GUEST BLOGGER: When the Ill Person Becomes the Caregiver
I thought Nancy’s email was poignant, because so often the person who has a chronic illness ends up in the situation where s/he becomes the cargiver to others in the family. Sometimes it’s a spouse with cancer, other times the caregiver for a child. We can live with illness for twenty years, and suddenly wake up finding ourselves being “the health-IER one” who is the person who has to pick up the pieces of the family when the chaos of illness sets in.
Are you a caregiver, despite being chronically ill? We’d love to hear your comments, feedback, and find out where you receive your support to “keep on keeping on.”
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When the Ill Person Becomes the Caregiver
I have CFS/ME, Fibromyalgia, Degenerative Disc Disease, Neuropathy, Dysphonia, and Asthma as my primary illnesses that I live with. People now can easily see that I do have a chronic illness because I need surgery on my back again and can’t stand up straight.
The point of what I want to say is that I find myself as caregiver to my husband who has Bipolar Disorder, Early Dementia; and recently he had a pacemaker implanted, surgery to remove cancer from his lung, and now he’s going through chemo.
Additionally, I provide care for a 12-year old grandson when he’s not in school and his parents are at work, which is nearly every day unless he stays with someone else. And I have an elderly dog and three cats. In my spare time, I help “a little” with a support group for people with ME/CFS and Fibro.
To say I am overwhelmed is an understatement. I didn’t see anything on your blog about these types of situations although I know there are many of us… particularly young mothers who have chronic illness.
All I can say is that years ago I put my faith in God to see me through every situation that arises that I think I just can’t handle . Well, guess what! I can handle it with “His” help. After a while you feel like you are going in circles and accomplishing nothing. But that’s just the fatigue talking – both mental and physical. But with the Lord’s help we put one foot in front of the other and keep on keeping on.
I’d love to see a blog from someonewho is coping with a similar situation, but from a wheel chair. I know they are out there.
Nancy H.
I have Fibro, Cerebral Palsy and other conditions and am a caregiver for my fiance who is on dialysis, has Spina Bifida, and other health issues. It can be hard being both dr and patient but God helps me through it.
Kelly M
August 16, 2008
Dear Nancy,
I am a caregiver,at times, as well. My husband was diagnosed with cancer several months after I was injured on the job. I developed Thoracic Outlet Syndrome, Pectoralis Minor Syndrome, Complex Regional Pain Syndrome, and am in pain all of the time from the waist up. At times my pain will travel down my lower back and into my left foot, also causing swelling. Altho I am not in a wheel chair, there are times where I wish I could be.
At times it’s especially difficult for us because we live in a two story home, without the luxury of a downstairs bedroom. I am not able to carry trays upstairs; sometimes I am unable to even carry a cup of coffee that far, even with several stops along the way. But I do my best, because on my bad really days, it seems as tho God is very aware that I am unable to take care of my husband, much less myself. On those days, God gives him just enough strength to take care of me!
In fact, at this stage of our chronic illness/pain, my husband does more of the care taking. Our roles have shifted as my condition has worsened, and his is beginning to improve.
I wish I could say it always works out well for us, but that would not be the truth; some days are harder than others.
The most encouraging and promising thing I can say is God gives us just enough strength for EACH day. The best advice I could give anyone is to take life one day at a time.
2 Corinthians 4:16-17 tells us “not to loose heart… we are inwardly being renewed, day by day. For our light and momentary troubles are achieving for us an eternal glory that out weighs them all.”
There are times where our troubles don’t seem especially light, but when looking forward to what awaits us in the neṭ life, the issues we face here on seem much more manageable.
Another verse I turn to for comfort when the days are hard is Isaiah 53:4, ” Surely he took up our infirmities, and carries our sorrows.” That one really touches me and gives me that extra “ooomph” I need to keep pressing onward!
I hope these thoughts are of some help and comfort to you.
God Bless~
Maribeth
August 16, 2008
Hello,
I had to reply because Nancy reminds me so much of myself!
I would love to connect to other caregivers who are struggling with their own health issues as well. I am no longer in a wheelchair due to back surgery in 2005, but I do know how that feels.
I am a wife, sister and mother to individuals who have chronic invisible illnesses ranging from epilepsy, diabetes, autism and dysautonomia, a rare autonomic nervous system disorder. I, myself, deal with visual and hearing loss, dengenerative disk disease, TMJ, trigeminal neuralgia, allergies and chemical sensitivities.
I do have a blog, but it is not just about how I deal, but how I overcome. Some days are good, others are not so. I try to be uplifting, but not every day can be like that. I guess if more are better than worse, I am okay. Would love to hear from others.
Judi
http://invisibledisabilities.ning.com/profile/JudiElise
Judith
August 16, 2008
I have had C.F.S/M.E./Sick Building Syndrome, Chemical Poisoning and a few other ailments that spin off from these, for about 17 years.
My husband also has C.F.S. so I can relate a little to what others have spoken about.
Putting my faith in the “Lord” to get me through is the only thing “that gets me through”.
It has been difficult for me to keep my house in order, prepare healthy meals and homeschool my 2 sons. The most important task is to prepare healthy meals otherwise we both spiral downwards very fast.
It has not been easy looking after my husband as well as myself and sometimes other things just don’t get done round the house, but I do my best. It has also been difficult to share about this situation with people because they have been known to judge my husband for not doing more. (being the male – supposed to be the strongest one physically etc) He struggles enough with guilt as it is. One time a well meaning relation tried to talk to him about our situation, (as she saw it) and it caused a rift in our family which then made it harder for me, emotionally at the time.
I really try to look after my own health as best as I can with lifestyle and management strategies. I did an on-line course this year on “self management strategies” and this has been very beneficial to me as I learn to structure my days better.
I have prayed for years for the Lord to show me the way I should go on a daily basis, and step by step, I believe I am making some sort of progress now that my children are teenagers. I also pray for strength and his grace to get me through each day.
A big key for me is to “take one step at a time …… one day at a time” and to believe “that all things work together for good for those that love the Lord, who are called according to his purposes and plans” Rom 8:28.
It is great to be able to share on a Christian Forum.
Bless you all
Lee Ann
Lee Ann
August 17, 2008
I have dealt with chronic pain for about 25-20 yrs now. I have Fibro and CFS, Scoliosis, Degenerative bone disease, spinal stenosis, and spondylitis, along with migraines, and 3 13″ rods in my back. I have other problems such as loosing my sight, but the back, neck, hip, legs has been the worst. My husband was my caregiver and over the last few years he did everything. I don’t know how many times he heard me say, I wish the Lord would take me home. Not just because of the pain, but the feeling like a burden, and not being able to do what I want to do, which is to work with Kids. I have done this in a volunteer capacity for years, until I just could not make myself go anymore. I was a Guardian ad Litem, Big Sister, Foster Parent, worked with the youth in my church. Started a Crisis Pregnancy Center, and a mentoring program for teen girls in lock up. It is/was my passion, and I cannot do any of it now, nor have I been able to for years. My husband got colorectal cancer, but it had already broken through the wall, and metastasized to the liver. Stage IV. Maybe 2-3 yrs. We had been married 43 yrs. and when God said we shall leave our father and mother and the two shall become one. We were. I prayed for God to give me supernatural strength to take care of him the way he had taken care of me, without complaint. With a good attitude. I lost him in about a year. He was so sure I was going with him. He said he understood why I had asked God so many times to let me go home. I feel like half a person now, and cannot seem to get over the grief. which doesn’t help the pain. At the last moment he took my hand as we laid side by side on the bed, and he asked me if I was ready to go. I told him I was, but I could not just yet. He wanted to know why. I told him God had a few more things for me to do, and it would only be a moment. Then he died, and I can tell you that a lot of me died with him. I just started seeing a Christian Counselor and she talked about the grief Jesus went through when he was separated from His Father. She used the night in Gethsemane as an example of how he asked others to pray, and He went off and asked the Father three times if this cup could be taken from him, to the point that he sweat blood. But he also said, not my will but thine.
I have felt the same distance, and she explained that it was because of the pain of separation, and I saw how Jesus knew so much more than I what that felt like.
Jerry Ann Haynam
August 17, 2008
Nancy, Your words speak volumes! I just returned from a fibro-support group meeting, and several mentioned just this! Being a care-taker while being a sufferer takes alot of faith, and condensing our lives to healthy boundaries and alot of prayer! Just think of Paul in prison, writing words of encouragement! You are being watched by angels for your selfless love! Thanks for taking the time to write!
Shelley E
shelley echtle
August 17, 2008
I, too, am chronically ill with Sjogren’s Syndrome with central nervous system involvement, lupus, rheumatoid arthritis, etc. And I’m a homeschooling mother of three children, ages 10, 8, and 7. To make ends meet, my husband is working 90+ hours a week right now, so I feel like I’m the main caregiver when I desperately need to be taken care of. Any suggestions or encouragement you can offer would be greatly appreciated.
Sherri
August 18, 2008
Nancy,
Wow!! Not only do you care for your husband, but you reach out to others with your love.
If our country would follow your lead, there would be no wars; there would be no welfare; there would be love flowing all over the world.
I too suffer from many painful illnesses such as: sentosis of the spin, guadruple by-pass surgery, gall bladder sugery, two back surgeries, and a torn Achilles tendon surgery.
It is not the suffering that is important in our lives. It is how we handle the suffering. We can be wonderful examples through our patience, and love.
You have done more than that.
Doug Bolton
August 18, 2008
This is to Sherri,
Have you looked into getting help through some agency? I’ve not gotten into looking for help yet. But I hear there is help if you know where to find it.
Also you may qualify for free counseling. A good Christian counselor is well worth the time and money – assuming of course you have the resources to pay for one!
Mine got me reading Joni Eareckson Tada Books. The is “When God Weeps.” All of her books are goo, but “When God Weeps” is really the book for us.
It was a Christian counselor that got me thru what I thougth then was a rough time. She was very helpful and I draw on that time I spent with her to this very day and will continue to as long as I live. With God help I a able to do more than I would on my own.
God Bless, Nancy
Nancy Henson
August 19, 2008
I have myasthenia gravis, a rare grave muscle weakness disease. I am on prednisone every other day and Mestinon every day. My husband recently got fired from his job of 22 years and just Saturday, 8/23 broke his collarbone. He turns 60 this Friday. I also work full time – so I was a bit overwhelmed and crying out to the Lord, “how am i ever going to do this, Lord?” I walked up to a flip calendar I have with the Names of God on it and flipped it over to read in child printing “MY HELP” – The Holy Spirit was immediately telling me to be little and trusting like a child and that He is “My Help” – Yes, Lord. I can do all things through Christ who strengthens me. His name is also “Protector” and “Provider”- When i read of what my dear brothers and sisters in Christ are suffering in places like India or Afghanistan – then i have perspective and am thankful. I haven’t been burned alive yet, nor raped by a gang of Hindu extremests or my home burned down. So, I am VERY thankful for this path the Lord has put me on and offer all these little sacrifices for graces for those that need them.
Mary Jane Tynan
August 26, 2008
I was a caregiver to my husband under similar circumstances to yours. I have Myofascial Pain, Fibro, Chronic fatigue and depression, as well as severe migraines since I was 10 years old. I am 48. He was diagnosed with a terminal illness in 2000, has severe depression, back surgeries and pain, has had cancer and so many other things.
I nursed him through all of this since 1997 until last year.
He left me.
After all that…the stress and strain got to be too much and he moved out.
Even so, we help each other as we can.
I know God is real and He hears prayer and He is with us. He knows our needs as well as yours and He can do anything.
ANYTHING! Why He chooses these things I don’t know, but I know He does it with love.
Maybe it’s just so we can understand someone else’s pain.
And iin this world…I think that’s a small but mighty miracle. Somehow, everything will be alright.
God will see to it.
Debby
September 10, 2008