the nightmare of respite

Judy.T. · September 8

Sorry, I need to vent to my hive before I take someones head off.

My DH is in stage 7 and on hospice. I am having family from out of state come to visit. I was so excited. I was going to put him in respite care for the week. Picked out a spot that was suppose to be one of the best in the city. Friday morning comes to drop him off, Let the nightmare begin! They sent me e-documents to sign in an e-mail. The e-mail said" Don't worry about the first page as we will gather that info upon admission" The admissions coordinator brushed us off and hurried us into the room. She said the nurse would be in to help us. The nurse came in said hi and left. Then a really nice CNA came in and actually spoke with us. She said "sorry for repeating all this, since they must have gone through it all with you. I said no one has said anything. She gave my DH a red push button and gave him the instruction to push it when he needed help. I laughed, seriously laughed out loud and asked if she was serious. He could not push the red button, he could not even id the red button. I was told that's OK we will take care of it. He was given a clicker for the TV I couldn't figure out! What did they want him to do with that? again I explained how bad DH was and she said "It's OK, we will take care of it" They told him what time was lunch, so he could walk down to the lunchroom. I explained this man can not find the kitchen in the house we have lived in for 19 years, he will not find the lunch room! Again i was told "It's OK, we will take care of it" On my leaving I stopped in and asked the admissions coordinator again about the first page that needed all the info of who to call. She said it was OK they got all the info from Hospice.

That night our son called and asked it the facility got a hold of me? They called him since the could not reach me or our daughter. THEY HAD THE WRONG PHONE NUMBERS! They blamed it on Hospice. I don't think so, since they call me multiple times a week.

We go in the morning to visit. He is wearing the same shirt I sent him in the day before. His dentures were not cleaned, or removed the night before. He was playing with a cup of pears. We took him out to the courtyard and he was so off and tired. We put him to bed and went off to lunch. That is when I started getting calls from the hospice nurse and the facility nurse. They said he didn't sleep the night before and was wandering up and down the hallway, going into other peoples rooms and he was refusing to eat. He is in stage 7 dementia! They wanted to up his meds.

I went and picked him up. upon dismissal they gave me his unused meds in packs of individual doses. When I got home I looked at them, only ONE pill was missing. They did not give him his night meds. They didn't give him his sequel. no wonder his was up all night. They didn't give him his haldol, that is why is was so agitated! They did not give him any pain med for his back pain. They told me he was put on the wrong wing because they didn't have a bed in the memory wing. They were going to put him in the memory wing then bring him back to his bed at night to sleep.

He is home, he is now safe and he went to bed by 8pm. But I have been stewing and want to rip someones head off.

Sorry for the long vent but you are the only people who will understand and get this. Now I have some real trust issues and will never leave him again.

Victoriaredux · September 8

Suggest you first , all sweet, ask for a copy of his chart , then when you have it in hand consider doing this: file a complaint with whatever agency licenses them , and finally - if you've paid them - write and ask for a refund , if you haven't paid respond to a bill with why you don't think a can of pears was worth those charges.

Thanks for sharing this story. I guess having a form for them to sign up front agreeing it will be memory care 100pc of the time , listing what meds & when need to be spelled out and signed by any facility in the future.

"The admissions coordinator brushed us off and hurried us into the room." I wonder if she/he was traveling light on paperwork to hide the fact they didn't have the right bed. If it is a national chain , file a complaint with them .

Can you imagine if the patient was alone in the world and their guardian was on vacation that week -what a week of neglect would have done?

M1 · September 8

I'm so sorry, but can't say I'm surprised. This is why even in the best facilities close oversight from families is so necessary. There's a wide gap between the theory and praxis here. They should never have accepted him if they didn't have the appropriate bed, and I would do exactly as Victoria says. I would find out what board licenses them, call them and ask how to file a complaint. Then raise hell.

This is minor by comparison, but I think of all the little things i do on my daily visits to memory care that keep things on the rails for the staff and my partner. if I weren't there every day, who would plug the TV and lamps back in when she unplugs them? Put the toilet paper back on the sprockets when she takes it off and moves it to the other side of the room? Find the TV remote when she's unzipped her pillow and put it in there ( who would ever think to look)? And that's not to mention that she still refuses baths or clothes changes from anyone but me. Right now we're going on ten days since her last shower. With nearly every load of laundry there are still items that don't get returned unless I inventory. I feel like if I don't go, things would come undone in short order. I don't dare plan an out of town getaway. And this is in fact supposedly the best (and most expensive) place in town.

I'm sorry your plans for your family visit got derailed. As caregivers we really have so little leeway and can't count on any other life, that's the sad truth. The lesson over and over is just not to have any expectations. As Bill so famously said here, the cavalry is not coming.

DTSbuddy · September 8

Thanks so much for sharing your story. It will help me remember why I do not have an alternative right now. You are doing a wonderful job caring for your LO. It's the right thing to do. Best of luck, and a big hug.

Last Dance · September 8

Putting someone in memory care is a crapshoot at the best, You never know all the dice are going to end up rolling . Like you I put my wife in memory care it was supposed to be the best in the city 5 star rating I'm not sure who gave it to 5 stars. I guess if you could take care of yourself it was okay but for my wife it wasn't .

My wife could not talk she could not walk she would not eat anything. She would just drink shakes or liquid nourishing drinks . They gave her the clicker to To call the nurse, but like you I told them that she wouldn't have a clue what that was for or what to do with it. And she didn't even know if she needed to call somebody or not. One day she picked it up and was playing with it and the CNA came in and ask what was wrong?

I said nothing and I just let it go on that way, of course she kept pushing the button and they came back again and then about the third time they said why is she pushing the button when nothing is wrong.

I said why do you think? to her it's just a play toy she hasn't a clue what it's for. And it was the same thing with the TV remote they'd put it by her and expect her to change the TV. Fortunately for her I was there every day from the time she got up till the time she went to bed except for four days when I couldn't make it in until 3:00 in the afternoon. And two nights when I had to leave early.

My wife only lived six weeks there and I was getting ready to bring her home when she went downhill pretty fast.

I can’t imagine what would have happened to her if I wouldn’t have been there to take care of her. I guess when you consider memory care all you can do is roll the dice and hope it comes up a winning number.

I still have nightmares about those six weeks.

jfkoc · September 8

Bravo to you for containing yourself for even a minute.

Thank you for y our post. Everyone needs to know that there is no guarantee that a loved one will be cared for in any kind of placement.

Please keep us updated and please do all of the above in the name of helping others.

Jeanne C. · September 8

We also had a bad experience with inpatient hospice respite. Like your experience, they were not prepared for a PWD. Suffice it to say I will not be using it again. Every other experience we've had with hospice has been great. I'm sorry you and your husband had to deal with that.

White Crane · September 8

I'm so sorry this happened. My DH has been in MC since January and while I don't go to see him daily, I am up there at least three times a week and they all know my name. I have had to talk to the administrator many times and am always advocating for him. It is the only way to get anything done and some days I have to grit my teeth.

JJ401 · September 8

My MIL was in two different memory care facilities. The first one was awful. The only day the care and food was decent was the day the state inspector did a "surprise" inspection.

Family got her moved. The difference was night and day. The food was good. She had an excellent set of regular caregivers. The activity people organized daily activities and there was something that almost everyone could enjoy. They may be few and far between, but there are some decent facilities.

First facility was not family chosen. It was the place that had a bed when hospital released her. Second facility, the sister with POA arranged. How she managed to get her in I don't know. It wasn't because of what the family could pay as MIL was a long term Medicaid patient.

SDianeL · September 9

so sorry. Your state regulates nursing homes and memory care facilities. Google it and file a complaint. If you don’t get satisfaction get an attorney.

Judy.T. · September 9

https://alzconnected.org/discussion/comment/222252#Comment_222252

So far my adult children have kept me calm but our daughter said "Mom use your quiet voice that scares the crap out of people" I am the most patient, easy going person, you will ever know… Until you mess with my family! I once sued the city because when they built a multi million dollar museum, the neglected to make it handicapped accessible. I could not get in with my dad, wheelchair with ALS, sister wheelchair with cancer, & mom walker Parkinson's, on one rainy day. The city was fined everyday they were out of compliance and fixed it.

the nightmare of respite

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