Am I being unreasonable?

FredW

I’m 81, my DW is 82. I have been her primary caregiver since she was diagnosed three years ago. We live in rural Western PA. Between our prior marriages we have 8 kids. They all live far away, the closest is her daughter who lives fours away. She is in stage 5.

I have had to take over all the finances, medications, meal planning, preparation, clean up, and running the household. I have a private caregiver helper come in 4 days a week to help with light housework and watch her while I get out for two hours of pickleball three times a week. My DW can bath and toilet herself, but has loss her ability to contain herself from passing gas and the ability to focus on any task.

We have planned on staying in our home for as long as we can. When care demands get too much we have investigated moving to a care retirement community where various level of care would be available , but are not ready to do that.

However, my health has taken a turn south. I’ve been diagnosed with two kinds of cancer. One is bio-duct cancer in my liver, the other is lung cancer. Treatment for the liver cancer will start with surgery that will require me to be in the hospital for 3-4 days. After that I will start chemo and immunotherapy for my lung cancer.

My plan was to have her daughter (who is her plan B caregiver) who lives four hours away come and stay with her mother until I get home, then I will resume my care duties with the help of our part time caregiver help.

Am I being naive or stupid thinking I can resume my care duties after surgery and during chemo treatments?

I read this forum frequently and hurt for everyone here who struggles with caring for their LO.

I feel my issues are trivial compared to many who post here. I feel very fortunate we have the financial means to have choices that others do not.

I’m worried her daughter thinks caring for her mom amounts to fixing a few meals and will be surprised how demanding a primary caregiver’s job is. I tried to warn her, but until you walk in the shoes of a caregiver, you have no idea what it’s like.

Has anyone done caregiver while doing Chemo?

Sandi Roe

Hi Fred, my LO has stage 4 Alzheimer’s. My daughter who is 60 had been carrying for her husband with terminal brain cancer when she was diagnosed with stage 2 triple positive breast cancer. She had surgery and chemotherapy, she was his sole caregiver and absolutely was not able to care for him and herself during chemo. We believe her cancer was stress related and we all know the stress of caring for someone with Alzheimer’s disease. So for me, and since you can afford it, please put yourself first for a short time and find full time caregiver for your DW. It will be easier on both of you, just my opinion and what choice I would make for myself, good luck, Sandi

Quilting brings calm

I think you are being too optimistic. You aren’t going to be up to taking care of her while you are recovering from surgery or doing chemo. A very good friend of mine had renal cancer- surgery and then Keytruda every 3 weeks for the last two years. There is no way she could take care of anyone as she can barely take care of herself. Please use this to move to that continuing care community. Your wife will be cared for AND so will you. Her daughter cannot care for the two of you from four hours away on a regular basis.

midge333

@FredW : I am sorry you are going thru all of this. Yes, you are being naive to think you can continue caretaking while getting treatment for two cancers. I think you should move into an assisted living facility that has a memory care option for your wife when she needs it and a skilled nursing option for you when you need it. Good thoughts for you and your wife.

harshedbuzz

I am so sorry you are facing this difficult situation.

@SDianeL faced a similar situation. I hope she sees the bat signal and weighs in.

It's hard to say whether the daughter will rise to the occasion. Does she visit regularly? Has she had 100% responsibility for mom's care during visits before? Is this something she's volunteered to do for you both or are you assuming she'll want to come? FWIW, Dad's level of incapacity blew me out of my shoes, but I was able to learn on-the-fly and became a competent caregiver quickly when my own mom became very ill and was hospitalized.

There's chemo and there's chemo. It would be best to have an honest discussion with the oncologists directing your care about your prognosis and how you might feel recovering from surgery and undergoing chemo.

The safest way forward might be to arrange to move into the CCRC immediately assuming they accept residents who already have dementia; some of the nicer ones near me don't. This would provide a safety net for you both. Another option would be to hire a live-in caregiver for the duration.

HB

Carl46

I agree with Midge. I'm "only" 78 but I couldn't do what you're contemplating. I didn't have chemo, just radiation and surgery, but I've seen my father and others have chemo.

If you have surgery, the best way to have a good outcome is to find the best doctor you can and do exactly what they tell you. I'm pretty sure walking around working full time as a caregiver isn't what your doctor would recommend.

White Crane

Fred, I urge you to take care of yourself. Others have given good advice. You will not feel up to taking care of your DW even though you want to.

ronda b

You really need to take the advice that has been given to you. You are going to be weak from the surgery to begin with and then chemo

Please listen

FredW

Thank you for the input. Guess I better be adjusting my plans.

SDianeL

FredW: so sorry about your cancer diagnosis. I know exactly how you feel. I’ve been there. Im 76 years old. My DH was in Stage 5 going into Srage 6 in late 2023. I had planned on caring for him as long as physically possible. Unfortunately I was diagnosed with a rare aggressive form of breast cancer. My treatment was going to be months of 2 kinds of chemo then radical double mastectomies. My oncologist said I would probably be very tired and my immune system compromised due to the chemo. I realized I couldn’t get better and care for him too. I had to make the heart wrenching decision to place him in memory care. It was the right decision. I got so weak from chemo that I could barely walk and care for myself. I had to stop chemo early I was so weak. I moved in with my daughter. I don’t know what I would have done without her. I had surgery in April last year. It took several months to be able to reach, lift, do laundry, etc. My husband progressed rapidly last year and passed away in August. He got excellent care before he passed. Unless her daughter is able and willing to care for your DW full time and permanently, I don’t think temporarily will be enough. If you move into a care facility they may not allow you to be together as memory care patients must be in a locked facility for safety. You could visit her though. I know it’s a very difficult decision. Please don’t wait. Please keep us posted. Praying for both of you. 💜

Traveler18

This is so tough - I keep reading about how caregivers often end up with critical health issues that may be tied right to the stress of caregiving. My DH had cancer w/chemo & radiation 3 years ago (they treated that before they started to investigate my concerns about his memory issues) and I had breast cancer last year (radiation only). He was stage 4-5 last year when I was dealing with treatment and surgery. My teenage son and I managed it. DH got blood clots from one of his chemo drugs and ended up in the hospital a couple of times. If that were to happen to you, how would your DW be cared for? And, who is caring for you during all of this? I would suggest looking at in-home help for both of you or taking that step to say it may be time to be somewhere that will take care of both of you. I wish you the best for the journey ahead of you, but it will be a journey and no one knows the turns it will take. Hugs to both of you!

H1235

Just a couple of thoughts. Do you have legal matters in order if something were to happen to you before your wife? Would her daughter be able to step in as DPOA? Keep in mind facilities can have a waiting list to get in.

housefinch

I would start the process now to move to a CCRC with AL & MC on campus. You will probably need your own assisted living help to get through cancer treatment. As an example, a dear friend of mine, age 48, a marathon runner and single parent, was diagnosed with breast cancer and needed intensive chemotherapy, radiation, followed by mastectomy, then additional treatment. Her sister moved across the country for 3 months to live with her and care for her and her son. There was zero chance she could have functioned without that help. I would recommend a frank discussion with your oncologist about treatment options, likely side effects, etc. And don’t hesitate to request a palliative care consult for yourself as you embark on this path. Palliative care physicians can work alongside your oncologist as you undergo treatment to help you feel as good as possible. Palliative care is not hospice and doesn’t mean you are being less aggressive treating cancer. Sending you and your beloved wife strength and peace.