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.

FredW

Just a follow up.

I’m taking the advice that everybody gave me along with thoughts and discussions with various family to make changes in my future.

I also wanna add that after two days in the hospital after liver surgery, which went well by the way, I realize it’s a hell of a way to get a break from caregiving.

You have to get away from it for a while and get a break, to fully understand how stressful caregiving is.

harshedbuzz

https://alzconnected.org/discussion/comment/239869#Comment_239869

Thank you for taking the time to update us.

I'm glad the surgery part went well. My mom had a similar reaction when she had knee replacement. She'd had her left leg done 2 years before at a different hospital and was expecting a 2-night stay. There were tears when she was sent home next day.

HB

ronda b

So glad you did well. Now recupe.

FredW

https://alzconnected.org/discussion/comment/239885#Comment_239885

”now recoup” … day 3 in the hospital and I find it very difficult to focus on my needs.

I’m so use of taking care of her that I can’t let it go in the hospital. I’m constantly checking my security cameras and talking to her daughter to help her through the instant caregiver role she found herself in.

I tried to prepare her that this is a very hard job, but nobody, and I mean nobody, can understand that until they walk in those shoes.

I know I’m preaching to the choir here, but the people on this discussion group are some of the greatest unrecognizable heroes on the planet.

shark_guy

https://alzconnected.org/discussion/comment/239405#Comment_239405

I learned two very important takeaways from this forum a couple of years ago, one of them is:

Taking care of your wife is very important, their life is very important, but, YOUR life is equally valuable and it is very important that you take care of yourself so that you can take care of her.

This certainly seems like a time when you need to focus on your care first… All the best from Central Texas.

MN Chickadee

It is probably good for her daughter to be there 24/7 for a while so she sees the true level of care her mother needs and will be on board when you need to move her to memory care. I would go so far as to have her children tour other MC facilities in your town, so you have options if you hit a crisis point. It doesn't sound like you have moved to the CCR and you may need to place her sooner than you think, unless the daughter intends to be the primary caregiver indefinitely. I'm glad your surgery went well.

housefinch

Sending you strength and comfort. You are so right, that others just can’t understand unless they’ve been there, and yes, it’s really hard to turn the caregiving off.

FredW

Update:

By the time I got home Last Sunday (actually it was April 6th - this post Sat in draft form for a few weeks), 6 days separated, my DW was a mess, her daughter was a mess. I was a mess. When I hugged my DW in the driveway, she looked me in the eyes, and with tears in her eyes, we reconnected with our love for each other. I had not seen that in her eyes for over a year. I lost it.

From that moment, my DW has expressed how much she loves me and we connected with love with eye contact. She smiles, she gives me no control battles for her independence and 24 hours later after a visit to the CCRC I decided, while in the hospital, that we are moving to ASAP, she is excited about leaving the home we built, and is part of my care A-team to make that happen. For the first time in two years she has a purpose and is a valuable person again. I was stunned. My therapist is stunned.

Her daughter left 24 hours after I got home to continue her life.

I made a decision about her daughter based on what I pieced together from 6 days of my security camera clips,, texts and phone calls. I think I do not want her daughter to ever be her primary caregiver again.

One small story I’ll share will tell you why I am decided this.

Thirty minutes before I was to get home ( I had faced timed them both from the taxis to let them know I was coming home) . Her daughter lost my DW. I examined the video clips for those 30 minutes. My DW was extremely distressed. She wandered from window to window that faced our driveway. From body language I guess she was very anxious. I knew she missed me. She told me this every time I talked to her in those 6 days. Her daughter knew that. While my DW wander around the house, she got increasingly anxious. Her daughter was busy in the kitchen preparing a meal that was my favorite for that nights dinner. She was not keeping an eyes on my DW. Her priority was on what she knows best - cooking.

Our house has a porch that wraps 3/4 around the house. The front faces the driveway, a parking area and a detached 3-car garage with a storage loft. My doorbell picked my DW exit the house and saw her wander back and forth between two rockers and two other chairs, then she walks toward the parking area, gets distracted, bends over to picks up some sticks, forgets why she is outside, heads toward towards the garage, bends over to touch some springs flowers. Forgets why she is there and walks the 100 feet to the garage opens the door and disappears. The next video clip is five minutes later and shows her daughter enter the kitchen. I see five minutes of video clips of her being busy before she realizes she hasn’t seen my DW for 10 minutes.

There are a dozed of video clips of her searching the house for her. The only outdoor camera is the doorbell one and it captured her three times expanding her search. Each clip I saw her body language shows increase panic. The next clip is the doorbell capturing her heading toward the garage. The next clip the doorbell picks up is her storming back to the front door. Her body language says she is pissed. Behind her 30 feet us my DW walking to the house. She has tears in her eyes and her face shows sadness and despair.

Ten minutes later my taxi pulls into the driveways and both my DW and her daughter are sitting in the two rockers waiting for me.

I didn’t know this happened until later that night when my DW was asleep and her daughter and I debriefed. Her daughter needed to vent and blow off stress that had been building up since a few days ago when she called me in my hospital bed to vent. She admitted she lost her mother 30 minutes before I got home and found her 10 minutes before I exited the cab. She admitted she panicked, lost it, and screamed at her mom.

I laughed hearing the story and comforted her with, “I can now understand why you were so upset when I got home. You must have been worried I was to get home and you were going to have to tell me you didn’t know where your mom was. I tried to tell you this job is stressful and you needed to put priority on it, many times, over your own needs. I’ll look at the videos later when I feel better to see if I can determine what happened.

I didn’t get to view the video clips for a few days.

I wanted to share this with you and close with this.

In the past 10 days, I have often remembered parts of a post on this forum titled: “The Cavalry is Not Coming “.

Now, I’m deciding a new plan B. It does not include her daughter. I’m deciding to move us into an independent living apartment that is attached to a facility that offers care assistance, assisted living, and memory care. My DW and I will be together as long as I can handle it, and I will decide when she moves to memory care, or my cancer or death will cause that.

The Calvary will not arrive to help, nor will any family member.

April 25 update: Chemo is postponed for a while I check out possible lung surgery. Meanwhile, I moved ahead with making Poland on moving into a facility with the care I will need in the future. DW is somewhat resistant, but I promised I will not sell our house we built so we can visit the country home while living in the city apartment.

We will move in June 30.

I have options available, my daughter, to help me if I need it while I’m doing Chemo before we move.

It’s a tough decision making it alone and sad my DW is not able to participate. But the Cavalry does not get to make these decisions for me, and they are not here.

Or to quote Billy Joel: “It’s my life, leave me alone”

Jgirl57

So glad for the update ! Your new decision to move sounds like a wise one that will support you and your DW. Best wishes to you both ((( Hugs)))