Nightmare Experience

CatladyNW

My DH, who has Parkinson's dementia and is totally disabled, started to deteriorate rapidly last week. He needs a tremendous amount of hands on care. He was becoming more agitated having paranoid delusions, and tried to leave the AL/MC facility. I had him evaluated for Hospice and he was admitted, and they left orders for new meds including Seroquel. The following morning, I received a call from the Director that DH had wrapped an electric cord around his neck (turned out it was a phone charging cord), and he asked me if I would approve calling the EMT's. I told him to call Hospice, but he ignored my request. The EMT's took DH to the ER, where he lay for SIX days. (There is no geripsych in our rural area.) The hospital refused to admit him as an inpatient, as there was "no acute medical condition" . The facility initially refused to let him return, because he was "a danger to himself and others". A poor, frail guy in a wheelchair who couldn't hurt himself or anyone else! As the hospital social worker told me, they had "dumped" him in the ER, apparently pretty common for high needs dementia patients. Finally, after my getting the state involved, the facility took him back, on condition that provide 24/7 private care giving (very costly) until he is stabilized.

I had to revoke the Hospice designation the day DH was hospitalized in order to have Medicare cover the ER bills, which I assume will be astronomical. When he returned to the facility, Hospice was reinstituted and we are now trying to get his meds established so he is calmer and more comfortable. But DH is in terrible shape, can barely speak, is not eating, or sleeping properly etc.

The problem is that when I placed DH, the AL/MC staff was different. He has been there one year, and the Director has changed twice, the medical supervisor changed, along with most of the other admin staff. Caregiver turnover has been high (because they pay minimum wage) and the place is short staffed. Apparently the ownership changed since DH entered and the new company that has taken over is just cutting costs. I feel terrible that I ever placed him there, and that I did not act sooner to get him out. I have filed complaints with the state LTC agency, and they are conducting an investigation, but it doesn't help my DH much.

I have spent the last week searching for a new MC, and finally have a situation which I hope will provide better care. I am making arrangements to move him next Tuesday. I don't know that DH will ever recover to the baseline he was before this awful experience. I am sick over it. I wish I could offer some good advice to those looking to place their LO so they can avoid a similar issue, but I honestly don't know what I could say. I had researched facilities at length, utilized a placement service, carefully checked references, etc. I am angry, guilt ridden, and most of all sad that DH has suffered this way. It has been a long road and I've done the best I can, but it is still ending very badly. Just had to vent.

SDianeL

so sorry. No way you could know those changes would happen at the facility. You did all the right things. Praying his move to the new facility will go smoothly for him. Sending hugs.

​fesk

Very sorry you and your husband are going through this. Seems what happened was out of your control and you are doing everything you can. I hope everything goes well next week.

M1

I am so so sorry. We endured a brutally bad Geri psych hospitalization, I recall how much energy it took to call the state and Medicare down in the hospital when I was already worn out. Bravo to you for fighting so hard for your DH. I hope the move and his Hospice experience brings you both peace. Sadly I wish for my partner’s death every day, she is so ready. End to the suffering. Stay strong and keep us posted.

CatladyNW

Thank you all for your kind words, they are comforting.

@M1 I know exactly how you feel and I am grateful for your saying it so plainly. I wish the same for my DH, as it is so painful for both when there is no quality of life.