Being a caregiver when you live with pain

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    • #4447

      I was the caregiver for both of my in-laws. My MIL had severe heart issues and would only let me help her. My FIL had dementia and he had to move in with us after she passed away. He lived here for over 8 yrs and he really disliked me. I know it was the dementia and not how he really felt but some days it was all I could do to take care of him because my pain would be so bad. Where we live there are no help, so it was all me through the week because my husband worked out of town. He helped on the weekends. My advice to anyone going through this is to find whatever help you can, a day care center, someone willing to come into the home and help, whatever you can get. We want to make sure our loved ones are well taken care of but when you live with pain, it drains you some days and you are no good to anyone then.

    • #22152

      A couple of months ago, I spent 4 weeks sitting with a dear friend while she was in the hospital. Everyday I was there for 7 to 12 hours depending on the schedules of other friends and family who were rotating in to make sure that she was never alone. It felt good to be of service. It felt good to help my dear friend whom I’ve loved for decades. She had ALS and passed away earlier this week.

      It wasn’t physically demanding. It was a matter of making sure that her communication tools were close at hand since she was not able to speak on her own. She had a very cool computer that utilized eye-gaze technology for her to type out messages that the computer would speak or she could email to folks. I was there to take notes, wipe her tears, make her smile, make her laugh. We discussed pain care, hospitals, healthcare, end of life decisions and current events. We pretty much solved all the problems in the world.

      It was a great relief when she was finally discharged and went home to her accessible cottage with 24/7 caregivers. She spent her final 10 weeks inviting friends and family for a few hours visit at a time. Making connections, encouraging each of us in our endeavors. Her sister and her daughter were by her side every moment making the most of their time together. Through it all her eyes sparkled and her smile lit up the room. She was in control and she made all of her own care decisions.

      I’m grateful that I was able to play some small positive part in her journey.

    • #22248


      First let me say, thank you, for sharing the beautiful journey that you went on with your dear friend. I also want to share my sympathy for the loss of such a wonderful friend. I have found over the years that when I have been called to duty to be a caregiver for a friend or loved one that my pain goes to the back burner. I do not have time for it and somehow I was always able to force it back so I could do what needed to be done and what I wanted to do for the one I was caring for.

      It never ceases to amaze me that we can find ourselves learning new and wonderful things through life. It is a gift to be called to duty to be a caregiver for a loved one or friend and I am grateful and cherish those times I was called to put on my caregiver uniform.

      Take care,

    • #422191

      Nice post…

    • #434962

      Sad to hear your Story, Yeah!! It’s actually very difficult to cope up with certain memories and grief. Taking care of elderly parents at home is a task not less than handling any kid. I must appreciate the work, caregivers and the elder care lawyers are doing for the elderly parents. May god give you more strength to fight with the troubles in life.

    • #437852

      I have been taking care of of my mother for 5 years. During this time I also took care of my father for 2 and 1/2 years until he passed. This has been very challenging for me, I am disabled from a crash, I use to be a flight paramedic until 2006. After surgeries and a quarter million dollars of titanium, they put me back together.
      They said I would never walk again, after 3 years of daily pt and swimming everyday I started walking with a walker. Six months of more swimming and a lot mileage on that walker I now use a cane.
      I have horrible chronic pain in almost all major joints, pain from scar tissue. My back is the worst I did fracture altogether 10 vertebrae’s. I have good pain medicine so I am very Blessed that helps me keep moving slowly, but keeps me going.
      Five years ago when I started helping my parents, I moved in with them to help full time. It was going Ok, I just had to take things slow and take breaks. I also could not do lifting so this complicated things. My dad could help most of the time. He was having problems with is short term memory and fibrosis of the lungs.
      Then I was diagnosed with Ovarian Cancer and Uterine Cancer, I was 46 years old. I had to have another major surgery, had to travel two states away. It was complicated because of my prior surgeries. I came back to my parents home after 2 weeks and started taking care of them and started triple dose chemotherapy. During my year of chemo I still did all the shopping ,cooking, cleaning and everything else my parents needed.
      During that year I ended up in the hospital for a couple of weeks, three times due to kidney and liver failure and pneumonia. After a year I was able to stop chemo, I have been free of both cancers for 4 years. I still have to be easy on the meds cause my kidneys did get some permanent damage. The chemo made my chronic pain even worse. I had no idea your bones can hurt. Now I have a lot of muscle, joint, bone pain. I also have nerve pain in my fingers and toes.
      I am still taking care of my mother full time. She is 76 years old and has arthritis badly. She is in her lift chair 23 hours per day. She can move, she does not want to. I have tried everything to get her moving, but she fights me on everything. She tells me she is retired and just wants to sit and watch tv and read. Her muscles have gotten so weak when she needs to leave the house I have to hire aides to lift her out and in the car. She can walk with a walker.
      I talked to her doctor, he has her on home health now pt, and aides to help her shower. She needs to do these exercises everyday. But she is only doing a few compared to what she is to do daily to increase her strength.
      She will not go into a nursing home, yet she is not working to stay strong enough to be in her own home. Everyday I push myself past my limits to help her and she does not even notice how much this effects me. I have discussed it with her, her mind is sharp.
      How do I help someone who will not help themselves? I do not know how much longer I will be able to help her unless she works with me.
      I have two brothers, both think she should be in a nursing home. One comes around for a couple of hours every few months. My other brother will come if I call him but he works two full time jobs and has a family. So everything falls on my shoulders.
      I am a chronic pain advocate, I help people all over the country with emotional support, guide them with disability paperwork, insurance problems, worked with case workers and help people find the right doctor, yet I cannot help my own mother.
      Does anyone have any advice for me?

    • #438254


      I am sorry to hear all you have been through. I took care of my in-laws and after my mother in law passed we had to move my father in law in with us. He had a few health issues but nothing major. He did not want to do anything but sit and watch tv and sleep. It got to the point that he could hardly walk and was falling a good bit.

      His primary care provider told me that it would only get worse over time. He knew that I also lived with chronic pain. His advice to me was to put my father in law in to a rehab for a while so that they could work with him. He really did not like the rehab because they made him do PT and move.

      After he got discharged he would do his at home PT and move more because he did not want to go back to rehab. Maybe that is something that could help you with your Mom. I wish you the best

      Gentle hugs
      TPC YaYa

    • #438429

      My nephew is autistic with severe back and neck pain recently. I gave him medication prescribed by the doctor. He gets relief for a short while after that again he complains of back pain. One of my friends suggested a chiropractor. So I searched in the net and found a chiropractic near me. Do you think I should go for this treatment which is completely holistic method of treating the entire body?

    • #438430

      Sorry to hear your nephew is suffering. I have some experience with back pain and chiropractor care.
      If he has seen a doctor and they can’t find any broken bones and the meds are not helping, I think Chiropractic Care would be helpful. Chiropractic care really looks at the soft tissue and joint issues much more through then a regular MD. They will also check how his spine is doing. They can do manual adjustments that can make a real difference in pain.
      They also usually spend a good amount of time explaining everything they are doing and would come up with a treatment plan.
      If you make an appointment make sure to have his xrays from the doctor sent to his office. This will save your nephew the little radiation and you the added expense. If your Doctor did not take X-rays the Chiropractor will decide if he needs them. A Chiropractor is a Doctor. That is why insurance covers the visits compared to where a insurance company will not cover acupuncture. Some chiropractic doctors do acupuncture, but that is whole different treatment.
      Good Luck,

    • #438431


      Thank you so much for the advice, it means a lot to me. As I’m alone at the moment taking care of him, I keep getting doubts regarding his condition. But I’m happy to see that I’m getting some amount of support.

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