I'm feeling lost and found this group. My folks moved in with us October 2023 upon finding out my Dad has stage 4 esophageal cancer. We have one of the top cancer treatment centers here in town, so it was a no-brainer. However, radiation is almost done and they said he's not strong enough for chemo. But this doesn't mean he'll NEVER be strong enough!
So they met with the lead cancer physician yesterday and palliative care team today. Apparently everyone is pushing my folks for hospice. Thing is, they live 4h away. Our boys have loved having my Dad here and I think it's good for him, too. He lights up EVERYtime they sneak in.
I'm just chock full of thoughts at 3am. My dad hasn't been able to rest between radiation treatments because his stroke 4y ago caused notaria. He's up and down all night long and catheters aren't recommended for cancer patients because of the high infection rate.
Since they've been here, my mom has left for 3 days. I was Dad's caregiver for that weekend and we had lots of fun. I gave him full independence when he wanted it; offered help when he needed it.
When I mentioned to my mom, "Do you know dad got ready 97% on his own every morning you were gone?" She seemed absolutely floored and chided, "If it was your spouse, wouldn't you help any way you could?" He happened to be standing right there and I said, "Actually, yes. But I would make sure that he had as much independence as he could to live a 'Normal' life for as long as he can." She replied, "Well, that's just not us." Hmm...
The longer they're here, the more I see how high-strung my mom is (always in a constant state of panic and frantic) and she is calling ALL the shots. They moved here for top notch treatment AND support from us but she rarely accepts any form of help and says "I don't want to burden you because you have a family." WHAT?! I'm the only child, this is kind of my gig, right?
She literally took care of both of her ailing parents when I was in high school and was barely ever home. I asked her about the sense of pride she had being able to care for them, and why I'm not being afforded that? When I pointed out that she was rarely home when she was caregiver, she just scoffed.
Listen, I love my parents, but am I selfish to think that my mom is enabling my dad? That her high-strung attitude is affecting his overall strengthening? Is it wrong to be upset that they keep telling us what's going to happen instead of including us in the pre-cursor discussions? What about hospice 4h away where Mom says I can "come visit.” She says it's wrong to keep dad away from his home and his friends (his remaining family live out of state and friends are willing to visit here.
If you made it this far, thanks ❤
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You are not entitled to be “ afforded” a “ sense of pride”. You are not entitled to care for them . They can seek care from other sources than you if they choose . It’s not automatically your “ gig”.
I know you are trying to make sure Dad has his best life possible. Maybe speak to Dad alone and remind him that he has a say in what happens going forward . Other than that it’s up to him to communicate with his wife . And that you are willing to help in any way that they want.
It's not "wrong" for mom to want to help her husband and feel like she's doing everything possible for him, bc she's deathly afraid of losing him. He probably enjoys the attention bc it's a sign of her love for him, and that's a comfort when he's scared.
Until you have experienced this situation yourself, and I hope you never have to, you simply do not understand "why" your poor mother is anxiety ridden and high strung. For you to point out the error of her ways about not being home when you were young is just adding to her angst riight now, I would think. Just explain to her you're scared and wanting to help out as much as possible, that's all. And be grateful she doesn't want to be a burden to you....that's a RARITY, especially for an only child.
This is not a competition about who gets to care better for this man you both love dearly, just that you get to spend time with him. Time that's limited by his illness.
I have stage 4 cancer myself. The fact is, the treatments will either work or they won't. Without chemo being an option, dad is not likely to survive. My husband has been caring for me since I was diagnosed in January and I've never seen him cry till now. When he loses me, he'll be lost. That he does "too much" for me is fine. It makes him feel useful during a time when he's otherwise helpless.
He also has unrealistic expectations of me surviving this cancer for the next 20 years, much like you do with dad. I know I'm terminal, I don't need to remind him all the time. I do, however, think it's wise for him to process reality NOW and stay out of denial, lest the truth crush him even more than it ought to.
Let your parents decide what the end of dad's life will look like. Accept it, too, and do your best to understand where they are coming from. It's very hard, I know. Wishing you Godspeed on this difficult journey.
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I am sure that it is driving her nuts that she is losing control. The doctors are in control, the cancer is in control, she is not in HER home so she is not in control of that.
If your dad wants her to back off and let him do things for himself he can say so. He is in the same situation though...he is not in control, the doctors are, the cancer is, his wife is and you are.
And I have to ask...has your mom always done things for him? If so then this is the way she is and you are not going to change her.
Maybe the fact that she was never home when you were in school also means that she was not home for her husband either and this might be her way of making up for the time that he was left to do things on his own.
Think about how hard this is for her. Her beloved husband has stage 4 cancer. They uprooted their presumably comfortable and happy lives to come live with you while he had treatment. I'm sure they are grateful. However, everything is different in your house - the family always around, you pushing for what you think they should do, endless rounds of doctors, treatments, advice swirling around from everywhere. Don't you think they might want to get back to a semblance of THEIR normal?
Caregiving of your dad for three days is but a drop in the bucket. I guarantee that if you were taking care of him by yourself for months you'd see a different version of dad and a different version of YOU. Forming opinions of his present condition on a basis of three days isn't fair. Ever heard of showtiming? That's where a patient can keep up a good front, often because others expect it of them. I don't doubt that your children bring him joy, but how much of that kind of joy is necessary? Maybe dad and mom want time together - alone. That's a joy too, especially when faced with losing a spouse.
They want his friends near. They want to see their own familiar belongings around them. They want hospice where they want it, and that's their choice. As they move toward the new goals forced upon him by his illness, please don't add to their problems. They don't want to have to worry about you as well as everything else. Support your mom. This is the biggest challenge of her life. Dad's too.
Help them get what they want, not what you think they should want.
Your mother is losing her spouse. She SHOULD be calling all the shots with him now.
You are their child. You are/should be providing loving comfort, and that is what you should be doing WITHIN THE LIMITS of their boundaries.
I am sorry for this loss coming to you. Please do your parents the honor of providing all the LOVE, all the COMFORT, all the support for their OWN decision-making, all make your goal to provide loving support to BOTH of them to the best extent you can.
And yes, in my humble opinion, with this loss coming to you all, anything else would be selfish. I am sorry, but you did ask.
MY heart goes out to you. Ask Hospice where you can find support within so that your OWN needs don't interfere where energy is needed to take care of your Dad's and Mom's needs in this last time for him. This is heartbreaking, shattering, but as you observe, your Dad is somewhere where he is getting the best of care and medical opinion. He has made his fight. You will be surprised that often it is a comfort for those who are dying to accept death, to be reassured they will be comforted through the dying process.
I hope you will update us. And again I am so sorry for this loss. I am 81. I assure you that my Dad is still with me in my life. Help your Dad remember all he has meant to you.
YOU are not a part of pre-discussions unless they wish to speak with you about this. If you are giving false hope, that is no comfort to them. You should rather now tell them that you will never want, never be "ready" to lose your Dad, but that you understand the stage of his illness, and you will support them completely WHATEVER THEIR WISHES ARE now.
It sometimes takes us a while to realize that we are in fact hurting the one we love instead of helping them. I myself had to learn that the hard way.
And why can't your dad have hospice services in your city where they're living now? Doesn't that make much more sense? It could even be in your home. Have you asked your dad what his wishes are, and is he man enough to stand up to your mom to share his wishes?
Why don't you send mom away for another long(as in really long)weekend so you can have a heart to heart conversation with your dad to see exactly what his wishes are, and allow him the freedom to do things himself?
I wish you all the very best, and praying for wisdom and discernment for all.
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