Caregivers Support Group
A voluntary caregiver is a spouse, relative, friend or neighbor of a disabled person or child who assists with activities of daily living and assists those unable to fully take care of themselves. The challenges of a caregiver are unique and sometimes it's hard to find people to talk to who know what you're going through. Join the conversation and find others who...
Hi I am new to this sight so excuse me if I seem to not know what i'm doing I keep retyping this but it seems very strange anyway I am caregiver to my husband he has a brain tumor. He has had two surgeries the second one four years ago left him unable to swallow so I feed him through a tube in his stomach his mobility is very limited he walks with a walker in the house but out of the house he uses a wheel chair as he goes very slow in he walker. The tumour is no longer operable and is growing again so he received radiation this summer. Now he is starting to have major pain in his face so he is on more pain killers. I have managed to live more or less in denial to this point but I so fear loosing him. He is my rock and my soul mate just over a year ago my son from my first marriage was in a car accident and is now in long term care. He has a severe brain injury and has just now started to talk. My husband is the only one who seems to keep me sane. We bring my son home 2 days a week as it is becoming harder and harder for my husband to leave the house and I am his caregiver 24/7 . I just wonder how do you all stay strong some days I just want to sit and cry.
I was the full time caregiver to my mother and father. In 2003 my mom had a triple heart bypass surgery and complication led to her needing a leg amputation. She was unaware of the severity of her condition till after she woke up six weeks later with a missing limb and not able to talk or hold a spoon. 6 weeks of inpatient therapy helped her to speak again and move around in a wheel chair. Her amputation didn't heal correctly so we did a years worth of wound care and physical therapy. Her heart continued to decline and she needed a pacemaker. Then we spent every six months in the ER for heart attacks and pacemaker shocks. Then my father was diagnosed with Esophageal cancer so there were trips to physical therapy, chemo, radiation, follow ups, labs. My father lasted 8 mo. Unfortunately they could not fix him. My mother hung in there a few more years but her heart continued to decline in function. The main stress came with trying to work, attend college, and care for her while dealing with job loss, 2 years of unemployment, my own illnesses, and paying for 14 different meds for her. Then one night I was so exhausted I failed to realize how sick my mom was. She woke up at 3am not feeling well I helped her to the bathroom, and back to bed and by the next morning she had passed away while I was sleeping in the next room. I will never know if it was painful, or quick. If she called out for me or just slept through it
There were times throughout this decade where we yelled at each other because she was stressed and I was too. I wish I could of handled things better. Everyone tells me I did a great job caring for her but I feel like it was not enough.
I could of handled it better, I could have not let her see my stress, not maker her feel like it was her that was causing it. I did do a lot of crying alone in the car, bathroom, my room. The one thing I did not do is ask for help. I should of set up hospice and gotten companion caregivers just for an hour or two so I could take a walk or sit at the park. I did not recognize when it was nearing the end for my father or my mother. I would have talked to them differently.
If I would have found a site like this then.... a place to vent my stress would have helped too.
I waited all day to see if anyone else would reply to you. I was very disappointed to see noone had, especially people who claim to be caregivers on this site.
I understand about crying...I do it alot...I am a 24/7 caregiver for my husband and each day I pick myself up..brush myself off ..and continue taking care of my severly damaged husband.
Hang in there. I'll friend you so I can help you.
Love and hugs, Patricia
You did ALL you could. Pat yourself on the back and feel proud.
You need to be kind to yourself and let it go !
Sorry it took so long for your reply...I try to let other's reply here but.....
Hugs and Love, Gwen
I don't know how people manage everything. But...it seems like we do, day by day, moment by moment. Prayer, phone calls, online friends, sometimes it is just acknowledging that you are doing something that is for you. I try to think of at least 3 positive things every day - there must be a "thing" component and a "reason" component. No replication! So, sometimes I may be grateful or positive about something I was grateful for before, like my husband. But...I have to have a different reason. It forces me to be in a positive state of mind, and to feel gratitude. Amazingly enough...I've done this for years, and I never really thought of it as something that I do for myself. But, when I forget to do it, I have more of a tendency to focus on the negative. So...ultimately, it is for me! :)
Hugs, Gwen
One day at a time sounds good: that's been my mottos since the PEs. I find it harder to care for an adult than it is to care for children as the dynamics are not the same. And my doctor has told me of the importance of making time for myself: we won't be of any help to our loved ones if we get sick (as I found out) or, worse, if we leave this world.
Making time for myself means reading a book or spending a bit of time on the internet. That goes a long way towards making all of this beareable.
Oh, and one thing I've been told, is that I'm not responsible for the adults I care for: they are responsible for themselves and I'm responsible for ensuring that they receive the care they need.