Don't say you're going to help then don't

JoseyWales

I'm so fed up I don't know where to begin.

DH had a second seizure, so he's off the medicine that probably caused the seizure, but was also taking care of his delusions and horrible behavior.

Psychiatrist said, "Stop meds. Call me in a week." But no replacement med. Behavior is worse today with crying and asking for his mom all day. I called and said at least give me the RX for the medicine that we used to use as an emergency pill when things got really bad, but he won't. Says that the medication can cause confusion. I'm sorry, but a little more confusion at this point is better than kicking me out of the house, anger, constant pacing and crying.

Neurologist said, "Let's get an eeg." That's 2 weeks out.

It's time for placement, but the nursing home I picked out stopped accepting new residents. Not because they're full, but because they're "reorganizing."  My new search for a home isn't getting me anywhere. Places don't call back, they're full for 4-6 months, won't accept medicaid..... and I have to try to call while teaching. Which is impossible.

I finally got hooked up with someone connected to our health care system, that's supposed to help. I almost cried telling them how overwhelmed I was. She promised help. Said that's what they do. That someone would call me back on Thursday or Friday with a list of facilities that could take DH this month.

Person called today. Said she received a referral and how could she help? SO I went over it all AGAIN. She said, OK. You need to call Aging and in home services. So it appears I've waited 4 days for absolutely no help. She said she was going to help, and I told her something along the lines of "I could really use some help here, but please forgive me if I don't believe you."

Joydean

Josey, I completely agree with you. It is very frustrating especially when your life feels like it’s falling apart and stupid people can only lie and act like it’s no big deal. After all it’s not their life. I’m am so sorry this is happening to you and your husband. I pray you get some help soon! Hugs and prayers for you.

Crushed

Let me plead again

 
It is impossible to help anyone with bureaucracy or state law  if you dont put your  state of residence  in your  profile

You cant just put it in a posting you must put it in the profile so helpers can find it.

 

JoseyWales

I'm not going to put my info in my profile. Ever. My choice. I've not been shy about stating where I live in posts, but I choose to not let anyone who wanders here find where I live. 

I did not ask for state specific help. I have a lawyer who is helping me through Medicaid and other depressing financial support through all this. Through the help of people on this site, the first lawyer I found was an idiot. Who gave me horrible advice, and has resulted in DH being home now for months more than he should.

In fact, I wasn't looking for any advice. I just wanted to vent. It helps me focus myself and see better what I should do next.

LadyTexan

JoseyWales wrote:

I finally got hooked up with someone connected to our health care system, that's supposed to help. I almost cried telling them how overwhelmed I was. She promised help. Said that's what they do. That someone would call me back on Thursday or Friday with a list of facilities that could take DH this month.

Person called today. Said she received a referral and how could she help? SO I went over it all AGAIN. She said, OK. You need to call Aging and in home services. So it appears I've waited 4 days for absolutely no help. She said she was going to help, and I told her something along the lines of "I could really use some help here, but please forgive me if I don't believe you."

Lady Texan response:

I can especially relate to these frustrations. I have worked in health care institutions and in state government. I can't even count the number of times I was let down and/or disappointed and/or angered by the person/agency or entity that was supposed "to help".

Crushed

JoseyWales wrote:

I finally got hooked up with someone connected to our health care system, that's supposed to help. I almost cried telling them how overwhelmed I was. She promised help. Said that's what they do. That someone would call me back on Thursday or Friday with a list of facilities that could take DH this month.

Person called today. Said she received a referral and how could she help? SO I went over it all AGAIN. She said, OK. You need to call Aging and in home services. So it appears I've waited 4 days for absolutely no help. She said she was going to help, and I told her something along the lines of "I could really use some help here, but please forgive me if I don't believe you."

I  realize your are over stretched and distressed and you have my total sympathy  This is a horrible disease and dealing with it demands the patience of a saint
Person number 1  clearly did not understand the help you needed (since you describe them merely as "connected to the health care system", that is not surprising ) but they did follow through and refer it to  person #2 who could send you in the right direction
Person number 2 did understand and told you who to call 
Sad to say That is probably above average performance .

I have pointed out on many occasions that most states are hostile to Alzheimer's patients.  They have a limited set of resources and they make you fight for them. Putting up a wall of calls you have to make is not a BUG its a FEATURE.  

I have a disabled granddaughter. My daughter has to routinely fight for the care her daughter needs, and she is an Assistant Attorney General  very familiar with the system, and disabled children are far better provided for than Alzheimer's adults.  All your feelings are totally justified.  Vent away.