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Finding the Best Care for a Loved One in a Coma 

"My brother is still slowly showing more signs of movement. He is now in a nursing home and we feel that we have to watch his care 24 hours a day. Have any of you had much experience with nursing homes? Were any of you moved to a nursing home before you went to rehab?"

"Good idea to watch him. Visit at irregular hours: NEVER AT THE SAME TIME EACH DAY. Make sure that he is repositioned frequently and ask to check his chart as to when he was repositioned last each time you visit. This will prevent bed sores...Sometimes the physician has to order frequent turning/re-positioning to get staff to do this. Nursing homes take every short cut that they can to save money.

Check his food intake, if puree find out what kind of and how to prepare and give him some home prepared food that is pureed with doctor's OK. The food whether pureed or not is nasty in nursing homes. Know how much he weighed when he was admitted and ask that he be weighed once a week. This will determine if there is weight loss. If so, a supplement might be suggested.

Ask at some point in time if the nursing home will allow an outside treatment opinion. What kind of insurance does he have? Check on the nursing home for history on patient care through your State Licensing Office...but DO NOT GIVE OUT YOUR NAME OR HIS. Just say that you may be placing a family member there and that you want to know the history of the nursing home.

If you have problems, try to get a hold of Atlantis, Denver, Colorado. They know nursing home chains and which ones are good and bad...to them there is no such nursing home that is good!

Why didn't he go to rehab first??? Is he in a Skilled Nursing Facility or standard nursing home? Rehab should have taken place straight out of acute care. You may have problems getting him into a rehab unit without a fight.

I have discovered the nicer you are in advocating for him the further you will get. One blow up and the case is marked "family interference. Take it slowly and you will eventually get help."

When I was first admitted to a weather-beaten nursing home there were dead giveaways:

• Leak stains in the ceilings (when it rained there were buckets EVERYWHERE!).
• The furniture was stained.
• Sections of the floor tile was missing (no doubt because of the leaks).
• The garden was not attended to.
• A stench of urine (at a well-run nursing home you will NEVER smell this at the front door).
• The beds did not work, some bed railings were missing.
• The toilets were badly stained and clearly restraint tie-downs were used in the bathroom to keep patients on the toilet.
• Many patients were in restraints in wheelchairs and in their beds.
• Understaffed (each state has their own staffing criteria).
• The staff was not well-trained.
• The staff did not appear to be neat and clean.
• No R.N. on night duty (no meds could be distributed or were distributed illegally if a patient was disruptive and needed sedation).
• The trainer of interning CNA's was a retired LVN who was unable to take a blood pressure...yet teaching!
• Little to no activities, patients stayed in wheelchairs for hours all day...and left in their urine/fecal matter.
• Lots of folks had bedsores.
• Many of the disruptive patients were heavily medicated.
• Patient's had the right to use the phone BUT any conversation could be listened in on and some people had their conversations tape recorded. I watched this process when staff forgot to close the office door.
• Nurses looked the other way when family members purposefully created problems for the patient..."I don't want to get involved", was the common thread of excuse...no documentation, thereby no problems for the nursing home.
• Sexual assaults on a few patients who could not talk.
• One patient over-medicated and died.

They were shut down after the death of the patient. But guess what? The "corporation" that sold the place sold it to a "sister company"! Same practices...they for the most part know each other well. They have annual conventions, regional meetings and learn new ways to cover up their short-cuts or how to duck the state inspections.

I escaped into a really great place...home! Some friends (3) came, packed me up and took me home. I was amazed how they set up my home with every convenience and took turns on helping me until the community-based agencies did their assessments and provided the necessary help.

Neighbor kids and I were on really good terms, I was kind of a "Jello mom" to them...without kids of my own. If they got into a jam at home, they came over to my place and talked it out. They were REALLY special. They helped walk my dog, baked brownies and chocolate chip cookies (my two favorites), helped me hook/unhook to traction (cervical/pelvic), read to me (I couldn't remember how to read), made me pictures that we hung on the walls in my room, decorated my bedroom for each holiday, Christmas caroled after bringing me a tree that was decorated with homemade trinkets, and two of the teens made my Christmas dinner!

The Rehab unit was alot different...I had to keep showing progress or I was out. This was told to me EVERY SESSION. At first I worked my buns off...but after months of listening to the same OL' warning, I finally told them if I heard the threat one more time that I wasn't doin' nothing! I hated the phrase, "no pain, no gain".

I had been harboring angry feelings and apparently they were trying to unload me at this nursing home because they had a private pay patient that was waiting for my rehab bed. By the time I got there I had been stripped of all my insurance and was termed "indigent".

Let me tell you, rehab centers will take EVERY DIME YOU HAVE AND THEN SOME before they find some reason for dumping you. I was warned of this and couldn't believe that it was true. IT IS TRUE.

One of the patients at the Rehab center had pretty good insurance. Another patient came along with really terrific insurance...guess who got bumped into the same rat trap I was sent to? Right, you guessed it. Her dad came all the way from Boston to CA and the nursing home where we were and packed her up and had an ambulance waiting for them outside.

I was a senior advocate for a non-profit agency. I helped numerous clients escape from their nursing home chains...all are still living independently except for one who had heart failure her third year out and died. She said on her exit from the rat trap, "If I die tomorrow, I will die a free woman...not chained to a warehouse to die." She never looked back and swore she'd NEVER GO BACK.

The medical model favors nursing homes and seldom sees any other way of living life for a severely disabled person. This is pure rot when there are good community-based services. I pity the communities without this kind of support.

That is why the two bills that are before Congress are so vital. National Attendant Services is an important key to unlock the warehouses and let patients out who can live independently with some training and community support.

For example, I have 283 hours of attendant services. Without it, I'd be in a nursing home. I live in my own home, have two dogs, four cats, a big backyard that I share with friends (BBQ's) and other kinds of happenings. I am the Neighborhood Watch Captain this year and a block party coming up. We have a blast. I have three volunteer jobs, and am the director of a non-profit!

I was told you will never leave the nursing home world. Ya RIGHT!"

"One staffer at one facility saying good things does not mean the facility is terrific."

Maggie

Note: I am seeking information on nursing home guidelines and regulations on the State and Federal level. Also stories about nursing home experiences, good and bad. Please email any information to rm@berlinwi.com.

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