i am new here..haven;t posted in a long time and i am in the biggest nightmare of my life as many of you can relate to
currently trying to move down to florida to be closer to my family as my husband, after 4 years of me telling him finally realized i am too sick we can no longer do it alone.
However, my family situation is horrible and the help is going to be minimal at best and my husband and I love each other very much and really has tried to help but he is also very abusive, inadvertently, and says he gets the neuro and psych stuff about lyme but then turns around and yells at me and neglects me most of the day.
So i feel I am screwed either way and I do love my husband but he claims to understand this disease and do all he can to help yet when i explain what i need to him to help me with my cogniive issues, getting around, etc.....
he is absent minded, not consistent and gets angry with me, as does my mom and says i need things done perfectly...
am i nuts or is needing life sustaining meds and sleep and constant hydration neeeding perfection and is making sure since i am homebound that those things are in the house at all times as well as the ONLY things i can get down when i am constantly nauseaus or things kept out of the way so i can get buy with my wheelchair or my walker without falling (fell 10 times already here)
he forgets to get them or mom says she will get them tomorrow (she doesn't drive) and it doesn;t come for days and then when i get upset they both ssy i am acting irrational and talk about locking me up and my being disrespectful and yet they claim to understand the psychiatric and cognitive aspects of this disease and then try to commit me when I act up or disrepect people
...so sorry to vent..i am not expecting perfection in any way..and we are under more stress than ever so I am trying to cut them slack but even when things were calmer, my husband (who lived with me for 5 years) has always been irresponsible and ust the things i need to function in what little quality of life i have left
so..i have to choose between moving with my husband without alot of the resources i am going to need or being homeless because of cognitive problems and long waiting lists I cannot even get into low income housing.
so sorry to vent..just so upset and this disease is disgusting and to have to choosse between being with family who is so unhealthy and being homeless because there are no services for people like us just makes me sick.
thanks for listening!! i know many of you are in the same situation and i know some people who actually have either been thrown out of their houses or chose to live on the street as opposed to taking constant abuse and neglect from their caregivers when they are defenseless and cannot get out on their own or function cognitively
it reminds me of the movie "misery" and of a person who is innocent being locked up in prison and trying to prove they are innocent.
Posted by sixgoofykids (Member # 11141) on :
Sorry you're going through this. It's a tough disease. Can you find a pharmacy that delivers?
Posted by Tincup (Member # 5829) on :
Sorry to hear about your situation dear one. Sometimes our lives are pounded with things that can be overwhelming.
Hopefully it will come together for you soon.
Posted by Pinelady (Member # 18524) on :
I would hire a lawyer, let him move, and make him pay for your housing.
Posted by aklnwlf (Member # 5960) on :
I can only tell you what I ended up doing.....whether or not it fits your situation, I don't know....
Before my diagnosis, my husband was causing so many problems for me that it made me much more sicker.
Just the tremendous stress of a bad relationship on top of dealing with an illness was too much for me.
I ended up kicking him out and living off of $300 bucks a month.
We were separated the entire time that I received treatment. From 2003 til 2006.
My own family was no help. They didn't understand or didn't want too.
It was horrible to go through my treatment alone.
My family would let me stay one night on days that I changed meds while I had the picc-line but other than that, I was alone.
I can tell you from personal experience that being alone was a bonus for me and helped me to recover.
My husband has mental issues and dealing with his illness and my own was too much.
Do what you have to do to maximize your chances of recovery.
Also, I wouldn't count on your family. If they're not helping you now, I really don't see to much happening if you move down there.
Good luck in whatever you decide to do.
Posted by Snailhead (Member # 18091) on :
I second the motion to find a pharmacy that delivers, if possible. Also ditto the fact that if they don't help now, they won't help later.
How about write down the list of things you need in the house, (ie 10 cans of seven up per week, etc.) and also write down things like "need clear path to the bathroom to accomodate walker", etc. and make it available to husband or caregivers.
Check and see if there is a church close by or Social Services office that can have someone help you with your specific (listed) issues. I know that if my church got a call like this they would definately try and help. Sometimes when we reduce it to written instruction it is easier.
Also, do you have anti anxiety meds for when you feel a little "out of control"? It may make the little things not matter quite so much. God bless you.
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