The thought of ever losing Mum is killing me

Hi, @achatterjee I'm Scott and I'm glad you are here on Connect. I was my wife's caregiver during her 14+ year war with brain cancer and I can really relate to your concerns and feelings.

While I'm no medical professional, I can relate some of what I went through as a caregiver. First -- yep, there will be times when you are a mess! I sure was and still struggle with many 'hangover' issues.

This may sound silly but I did two things that helped me when I was feeling more overwhelmed than usual. First I gave myself permission to cry. Yes, I did it out of earshot of my wife, but I sure cried often and it did help me. Second, I kept an old pillow on our sofa, and when nothing else helped I'd spend time punching the heck out of it to relieve some of my frustrations over not being able to control so many aspects of my wife's illness.

One of the early discussions my wife had with me was that she was committed to picking treatments, medicines, doing things, or deciding not to do things, was going to be based on quality of life, not quantity. This became our mantra during her illness and it guided her decisions. For instance -- one example was when a second surgery was suggested. She analyzed the potential benefits and looked at all the potential side effects and possible negative outcomes. She decided it was not worth it and did not do the second surgery. It was not a popular decision with many of her family members but she stayed true to her quality not quantity decision and was at peace with her decision. This also helped me in discussions with my wife's physicians regarding not letting her be in any unnecessary pain. She wasn't always pain-free but we managed it better with her decision guiding all of us.

I hope this helps a little. Please feel free to ask any more questions and I'm sure others will chime in.

Strength, Courage, & Peace

Hello @achatterjee
I can also relate to the journey you're on. It can be physically, emotionally, and mentally draining. My wife's cancer was in the form of a brain tumor 2013 f/w surgery, rehab, and radiation. The cancer came back in 2017 in the form of multiple myeloma. We were then off to City of Hope for chemo and stem cell. 2 months. And so far so good until she recently broke her right arm mainly due to her compromised bone density.

I also struggle with acute anxiety disorder flare ups. What was helpful for me and my daughter was family support groups the hospital provided. The empathy that we all shared became so important and therapeutic. They were helpful in getting me to a place of reasonable acceptance. I had several meltdowns when my wife was post op in the ICU from the tumor. There were some extreme interventions because she had unexpected hemorrhaging. I also worked in the same ICU. It was incredibly stressful. So strange being on the other side watching my coworkers care for her.

I do see a therapist once a month. For me it's very helpful to have someone I can be totally transparent with. I know what it feels like to fear losing your loved one. We almost lost my wife. Remember to take care of yourself. Yesterday my therapist reminded me that it's ok to cry and not compartmentalize which I tend to do.

Praying that your mum gets better very soon.
Ernie

Hi Scott, thank you for your reply! The fear of losing your loved one, and the pain to see them go through so much tears me apart, but I am clinging onto any hope I can find.
I will take your valuable advice and cry when I feel like it. I don't generally give myself the permission to cry because I am afraid my mother might see/hear me, and she might breakdown too. I have also thought of journaling mine and my mother's journey, so that I live each day as it comes. Like your wife, my mother too is all about quality of life. She doesn't like suffering, and she is of the opinion that it's better to die than have a compromised life style. It kills me, but I support and respect her decisions. We are going ahead with the treatment that has potential side effects, but I am doing everything I can to handle myself, my mum, and my family. It's a huge responsibility.

Thank you for replying, your empathy makes me feel so much better!

Hi Ernie, thank you so much for your message! It definitely helps to know that I am not alone. My mum had post-op complications too, and for 25 days, she lost her voice. Those 25 days were the most stressful days of my life. Now one year later, a new challenge meets us. I hope to survive this wave too!
I wish you and your family good health, love and blessings!

I understand your feelings and experience them myself while caring for my wife. Every test that results in a less than positive result makes you think of the worst possible outcome (for instance a higher than normal range platelet count from a blood test). We all have choices. You can chose the pessimistic outlook or the positive outlook. My wife and I decided to prepare for the worst but hope and pray for the best - or a positive outlook. That's what we choose to get us through the rollercoaster of emotions that we all go through in life.

I Anannya, my name is Robin and I too understand the pain you are going through. You see my mom has Pulmonary Fibrosis and Pulmonary Hypertension. You get fibers in your lungs which turns your lungs hard and it makes it very difficult for the oxygen to move through your lungs.
My mom is 78 and has been suffering for 10 years and she is coming to the end of her disease. I have been where you are and I have lost it many, many times. I have lost 23 lbs in the last three months and it is very hard for me to watch the woman that gave me birth whither away to nothing. My mom has started having severe panic attacks which she never had before. My mom gets upset that my sisters refuse to come/call/visit her and I try to comfort her by letting her know I’m there and my husband and the ladies that my mom pays to help are there but she gets so upset.
That is a lot of added stress for my mom and as a caregiver too. I know what it is like to climb into bed at night and be so exhausted you just can’t sleep you just cry because your heart is so full.
All I can do is pray and ask God for peace to know I’m doing all I can that I am disabled and on social security and can’t work.
I love my mom and until she takes her last breathe I will be here for her.
My mom calls me around 15 times a day and she is the last person I speak with on the phone every night when she takes her medication and gets into bed and when her aid leaves and the house is locked she calls me back to let me know the house is secure and her oxygen level and we talk a few minutes we blow kisses to each other, say I love you and hang up. That has been our routine for 10 years. That is going to be the one thing I miss the most of all our nightly 10:00 goodnight.
I wish you all the best I will pray for you and your mom
Robin