Why do I feel so guilty? Am I making the right choice?
Hi. I am new here.
I have been a caregiver for my mom since July 2020. She was diagnosed with a very aggressive and hard-to-treat stage 3 breast cancer. I was there for everything... every Dr appt, every chemo or radiation treatment.
Feb 2021 she had a double mastectomy, and was deemed disease free. She started radiation to make sure it was completely gone.
June, just about to finish the radiation, she started having focal seizures in her left arm. They immediately did a brain MRI, and they found something there.
Although they weren't sure, they said she likely had metastasis of the cancer to her brain. We then started chemo again.
Fast forward to Jan of this year, she was done with chemo, and onto special radiation "surgery" to target the lesion.
After her radiation treatments (which she had only 6 of because they are very strong and targeted), we had to wait a bit to see if the lesion would shrink.
It didn't. We were then referred to neurosurgery.
Mom had the "tumor" removed March of this year. All has initially gone well. She came home 2 1/2 weeks later.
Fast forward, end of March, she suddenly got a nasty infection in the surgery site, which they had to immediately go back in for.
All hell broke loose after.
She has been mostly in- but in and out of the hospital ever since then. She has been home a total of about 4 weeks since March 31st.
I quit my job, with the intention of caring for her full time at this point because she needed more help than we were led to believe. This includes 24hr monitoring.
Things have been more than hard. Not only the care itself, but also the treatment Ive received from her.
Monday night, I had to call 911 because she had a fall, and a grand Mal seizure (which she had never had before)
We all decided that night (including her) that it isn't yet safe for her to be home. She needs more help than we can provide. And insurance won't cover what we needed at home.
Now, the discussion has started about care homes. In particular, medicaid is referring to adult foster care.
I know I'm doing the right thing, and it's not hospice, and she is expected to improve, but I feel guilty about the thought of putting her in a care facility. I feel like (and I don't know why I do this to myself) like it is 100% my responsibility to take care of her, and that I'm basically giving up on her by doing this.
I know in my heart that it's what's best for her. I have already lost myself and gone over my head trying to do it all, and I know it's too much. And I could not live with myself if she was under my care and I lost her.
She just turned 55, and I am 27. She is really young to be going through this, and I know I am really young to have this kind of stuff on my shoulders.
I just don't know how to get past the guilt, and not to mention the trauma this whole experience has caused us. I lie in bed each night with worry, guilt, and fear, and I don't know how to get it to stop. I am working on seeking therapy, but I haven't yet found a clinic that accepts my insurance and has openings.
I just felt like I needed to get this off my chest. I needed to tell SOMEONE. Someone that isn't the same 5 people I always talk to.
Im sorry for the long post, but thank you for reading, and I look forward to hearing what thoughts any of you may have.
I have been living away from my home country for about 6 years now. My parents and brother's family live in my home country. After covid started I couldn't even visit them for vacation still, so I haven't seen them in real for about 2 and half years. I can understand about your guilt that for having to send mom to a care facility. I always feel guilty too not for been there, or at least closer to my over 60 years older parents. I send them money, call them a few times a week etc but that's not as same as been with them in person.
I think you should be really proud of yourself for being such a good caregiver so far. I can't even imagine how much of a responsibility it is as I have never done anything like that myself (hell, I already killed 3 house plants in the new house). You are really nice person to do all that.
I hope your mom will get better after being well cared taken in care facility.
There is online therapy in this site, probably you can try that. Take care. Everything will be alright.
@azureCat8990 Hey azure, I am in the same situation, I live far from my parents as well, many miles away, it was partly circumstantial and partly my choice to continue living where I am now and not go back with them. I too had not seen them in 3 years. My mom mentioned something to me about visiting them, and this time it really sounded like they wanted to see me. So, I ultimately made the sacrifice of going there, also because I wanted to. I knew it would be hard. I am not even vaccinated. Everything went well and now I am ok but at end of vacation I ended up catching covid from someone in their home. Once back I had symptoms and I knew it was because of that. Anyway, I don't regret going there, but I can relate to you. Now that I am back, I feel the same way as you. They have a home health aid, but they too were in a nursing home or care center for a while. They have the money but they insist on living where they are. Both my older sister and I told them our thoughts about it over time to move to a smaller house. Well, they injured themselves many times living where they are, but in the end, we can't do much. I have to respect their choice, this is what they wanted, but also, I can't provide the support they need on my own. My older sister tried helping them, my mom is always complaining about her as well. She reached an age where she complains all the time more than ever. I can understand it can be hard for her. I do miss what could have been, I have beautiful memories, but realistically I think it's over. Unless I decided to move closer to them and give up my life for that to live near them. I would have to sacrifice my lifestyle and choices. Until a couple years ago, I still thought that would be a possibility, now I am not so sure. Anyway, I really could use someone to talk with, and I am sorry for rambling on. I guess I fell powerless. At the same time, I don't know if I should feel bad. Anyway, I wish everyone here the best
@reliableWest8997 I'm glad to hear you got to visit them and you're ok even though got some problems later (there's a friend I know vaccinated still got covid, hwever I think it's good to get vaccines, I got 3 doses). I know it's hard right when we are not fully equipped to take care of a family, and feel like we've abandoned them, but there's no other option. My mom keep pressuring me that I need to have kids too. Agh..sometimes it's crazy when parents point out other people who have all kids and stuff and order us to do the same. And yeah you're right, it's not the same even if we choose to move back to where we came from, no, we're gonna miss the hell out of things we had in our free life. I'll never be able to go back to my own country, it's even suffering from a huge economic crisis these days. All my childhood and young adult life I was dreaming of leaving the small village I was born. After I did whenever I had chances to go back it felt like time moves slowly there because global changes doesn't affect them much. It's sometimes good that we can forget the world out there and have a simple meal and rest and walk through fields for a few days. But that's all, I don't want to keep living that life forever. I guess it's all choices of different people. Thanks for replying me.
@azureCat8990 Thank you as well for getting back to me
@Novagurl1978 You have done a lot to be there for your Mom.
Hi there,
I'm new but I totally get how you're feeling, I'm 29 and I lost my dad in 2017, I was 23 at the time and he was 59 when he passed away.
I quit work to support him as mum needed to continue to work to support them financially. I did all his appointments, hospital treatments, meds and personal care etc. We never had to talk about specialist care due to him passing away.
However you're doing the right thing, they have specialists trained to care for your mum and to meet her needs safely whilst redeveloping her independence, you need to be able to have a break otherwise you're completely going to burn out. Just because you're considering a home doesn't mean your bad, or selfish or that you don't care. It's BECAUSE YOU CARE that you're considering it ❤️
If you need to talk privately, I'm happy to listen 💙
You're doing and amazing job!
DO NOT TELL YOURSELF OTHERWISE
Sending positivity and love ❤️
MamaB93
@novagurl1978 I'm glad you wrote this as we are in similar situations. Being a Caregiver and going through so many tough situations can take a toll on your body. I have been my mother's Caregiver for about 6yrs and I also watch my special needs brother. I am 29, my brother is 33, and my mom is 53. If I were in your position, I would have done the same thing. I mean, I always have the thought that my family could use more help in a facility than just me because I can only do so much for them and I believe we should always do what we feel is best for our family. That's what we do because we love them and there is no guilt in that.
Thank you for making a fearless loving life decision.
@Novagurl1978
hey Nova...im
so sorry to hear that Mom's ill...also glad medicaid suggested foster care
I celebrate the 5 people you talk to, and hope you find more!!
you are very healthy in seeking more people to talk to,
and you are very, very
very welcomed to do so, as well!
There is guilt and trauma, Administration work…decisions
do what you can each day, and then perhaps switch the day off, to rest
Our families are for lifelong, whether healthy, or not, rich or poor
You have put in so much effort..I hope you celebrate everything you’ve done for
Mom (and by proxy) done for yourself as well
we all have different path…someone aged-27 may be off getting married, having
children, traveling or just clocking that first $1 million
that’s them, Nova..we are “we”…no two lives must be identical and exactly the
same..you are celebrated, and your steps are, your days are, too
I agree with other posts here…youre doing an amazing job, you are fearless and loving,
too!
Hi. You are doing the best that you can considering the circumstances. If i were your mom, i'd be grateful to you and will indeed just let me stay at the hospice. You have your own life to deal with. I would tell you to take care of your health and just be prepared for whatever happens.