can give up or change? For instance, do you need to change your Expectations?)

Sometimes, being able to recognize the signs of stress is the first step in the healing process.  We must be willing to discuss with others how overwhelmed we may feel and to seek assistance when needed. Be sure to schedule a family meeting or make a point to bring it up at the next doctor’s appointment.  Your health needn’t be a victim of caregiver stress! A few simple changes can help alleviate some of the burden we carry. But we must take the first step. 

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.