Taking care of Mom: Most rewarding and difficult thing I’ve ever done

Posted by pstut @pstut, Nov 9, 2021

Good morning,
I have been reading these posts for awhile now but have never posted myself. At the end of June, my 76 year old healthy, vibrant mom was diagnosed with stage 4 lung cancer. It started in her left lung and has metastasized to her right lung, lymph nodes in her chest, right hip, tailbone and brain. Her only symptom was some shortness of breath which was so gradual that we thought it was allergies. I have been taking care of her since the beginning of July, living with my dad and her. My husband and 2 children who are still home, (we have 6 kids) help and visit us daily. All of our lives have been turned upside down. In the beginning, she had 5 radiation treatments to her hip/tailbone and 10 whole brain radiations. She started chemo on her last day of brain radiation. She had at least 14 lesions on the brain and her last scan showed 3-5 are still there. She has now had 4 chemo treatments ( alimta, carboplatin and keytruda). She is so, so weak and tired, absolutely no appetite and cannot do anything herself. About 5 weeks ago she developed a blood clot in her right lung that had broken off from blood clots in her left leg. She could not be on blood thinners because one of the brain lesions had hemorrhaging around it. They inserted an IVC filter that will hopefully stop any other clots from traveling. My mom is my best friend and it is horrific seeing her go through this and watching her decline in front of my eyes. I have two older brothers and they help when they can, but Mom wants me and I want to be with her because I know what is going on best, if that makes sense?? Her oxygen drops significantly on exertion - not sure if it is the blood clot, cancer or both?? Since she was diagnosed, we had our first grandbaby( they live 8 hrs away and we have seen once- (she’s beautiful :)), our oldest daughter got married, our Second daughter moved away to college and I took a year leave of absence from my job as a teacher. So many changes…..I am so blessed to have been able to do this and take care of Mom, but sometimes it gets difficult. I am thankful to have found this caregiving page…taking care of my mom is the most rewarding but most difficult thing I’ve ever done… I don’t want to lose her….

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@pstut You sound like a wonderful, loving, caring person. No wonder your mom wants you around. You are doing so much, but do you ever get a chance to take care of yourself? With winter colds and flu coming and covid here, you must take care of yourself also. Is your dad able to help with meals and laundry? Do you have time to read or nap during the day? All important! I’ll ask @IndianaScott to chime in and offer his thoughts and support.
Have you and your dad had time to discuss your mom’s continued decline and what your options are? Hospice can help months before and are invaluable.
I know that this is a sad, stressful time, but you want to get information and plans in place before a crisis happens.
I cant begin to tell you how much admiration i have for you and what you are doing. Everyone at Mayo Clinic Connect is here to offer any support you need. Will you stay in touch with us?

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You are wonderful and your family is wonderful and special too. God bless you ,your mother and your family. I am doing this for my husband, the love of my life for 61 years, and my feelings are your feelings. Keep going and take care of yourself.

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@becsbuddy

@pstut You sound like a wonderful, loving, caring person. No wonder your mom wants you around. You are doing so much, but do you ever get a chance to take care of yourself? With winter colds and flu coming and covid here, you must take care of yourself also. Is your dad able to help with meals and laundry? Do you have time to read or nap during the day? All important! I’ll ask @IndianaScott to chime in and offer his thoughts and support.
Have you and your dad had time to discuss your mom’s continued decline and what your options are? Hospice can help months before and are invaluable.
I know that this is a sad, stressful time, but you want to get information and plans in place before a crisis happens.
I cant begin to tell you how much admiration i have for you and what you are doing. Everyone at Mayo Clinic Connect is here to offer any support you need. Will you stay in touch with us?

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Hello, thank you for the sweet reply. I really should exercise more and I’m sure that would give me more energy to feel better and would help to take better care of myself. I do like to read and Mom and I watch tv shows together and that is relaxing. I actually brought her to the ER yesterday as she was so, so weak and her O was dropping significantly and not recovering. I could tell something wasn’t right. They are treating her for pneumonia, but they are not convinced that is what it is. Her poor lungs are worse than what they were a month ago according to CT scans. One of the brain tumors has shrunk so that is a blessing. They admitted her last night and are giving her a strong regimen of antibiotics. The pulmonologist has increased her decadron from 1mg that she was on, per oncologist, to 4mg and will start her on small doses of morphine because that can help the shortness of breath… does anyone know much about morphine? She has not been given that yet. Palliative care came in as well and we went over paperwork and she explained some of that to us….that is never an easy conversation. Mom would not want to be on a ventilator if something were to happen. There is so much going on in her poor body:( We are trying to take one thing at a time. I’m thankful I brought her in. I was pretty nervous at home and very worried about her. I hate cancer. It is horrible…. All of the side effects and complications that come with it is unbelievable. Thank
you for listening. It is a nice place to get things out and bounce ideas off of one another. I wish you all well.

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@shoshanna

You are wonderful and your family is wonderful and special too. God bless you ,your mother and your family. I am doing this for my husband, the love of my life for 61 years, and my feelings are your feelings. Keep going and take care of yourself.

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Ahhh I am so sorry you are going through this with your husband. It is so difficult but so wonderful to be with him I bet. 61 years - Wow!! That is wonderful. Take care and God Bless you.

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@pstut

Hello, thank you for the sweet reply. I really should exercise more and I’m sure that would give me more energy to feel better and would help to take better care of myself. I do like to read and Mom and I watch tv shows together and that is relaxing. I actually brought her to the ER yesterday as she was so, so weak and her O was dropping significantly and not recovering. I could tell something wasn’t right. They are treating her for pneumonia, but they are not convinced that is what it is. Her poor lungs are worse than what they were a month ago according to CT scans. One of the brain tumors has shrunk so that is a blessing. They admitted her last night and are giving her a strong regimen of antibiotics. The pulmonologist has increased her decadron from 1mg that she was on, per oncologist, to 4mg and will start her on small doses of morphine because that can help the shortness of breath… does anyone know much about morphine? She has not been given that yet. Palliative care came in as well and we went over paperwork and she explained some of that to us….that is never an easy conversation. Mom would not want to be on a ventilator if something were to happen. There is so much going on in her poor body:( We are trying to take one thing at a time. I’m thankful I brought her in. I was pretty nervous at home and very worried about her. I hate cancer. It is horrible…. All of the side effects and complications that come with it is unbelievable. Thank
you for listening. It is a nice place to get things out and bounce ideas off of one another. I wish you all well.

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Ooh, I don't know which is more scary, the dropping O2, or all the additional meds. With decadron, make sure they closely monitor her blood sugar, it tends to rise even in non-diabetics. Also, morphine can tend to lessen the frightening feeling of not getting enough air by relaxing the person, but can have other side effects. My Mom tolerated sublingual drops well near the end, but they made both of her sisters hallucinate or get combative.

My sister and I never regretted one moment of the time we spent with our Mom in her last years, no matter how hard it was. We also had some help from our brothers and my girls. The time spent talking to her was so precious that it was easy to tolerate the hard times. At the end, as she let me know how tired she was, it was easier to let her slip away after a long decline. It was much harder with our Dad, who declined more quickly, but again we were blessed to be with him.

What you are doing, especially including your husband and kids, sends a wonderful message to your children, that caring for others is part of the cycle of life.

I will keep you in my thoughts as you go through these difficult days.
Sue

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Thank you Sue - and that’s good to know about the morphine. Did your mom have lung cancer? I’m curious when they gave her the drops. That’s so wonderful you could be with them…

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@pstut

Thank you Sue - and that’s good to know about the morphine. Did your mom have lung cancer? I’m curious when they gave her the drops. That’s so wonderful you could be with them…

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My Mom had COPD from industrial pollution, not smoking, and Congestive Heart Failure. When she was in palliative care, she was given sublingual drops while in the hospital. These followed her into hospice, and were only used if she felt short of breath, or her breathing was labored.
Sue

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Hello, @pstut I'm Scott, or IndianaScott, here on Mayo Connect I am sorry to read of your mom's health problems. I was my wife's caregiver during her war with brain cancer and agree with you when you say caregiving turns one's world upside down, sideways, and every other way, too. There just aren't enough hours in the day to accomplish everything in our lives and the needs for the life of our loved one. I think it is important to remember that there are no superheroes in caregiving. Wonder Woman and Superman are only found in the comics! They'd never be able to be caregivers! 🙂 I really struggled to triage the multiple needs of my life as a caregiver.

I'm happy to answer any questions you might have about caregiving and share my experiences and what I learned.

Strength, Courage, & Peace

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@pstut it’s been a while since I’ve heard from you. How is your mother? And how are you doing in your caretaker role? I hope you have found the time to go for a walk in the woods or just out to see the Christmas lights. Have you done something to take care ofYou this past month?

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Hi there- thank you for reaching out. My mom actually just got out of the hospital after a two day stay. She had 1 liter of fluid removed from her lung but then she developed a pneumothorax. Thankfully it resolved on its own and we did not have to have a chest tube. I have been trying to go on some walks to relax, but I need to be more consistent! Tomorrow is Monday so I am really going to work so I am really going to work on a new goal of walking daily! As far as my mom goes, it’s nice to be back home. She was in a lot of pain right after the procedure so that was pretty scary and stressful as we didn’t know what was going on right away. Thank you again for checking in.

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