Please tell me what you would have done. I had my husband in for 5 days respite with Hospice. I took him on Monday. It was suppose to be for 5 nights, he stayed Monday night and Tuesday night I went after him and brought him home today. Reason: They let him sleep until noon, did not offer to wake him, change him or feed him during that time span. I thought that was much to long. Did I over react? I did not tell them that was the reason I wanted to take him home, just that I missed him, which I did but I also did not like how they let him sleep without changing him for that many hours.
Jane-I just watched a TV program called Baby Borrowers. Parents leant their babies to teenage couples to care for under very close supervision. The teens, of course, did not provide the same care the parents did. Parents got upset. I don't mean to equate this with your situation. My point is that you really need the respite and the change in your husband's routine-while not desirable would not make that difference in the long run. No one will care for him as you do-but if you go down who will be there for him. bluedaze
Jane, I feel so sorry that you didn't get your five days. I think the mistake was to go over and visit him. As I recall a daughter was going to check on him. I'm guessing you needed that time off - and now, when will you get it? Hopefully you can figure out a way to take a few hours one day a week and do something for yourself. You are reminding me of the first time I left my teenage sons home while I was gone overnight. I can't say I enjoyed it - and then when I came home and opened the refrigerator there was a huge rattlesnake in there that they had killed and skinned. That gave me nightmares for a few nights, but in reality, they were able to manage AND I suspect the Hospice people were able to care for your husband. Dear Jane, I'm afraid you didn't get much respite...
I guess my point was that it had been at the very least 16 hours since he had been changed, or fed, he did not eat this supper the night before, they bed down at 8:30 and I felt that was too long to go without being changed or fed. 16 hours put out an alarm to me. Maybe I did over-react but I am still glad I did not leave him. Not much respite if you are worried about sub-standard care.
I have used Hospice in other situations and maybe I assume they are all of high quality. I'm so sorry this didn't work out to give you the rest you seem to have needed. But, you did what you felt necessary, so it is a waste of time to wonder if you did the right thing. All of this caring is so difficult. I just hope you can get some rest as you love and look about your DH.
I'm with Jane on this one. Sounds like substandard care and it should be reported. Not all facilities offer the best care. Unfortunately, it is trial and error, as we found out the hard way with Sid's mother.
I am so sorry you didn't get the respite you needed.
I agree with Joan. As a nurse I can tell you that it is never ok to let someone go for 16 hours in a soiled setting or without nutrition. I for one think you were right to take him out and I would DEFINITELY report this so the management, if not to the state department of health.
I am sorry you didn't get your respite. Is it possible to ask for a "do-over" at a different facility?
Jane, me too I am sorry things didnt go as planned but agree if you were uneasy about the care plan you must voice your concerns for the wellbeing of others like you -in any case i would try to use hospice in another facility or maybe even at home? and try to get another day or two out for the needed respite time.
divvi, We do have Hospice at home, you just do not have people from Hospice here at home 24/7. If we had not already had Hospice at home we would not have enve qualified for the in house respite.
Anyway, I do feel I did the right thing. No one should be allowed to lay for 16 hours with no food, liquid, or soil changed. and for all I know if was probably longer than 16 hours since his last food intake, He ate no supper I know for a fact and don't know if he ate lunch or not. No matter what, when you get respite you better check on things. This was a beautiful facility but I feel was not the best care for my dear husband.
Frand, I think it would have been a mistake NOT to go and check. This also is a Hospice of high quality and the care quality they have offered here at home has been wonderful. You may not have used in house care away from home. I would tell everyone, no matter where your loved one is and no matter how long they are there you better check on them daily. Jane
Jane-I am so sorry that things turned out so badly. I know you are on overload but I hope you turn Hospice inside out so the same thing doesn't happen again to those whose families are not as diligent as you.
If you make a complaint this is what you should get:
A written statement that they have heard your complaint and are investigating.
Once they have investigated, an apology for what happened.
A plan to "make you whole". You gave up several days of respite because something had gone wrong. They need to come up with a plan to give it back to you.
What they are going to do to make sure it never happens again to ANYONE.
I was an office manager, and officer of a bank, who handled complaints written to the president of the company. I always sent out two letters. The first was the acknowledgement of the complaint and to let them know I was looking into it and would be writing them back by [fill in a date in about 2 weeks]. The second letter was the apology, the description of what I had found, what I was going to do to make them whole, and what we were going to do as a company to make sure it NEVER happened again, to ANYONE.
It was amazing. Treating people who had complained honestly and with sympathy really did work. In a very few cases we were not at fault. We were still polite, but there was one case were I refused to continue my investigation and someone else took over.
I'm not saying you will get what you deserve, but if you don't get at least some of what I gave people, you need to take a very good look at the company. Something is wrong.
Jane, I have run into many scenarios with my husband in a facility. Many of the problems were due to his behavior and what the aids/nurses/workers were actually able to get him to do. The problem was that I often was able to suceed where they could not. 16 hours is way too long without changing, food and drink, however, what is there policy if a person is unresponsive? I know that where my husband was that if they asked and he refused or didn't answer, they would not push it. Where he is now, they are a bit more pushy but they still have limitations as to how far they can push. He has also progressed to the point where they have a better chance in getting him to do what they want if they are a bit more pushy.
Good luck on this one, I do agree that asking Hospice more questions and letting them know what you found is a good thing to do.
Jane, reading these posts makes me think I will probably never be able to get respite if I need it. I think I was so hoping you would get some time off, since you seem so exhausted, and I envision myself there at some point in the future. I have used Hopsice before and felt so comfortable with them, but apparently, that isn't always so. It seems you did the right thing and I appologize for feeling otherwise. Besides the emotional side of caring for a spouse, now with all the investments tanking, who knows if we will have the financial ability to be caring until the end. It is easy to see the love you have for your spouse - hopefully all of us can make it to the end...
Therrja, You asked what the policy is if they are unresponsive. In answer to your question it had nothing to do with him not responding, they told me they did not try to wake him, they wanted to see how long he would sleep and let him set his own schedule.
I told the in home nurse today when she came why I brought him home and of course she said how did I know they did not change him while he slept. Well Duh!!!!!!!! he would have woke up, and also that does not change the fact that he had no food or liquid. I told them today I wished I had never gotten involved with them and I did not care if he does not even re-cert the next time. ( I am smart enough to know not to opt out, I know I could have problems if I ever had to have them again.) I am sick of having to tell them the same thing over and over here at home, we have been through 4 nurses and each time the stupid things ask me if he can talk. Read the chart and stop making me repeat the same thing time and time again.
Jane
Frand, thank you for your kind words. And thank you to each of you for the concern and care you showed to me. I am just about to scream over all this.
I thought the rattlesnake thing was so funny (I'm sure it wasn't at the time!) I get upset when I come home from someplace and my boys, who aren't yet teenagers, have made a mess of the kitchen! :)
If he was in a hospice paid for by Medicare, you should get in touch with Medicare and they say they will take care of problems where you dont feel like you got the best of care. I havent gone through a reason yet to try, so dont know how they work, but it would be worth a try! After all if they treat your LO like that, you will be saving someone elses LO from the same type of problems!
Jane - I too get "tired" of repeating the same things over & over about what my DH can & cannot do...I am with you ~ Read the chart & quit asking me!!! Of course, since we deal with ALL 24x7, there may be changes that have occurred since the "last time" anyone asked the questions...it is so so hard to deal with, esp when we are dealing with our own feelings of everything too...I myself just love my DH so so much (and I can tell you do too!) and it's hard to handle it all the time & not have "someone" to "handle things" for us sometimes...that would be a "rest" in itself! I hope days ahead are better for you, Jane.
Nurses are used to asking the same question over and over and over again as a safety procedure. I've had major surgery. And if I saw 3 nurses they all three asked the same questions over and over and over again. I had one explain the reasons why to me once, and I stoped being upset about it all. When I had my knee done two years ago, everyone made me point to the knee that was being worked on. In my case both knees, but two different procedures. Same thing with each of my eye surgeries. Which eye? Asked by every nurse and every assistant I saw the day of surgery. And they wanted it pointed to. And think about it, did I want the lense for the right eye ending up in the left one? It turned out that they were different prescriptions. Did I want surgery on the wrong leg and injections on the one that was supposed to have surgery? Not hardly. <grin>
There is also some kind of procedure when you exchange responsibilities which involve actually going through some kind of checklist. It might be useful to actually ask which questions need to be asked and which ones should get answered by the chart.
It all is frustrating, I know, but I think it may be safer.
No Starling, this was not a question of safety, I know the type questions you spoke of regarding procedures are necessary, anyone would know that. The questions they keep asking about my husband are totally uncalled for, such as can he talk, DUH!!!!!!!!!! that is what they were first called in for. Is he Incontinent DUH!!!!!!!!!!! that is why they were called 3 months ago. and on and on. All she needed to do was read the chart. I totally disagree with you here especially in our case.
Here's another one -- we had a "sub" care-giver come in when our regular one was sick...she arrived & I showed her a piece of paper with "Alzheimer's Info" on it...asked her if she knew that was what we were dealing with...she said "no, they just told me he could do everything himself"...oh my goodness! There is def a lack of communication many many times. Before anyone asks, YES, I called & spoke with the owner & made sure that our "chart" shows what we are dealing with, in the event a sub is needed in the future.
Opps, that certainly is not what I was talking about. Errr, what is going on with the management of the place that is providing these nurses and aids?
Look, I did employment counselling. I KNOW what kinds of things you need to tell the person going over there. I've been a temp. I KNOW what you need to know BEFORE you go in to work.
That was NOT the kind of thing I thought you were talking about. They ought to know the level of the person they will be caring for BEFORE they show up.