RMS, PD death by acronyms

[NanaCC]

I know what I need to do, I just need vent. before I go insane, stress is MS enemy, I’m living it I’m watching it happen. Yes I will call MS clinic I know what they will say, STRESS, no $hit!!!!! The slight vertigo that is lurking in my head, the feeling that I have a stray hair on my face I can’t locate and remove. I feel it I know it. I tried calling mental health providers around me, got on a list they will call to screen, no one taking patients. What the heck are they going to do???? Offer me meds. I’m on enough. …..  Last week I figured I would seek out support group for caregivers of Parkinson’s disease PD. Husband has PD since 2012, dx around age 50. I got dx with RMS in 2018. I am so dumb I researched PD when he got dx but never from perspective of caregiver. Once I joined caregiver group I realized that every freaking thing I cannot stand about him is not his fault, it’s PD. I keep reading more and more posts most I can relate to him. I am no longer angry with him, which has been helpful to both of us, go figure. The future scares me, I feel like I have lost the man I once had, he’s gone he’s not coming back I’m left with a frail sick angry sad confused 61 yo man. I fell last August, passes out/fainted woke up on the floor broke my ankle.  I passed out again last week, hurt my arm nasty bruise. Talked to my bff she told me if I tell dr about fainting I could lose my drivers license, is that true? How do I put me first? Negotiations with a PD patient is impossible, he can’t make a decision, if I hire someone to do handyman tasks I must have secret intentions. My house and life is f’d up. In less than 2 hours I am hosting a meeting for my job 10 people invited I’m not ready, thanks for listening I love this group, the PD caregivers group judged me before I realized PD is the cause not him, a disease which perpetuates bad behavior, MS doesn’t look so bad to me.

[AquaZumbaFan]

My heart goes out to you.. that is a tremendous load that you are carrying.. I agree with you about stress 💯 the really big stuff I have been experiencing lately has inflamed an already active subset of symptoms.. I have begged my family to “ get it together “ to ease up the stress! I pray you will get some assistance in caring for your husband and be able to take care of yourself.

[309Ygi]

sweet friend is it time to put him in a senior home ? Just pray about it , if it’s to happen door s will open . we can barely take care of our selves. The anger alone should get him in a home . Your safety his safety.

[carolek572 CommunityAmbassador]

Keep reaching out for more resources, NanaCC . I know that it is easier said than done. 🙏

[ahrogers]

I can't imagine having to be a caregiver on top of dealing with MS. Can you get a virtual appointment with a psych doctor or maybe your employer has an employee assistance program EAP? I have thinking about using my EAP to help as I have been feeling down about my MS and my husband has been stressing me out due to changing jobs and drinking too much. I bet MSAA has resources as well.We are here anytime you need to vent. I wish you felt more supported and not judged by your caregiver support group. It is very normal to have the feelings you are having even when there is a cause for your husband's behavior.

[whwiechm]

Speaking of acronyms, at my primary job, I was working on an Image Processing System, IPS. In my EMT class, one of the first things we were told was to do an Initial Patient Survey, IPS. Then my daughter came home from school and told me about her new classes, one of which was Introduction to Physical Science, IPS. I'm beginning to hate acronyms.

[Sandydemop in reply to whwiechm]

same

[NanaCC in reply to whwiechm]

lol where I work that’s all we use

[Kenu]

Looks like you have your hands full 😖 Prayers are with you 🙏🙏🤗

[RoyceNewton]

I can imagine your pain and frustration. I can but say please becareful. Do not hurt yourself. Try to be kind to both of YOU. I hope when the day comes, which it will I have your positive, steadfast attributes. Good luck and the best to both of YOU.

Royce

[Sandydemop]

hi Nana, it's a LOT on your plate. I hope you can practice some self care. so glad there are caregiver support groups for you. also please vent here anytime. My husband also has stuff and for both of us i arranged for him to live in a residence. It's working out better than expected. He is getting all the care that i could not provide. wishing you well.

[NanaCC]

He has psych appt Friday I am going with him to plead to her that I need help asap and couples counseling. He got her from Parkinson’s dr, she loads him up with so many drugs I’m afraid he’s going to crack open his head falling. Last year she sent me to a woman in her practice said she couldn’t see me conflict of interest. I went to dr she didn’t want to talk just prescribe drugs told her I didn’t want more. Am I wrong is that the solution drug me until I’m numb. So grateful for this group I don’t feel so alone thank you