When my husband was 46 years old, he was diagnosed with stage 4 non-Hodgkin’s Lymphoma.
At the time, our son was six. Jim was in and out of the hospital for chemotherapy treatments but was able to continue working. Once Jim was in remission, he had a stem cell transplant. He remained in the hospital for 30 days teetering between life and death.
I quit my job to focus on being a caregiver and a mother.
My life was chaotic. Nothing I did was good enough because I couldn’t save my husband or make him better. I cleaned his ports, and administered morphine. I tried to deal with our anger, sadness, fear and pain. I was in way over my head. At the same time, I had to help and guide my 6 year son through his father’s illness and subsequent death. I became robotic. There wasn’t time to stop and feel all the emotion that flowed through me. Oddly enough, I discovered that my husband’s spirits were better when he was around people other than me.
Two years after Jim’s diagnosis, he died. He was 48 years old. He suffered way too much.
Although my son and I understood that Jim couldn’t have lived any longer in the state he was in and that death was a release from all of the suffering he endured, I couldn’t help but wonder how the impact of his father’s death would manifest itself later on, in my son’s preteen years. I was left to pick up the pieces of our lives. I was a single mother, jobless, broke, in debt, and with a son in private school. I couldn’t take that vacation to clear the air, or take time off to process all that had happened. I had to look for work immediately, and keep juggling all of those balls.
As fate would have it, I received an email from a woman who sat on the Board with me at our children’s school.
For the last 35 years, she worked as a financial representative. She was looking for an executive assistant. I jumped at the opportunity to reinvent myself and, by chance, uncovered a world I knew very little about. I discovered that insurance products save lives. If only Jim had life insurance, if only he had a Long Term Care insurance policy, if only we had planned better, if only…
While working as an executive assistant, I decided to go back to school to get my insurance licenses and certifications so I would be able to tell my story to others. I wanted to talk about what is in our power, so that when our loved ones need care they will be provided for, and so will we, the caregivers. When people ask me why they should buy Long Term Care or Life Insurance, I tell them that they should do it because they love their family.
In future posts I will be exploring questions such as:
- Who takes care of the caregiver?
- How does the caregiver protect themselves from the financial devastation I experienced?
I welcome suggestions and comments.
I know I cannot cure him but I can sure do my very best to make his days as good as they can be!
I think that’s one of the many things about caring for someone you love. no matter what you do, you can’t cure them, make them better. After a while I think we get angry at the person or persons, which then causes anger and resentment to inter into the picture.
That’s why we can’t lose the joy, the laughter, memories. Praying for everyone going through this. God never gives us more than we can handle. Remember getting help is also Gods way of helping us hang on. ✝
I have been a caregiver for my husband since 2006 who at starting at age 58 , in this order suffered a hemorrhagic stroke with left side paralysis, kidney cancer, lung cancer, a below the knee amputation and a broken hip which depleted any and all savings we ever had in the bank. I work fulltime and he is a retired doctor and I am a family nurse practitioner in independent practice. It has taught me so much to offer in help to my patients because we have experienced life from the other side of the hospital bed. What I can tell you is do all you can to rally for your loved one, but you must take care of yourself as well. We have had no help financial or otherwise, parents too elderly to help and other family members live in cities far away. Medicare does not pay for companion care, and my husband is now in a hospital bed, but he does stay alone. We have rigged safe ways for him to do things alone, such as a urinal and a bucket beside the bed. I bring his meals at lunchtime daily, and my patients know that if my husband calls me they may be waiting awhile or cancelled for another day because he comes first before business. They are compassionate and they understand this and I tell all new patients in my clinic when they decide upon me as a health care provider that this is what they might experience when visiting my clinic. It has been a long hard and frustrating road, and he has outlived his life expectancy by ten years. Lord only knows how much longer he will survive and we have had some really rough times but we manage somehow. Probably my only respite is that I own two horses and I take one full hour every single evening that the weather allows to spend time with them alone. People have told me in past I should get rid of my horses with everything else I have on my plate, but they are my sanity. When I am busying myself with them or just hanging out talking to them everything else in the world that is bad goes away. They were there before the tragedy occurred with my husband and they remain because they are my lifeline..So I would say to other caregivers, with help so hard to find and stolen moments of peace and quiet so elusive, do not give up everything that is YOU. Life has to go on after your loved one is gone, and you must maintain some degree of “self” throughout your caregiving experience to carry you into your life without them someday. For me it is horses, but for someone else it could be dining out, watching a movie, or doing any other thing to you that seemed normal before your days as a caregiver began. People always want to help but sometimes the most helpful thing is just to feel like a normal unencumbered person even if it is only for a little while each day. Cherish those moments. Without them, I would already likely be disabled myself.
I cannot imagine what it must be like to be a caregiver for a husband and still have dependent children at home. The stress must be overwhelming. I helped care for my terminally ill mom for 16 months and it’s a time I hope to never experience again. Caregiving is taxing physically, mentally and emotionally but throw financially into the equation and it must seem next to impossible. I have a new found admiration for all caregivers and I pray you all receive the strength and courage to get through each day.
We have found ourselves in the same situation, slightly. I was the main breadwinner of the house. I had an amazing career and had all the insurance set up if anything were to happen to me. My husband was in college fulltime. He had just received his bachelors and was enrolled in graduate school when he had a brain aneurysm at 37 years old.
There was no ‘extra insurance’ for him.
I left my career to care from him.
After 6 months in the hospital, he came home. It has been almost a year since his discharge.
My husbands recovery has been remarkable. He is fairly independent with a walker in the house. But has such bad short term memory loss that he still can not be alone.
All the insurance I had for myself meant nothing when it happened to him.
We struggle, and it has become harder now that our oldest son is getting ready to leave for college. He is such a huge help to me.
If only spouses could be paid to be caregivers in our state (Michigan). It would change EVERYTHING for us.
Thank you for your blog, though my children are older we too are fighting a disease that will ultimately take my husbands life. It is exhausting and over whelming. I have always been the “fixer” in the family and it is so frustrating and heart breaking that I now can’t fix this. I truly wish I could afford to quit my job but as it is I work nights while my 19 year old daughter works days and we each take our shift as caregiver. Without the support of my girl I would be totally lost. We really are in over our heads but refuse to give up. This really helps us to realize we aren’t totally alone in this. Thank you
Not sure if this is the right place to post this… It being National Caregiver Month …
Being a caregiver for my husband since 2007…
He had a stroke that took his right side and he had no feeling to stand or move his right arm.. He eventually was able to stand and walk with a walker.. Then in 2011 he had a heart attack and had to have open heart surgery with a 4way bypass and a new aortic valve.. He was in hospitals and nursing homes for six months.. Then he came home .. He had many setbacks and other surgeries..
But this morning it’s a good day .. Our normal.. He can walk with a walker, and go outside.. Partially dress and shower ..
There is always hope.. We take it one day at a time..
I have found a Mobile Physician Service .. All Doctor appointments are done at our home.. Including blood work..
Also a door to door transport for time when he needs to go out to a doctor..
We had meals on wheels for awhile which was also a great help..
There is also a Disability Achievement Center locally who will donate different things one would need to set up a home for caregiving…
Lots of help out there … I found out mostly word of mouth and net working..
Wishing all the caregivers out there a positive day…
Take care
Theresa