I Feel Like Screaming and Crying at the Same Time!

Jean

I Feel Like Screaming and Crying at the Same Time!

Jean
light-115392_640Brief History:

  • Two years ago, my sister, I'll call Annette, finally asks for help and agrees she needs long-term treatment (for psych issues which include depression, lifetime of poor decision making and impulsive behavior);

  • We are thrilled and help her find group home with long-term treatment;

  • She does really well there and for once likes her therapists and stays;

  • Last spring, her multiple medical issues get worse.


Thus begins the nursing home fiasco:

In May, after a hospitalization followed by rehab, the group home would not take her back as they aren't equipped/licensed to deal with her health issues. Instead, the nursing home discharged her to a subsidized apartment, ALONE. She hadn't been able to take care of herself before, like not taking meds on time, eating right, etc and had fallen multiple times before she was in group home. But Annette wants to go to apartment because she could still attend the same day treatment program with same counselor and psychiatrist. We (my other sisters and I) all knew from her history that this wouldn't work.

AND, the nursing home discharged her on the day of our MOTHER's FUNERAL. They couldn't put it off for one day! And they discharged her without her oxygen ordered or her belongings moved from storage to the apartment. Plus she has no car or friends in this town, the doctor and hospital are 20 miles away, and closest sibling is 40 miles away. (She's too young for assisted living).

Current:

Annette is 55-years-old with congestive heart failure, COPD, diabetes, reoccurring diverticulitis and is on oxygen 24/7. She is on Social Security Disability, Medicare/Medicaid. She's been in the ER multiple times and hospitalized at least three times since May, twice with pneumonia in critical care with her oxygen levels critically low.

She finally agreed with doctor that she could no longer live alone. Initially, the nursing home she was in for rehab told her she could stay there, but then told her they don't have a license for persons under 65 for long-term care. We were pretty sure there were a couple people there who were younger. I thought that sounded fishy so called and indeed, the social worker told me that. I began thinking it might be because of her psych issues, but it still didn't make sense. I called the state ombudsman and she didn't seem to know why that would be either and our plan was for my oldest sister to go to the discharge planning meeting.

My oldest sister took off work and was heading to the meeting when she got call it was cancelled because of a carbon monoxide leak at the local grade school. All non-critical staff from nursing home were at the school for the emergency. Then before the care meeting was rescheduled, they transferred Annette to another facility.

Annette has now been at the current skilled nursing home for about one month. She was told this was the only place that would take her. This place is a joke. Several people share one bathroom which is a walk down the hall from her room and it is filthy. Today at 6 p.m. the same vomit from early in the morning was still on the floor.

Yesterday she went to ER with lots of pain and diagnosed with UTI and kidney stone. They sent her back to nursing home with meds. Today, she called my older sis (who works nearby and had been in ER with her day before) telling her she hadn't gotten meds and no one had taken vitals. When my sister showed up at the nursing home during her lunch break and asked to see chart of vitals, nurse couldn't produce it and said she didn't know Annette was sick or had been to ER -- that no one told her.

My older sister asked about shift report and asked for the doctor and administrator (as of yet, neither got back to her).

By the time my sister went back to the facility after work, they hadn't given Annette her pain pills for the last two doses; new duty nurse said she wasn't due for any until my sis made her check the chart. 'Whoops' then nurse gave her two at once! The nurse then said, "Well, she has behavior problems" and so she didn't believe that she was in pain. My sister does have history of seeking pain killers but they still need to assess, look at the chart and follow doctor's orders! Plus in last couple years, Annette has been more reliable about reporting real symptoms. I've worked on mental health unit, and her psych issues are not an excuse for the nurse not to do her job!

They also were out of cranberry juice which she was supposed to be drinking so my sister went to store and brought her some earlier in day. She has to keep the juice in the kitchen, and then they still didn't give it to her.

Seems they don't answer the call buttons either, so on one occasion Annette called my sister who then called the nurses station to get help when she was dizzy!

So it looks like we are back to the ombudsman again to get this mess straightened out and find another place. We still don't know what the doctor has approved for her medical needs. This shouldn't be so hard.

We are all so peeved that they transferred her there without ever letting us be included in the care plan even though Annette had requested we be involved! I still wonder if the social worker was inept. Part of the problem is Annette isn't the most reliable source of information, often because of her psych issues and now because sometimes her oxygen is too low and health so poor she can't remember things.

I feel so bad for her and so infuriated at the same time. Back to phone duty tomorrow to find answers.

Just needed to vent. God bless anyone who got through this rambling post!

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LilMagill

HOW AWFUL! It is hard to believe that a person could be so poorly cared for in a nursing facility, even with all the advocacy your family is providing. I wish you the best of luck finding a better place. I would be screaming too.

Jean

Thanks all for comments_mysql and suggestions. I have been just went on Medicare.gov and found more info. \r\n\r\nWhile on phone with my sister at dinner time tonight, I heard her for ask for wheel chair to go to dinner because she feels so week (hasn't eaten but a couple crackers for a day). I heard the aide tell her they are \"out of wheelchairs\" and they told my other sister yesterday that she couldn't have a tray in her room! Scream!

Hussy

Good point Pegi. JMK, you may find this link to Medicare.gov's Nursing Home Compare. You can get information about each facility's five star rating as well as detailed information on inspections. In the lower left corner of the page, you can click on State Website Information which helps explain how you can file a complaint with the appropriate state agency. Good luck!\n\nhttp://www.medicare.gov/nursinghomecompare/search.html?AspxAutoDetectCookieSupport=1\n

Hussy

How incredibly frustrating, JMK. Some people don't have anyone to advocate for them -- I can't imagine what happens (or doesn't) to them. Here your sister has her siblings doing everything they can to make her situation as good as it can be --and you still can't get answers.

jan

JMK, I read every word. My heart is heavy realizing human beings are treated this way, and doubly hard when that person belongs to you. You and your siblings are fighting hard on behalf of your sister. I hope someone compassionate and intelligent finally pays attention to Annette's situation and you get some real help soon. Just because people are able to live on the edge, doesn't mean they should.