Most of you know that I took care of my mother for several years until her passing in October 2014. What you might not know is I have spent more than 20 years caring for family members. I did what I did because I felt it was the right thing to do – still do – however if you’ve never cared for a sick or terminally person you might not realize all that’s involved. If you have, you already know how extremely difficult, yet rewarding, it can be. This is my Caregiver’s Journey.
Another reason I’m writing this saga is just for my own sake. I want to understand how I wound up where I am – living with my grandson’s family, no car, and a new fledgling business. I want to understand that the choices I made over time are the choices I’d still make today. And quit beating myself up so much.
If you think this all will be told in one post then we haven’t met. My name is Colleen and I can’t say ‘hello’ in two words. And I don’t know anyone who could summarize 20 years of anything. So there’s that.
To let you know what’s coming –
- Husband’s knee surgery
- Husband’s knee surgery on other knee
- Husband’s botched gall bladder surgery
- Friend’s shoulder surgery
- Mom’s broken wrists – as in BOTH of them
- Mother in Law’s stroke
- Mom’s CLL – Chronic Lymphatic Leukemia (cancer)
- Brother’s CLL
- Husband’s death
- Brother’s death
- Mom’s death
I promise you it’s not all doom and gloom. I mean, you have to have a great sense of humor when you’re a caregiver, believe me. When I recounted the stories to a friend I hadn’t seen in over 20 years, we were laughing and crying. Sometimes laughing so hard it made tears roll.
Bear with me as these posts pop up now and then. I am busy painting commissions – which you will see, promise – but I want to get back to a regular blogging schedule.
If you know of someone who is a caregiver, I hope you’ll share these posts with them.
Colleen
Count me as one who is always interested in whatever you have to relate, Colleen. I enjoy every post.!
Hugs!
I hear ya Colleen. Mom came with me in 1998 and passed a year ago on May 18th. As her health declined more and more over the 18 years she was with me, our sense of humor grew. I think its Gods way of getting us through–finding the humor in the strangest things! I’ll be waiting for your posts!
I am a follower of your blog. I am also a caregiver to my son and have been for the past 22 years. He was diagnosed at the age of 23 months with severe autism. Currently, he has the additional diagnoses of severe mental retardation, seizure disorder, traumatic brain injury (from a grand mal seizure where his brain froze for over 5 minutes and recently a stroke), numerous medical issues and many more diagnosis. He needs 24/7 care and I cannot leave him out of my sight for one second. He is non verbal and when he is ill (which is pretty much all the time) he cannot communicate let alone communicate when he is in pain. I am always playing a guessing game when he is not himself (no sleep for three or more days, no eating, etc). It takes over a year to train someone to be alone with him. After my radical hysterectomy and bilateral mastectomy, chemo was a 3-4 hour vacation away from home. At present, the only time I leave home is for my own doctor’s appointment. There is no end in sight. Every minute is tough – whether it is day or night. After 22 years – there are no friends – no family – just keeping him safe, fed and as pain free as possible is my purpose in life. I will not put him in an institution because he is my son and my responsibility and the love of my life. I try not to show my sadness, but it is always there. When there is a birthday, or an event – a recent college graduation with his twin, a holiday – it puts me on another grieving cycle. From what I understand, I may be on numerous grief cycles at one time – each one like a death. There are no words – the sadness, the pain, watching someone you love suffer day in and day out with physical and mental pain is horrendous. To be present and not be able to help in any way, shape or form is beyond words. I will never understand why my innocent baby son grew into a 22 year old while constantly regressing and in continual chronic pain…. I wish to die one mine after my son so that I know he did not end up in a residential institution because no one can care for him on a continual 24/7 basis. I’ve been to the residential placements – the smell alone would drive you away. After a 2 hour tour/observation, I wouldn’t place a goldfish in a residential placement let alone my own son. I commend you on your bravery to write about caregiving. Just writing this paragraph makes my heart hurt beyond belief.
Dear Suzanne, my heart both breaks for you and soars at your unconditional love for your son. My brother was inpatient 60 days before he chose to go to a snf, which broke my mother’s heart. After 24 hours he requested ‘palliative sedation’.The care there was . . well I wouldn’t call it ‘care’.
You are welcome to write here anytime and pour out your soul, frustrations, triumphs, whatever. I can’t begin to imagine your day-to-day life, you sweet thing. But I do understand.
God Bless You
xo Colleen