Good survey, but hard for me to answer. It depends so much on the day and the way the pendulum is currently swinging. I'm a long-term care giver; have been providing help and varying degrees of care to 2 aging parents beginning in 1998. Since then, between my 2 parents, they've had 3 brain surgeries (shunts for hydrocephalus), 2 open heart surgeries, 2 cataract surgeries, gall bladder surgery, and prostate surgery. My mother also developed an infection (Clostridium Difficile) which lasted 9 months and required hospitalization and multiple trips to doctors; I developed it as well and was sick for about 3 months. Now my father has probable dementia and refuses treatment.
Between Dec. 1st, 2007 and August 1st, 2008 alone, my parents each went through open heart surgery and my mother had 2 brain surgeries (within 6 months of each other.)
So add to your list having to care for 2 ill people at the same time (my folks are divorced)...
I guess for today, I'd answer, "Other/ Feelings of frustration," as that's what I'm feeling with regards to my father; very frustrated.
Looking forward to seeing what other people vote for.
Welcome to the Caregivers Forum. I am so very glad that you found us and took the time to share your caregiving story. You have faced a lot of caregiving challenges. I would agree that it depends on the day as to what the biggest challenge may be.
Yes I have cared for both of my divorced parents in my home until May 13th when my father went to his heavenly home. My caregiving began in earnest in 1994 or 1995. Prior to those years I have been responsible for doctor's appt and caregiving for them or their second mates.
I took care of my grandmother in my home for several years also. I can't remember when I wasn't a caregiver....so it sounds like we have a lot in common.
Your plate is overflowing. How do you keep your sanity? When do you find time for you family outside of your parents and yourself?
We are here for you and I hope that you will visit often. I look forward to getting to know you.
Thanks for your note. Wow, you've been through a lot. Sorry to hear about your losing your Dad this spring.
You mentioned not remembering when you weren't a caregiver. That's how I feel sometimes. A former co-worker/friend I lost touch with when we moved away years ago recently contacted me again. It's funny; I've had a hard time responding to her note and she's a really enjoyable person. I think it's just a matter of, how do I explain what's life been like since I moved back to Wisconsin? Where do I begin? It feels easier to stick with people closest to me that have known me before as well as during my caregiving years.
I've been doing an OK job of keeping my sanity. Some days are definitely better than others. I saw a therapist with a special interest in caregivers earlier this year for about 2 or 3 months, and that helped with the more acute stress at the time. I know what I need to do to take care of myself....like many other people, sometimes I just forget to do it or don't follow up on what I know in my heart I need to do, for a variety of reasons.
Thankfully, I have 3 close friends that help me laugh and keep my sense of humor, and an incredibly wonderful husband that I wouldn't trade for the world.
My friends have known me for 15-30 years and have truly been lifesavers during the most challenging periods. Not surprisingly, all 3 have been caregivers themselves...
Thank you for sharing yourself and your perspectives as moderator for this forum.
I really appreciate it, and know that others do as well.
Bye for now,
I just found this forum and it's comforting to know we are not alone. I have been caring for my husband since 1995, before we married. He has had Leukemia, Hep C., 17 bulging degenerative discs, cirhosis, failing liver, and now maybe liver cancer.
Somehow we had two kids in the process - and a third moved in with us from a former marriage. I lost my job end of June - just before a long hospital stay for him and the cancer testing. I think there was a plan that I am supposed to be at home right now with family. We'll find out Friday the MRI results.
The result lately is he sleeps most of the time and wakes middle of night to have "breakfast" (ice cream) and meds. He wants me home but the kids want to get out of the house after days of being homebound. They don't complain too much - but they start on each other until I can't stand them being in the same room.
We have all been affected and two of us are on meds to help depression. One has started getting in trouble - as he acts out without his father "present". The youngest just wants to understand and wants attention. He is my second mate caregiver - bringing some joy to his parents when they feel low.
Taking care of three grief stricken children while I grieve is a worrisome prospect. I pray we have more time - more good out of bed time together.
Between us we have four living aging parents who are in other states. In 70's and 80's - we'd like to be there for them too but that cannot be for now.
Friday we'll know more. I pray for strength and little fairy godmothers to come for all of us. I have been asking for Mary Poppins for years. Take care!
My heart goes out to you. Your plate if over flowing!! How are you doing?
I learned that the most important thing a caregiver can do is to take care of their self. That is NOT selfish. It does not mean that you love the person you are caring for any less...it means that you have to be well enough and strong enough to be able to be the caregiver. So take those moments for yourself when they are offered...and Be Very Good to You.
What were the results of the MRI?
I do not know if you are eligible for Hospice. If you are PLEASE contact them. There is much mis-information regarding that wonderful service. It is not for just for "the end." Ppl can be on Hospice for years. Indeed ppl have been discharged from the services because they were no longer deemed, end stage disease. Their knowledge, support, education and caring is indescribable. They will help your husband, you and your entire family through whatever lies ahead. They will even help fulfill your Mary Poppins wish! :)
I apologize for my tardy response. I have had some urgent medical issues of my own of late which has limited my time on this Forum. I do apologize again.
Our children suffer so much when they are young and facing such heartbreak. I think it hurts us just to see their pain.
Your parents must certainly understand you inability to be there for them right now. Send them notes, cards and letters when you can find the time. If you can't just pick up the phone and say, "I love you.".
Please let us know how you are doing. I cannot express the empathy that I feel for you and your family.
New to this community. Have been my husband's caregiver since his stroke Jan '2009. Also provided care and support for his mother and brother (mentally ill) who both lived 11/2 hr from us. She passed away in May and we then moved his brother to our town. Youngest daughter now works with watching over him.
Bil and I were both self-employed, so income has changed drastically. My time is spent taking Bil to doctor and therapy sessions at a nearby university. His insurance doesn't pay for therapy so working with O.T. And speech students at the university has been a great help and relief. Currently Bil has been admitted to the hospital for tests. He has had chills, sweats, pain on his right side (stroke left him right side with right sided paralysis and expressive aphasia) NO fever, but chilled and shaking so bad. This has happened about five times in the last month. I need to stay with him at the hospital to help communicate for him -and I don't always get it right for him.
Largest challenge is different from day to day - currently it's time for me. Other times it's guilt or anger. It's frustrating to see 'friends' who no longer call or visit for various 'reasons'. I won't list all their 'reasons' here.
Sometimes it's the frustration of not enough time in the day to accomplish what needs or should be done.
That's all for now. Need to get back to Bil.
im felt sorry for what happen to your family. ....i thought taking care of mentally retired-ed patient is the most difficult to manage. but when i read your post it wasn't, because what you've encountered is more difficult than mine.
Hi my name is Shannon, I take care of my husband Oliver he got into a motorcycle accident April 28th 2009. That is when my world turned upside down more than once. He was my caregiver I have Fibromyalgia and MS now that the table has turned my biggest challenge I believe is "losing myself or just trying to hang on to what sanity I have left". Oliver is totally dependent on me for everything from bathing to dressing and everything in between. I have no help we cannot afford a home care agency and because of that Oliver has no Health Insurance. I made a promise to God asking him to let Oliver live I promised to take care of him and never leave him and I wont I love him so much and I wouldnt know what to do without him in my life. I just hope I dont lose myself or go crazy...All I know is that I pray every day for some kind of guidance
All of you are so wonderful!! To care for another human being is a privilege....and only those with Special Gifts can do it successfully. You are all gifted!
You're in my thoughts and prayers.
My experience in 'needing' a caregiver is to find someone who does not get themselves EMOTIONALLY involved but looks at the issue of care needed and is strong enough to focus on that issue. I have seen many a death and the thought of needing someone there at the right time of care, has always been an issue with me, sometimes unresolved. Not all things have an answer.
Being a caregiver requires a STRONG constitution to look at the issue needed and focus on how this can be accomplished. My caregiver also takes the time for both of us to go in an outing when I have a good day and make the best out of this without the sympathetic or constant 'attention' of "are you ok'?
We go out for an outing to enjoy what we see and pay attention to the quality of what we enjoy. It is a good distraction from pain issues and helps get through the day for both of us. Yes, more care is needed at the end of this outing for me, but the quality of what the days event have brought make me sleep better after a pill or a good rubdown for pain issues that I have constantly but the days event are worth it. These event don't happen often but when my pain issues seem to be under control, the outings are worth the pain.