How are you coping with caregiving? Open ongoing thoughts.

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RE: How are you coping with caregiving? Open ongoing thoughts.

by Ray725 on Tue Mar 13, 2018 10:18 PM

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Patty lovely to see that you are making a few changes but appreciate how difficult that is.  I have had a bad bad 2 weeks.  Was snowed in the house with 5 ft snow drifts for 4 days and that really dragged me down.  Thought I was doing OK until then but that seemed to have pushed me back months and am back struggling with the loss of Helen. Today was a bit better with really bright sky's. But was really good to see a response from the "old crew". 

Pete I really really hope that things are going OK for your girl.

Marge, Lisa, Gigi and all hope you are keeping your heads above water and doing OK

Ray

RE: How are you coping with caregiving? Open ongoing thoughts.

by Ahole on Tue Mar 13, 2018 10:58 PM

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Oh my gosh, Ray, it sounds like you had a bit of cabin fever and maybe too much time to think.  So sorry to hear that. I know how much you love your Helen. People may leave, but the emotions go on. You know, I'm experiencing a lot of depression now that the sun is out. What the heck is up with that? You would think signs of spring would cheer me up, but it just reminds me of springtime with my love and I miss him sooooo much!  I guess we will continue to have ups and downs for a very long time. But yes, we are an old crew now, and joined at the hip in the cyber world. Looking forward to better days for all of us. - Patty

RE: How are you coping with caregiving? Open ongoing thoughts.

by Wastingtime on Wed Mar 14, 2018 05:56 AM

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On Mar 01, 2018 6:10 PM Mamaof4 wrote:

On Feb 21, 2017 10:34 AM CaregiverPete wrote:

I'm Pete. 
Caregiver to my wife. 
This topic I started is all about caregivers. These are posts about our daily dose of encouraging hope and the unpromising challenges we go through to care for family members and friends. 

Caregivers need support during all stages of cancer. Support for caregivers is sometimes needed to continue even after cancer is gone in one form or another. Let's support each other during these times that change our minds and our lives forever.

Together lets try to heal that small part of us that won't return. We just need to find that person inside us that we're comfortable with, that comes close to who we once were before our lives were turned upside down. 
Caregivers please say or shout what you need to here. This is your place. Tell a pleasant uplifting story or vent your painful frustrations or sorrows.
Be well for today.
Peace to all of you for tomorrow.
 

My mom was diagnosed with Stage 1 pancreatic cancer last May.  She received a stent in her bile duct, but 22 days after placement, she developed sepsis and almost died.  Found out that she had abnormal anatomy and has a second bile duct!  Who would have thought?!  After SEVERAL stent procedures, she began chemo/radiation last July.  In August, that was complete and she underwent a Whipple Procedure on October 5th.  Since then, it has been a roller coaster!  She developed pneumonia in Decmember and now is suffering from SEVERE malnutrition.  She is on TPN, but wont eat or drink and her lower extremities are full of fluid due to her protein and potassium levels being so low.  I am caring for her 24/7 as well has working 50+ hours a week and taking care of my 4 kids (2 are 3 year old twins) and I am EXHAUSTED!!  They are now discussing putting her in the hospital to help with her fluid in her body and then a rehab facility.  I feel so many emotions all the time and my question is, how do you cope?  

Hi mamaof4, I am so sorry about your mom. Believe me, Pete the guy who started this thread would never just skip over you . You are where you need to be so that others can support you through this horrible time. You must be young , your children are still so young in age. I have been a caregiver to my husband for 10 years now, I will tell you being a caregiver is very hard. Welcome and please try to take care of you in some small way. Even a soak in a tub in solitude would be great . Your question how do you cope? Is simple,,,,, one foot in front of the other, one day at a time, ,,,,,I am reaching out for the usual posters on this thread to please acknowledge mamaof4 ,,,,, sorry it took me so long to reply, but I don't come on here much anymore !!!!God bless you my friend, Carolyn

RE: How are you coping with caregiving? Open ongoing thoughts.

by Ray725 on Wed Mar 14, 2018 10:38 AM

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Hi Mamaof4, so sorry about the poistion that you find yourself in, and you have had no support from us, but something must have gone awry with system because the first I saw of your message was today.  I did see the response from Blindguide but it made no sense to me, now seeing your message I understand. 

Working and looking after 4 children is difficult enough but having to deal with your mothes condition as well must be so so difficult. I can really understand the turmoil with your mother not eating or drinking. For the couple of weeks before I lost Helen she would not eat or drink and I was anxious thinking "how can you fight this if you can't keep your strength up".  The hospice nurse (we had hospice at home) told me to forget eating the body can go a long while without food but try to concentrate on fluids and fortunately that did work.  When I no longer tried to get Helen to eat little bits she did respond and started to take some fluids.

As to how do cope???  Your mother is going through things that are really outside your control, you can tend to her but it sounds like she really does need medical intervention.  Hospital and Rehab will help both your mother and yourself and you should push for that. I "looked after" Helen myself for most of the time with occasional help from Helen's sister but when things got really difficult I did reluctantly call for help and boy was that a godsend. It not only gave me time to breath but it meant that other people knew how to manage the situation and I was able to lean on them.

So how to cope - please please ask for help and support wherever you can get it - you and your children need it, the children must be seeing their Nan and you not well and it must be distressing for them.

Best wishes and carer love to you.  Ray

RE: How are you coping with caregiving? Open ongoing thoughts.

by Mamaof4 on Wed Mar 14, 2018 05:46 PM

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Thank you Ray for your kind words!  My mother ended up going into the hospital because her potassium got really low.  They drained 5 L of fluid from her and she returned home 2 days later. She seems to be "trying" but still not eating.  Her potassium is low again and her TPN formula is changed again.  Fingers crossed!

RE: How are you coping with caregiving? Open ongoing thoughts.

by tippymicky504 on Wed Mar 14, 2018 06:08 PM

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Hello mamaof4, Somehow I haven't been getting all the posts lately, especially yours and a few others. Glad I saw this today to let you know we all are in this together. We've all been on an up and down rollercoaster in our own ways. It's not easy. I hope you find help with you mom to get her feeling better. Sometimes we feel so helpless, and when we have to deal with the care of a loved one and a family. My prayers are with you. Hugs, Marge

RE: How are you coping with caregiving? Open ongoing thoughts.

by tippymicky504 on Wed Mar 14, 2018 06:14 PM

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I'm with you Ray. I'm so done with winter and the way it brings you down. Spring us around the corner...new beginnings? Not sure if the axiety I'm having is part of grief or just dealing with everything in the aftermath...and realizing my own mortality. Just hope it passes. We've had snow, but not nearly as much as you. Few flakes today, but nothing on the ground. Grateful I can still get out without worrying about the road conditions. Hope better days are ahead for you, and you can look this setback in the rear view mirror. Hugs, Marge

RE: How are you coping with caregiving? Open ongoing thoughts.

by tippymicky504 on Wed Mar 14, 2018 06:18 PM

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Patty, Funny...ironic...I had to give a loveseat my hubby and I shared to charity, couldn't sit in it alone. I think I need to move. This house isn't working for me anymore. We'll see. Hugs, Marge

RE: How are you coping with caregiving? Open ongoing thoughts.

by LisaLeeM on Wed Mar 14, 2018 06:36 PM

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Omg mama now I feel guilty about my lack of coping skills. You have so much on your plate! My guy and I have been through so much drama and his biggest issue is malnutrition as well. He fell. He was in the hospital then moved to a rehab facility (nursing home) for PT. If this is still an option for you DO IT! I know it sounds selfish but it will give you a break to catch up on your own life. I noticed the date and think my advice might not have been timely enough. I am not good at coping these days. No. Maybe I am. I freaked out after 24x7 care. Now I do what I can and he has to wait. I screamed and yelled to eat. To drink water. All that happened was me getting overwhelmed. Take a break. Accept whatever happens. Do your best. I finally realized - I can’t fight for them. They have to want to. She doesn’t want to eat or drink? You can’t make her I know it will result in other issues but you can’t live your life hovering over her.

RE: How are you coping with caregiving? Open ongoing thoughts.

by Mamaof4 on Wed Mar 14, 2018 09:08 PM

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Thank you!

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