Being a Caregiver
It's easy to focus on everyone and everything other than yourself. In this online support group, we focus on the "i" in Caring and your role as a caregiver -- offering tips, advice and support to help with self caring.
Additional resources that may find helpful:
Help spread the support to more people in need -- Please tell a friend or two. Thanks!
What's New Today
I feel I am here under false pretenses. So many of you have been and will be dealing with caregiver situations for a long time. We are about to be set free of the situation.
My husband has needed virtually full care since late Feb of this year. I won't go into details at the moment. What I find extremely upsetting is that I have become angry, resentful, impatient, guilty and I am sure depressed. The whole situation has resulted in me questioning whether or not my husband truly loves me or am and have I been just someone he keeps around cuz he needs me.
While he will soon be back on his feet again and physically independent once more, I fear we will never really return to the place we were before this. I have become someone I never thought I would be.
I am not sure what I want from here or that anyone can truly do a thing for me .. I just needed to say it.
Ooph! Frustrated and tired. Husband has been ill for 10+ years. Seems the more I help him the more I feel like he's playing mind games to manipulate me. If I get angry, he gets a migraine that makes him helpless. If I get sad, his stomach hurts and he gets diarrhea. If I go shopping alone for a few hours, he ends up in the hospital that very night. He says he can't bathe himself. But, he can get out of the bed and go to the kitchen for a snack. After which, I bathe him. So many little issues. And big issues. Of course, family is completely "helpless." Intimacy...ha!! Yeah..not happening. Anyway, he finds that kind of comfort on the computer. I don't do it for him anymore. I'm only a nurse and a housekeeper. If he would just try to be kind and appreciative! But, he's not even trying. Just complaining 24/7. If the sun shines..its too hot. If there is a rainbow, it's a bad day for weather.
Mom is 81 and suffers with severe spinal stenosis and I live and take care of her which is fine,however I find myself using all my savings to buy the extras she is very low income on Medicare/Medicaid in PA. Aging and Adult Services will not help because she has all her senses. She is physically unable but it does not seem to matter. Any suggestion??
Posted this in another group, but wanted to share my story here because I just found this group and it's very relevant:
My name is Julie and it's my first day in the group, but I've been struggling a lot lately. I lost my mom to Metastatic Breast Cancer when I was 19 (about a year and a half ago). I took 2 years off mid-way through my undergrad at the University of Michigan to help out with caring for my mom and to attend grief therapy. I'm very anxious about heading back in the Fall.
I recently got a job at this beautifully amazing and inspiring peer-to-peer cancer support non profit called Imerman Angels. It's been a blessing for me to walk into a work environment where almost everyone has their own cancer story. Not long after I started, though, my mom's sister and my aunt was diagnosed with Colon Cancer. It seems like cancer is an inescapable thing in my life. My mom first got diagnosed with Breast Cancer when I was in 4th grade, then my dad with prostate cancer in 7th grade and then a week before leaving for college, my mom was again diagnosed with stage 4 Metastatic Breast Cancer. Now, it's my aunt (and I'm one of the primary caregivers).
I guess I'm just incredibly drained and tired of watching so many adults that I'm supposed to be able to rely on and that I love suffer and have them lean on me. Just felt like I needed to share that and I like the idea of online support in addition to my Mentor Angel.
Just because it helped me so much, I wanted to share a little more about the organization for your sake as well in hopes that it might be a good, free resource to remind you in another way that you're not alone.
Imerman Angels is a free peer-to-peer cancer support organization where we match both patients and caregivers to 'Mentor Angels' who have endured very similar circumstances. My 'Mentor Angel' helped me a lot during my mom's journey and later with my bereavement. She was also the youngest daughter of a mother who had the same type and stage of cancer with the same treatments, similar side effects and was trying to handle caregiving while also trying to be a normal college student. She was such an incredible person that I now became a Mentor Angel to another daughter.
You all seem like incredible people so I just wanted to provide that info so that you know it exists because I wish I had known the option was there even earlier than I did.
Here's the link if you want it: https://imermanangels.org/get-support/
I'd be happy to talk to anyone further about that support if you have questions and obviously about my own journey. I look forward to getting to know everyone more!
about 1 month
I take care of my 25 year old sister who suffered a brain injury during neurosurgery to remove a cancerous tumor in the center of the brain. She, prior to the surgery, was cognizant, verbal, and capable of physical independence. After the surgery and an unexpected bleed in the brain she barely functions. She's bedbound, partially paralyzed on one side of her body and barely communicates (sometimes) by nodding or shaking her head for yes or no questions. I care for her half the day while my grandmother does the other half. My parents both work to keep up her insurances because we would be beggared if we did not have those. Neither of my parents offer much in the way of helping aside criticisms of what someone is doing wrong. I have two other siblings, one who is in her early 20s and seemingly finding every excuse to be unavailable or out of the house and a brother who is still in high school and incapable of helping.
Some days it just feels like a constant nightmare that's getting to be the 'normal' now. She was my best friend and most of the time now she stares vapidly at me if she's awake, or sleep if she's not coughing out mucus balls from her trach. I barely get out of my parents home, I have no bed to call my own because there is no room for me aside sharing my grandmother's bed when she's awake for her shift, and because of the family situation it doesn't look like anything will change unless she gets better. I'm going to be turning 27 this year and for the last year and a half I've been working this unfair schedule (12 hours a day, 7 days a week) watching life quite literally pass me by. I graduated from college only to have this blindside my family and now it feels like my life is slipping away for a fantasy that she'll magically get better enough to not need constant care, which feels like something that won't come true at this point.
The rub is my great grandmother was abused by her nursing home making any possible suggestion of a care facility FAR out of an acceptable turn of events. It doesn't help when even visiting state nurses agree this level of care is the best for her too. Everything feels balanced right now but it seems more like a pressure cooker to see who breaks first and topples the house of cards, me or my grandma. Whoever breaks first will undoubtedly be blamed for any terrible thing to happen to my sister in a care facility and likely estranged from my father especially.
I love my sister but this is killing me. I pretend everything is okay but I miss my bed and especially my life. I don't know how much longer I can keep coping and trying to breach the topic with my family is impossible. I just don't know what to do anymore.
about 1 month
I have a friend with MS who is slowly losing his mobility and gets frustrated when he can't do what he considers normal. He is running out of money and he is worried about living in assisted living. He is currently in a rented apartment with caregivers. Any advice on a cheaper facility/caregiving agency? He currently pays $25/hour for 12 hours every day. He slowly needs more then the 12 hours he currently gets, plus ADLs assistance and physical therapy.
Louise Holmes said...
about 1 month
I have been caring for an elderly uncle for the last few years and he is steadily gone down hill. He recently broke his hip and spent time in a rehab facility. We have had PT, OT and a nurse coming in once a week each. All is well with that. Recently he has become very nasty with me. Yelling over the smallest thing. He lies about everything big and small, to me and the home health people and becomes extremely agitated when corrected.I don't believe were to the point where he doesn't know better, he just is untruthful to make himself look better. He has become very forgetful and I have brought this up to his primary care phys and the phys blows it off as " to be expected:. I need to know where to start to get some help with this. Money is very tight but he does have medicare.
about 1 month
Beds provided by Medicare - can anyone give advice on the least noisest bed for a patient being treated at home? We have a bed provided by Medicare and it squeaks with even the slightest noise. The patient (my father) and the rest of the family are exhausted from the constant noise all night. At a minimum, we need a bed with rails and electronics that enable us to raise dad’s head. Any advice would be appreciated. Thanks.
about 2 months
- As part of this job, you’ll have to do personal care. How comfortable are you with that?
- Why did you become a caregiver?
- What do you find most rewarding about this job?
- Is CPR a requirement for most of the children you take care of?
- How much experience have you had?
- Describe a time when you faced a difficult client and what did you do to resolve the problem?
- Have you ever had a medical issue where you didn’t know what to do, and had to go to the hospital?
- What skills can you bring to the table that other caregivers can’t?
- Describe your career goals as a caregiver?
- Is there anything in the job descriptions you are uncomfortable doing?
- What are three words that describe what a caregiver should be?
- Why do you want to work in this field?
- What are three strengths and weaknesses you have while caring for children?
- Did you ever change a part of you because you wanted to get the job?
- Is caregiving a job for everyone? Please answer all questions. I am doing a research project for school.
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