Nursing Home concerns

[shinything]

Very shortly after my father's ALS diagnosis we toured every nursing home in the area that was available as option to him. He is a veteran, and his options are pretty limited.

WHen my dad was at home he insisted on doing certain things, and at the same time refused to allow us to help him do certain things. Going to the bathroom became extremely dangerous and problematic, and he insisted on going just about every hour. He also would not let anybody help him go to the bathroom.

He was falling and my mom needed to call 911 to help stand him back up.

Shortly before a peg installation he fell again, and decided he should be admitted to the VA early, and it was his wishes that he then be immediately transferred to a nursing home following the surgery.

We have a lot of concerns about this nursing home, but we aren't sure transferring to another facility would make things better.

1. People regularly thought my dad had dementia, and tried to manipulate him. They often said things while in the room thinking he wouldn't know. Some examples:

1. an employee told another employee, "Just pretend to do this, he won't know"

2. "If we help you move over here, then next shift won't move you again" (person didn't want to move him, and just made up some bulls*** excuse)

3. "You ate your breakfast, you just don't remember" (He can't feed himself, nobody even brought him his food) I spoke to my father several times that morning, he told he was waiting for breakfast every time we talked and when I arrived at 10:30 the employee said he would bring it to him, and then when I questioned him at 11, he suddenly said, no uh I mean lunch, Im going to bring you your lunch now.

We go over concerns, People act like they care, nothing happens. Examples:

1. Nobody has cleaned my father's dentures. This should be done every single day.

2. My dad needs to be fed, nothing is in any system about this, we see on the food slip that he doesn't require a feeder. They say they will change it in the system and have a feeder for every meal. Nothing changes. I feed him his lunch and my mother feeds him his dinner. They did finally remember to have him fed in the morning, but it doesn't seem to be in their system, as it is penciled in on his food slip.

3. My fathers catheter has been yanked out multiple times by staff not paying attention to what they are doing.

My dad keeps insisting on moving from a bed to a recliner and from the recliner back to the bed every 3-5 hours. I think this is because the bed he has at the hospital is inadequate, and when he becomes uncomfortable, he thinks being moved to the recliner will help (and it doesn't) so he eventually wants to go back to the bed. He also insists on having a bowel movement over a toilet with a hygiene sling.

Is it normal for ALS patients at a nursing home to be transferred back and forth from a bed to a chair like this? THis is when his catheter is getting yanked. We did have a serious conversation about taking out the catheter and having a special port instead, and we will probably make some phone calls on Monday. This will prevent the catheter from being pulled. He is having terrible bladder spams and has blood in his urine.

He has an air cushion underneath him, but he doesnt have much to help position him, and the bed has no rails. He has one boot for his left foot, but its a short boot, he has nothing to support his entire leg. If he wants his leg raised and his knee up, I have no idea what to do. I rolled up a blanket to go under his knee, but his leg will tip to a side that bothers him.

Last night he called twice around 1-3am to tell us he thinks he needs to get transferred to a hospital because his catheter was accidentally pulled out and he is in pain. Their on-call doctor doesn't actually do anything, and just told him they would transfer him to the VA hospital or another hospital of his choice if he felt he needed to.

I am able be with my dad every M-F from about 8-2:30, he prefers I come from 10-1. THen my mom comes from 2-7. My mom can do this every day. My sister can come Sat and Sun 10-1.

We feel like the staff takes care of him while we are there, but we feel like his care greatly decreases in our absence, and we feel like his requirement to be moved from the bed to a chair, and using the sling to go to have a bowel movement is very dangerous due to staff incompetence.

My father is increasingly anxious because a long term patient across from him regularly blasts his television on maximum volume and screams obscenities. I have been there when it happens. Its pretty unreasonable. Its not just kind of loud. Its as loud as the TV gets, maximum volume.

The staff often ignores call lights for 30 minutes or more, and this patient at some point learned to use the TV at maximum volume and screaming the F word, is faster. But at some point they begin ignoring that too, so blasting the tv and hollering can often last for 30 or more minutes.

Is this kind of behavior normal in a nursing home? If we moved to another facility, is it common to have patients that blast their TV and scream obscenities in the same wing as ALS Patients?

We are seriously considering moving him to a different facility, but worry it will be the same somewhere else.

Can somebody link me to some assistive anythings for bed positioning that the VA could provide? We don't know what to ask for.

I saw some threads that mention the pro bed as an option, I watched the video, and I wonder if something like that could help,but I dont understand how anybody can be auto-repositioned if they have tubes and what not. That seems dangerous?

 

[lgelb]

No SNF is perfect, but yours sounds below the bar I would want for my dad. There are some long-term needs here, like improving the bed, that an OT should be consulted on. Have you asked about that?

I understand your dad's desire to transfer vs. the staff's limited abilities, but transferring is good to the extent that bedbound pts are at greater risk for pressure ulcers, and you're saying the bed has issues as it is. Of course, tubes and catheters should always be protected during transfers. How many staff are involved in these transfers?

I'm sure the vets here and their CALS will have more suggestions about dealing with the VA system to get your dad what he needs for comfort and safety. If you decide to move him, or re-consider other facilities (were there any other contenders?), the medicare.gov site and the State of WI site should help you prioritize options.

Best,
Laurie

 

[shinything]

When my dad first arrived at the nursing home (at his request) he was not feeling very well at all. He was very anxious and very depressed and also very sore and uncomfortable. I don't think he ate anything for several days and he slept a lot.

I agree that moving back and forth from the bed to the chair is good because it helps alleviate pressure and prevent sores, but I wonder if the moves should be scheduled and be a documented part of his care plan ... As opposed to him pressing the button and waiting 30 minutes for somebody to respond by telling him so and so is on break, and then he waits for another hour? When he was at home and I visited he was still shuffling, but he really had no balance and it was very dangerous. He has two lift chairs that he would rotate back and forth from, and one of us was with him to help whenever he needed it. Now that he is at a nursing home, he still wants to be able to move whenever he wants, and nobody ever seems to want to help. I think it is 10x worse when we aren't there.

In regards to the transfers, my dad requests that we leave the room when his transfers take place. Last night 2 people came in, but in the past I have seen three people come in. That being said. If they are all idiots, having three of them in the room is pretty dangerous.

I dont understand how you accidentally rip out somebody's catheter... multiple times. Then I wonder if he has a port put in, what kind of damage could they do if they accidentally pulled on that?

Is it normal for a person to request and receive transfers during third shift? I do think if my dad was more comfortable he would sleep through the night, but because he is waking up in the middle of the night, he finds himself in discomfort and wants to be moved. He is going to start taking zoloft, and we hope that it will decrease his anxiety and maybe help him sleep through the night. Is this okay? My dad is worried that if he is on Zoloft he will not be the same person anymore.

Truthfully, I did not want him to move to this particular facility. I believe he picked it because it is very close to my home. I can get there in 10 minutes. I actually wanted him to move to a facility that is about 40 minutes away, because I felt he would receive higher quality care there. He is worried that we wont visit him... but I would much rather drive a little further every single day to a place where he is safer, than have him right down the road and getting hurt/mistreated due to incompetence.

VA and social workers etc, aren't being very helpful. He is getting a lot of brush off, and my mom literally has no clue what to do. She has no clue who to call about anything or what their names are. I am going to help my dad make some phone calls about having the different port put in for urine. I could use some help with his bed. WHen you are in a nursing home, does the VA still help you if you want a different bed? Does a bed take weeks or moths to come? Are there some other threads that discuss supportive devices for the bed? I dont expect much assistance from the nursing home OT, they are useless, ....they got him a boot, and it isn't helping his leg.

 

[gooseberry]

Do you work with a pva rep? They could help you navigate the system. At hospital they should have assigned him a social worker. Try to work thru them.. Who at the hospital was in charge of his care? Does he have a dedicated team? If so, contact the team lead. I would go see them nursing home head if nothing else works. Then I would be calling Robert McDonald the VA secretary because this is simply unacceptable.

 

[lgelb]

Agreed, he should sleep through the night. Zoloft is more for overall depression/anxiety than sleep and SSRIs can actually worsen the sleep architecture (deep sleep). A low-dose of a TCA like trazodone, or short-term use of a non-benzo sleep agent like zolpidem, depending on his other meds/health conditions(?) may be more to the point if he is not really depressed overall (apart from being in a depressing place!)

If the facility 40 min away is better and the barrier is your dad's being afraid that you won't show up, talk with him about it directly, with your mom, too, as a family planning the future. Tell him that you want to further his quality of life to make your visits more enjoyable overall, not listening to TV guy and worrying about him when you're not there. Point out other places you go that take 40 min that are less important. Discuss the differences between where he is now and where he could be (assuming the other place has a bed). If possible, have a staff member at the other facility talk to him by phone or send an e-mail about his condition and the care plan they envision, how transfers are handled, their experience with ports, etc.

And to answer your question, yes, transfers should be part of a care plan and always documented when they are carried out. Outside of a care plan, e.g. to transfer at 2 am, a wait may be expected but the expectation should be clear and of course transfers should be done by experienced staff.

 

[SLAUGHTER1555]

Wow so Sorry for your experience I've worked in a nursing home and everything you're saying is true. They treated ppl so bad I couldn't believe it, I would spend time with the patients they told me I was taking too long to care for them. Ppl stole their stuff just because they were elderly I couldn't take it so I quit and I have never been back as a nurse aide. Shiny I have been going back and forth about whether I can continue to take care of my PALS and had been considering a nursing home but after reading your post you have reminded me how those places are and as hard as it is right now to take care of my PALS I'd rather suffer with a back ache than send my PALS to one of those facilities smh. That was my biggest fear them mistreating him and he can't speak smh I couldn't imagine it. Thank you Shiny so much

 

[CiCi]

Shiny,
Your story about the nursing facility sounded so familiar. MDH fell, broke his hip and after it was repaired was transferred to a nursing/rehab home. It was a disaster, to say the least. He cannot talk and was 86 yrs old. The aids thought that because he could not talk, he had dementia. To make a long story short he lost 15 lbs in three weeks. I brought him home after many fights with the staff. They are all overworked and underpaid. The good ones leave.
Good Luck. CiCi

 

[bigmark1954]

Shiny..................keep in mind that the majority of CNA's or aids are being paid $10.00 an hour. Rest homes usually only have 1-2 RN's or LPN's per shift for the whole shift.

They are too busy to keep up with the "high maintenance" patients.
We expect them to take as good of care with our loved ones, as we would under our supervision.

Bottom line, you can spend some hours at the care facility and observe how conscientious they are. BUT everything changes when we aren't there.

I am not trying to say that care centers are notoriously bad. Just telling you of my 10 year experience with my mom, who had dementia and COPD.

In that time span, I became very familiar with how they operate. During the 10 years my mom was in a rest home I had to move her 5 times, always thinking the grass would be greener.

Care facilities have a high turn over in CNA and even nurses. Read review on each facility, and be vigilant about his care. Perhaps it is time to explore Hospice, most of them are very compassionate and keep the patient comfortable.

 

[shinything]

Part of the issue is that it was not our wish for him to go into a nursing home, it was his. Prior to my father's diagnosis, he spent many years taking care of my grandmother who died from Parkinsons. She eventually moved to a beautiful nursing home, and my dad was there with her just about every single day. He told us because he was fully aware of how hard it was to take care of my grandmother, that he never wanted that kind of burdon on us. And that instead he just wanted us to visit him as often as we could without constantly worrying about his care, because it changes the dynamics in the relationship. (He also WILL NOT at all let us help him with anything in regards to his personal hygiene or going to the bathroom!)

When it comes to their home, it does not have a first floor full bathroom. They only have a 1/2 bath and it is very tiny and does not facilitate a sling.

I tried my best to show him pictures of remodeled bathrooms that had shower and toilet facilities that could be used with a sling and shower chair, but he said the images were too upsetting and he couldnt look. They did contact the VA and make arrangements for a remodel. After a couple months of going back and forth, my dad was upset that the VA required additional cost/expenditures on a back exit, and some other additional VA requirements that ultimately caused the cost of the remodel exceed the grant funds by over $25,000. The company doing the remodel also said the remodel would "take months," and my mom and dad could not agree on where they would stay in the interim, and had great concerns over workers stealing stuff in their house. So they just cancelled the whole thing.

He can no longer walk, and my mother is almost 80 and she can not lift him. When he falls, he WILL NOT let anybody in the family help, he wants it to be emergency responders, because he is afraid we will get hurt.

My dad hoped he would be able to go to the same home my grandmother was at, but they don't have a program/relationship with the VA. He then had his heart set on another facility, which in addition to accepting veterans, receives a substantial amount of funds from private donors. The facility was remodeled in the last 10 years, making 2 rooms into 1, making 2 bathrooms into 1, and also repositioning toilets so that they are safer to use with slings. They also had a shower room that facilitated a sling, and still had plenty of room around it. This facility says my father is next on their list for admittance, but he can't get in there until they have an opening. It could be in 4 weeks or 6 months.

So, he picked the nursing home he is at now at the last minute out of sort of out of desperation. He had scheduled the peg installation so that he could stay on top of things. He was feeling OK, and wanted it done before it became an issue, and when he fell right before the installation, he just decided he immediately wanted to go to this other place, thinking the better one would have an opening soon. Now we wonder if this is how all nursing homes are. If/When he moves to this other home, will it just end up being the same?
We wonder if this place is just crappy. If he moves somewhere else in the interim, what if it also sucks, he says he doesnt want to move three/four times if he doesnt have to.

I think this is a horrible disease, and my heart is breaking for my dad who has no control over what is happening to him. I feel like he chose the home he is in now not only out of desperation, but just so that he felt like he had some kind of control over something, because this is all so horrible.

 

[Nikki J]

It sounds like there is at least a good possibility nursing home number 2 would be better. I personally would give it a shot if the opportunity arises though it will not be perfect. There will be issues anywhere. There are issues with paid homecare. No one cares for our loved quite as we would.

Your father sounds like a wonderful man with a strong character. I am sorry he is in this situation.

 

[shinything]

We need to learn about the difference between a nursing home and hospice. For instance, I don't understand what kinds of assistance my father is entitled to at a nursing home vs hospice. If he needs another boot/brace for his other leg, do they tell him he can not have one, because he is in hospice? Or if he needs some kind of communicaton device, is he no longer entitled because he is in hospice? We wonder about looking at hospice facilities outside of what the VA will provide, but my mom thinks that medicare only pays for 3 months.