Problems with rehab facility, any thoughts on this?

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My dad has mid stage Alzheimers, but over the past week developed pneumonia and was hospitalized. The doctors say his dementia causes swallowing muscles not to work properly which causes aspiration into lungs, which causes pneumonia. Sounds logical, what do I know. The hospital was very helpful with very professional, caring, nurses, respitory therapists, PTs, OTs, you name it, speech pathologists, etc. But today we had to move him to a rehab facility to transition at the recommendation of the social worker at the hospital. The main nursing assistant for my dad is good but she is stretched thin. The others are terrible. My dad was pulling the little oxygen thing out of his nose all the time. I asked the nurses, not really nurses, how to prevent this, At the hospital they put mittens on him during sleep. Here they claimed they could not restrain him in any way per law, and I am guessing they are telling the truth, but claim they cannot put mittens on him, restrain him in chair or bed, or have side rails on bed. I live in Minnesota so will try investigating laws. Does anyone know about laws like this? Again, I am guessing they are telling the truth but their attitude is terrible. While there, my dad was always trying to stand up and walk somewhere and we had to sit him back down as he is not yet able to do this after the pneumonia. I asked one what happens if he tries to stand up and he falls down. She says well, then he stands up and falls down. This same lady if you can call her that was mad at me as I went to heat up my dads coffee in the microwave, and there was a dinner in it but not on. So I took it out and put the coffee in it. She comes up and snaps at me she was using it. I said it was not even running. She said she was going to get a spoon to stir it. Later I asked another if they check on him in middle of night at times to make sure he is still in bed and his oxygen thing is in. She said she didn't know, she didn't work overnights. I said, OK, you don't work overnights, but doesn't anyone know what the procedure is overnights. She told me to ask a nurse on the first floor. The nurse on the first floor confirmed they can do checks every two hours, but try to let patients sleep, which is logical, but also worried about him trying to get up to go to bathroom, and fall down. I said the nurses on the second floor didn't even know. She sighed and said, yea, the evening (not overnight) nurses don't know the routine and don't try to learn. I went up again to make sure they had the contact phone numbers. She had my moms phone number with the wrong area code. So I am not happy. I have a call into the Social Worker at the hospital who sent him there. Unfortunately the one near my moms house has norovirus so naturally don't want to go there, but maybe he could go there afeter a few days. On the Voice Mail for the social worker at the hospital, I said based on today I would ike to pull my dad out of here. Am going to look tonight online for other places. Maybe such rehab isn't the right place for an Alzheimers patients. I don't get these so called freedom of restraint laws. I assuming they are telling me the truth, but the attitude (if he falls, he falls, or, ,, we don't know we don't work overnights) really perturbs me. Got the feeling some of the weekend help here were scrubs, doing extra shifts on weekends to supplement their main jobs, so maybe the A Team on weekdays is better. Really sad to leave my dad there alone tonight. I think a saving grace is hes not quite aware enough to be bugged by it. But I didn't feel that same dread leaving hospital. I did have to take an oxygen tank he used to travel from hospital to the rehab center with. The nurses at hospital asked how it was going. I said its completely opposite of the nurses there who were very helpful. They all kind of did an understanding nod as though they hear this kind of story all the time. Any thoughts on all this?

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Hi Karsten,

I'm a Licensed Social Worker in Nebraska and also certified in Dementia Care. I've worked in a combined rehab/LTC facility adjoined to a hospital for 4 years. My first job was as a CNA. The 2 things I love most about my work is supporting families during these tough transitions and working with residents with Dementia.

It definitely seems like you need some support here. You mentioned that not only are you frustrated with Dad's prognosis, but also with the stress of being a support to your mom... and I'm sure you also have a life of your own on top of all this. It's no easy task to be everything to everyone! Find a good friend you can talk to, a support group, or a good nurse or the facility social worker. For your own sake, set your boundaries and ensure that you are taking care of you.

While it's true that SNF's can't use restraints, bed/chair alarms (now considered a restraint), or watch dad 24/7; they are required to come up with new interventions to ensure safety. Regulations require that any time a resident falls, the facility is obligated to place a new intervention. I've seen residents with over a dozen falls and sometimes we have to get very creative. Sometimes we have to accept that a resident is going to fall and we have to ensure that the falls are as safe as possible: low bed (or even mattress on the floor), fall mat, hipsters... However, remember that these interventions only address the behavior (falling) and not the CAUSE of the behavior.

EVERYTHING a person with Dementia does has a reason behind it (unmet need), and the tough part is figuring out what that is. Does Dad have unresolved pain/discomfort, need to use the toilet, is he lonely, bored? Specific fall interventions are fine, but you'll find that the best interventions have nothing to do with falls and more to do with providing a meaningful life. Also, keep in mind that 3 weeks is truly a magic number when it comes to transition into a facility... most of the time, people seem to adjust and settle in around this time.

I would say if you already haven't, educate yourself, on Alzheimer's Dementia. There are lots of great resources out there. Google Teepa Snow (my favorite) or Erin Bonito. They will have more suggestions for interventions for Dad than you could ever imagine and sadly, most facilities aren't educated enough on the topic so lots of intervention ideas will have to come from you.

And most of all, know that just because the facility isn't perfect all the time, doesn't mean that they aren't still taking good care of your dad. If you do truly feel that he's not getting the care he needs, you can report to Adult Protective Services and they can (and do) investigate. And yes, do your own research for other facilities that specialize in Dementia Care.

Best wishes,

Ashley
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Sadly, there's not much assistance at some facilities - I've had private aides with mom with increasing frequency since her move to memory care 2 years ago - they go with her if she has a hospital stay or stint in nursing home
We're now at the point of limited funds remaining and I'm trying to figure how best to cut back the aides and keep her level of care - all tough decisions

You might try to contact your area council on aging to do a needs assessment and help you determine what your options might be
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Thanks Madge. That depends on how rebab goes. I had been thining of getting them into assisted living where they can live together but my mom can get help with my dad in an apartment type setting. But people at rehab think that may not be helpful enough. My dad has lived in his home sixty years and wants to stay there. I had thought of halfway moving in as sort of a full time caregiver myself and would be more likely to of my mom was not so neurotic. She is more difficult to put up with than my dad who is the ill one.
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Karsten
So sorry that your family is going through this challenge

The freedom to fall regs seem so counter intuitive - mom has done several stints in rehab and nursing homes and even before dementia they were difficult journeys

What are the plans for dad after rehab?
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Rehab place seemed a little better after second day until my sister in law called me this morning to report she had called it and my dad had wandered into dining room in middle of night and fell undetected. My sister in law is always an alarmist so I took it with a grain of salt but figured where there is smoke there is fire.

Got to rehab center and truth was he was in wheelchair early in morning in room, when they came back later he was on floor so they don't know if he slipped out or stood up and fell. Either way I was a bit upset and talked to the nurses. They said they cannot keep an eye on him 24 hours so from now on when he is in a chair, and the family is not there, he will be put in dining area where they can be kept an eye on. Still not happy about it but not as bad as my SIL suggested.

The weekday staff seemed more professional, but still some issues.

1. The speech pathologists said the orders from the hospital are to have his mouth swabbed out before and after eating so he doenst swallow bacteria that may have formed while eating. The rehab had only been doing it after eating, and only then when I told them they were supposed to.

2 Tonight, the LPN administering meds asked ME if his meds were supposed to be crushed or whole. (They are supposed to be crushed) But why did SHE have to ask me?

3 Upon intake, they said he would get bathed two or three times a week. The aide tonight said only once, as they are busy and have other things to do. Fair enough, but why were we told twice or three times a week?

I guess I just have to keep on them.

Then I dropped off my mom at home and she wanted me to stay overnight as she is afraid in the house alone at night. But for my OWN sanity, I need to get to my own house to recharge. She doesn't understand that. I feel bad letting my mom down, but I had to draw a line. If I stayed there, she would be bugging me with questions all evening long, and first thing in the morning about my dads care, most ALL of the questions I have clarified to her MANY times.

Anyway, just venting I have posted a couple times before so I don't expect people to reply all the time but it just helps to type it out. Thanks to everyone for all the answers earlier. All very helpful.
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SNFs cannot use restraints. A condition for hospital discharge is 24 hours unrestrained. State laws are strict requiring a protocol, not a policy. It includes a doctors order every 24 hours. So do you think he can be safe in rehab or will they have to send him somewhere else.
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You are correct that rehab facilities cannot use restraints. Skilled Nursing Facilities (SNFs) are allowed to use restraints. It's a nightmare to figure out the "system."
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Karsten, I am so sorry to learn of this terrible experience, as well as the challenging new environment of swallowing difficulties.

These are my thoughts.

1. Find another rehab ASAP, and don't necessarily rely on the SW from the hospital. We did that, had a major problem, and I've never done it again. I created my own checklist, call rehab facilities and go through the list. Some critical issues, such as ratio of staff to patients, will cause me to delete that facility immediately.

Make sure you confer with your father's PCP or treating doctor, or one who treats him regularly, explaining the situation, to get another script for rehab so that Medicare covers the cost.

The best rehab facility I've had, which is one from which my father was discharged yesterday, had a ratio of 1:8 during the day; that means that one staffer is available for 8 patients. Much worst was one I never even considered after asking the same question 3 times. That facility had a ratio of 1:14, and was recommended by two people! So much for some recommendations.

2. The best ones I've had have been in Ann Arbor, with a high standard of care and close to the the U of M teaching hospital, and one locally which was sponsored by the Dominican Sisters of Peace.

The caliber of medical and nonmedical personnel was outstanding. I would go there again in a heartbeat.

3. It is hard to get used to having an oxygen cannula in the nostrils. Aggravating it can be the friction of the cannula against sensitive skin.

Two suggestions:

A. Ask for the the little grey tubes (Styrofoam??) that slip over the cannula and protect the ears. Tugging on the ears or friction can result in tenderness in that area as well as across the cheeks.

B. Either ask for or buy lip moisturizer as hospital and rehab air are dry and can contribute to chapped lips. The lip moisturizer CANNOT have petrolatum, as it should not be anywhere near oxygen.

3. Research dysphagia; my father has it; many others here have and are dealing with it. There are specific eating protocols, i.e., pureed food and thickened liquids, which help avoid aspiration of food directly into the lungs, which can not only cause aspiration pneumonia but inadequate nutrition, leading to loss of weight (33 pounds thus far).

4. When you interview other rehab facilities, specifically ask if they have a Speech Language Pathologist on the staff. This person would create meals for pureed foods and thickened liquids. \

If you have further questions, please feel free to raise them.
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Thanks all. I very much appreciate the insights and encouragement.
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It sounds like you are going through a period of adjustment that most of us face when dealing with the new reality of an imperfect environment for our loved ones. There will be many more times of frustration. Get ready for it so you don't get too tied up in anger to effectively advocate.
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