This is my first post. I need somewhere to vent frustration.
My spouse's health deteriorated slowly over the course of the last year. We're still not sure of the cause. There have been a few suspects - COPD, Gardner's Syndrome, etc. All negative so far. Underlying disorder unknown. The symptoms are recurrent nasal polyposis despite surgery and aggressive prevention measures, chronic severe asthma that doesn't respond to the usual treatments, and nightly sleep disruption from nasal congestion. He can't breathe, he can't sleep. He's been to 6 specialists and had 3 ER visits in the past year. Nothing helps.
I am only 30 years old. We have a 1 year old baby. My entire life has been reduced to caring for my spouse and child. There are entire weeks when I don't leave the house except for trips to the grocery store. This is not the first time I have been a caregiver - I spent my teenage years taking care of my brother during his 3-year battle against rhabdomyosarcoma. He did not survive. This experience with my husband constantly reminds me of my brother's illness, and compounds my feelings of depression.
I am also a PhD student in a fully funded program with a good stipend. My focus is in cancer research - my main goal for the past 15 years has been to do everything I can to advance diagnostic accuracy and improve treatment selection. I worked harder to get into my program than I have even worked for anything - it is a source of great pride and accomplishment... and I am going to lose it all because of my spouse's illness. I know it's not his fault, but I'm so angry. Not at him (well, sort of at him, but I know that's not fair), just in general.
Any advice would be appreciated. In particular, I'm hoping to find resources for young caregivers. I don't know how to tolerating giving up my dream, and a once in a lifetime opportunity to build a career helping the world. I don't know what my life will look like after this. I don't know how to keep going after losing my program.
Hi Mathedpotatoes. I'm so sorry to hear that you are going through this at age 30. I'm 57 and I am grieving for the life I am missing but it has to be much harder when you are going through it so young and with a baby. I'm so sorry for what you went through with your brother and that he lost his battle.
You should be very proud of your accomplishments and I hope that you are able to continue in your PhD program. The only advice I can offer is to try to not let this destroy your life- it's not too late. I have been reading about disengaging with love and I think it can help people in our situation by learning to support the sick spouse without giving up your needs and well-being. The longer this goes on the worse it gets unless we learn to set healthy limits. It's very easy for a sick person to get in a cycle of relying on someone else so much that they forget that they are accountable for their own behavior. It's been almost 5 years since my husband's injury followed by multiple complications from that and then a diagnosis of prostate cancer last year. I am just now trying to learn how to get my control back and help myself, and waiting this long was a big mistake. Start now so you don't lose yourself.
Take care,
chrishozz