I wasn't even sure what category to put this under. Since my mom did so well after having her meningioma removed, I have so much trouble accepting that she won't get better again. The radiation she completed this past May caused damage, which basically brought back the tumor symptoms which are like dementia. She is such a strong person (until this happened) and has had a lot of crazy health problems over the years that she always pulled through. She got septic a few years ago after a partial colectomy for diverticulitis and pulled right through! It is so hard to believe this is it and she won't improve. Her radiation oncologist recommended seeing a neuro for neurocognitive decline, which we have an appointment for Wednesday. I keep hoping they will tell us there is something they can do, although from my own research this doesn't seem likely. I'm so afraid I've placed her in the NH and she will get better and then she will be stuck there because all her money will be gone. She will have to apply for Medicaid once that happens. I keep hoping she'll have a miraculous improvement before she runs out of money and get to go to assisted living or independent living instead like we had planned. I mean, she JUST had her kitchen remodeled before the radiation. She was doing FINE, and now she has to sell her house, and we already sold her car. How do I get myself to accept the reality of our situation? I know this is a kind of grief I'm going through. I just don't know how to deal with it at times.
And I don't even know how to tell people what's wrong with her without going into this big long story instead of just having a name to give it like Alzheimer's, since this is "damage from a tumor that she had that came back that she got a craniotomy for that she got radiation for."
I am sorry I'm rambling. I think I just mostly need to vent. Maybe some of you have felt this way about the situation with your LO's too. I start therapy next week and I'm hoping it will help me learn to deal with some of this. It's just so hard to accept that she won't get better after I've seen her fight through so many things.
Secondly, all of us have questions as we go through uncertain times. Therapy is a huge help. I had a great therapist who helped me get through my caregiver days to my mom.
Clearly, your mom has serious health concerns and I truly hope that she is able to significantly improve.
Please don’t second guess yourself about your mom being in the right place. She wouldn’t be safe if she were alone at home if she is falling.
I read your profile and you say that your mom is 70. She is young and that makes this so much harder to accept.
I do not have the medical knowledge that you or your mother have as nurses but I do know how you feel about seeing your mother struggling with serious health issues at a young age.
I was especially close with my mother in law. She always seemed to be the ‘picture of good health’ to me until she discovered that she had a lump while on vacation. It was non Hodgkin’s lymphoma and she died at age 68.
I think it’s harder when dealing with serious health issues when a person is younger.
The truly sad part was that my mother in law actually went into remission for five years, so we thought her lymphoma was gone for good. When it returned, it came back with a vengeance!
It’s also hard when a person suffers for a long period of time. My mom lived to be 95. She suffered for years with Parkinson’s disease.
So, yeah our emotions go up, then back down. It’s a h*ll of a roller coaster ride.
I am sorry that things are unclear at this point in time. I hope that you will receive the answers that are needed soon.
I wish you peace as you continue on in your caregiving journey. Take care.
I'm sorry to hear about your MIL. My grandma died of the same thing when I was 12 and she was only 57. It must have been even harder that your MIL went into remission. My grandma was already a lady with serious health problems before the cancer, so by the time it happened there wasn't much chance for her. To be given 5 years then have it taken away must have been devastating.
I'm so glad I found this site. I have mostly done a lot of reading on it and the people are so kind and helpful. Although I am still on this roller coaster and struggling, just being here has helped.
Thank you again for your kind words.
Don’t worry about explaining in detail. Write down something that is easy for you to repeat like “She is currently requiring skilled nursing while we sort things out. Thank you for your concern.” Say this or what feels more correct a few times and hopefully it will be easier to deal with those wanting to check in.
As time goes by and you aren’t so overwhelmed you will have an opportunity to speak with the ones who you want to share more with.
I am so sorry that the two of you are having to deal with this. It sure sounds like a tough break for your mom. Do come here and vent anytime. We care and want to support you.
"What if I took that job and moved to D.C.?" It is normal to consider what ifs; we have very busy anxious minds.
You might look into grief groups and see if you are able to attend though your grief is for the present anticipatory.
A lot may happen as you go through this, and you cannot know how your feelings may or may not change. I found that I could only accept that we suffer so toward our end (when I was a nurse) by thinking that it did make our family finally long for our rest and peace. So your thinking may change.
When you enter the world of grief it is a process and it is as individual to you as your own thumb print. If you require help I would suggest the counseling of a Licensed Social Worker in private practice as they are best at the life transitions we all must make.
I am so sorry. It is what we say and it is so inadequate to the monumental losses we face in life. Be easy on yourself. As you mourn remember the great gifts, the wonderful moments, the good luck to love someone so very much. It's important to know those will never leave you.
I will definitely take each of your suggestions.
Need, I can't imagine the pain you have been through with not only your MIL, but your 5 year old girl. There is nothing to me that could ever be worse than that. I am so sorry.
I wish I were as eloquent as all of you, but know that I appreciate your thoughts and suggestions so much!
Best wishes to you. You’re going to get through this. Going through uncertain times of change are always the hardest.
You have already taken the first step by reaching out. Please update us and vent anytime.
It looks like to me from the paragraph above that Dementia will happen sometime after using radiation on the brain. So, why do people opt for it? Me, I would say remove the tumor but no radiation.
My grandson was operated on over 2 yrs ago for epilepsy that some will remember. He was 27. Yes, he is doing really well but still weaning off meds. But he was told, that later in life he may suffer from Dementia because the brain was operated on.
We didn't do the radiation at the time of surgery. This was 6 months later wheh they saw residual tumor on a follow up mri.
None of us knows what tomorrow holds, we have to focus on today and leave tomorrow for tomorrow.
Ask the doctor what the prognosis is for the situation. Might as well know if you have to adjust your hopes.
Great big warm hug!
I wouldn't explain to other people. That keeps you reliving the bad history every time you relate it. Try, "Mom's had several health problems in the past few years, and we're presently navigating our way through it." That's enough.
As for feeling that way about my LOs too, yes, I did at first. However, common sense intervened as I eventually realized that hoping they'd live and be healthy was useless. They couldn't. They wore out. I welcomed their dying, finally, and that was the best mental attitude I could have had.
Good luck with a sad situation, and she's lucky to have you in her corner.