questions about encouragement from caregivers

    • Anonymous
      October 26, 2007 at 12:46 pm

      Hello Friends.

      As many of you know, my mom is sick. She has lung cancer, had a lobectomy in August and complications since. She is now in a nursing home for rehab and will be coming home in about a week. She has done therapies and there isnt much left to do. They told us that she wont get better, there’s nothing she can do to build endurance, etc. She is on oxygen and with activity her pulse oxygen levels drop drastically.

      She lives alone in a big house. We are moving her to a smaller place that she co-owns with her nephew and will sell her house. We’ll need the money to pay for her care. My sister and I are at a loss as to how we’re going to take care of her. We both work full time, have husbands, and I have a small child that needs me.

      She will need assistance with meals, cleaning, bathing, etc. We’ll have visiting nurses come in and a bath aide…and we’re searching for other outside help.

      How do we encourage our mom to fight ? How do we let her know how important it is to me that her grandson has as much time with her as he can ? She is the last…my hubbys mother has alzheimers and both of our fathers have passed years ago. My mom has no sisters or brothers left.
      She is the leader of our pack and we are going to lose her.

      I need help as to how I can encourage her. I dont want to be selfish to ask her to stay…but, I cant help it…for my sons sake. He loves his Nana so much !

      thank you all for your continued prayers…you really are the best.


    • Anonymous
      October 27, 2007 at 9:31 am

      Stacey, from my point of view you are doing and done everything that is humanly possible to help your mum, I have read all your posts and kind of been with you all the way, I know it is so hard to let go of our loved ones but there is coming a time when only God knows the answers and what is gonna be tomorrow. Given your situation and your experience I think is very hard for any of us to GIVE YOU ideas on how to cope with everything or how to deal with everything, you are a rock, for me at least , someone to look up to………remember we are not Gods and we can do only that much, pray and keep your mum as comfortable as it is possible . You are in my prayers every day, God bless you!!!

    • Anonymous
      October 27, 2007 at 9:57 am

      From my heart I understand. I have been caregiver to my mom ever since my father died in 2000. I was severely damaged by CIDP (I have my own caregiver for some things) and each year it gets worse with my mother. If you need someone to talk to PLEASE email me, maybe two heads can help each other.

    • Anonymous
      October 27, 2007 at 5:07 pm

      Stacey, I know what you are feeling. After going into overdrive when I heard my dad had inoperable cancer, I became the caregiver from hell. I was sure I could “fix” things. I think it was the first phase, way before acceptance, that I felt the need to keep him around. For a long time I didn’t even consider asking my dad how he felt and what he wanted out of the time he had left.
      God gave our family 6 months to share and talk and learn everything we’d never asked about my father. I look back at those 6 months as a gift.
      You will know what to do and how to handle things as time passes. It won’t be easy, but don’t waste any days you have with your mom. Have no regrets.
      We found our local Hospice care to be the ultimate help in all ways. It was difficult to make that call until we realized that hopsice is not about dying, it is about the quality of living, for both family and the patient. Patients are sometimes dismissed from Hospice care because their prognosis is changed. They are an amazing, caring group of individuals.

      Good luck, my prayers are with you.

    • Anonymous
      October 27, 2007 at 6:46 pm

      Hi Stacey,
      I too went through lung cancer with my Dad and I really encourage you to take JayDees’ advice and get some support from the hospice people in your area. It is true that hospice is about learning to live well with the time that is left. And it the people from hospice can be an incredible source of information, support and comfort. Please look into it. For you and your sons sake. As always I am thinking of you. Write me if you need anything.

    • Anonymous
      October 29, 2007 at 7:46 am

      Thank you all for your replys.

      I think the Hospice idea is great, I just dont know if she’ll qualify. When they did her lobectomy, they said they got all the cancer and she was to start chemo. Pneumonia set in and too much time passed and she is now not able to do chemo. She has COPD and that seems to be the monster that has kicked in now.
      She also has a mass on her uterus and we go to the Ob cancer dr on Wednesday. Today is her appt with the lung dr. I hope the OB dr will remove her uterus but a few weeks ago, the cancer dr said her lungs arent well enough for anesthesia. I do know that they are going to do a needle biopsy in the office Wednesday.
      She is having alot of intense pain in her lower tummy that I just know has to be from the uterus.

      I kind of hope also that the lung dr will recommend pulmonary rehab…that will possibly buy her more time in the nursing home. I doubt it but I’m hoping.

      With hospice, I dont think she can go to dr appts or do anything preventative.
      I’m not sure on that and plan to make calls this week, starting today.

      The cancer dr said a few weeks ago she isnt terminal…but she has to get up and get moving. the only time she gets out of bed in the rehab nursing home is for meals and Physical therapy, bathroom and showers. 90 percent of the time she is laying there. I ask every day, lets go for a walk mom….the answer always the same…No.
      Her oxygen levels drop…

      I imagine that in time she will struggle to breathe. The PT girl told me that it wont matter how high the oxygen is turned up …the stats drop regardless.

      thank you for your prayers and encouragement…


    • Anonymous
      October 29, 2007 at 8:05 am

      I really feel bad for you. I will remember you and your mom in my prayers. Be sure you remember to take care of yourself. You are important to so many people!!

    • Anonymous
      November 1, 2007 at 11:36 am

      Hi Stacey,

      My heart goes out to you. I lost my mother last Dec and it has been extremely difficult to accept. My mom was only 67 and she died unexpectedly in her sleep. I miss her more than anything.

      All I can say is that I hope you get to spend as much time with her as you can.

      Your family is in my thoughts and prayers.


    • Anonymous
      November 2, 2007 at 10:24 am

      Hi everyone.

      We went to the pulmonary dr on Monday and he said she also has pulmonary fibrosis. The same disease that Robert Goulea died of this week. It’s a deteriorating disease and will only get worse. She will go home from the nursing home Monday or Tuesday depending on insurance and he said she will not be able to be alone and couldnt say how long she’d be able to stay home.
      From that I got that she will end up in a nursing home some day. I dont know.

      She’s not doing any better…not fighting…not walking or sitting up like she’s suppose to. She really wants to go home so we’re hoping maybe she’ll do better there.

      She is only 68 but has aged so much in the last few mos. She’s also lost more weight. Since Aug 7th…30 lbs.

      We have a very tough road ahead….thank you all for your well wishes and prayers and advice. You’re the best group !


    • Anonymous
      November 2, 2007 at 10:26 am

      and the uteris issue…they couldnt do a biopsy b/c there wasnt enough there. She evidently had a procedure years ago. He said she could do a DandC but her lungs cant take anisthetic. He said it may or may not be cancer but she opting no treatment so it doesnt really matter.