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.
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What's New Today
2 days ago
I am taking care of my father post serious femur surgery after he was told he is doing just find in an insurance paid rehab center before you go home. I am amazed at their definition of "well"...the standards for passing must be very low.. I am in the process of getting the long term care insurance approved.. The company I work with is very good but 23 dollars an hour and I must pay for the first 90 days. I can use them as little or as much as I can afford...:( I have to help my father get out of bed, use a walker, sit in the wheelchair, go to the bathroom.. use the walker again and then ,make it to the toilet safely. I ordered a raised toilet seat...it will come soon and help much. I am at the point of caregiver stress..I suffer from depression and had to retire early. I just do not have any relatives alive to talk to and only one friend is too busy doing the same thing for her father miles away. I feel very alone and that there is no concern for caregivers as a part of society much like mothers were in the past decades...taken for granted and left to just deal with their problems alone.
Jen H said...
9 days ago
I'm so frustrated. I'm an adult with serious medical issues and caring for my aunt who lives alone--for now. I am a retired nurse and my aunt is one of the many who assumes because I was a nurse at one point that I am an expert in all things medical so she constantly badgers me for the same information every time I see her as she has dementia. I completely understand why she is anxious and wants all of the information possible but going into a lengthy discussion about what blood pressure is, what is "normal" and what hers should be is simply exhausting. I 'get' where she is coming from with the loss of control, fear of new health issues, anxiety about the unknown, etc. I plaster on the "compassion face" and remain calm and together with all interactions but the way she yells at me constantly is trying at best. I 'get' that I am merely the "outlet" receiving the brunt of her valid issues. I feel so frustrated when I explain that "yes, you are taking a memory medicine" and she asks for the 92nd time "I am?" Her personality is becoming more...bitter, or hostile at times and then goes and says how grateful she is for my help. Again, I 'get' that her brain has changed and personality changes can be anticipated but...it's just hard. to take it and smile like its 'water off a ducks back'. And it's hard on my husband who listens as best he can but he gets overloaded as well. Thanks for "listening" Jen
23 days ago
I’d like to ask for advice on questions about caring for my disabled older sister and what I should be compensated for the work I'm doing. I am a widowed single mom to a 14 year old with a full time job. We have no living relatives nearby. Within the past year, my was diagnosed with Atypical Parkinson's with multiple system atrophy and progressive supranuclear palsy and is currently living in an assisted living community. I have tried to help her as much as I can, but am unable to take on much more. She’s given me power of attorney and named me as her health care advocate in an advance directive. I have advised her to hire a personal care manager, which she has done. She does not want to use the care manager much at all because of the cost, although she can afford it. She did not plan well for unexpected circumstances and is greatly concerned with every penny of how much things cost - unreasonably so in my opinion. I advise that she use the care managers when she goes to the doctor or the ER since the rep is an RN. She has many expectations of many things I should do for her – all at no charge. I feel I should be compensated for the time I spend managing her benefits from her job and navigating the bills and details of her home and car sales. I miss a lot of work handling these details and FMLA does not cover my time off for a sibling. What do you think would be reasonable to charge for handling these details? Please advise with your experiences or recommendations.
Lilly Bee said...
about 1 month ago
My mother is 91 years old and lives in assisted living. She has been living in this facility for 3 years. She is quite mentally sharp considering the health problems she's had so she understands she cannot go back home. But lately she has been talking about missing her home, and that she could have went back there to live by herself. I'm looking for the right words to say so she understands that it's not possible, she needs all the care and attention that she receives every day!. I tried to keep her at home after her back surgery 3 years ago but finding good help was impossible. We had meals delivered at noon but she was fussy about the food and often would throw it out. I had caregivers but most were young girls that were not experienced and mom didn't like them in her home. Ultimately I was the one that took over all the chores in addition to working full time. I truly understand she misses her home; what can I say to help her depression? Any suggestions would be greatly appreciated!
about 1 month ago
Hello. I moved in with my grandmother about 6 months ago to provide a some in-home care, mainly because she and her family were increasingly nervous about her living on her own. The care I provide is very entry-level. I work full time, so I really just cook dinner when I get home from work and am another body in the house at night. While I am at work, a cousin or a friend will spend the day with her.
Our family is well-trained in caregiving having been looped in to care for ailing elders over the years. I feel blessed by their involvement, and yet I still find myself struggling in this new position. Sometimes instead of responding to her with compassion, kindness, and patience, I am petty, selfish, and easily irritated, which in turn become feelings of shame and helplessness.
I know it's probably a combination of feelings that build into negative emotions. I'd like to have my own space to decorate and manage, and I often feel like this isn't truly my home. I'd like more freedom and flexibility with my free time instead of having to line up an aunt or cousin to spend an evening with Grandma if I want some time off. I'd prefer a little more excitement instead of coming home every evening to dinner and the news. I'd like to live with someone with whom I can share more meaningful conversations, but I don't feel free to do so with her.
I know exactly what kind of caregiver I'd like to be: selfless, attentive, resourceful, tuned into her needs, patient, able to inspire her to step out of her stilted routine. It's a high ideal, and I know I can't and shouldn't hold myself to such complete standards, but I feel like a failure for being unable to hold myself to even the simplest requirements.
So I guess that's my question: How have you managed to cope with negative emotions and selfish impulses that deter your effectiveness as a caregiver? How have you managed to get beyond self and truly serve?
debbie 521 said...
2 months ago
can someone please help me. I need help paying my rent we are about to be evicted because I could not pay my rent last month. I am a caregiver to my h.usband. who had a sah brain bleed and a stroke he is bedridden and needs my help with everything. if we get evicted i'll have to put him in a nursing home and I won't be able to see him anymore. I don't own a car my son who is also disabled and my self will be homeless. can anyone tell me were I can get some help? I tried the state agencys and the catholic charities in rhode island and no one can help me they have no funding.
2 months ago
I feel like no one understands how I feel. I'm a caregiver to my best friend who needs a kidney transplant. We've been so close to transplant but each time something goes wrong and the transplant doesn't happen. This last time hit me particularly hard because almost all hope for a soon transplant is gone. No one understands the disappointment or the difficulty of continuing to go through the highs and lows of hope. At this point, all my hope is gone. I want to completely disconnect from her so that I don't have to feel pain anymore.
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