Who is Caring for the Caregivers?
This particular subject is very dear to my heart. I am married to my very best friend, who without questions asked, bares his cross daily to be my caregiver while still caring for our 3 children. I've had to watch my illness affect the ones I love. I have had to watch my husband, while still making a living, bare the burden of running our home and family as all the responsibilities fall completely on his shoulders. I've seen him cry; I've seen him be angry; I've seen him become scared; I've seen him be overwhelmed; I've seen him sacrifice without complaint; I've seen him bare it all; and I've seen him work until there was nothing left to give.
Caregivers are as different as the flowers in the fields. Caregivers are the ones providing care for the sick, elderly, terminal, or chronically ill. A caregiver can be an adult child caring for an aging parent who is losing their independence, or could be a spouse with grown children who is dealing with a sick or chronically ill husband or wife, or maybe a parent who has a child with an illness or disease. One of the most difficult caregiving roles is a spouse who must become a caregiver to their spouse while still having young children to care for, as well. All of these are often the unsung heroes who must toil and labor with very little relief of stress. (I've inclosed some caregivers tips at the bottom of the blog).
Just 3 years ago, I ran the home from top to bottom. I was in charge of all of the many, many tasks of running a household. With 3 young kids, this was no small feat in itself. It was a very stressful, yet rewarding, full-time job. There were groceries, parties, shopping, cooking, planning, carpooling, school projects, cleaning, organizing, deadlines, sports, trips, scheduling, doctor appointments, gardening, baking, errands, homework, and soooooo much more! You know that little list is putting it mildly! But today, because of the gravity of my illness, all of this no longer falls on ME. It must fall on an already overwhelmed spouse. I've mentioned before that I'm married to a doctor whose practice depends on him every day. You cannot just cancel a clinic full of patients because your child needs to see a doctor that day. However, what do you do when you are the caregiver of not only 3 children, but now also, a chronically ill spouse?
I've watched the toll it's taken on my husband, personally. It's been difficult to watch. One of the hardest things is knowing that no matter how bad it gets for him, there is still nothing I can do to jump in and relieve his stress, as I could have done years ago. I've had to observe from my bed as every task falls on his shoulders and becomes his ultimate responsibility. Most women out there would attest to the fact that men were not designed to run the house. Can I get an 'Amen'? Not only were they not designed that way naturally, they often have no desire to do so! My precious husband has had to do more than his fair share of trying to take on this new role and all of it's 'unglorious' responsibilities. While he doesn't have to physically scrub the bathrooms because we have someone to do that, every single task falls to him day in and day out! He cannot depend on me to take over much because of the unpredictability of my illness. I can be folding laundry one day, and be lying in the bed not able to move the next. It's all on him all the time. He must come home from work every evening and jump into multiple roles plus caregiving. Of course, David has had the benefit of temporary help from out of town family and friends, rides during the day for the kids from his parents, some meals graciously provided during my long hospital stays, and some much needed vacations to help keep him sane. We've worked together as a family, teaching our children along the way to help and participate in our family unit, and tried to make the best of a very, difficult situation.
Having young kids at home has brought the term 'caregiver' to a whole new level. My husband must literally do it all 24/7 or find a way for things to be done. He is always on call by himself: if a child needs a ride, school projects, sick kids, grocery runs, all errands, every project, cleaning up after meals, clothes and shoe shopping, returns, repairs, birthday parties, gifts, holidays, entertaining, carpooling, sporting events, school functions, all last minute pick ups from the store, yard work, church, picking up around the house, putting the kids to bed, making sure things are picked up at night, outside jobs, car maintenance, weekend meals, nightmares, boo-boos, extra-curricular activities, and the list goes on and on and on and on........ And in addition, he must also care for his sick wife which can include: middle of the night hospital runs, weeks on end hospital stays, doctor's visits, out of town trips to medical centers, administering injections, wheelchair care and maintenance and assembly, insurance hassles, picking up medicines, bi-weekly blood draws, (at some point-in home IV therapy), picking me off the floor, caring for me when I'm too sick to walk, knowing when I'm going to pass out or not, protecting me from falls, getting me nursing care, being available 24/7 for one of the dreaded phone calls, checking my vitals, pushing me in my wheelchair, making travel arrangements, getting up in the middle of the night with me if I'm sick, making sure my social needs are being met, fitting in time to be a husband-wife, reading things to me, making sure I have the food available for when I'm too sick to get it myself, serving me in bed, cleaning up for me, putting away my things that I cannot, teaching the children how to care for me when I'm unconscious and how to get me to the bed safely, taking me out for some fresh air, helping me get in and out of the pool, buying safety items for the home and shower, holding my hair when I'm getting sick, holding my hand when the pain is more than I can bare, being my voice to the doctors when I cannot speak......and many other things that are too personal to share. And let me just add.....this is all in addition to an extremely demanding job, medical practice, and continuing medical education, which was enough all by itself.
Putting the physical stress aside, there is another huge component. The mental stress of the caregiver. I heard over and over again from other caregivers how the guilt literally becomes a driving force of over working. There is an element of guilt that goes along with being a caregiver. You watch your spouse, your child, or your sibling suffer and often times suffer greatly. You cannot put yourself in their shoes and feel you have no right to complain. However, in that process, the caregiver neglects to restore and renew themselves. Who is feeding back into them? There is something overwhelming with being responsible for everyone all the time. It's being a CEO like no other, and they never, ever get a mental break. There can be fear and sadness as you watch your counterpart suffer or deteriorate. You feel helpless and powerless because you cannot take away the physical pain. It can weigh heavy on anyone's soul. When one realizes they cannot be everything to everyone all the time, a sense of failure could set in. The caregiver could now be faced with feelings of: guilt, failure, stress, sadness, helplessness, and intense pressure.
The lists break my heart. It's tiring to read it, write it, but dear God, what's it like to LIVE IT? I would like to say I could put myself in his shoes, but I cannot. I've only seen it from my end. I've imagined what it would be like to have a spouse who you have to watch suffer, loose abilities, cry in pain, and wither away in front of you. But I cannot imagine the immense STRESS that must go along with living the life as a caregiver in this capacity. So, I ask, who is caring for our caregivers?
As I became sick, I was surrounded by several individuals who took time out of their busy lives to minister to me. I had lost so much, but was continually being reminded that I was not forgotten. I have continued to receive cards from people all over this country. To this day, I get blessed with each scripture, word of encouragement, or funny little note that comes in the mail. I even had a dear, sweet lady (whom I've never, even met) send my daughter and I a recorded book because she had heard I had trouble reading aloud. The emails, texts, letters, surprise visit from classmates, gifts, boxes and baskets, dinners, and more have all been FOOD FOR MY HEART, SOUL, AND MIND! In fact, sometimes, it was the thing that pushed me through yet another tough week.
But, I became worried at one point, that while I'm being lifted up.......my husband was barely holding on! His stress, pressure, responsibility were all draining him, and his cup wasn't being re-filled. I remember reaching out to a few men to try to help support David in the beginning, as his world, too, had crumbled down around him. After all, it was his dreams, his life, his wife, and his world that also got shaken and turned upside down. It got me thinking.......as a society......are we forgetting about a whole group of people....the CAREGIVERS!
As the baby boomers continue to age, as illnesses continues to rise, and as people become sicker....I am sure the number of caregivers will also rise! So, what can we do for this group of unsung heroes? I imagine you probably know of a caregiver of some type right now, already. It could be a temporary situation or a more permanent one. Either way, I want to encourage you the next time you feel led to bless someone, seek out a caregiver, as well. I can bet they would be relieved and blessed! I recently read that more than 60% of spousal caregivers due so with zero outside help or support.
Here are some practical ways and ideas to care for a caregiver! (with my own little take on it, of course) Some little acts of kindness take 5 minutes to make a difference in someone's life.
-Find out if they are involved in a support group, and if not, help them locate one if they are interested.
-Bring a meal for the family (this has always been the biggest blessing to my caregiver who cannot cook) If you can't cook, send them a take out meal or a gift card. It's one less thing they have to worry about.
-Send them for a day out-offer to watch the kids or the sick family member. Don't have a full day, just let them take a walk by themselves and clear their mind, or go to the movies, or even to a store alone.
-Let them have a day 'in', I don't think my husband has been alone at home for over 2 years.
-Invite them out for a meal. This is also a great time to talk. They probably haven't done much of that without the stress of caregiving or cleaning up.
-Be a listening ear. Most people won't call (especially men) and say that they need to vent, talk, or cry. Be the listening ear for a few hours.
-Take a task off their hands for a day or a week. Find out what is their least favorite 'new' responsibility and try to give them a break from it. No, I'm not talking about bathing anyway! :) For my husband, it was the grocery shopping that became his least favorite 'new' job. Any gesture can go a long way!
-Send the caregiver a note or a card letting them know they are also not forgotten.
-If the caregiver has a sick spouse, try to offer to be their other 'person' at a function or church. See them sitting alone, have them join you. Having a homebound spouse can be very isolating for them, as well.
-Send them a stress reliever gift basket or gift.
-Give the caregiver a call and let them know you are thinking of them today.
-If you are out running errands anyway, find out what errand you could run for the caregiver to give them one less thing they have to worry about.
-Can be as simple as baking their favorite goody, or taking them a note, or even just a hug on a difficult day!
-Find out a way you can be a blessing. Ask what would help them out. Or, just do it, you probably have a good idea. Something as easy as cutting the grass could give the caregiver a much needed nap!
-Be a friend. Caregiving is a full time job. Just as I had to give up most of my friendships because I'm a 'shut-in', my husband had to do the same.
-Don't assume just because they don't ask, they don't need help. Chances are they need lots of help!
-Be encouraging.
-Send them a book or a magazine to read and unwind.
-Caregivers never put their needs first. Find out what they may need, personally. I've read that many caregivers just want a good night sleep. That isn't the case in our house, but is especially for those caring for an elderly parent.
-Give practical help! Some of the best things have been the simplest. Meals, cleaning, driving, picking up dry cleaning, shopping, etc.
-Been in their shoes? Share some life experiences that helped you get through the most challenging times.
-LISTEN...oh, I think I said that one before....be a friend and just listen! Their world is turned upside down, and they are pouring everything they have into others all the time.
-I'm sure there are tons more that can minister to our caregivers, be creative, be proactive, be involved, and make a difference in someone's life today!
If you have more, please COMMENT and add to this post. I'd love to hear your ideas and thoughts on this subject.
I tried to give a small snap-shot into our unique situation on a typical week. However, there are caregivers with many different dynamics, with over 65 million caregivers in our country right now, and that number rising each year. The majority of caregivers do it alone with no outside help. While this is a topic very dear to my own heart, personally, I tried to bring a small awareness to this amazing group of people who could quite possibly use some encouragement today!
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