IT ISNT ALWAYS ABOUT US: The Complications of Care Giving

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Legislative Successes. Spread Awareness. Get Local Support. Join Our Support Community. Shareable Toolkit. Sign Up for Emails. Tell Your Story. Media Relations. Contact Us. Annual Report. National Lupus Partners Network. Roles are redefined when you become a caregiver. Self-care There is a danger, though, that caregivers can become so busy and overwhelmed that they push their own health aside.

Was this resource helpful? Yes No. Coping with lupus , I care for someone with lupus. Resources for caregivers. Caring for children and teens with lupus. This disease is slowly breaking down our entire family. But I know we are not. We visit them often and my dad still brings my mom over for dinners but it is getting very, very difficult. Some days my mother is very unpleasant and I feel such guilt that I dont want to be around her.

We have asked these questions so many times about what to expect at the end, what exactly will happen, how long will it take, etc. The answers are horrifying. Aside from AD, my mom is technically very healthy overall. Some days she is angry and combative and doesnt talk or interact at all. Other days, she laughs, reads words and runs around hugging everyone and saying she loves them. The fluctuations are radical and confusing to us all.

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How long can this go on? It is like a never ending roller coaster. My heart and prayers go out to everyone on this blog…everyone that has faced this disease with a loved one. I get comfort and solace in reading and learning from those who have experienced this and are willing to share their hearts and their journeys with others.

You give me hope that even during the most difficult times, there is love and joy yet to come with my mom. Today is Mothers Day. Thank you all for your stories and support! Thank you for writing. My Mother died today. She had been on a long slow decline since breaking her hip in , and my brother and I have been taking care of her in her home.

I worked out of state for six years to qualify for a pension I knew I and my brother would need, she cried hearing my decision and I came back every weekend, doctor or nurse visit, and when I retired moved home again. I feel so much guilt and shame and I imagine that not being able to take care of parents at home causes the same feelings in others, athough we do what we have to do.

I was able to have the conversations I would regret not having nonetheless. Your Mother has a lot to be proud of in you. Yes, hearing. I get information and give input through her daughters.

Roles are redefined when you become a caregiver | Lupus Foundation of America

Her husband despises mine for petty reasons and mine reciprocates and refuses me any contact with her. We moved closer to our home state in part to be nearer to her. He is still mostly in denial, yet refuses my help. So I say to all on this trip, put aside your differences and live for what you have now. Do what you can, when you can and lose the guilt. What bothers me the most is watching myself decline. Mean while it feels like watching a movie of myself. How do you feel?

Depression and Caregiving

Sending you strength and love. My mom found cannabis oil very helpful as well as coconut milk based protein shakes.


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  • Coconut oil converts to ketones in your liver to feed the brain, so it shrinks less, and slower. Cannabis oil helps with anxiety, sleep, mood and attitude. Take good care, Frank. Thank you so much for this wonderful article! I have also Accepted that Inevitability, and am at peace. Thanks be to God.

    This was an amazing article, albeit heart wrenching. I was diagnosed with pancreatic cancer 4 years ago. I had the most complicated surgery there is, even more so than a heart transplant. Whipple surgery…10 hrs. My digestive tract is a mess And basically keeps me housebound. I also married a second time to someone who is non sexual, emotionally vacant and distant. I had hoped that with our separation would come a chance to meet and enjoy a less lonely life with someone more like myself.

    Then the diagnosis. I am in tearful as I write this knowing that I can continue to go to the gym, take my ginko biloba and yet the end will come….. As an adopted child even at 60, it was the most horrendous experience and I wish it on nobody. I would wish it on nobody. Definitely very important if you have a close family member sufferint this illness essential to document ourselves.

    Courage to all. Mr Ettenberg.