You Can’t be too Careful

Mark SegrestBy Mark Segrest

Wayne Caswell and I have teamed up to create a site for discovering and sharing information about today’s Home Health and Aging issues. Wayne will provide technically refined analysis, and I’ll present perspectives from my own family experience.  My Goal here is to share my experience and start discussions on subjects that help other families. So please feel free to comment on any of my posts. I feel we all need all the help we can get.

I will address family issues of having an older relative to care for. My number one suggestion is to PLAN AHEAD, since being ready for the arrival of Grandma will make life much easier for all.

My story includes four phases and some suggestions that could improved the experience.

Phase 1 – Transportation. My wife’s mom is eighty, and we expected that someday she would move in with us. We have a one story home with a couple of extra rooms, since our boys have moved out. But we still have two daughters at home with an active lifestyle.

About three years ago Grandma began having trouble walking up steps and standing for long periods. So we entered into what I call Phase One of support: transportation and co-visits with Grandma’s doctors. We started with local Doctors and soon progressed to specialists in San Antonio, more than 90 miles away from our home in Cedar Park. After a great many trips and tests, Grandma was eventually diagnosed with Polymyositis, a degenerative muscle disease.

Phase 2 – Home Care. As months passed, Grandma needed more assistance. At first she used a cane, and then braces and a wheeled walker. She was living almost an hour away from us, so we moved her closer into a rented home with her friend. That helped her to maintain independence in a home that was close enough for us to help in a Phase Two: home care and continued general transportation. (Each phase adds onto the one before.)

Phase 3. – Medicare. For us the next step came abruptly when Grandma fell and broke her hip. Now the home healthcare learning curve escalated quickly. We soon realized that greater preparation and a knowledge of Medicare and home care requirements would have made things much easier.

Phase 4 – Beyond Medicare. My expectations for Medicare were and still are greater than reality. I understand some of the reasons for Medicare’s rules but also think resources could be used more effectively and information could be better presented. When Grandma falls and is injured, Medicare will pay for her original diagnoses and hospital stay, but only for a few days. She then can enter a Rehab facility with hospital-like care for about four weeks. After that, Medicare will only pay for an Skilled Nursing Facility or In-Home Assisted Living. The Nursing Home stay is limited to about three months. In-home care is covered for a few more months if she is responding to in-home rehab. But eventually, Medicare stops payments, and then it’s up to the family to provide care even if, as in our case, the doctors still believe professional care is needed in the home.

Here is how this all played out for us:

After the Hospital stay, Grandma was transferred to a Rehab facility, and we were happy with their care and the results. The care was very much like her Hospital stay, with Rehab exercises twice daily, and progress seemed reasonable. She was walking with a walker in a couple of weeks for short trips down the hall or to the bathroom.  The social worker started giving us information from different sources on where to get help and what to expect. Some of the information was helpful, and some wasn’t. We learned it was OUR responsibility to find the best solutions for the family and Grandma. In the following months we made some good decisions and some not so good. One almost proved fatal, so I hope others can learn for our experience.

Our Big Mistake:

When Grandma’s stay at the Rehab Center was over, I was given a brochure listing local Skilled Nursing Facilities in our area. Two of them were in Cedar Park where we live. I visited both and chose the newest facility for its brighter appearance, because I didn’t know anything else about it other than it looked nice.

I chose wrong and Grandma almost died. The facility I chose was understaffed. One nurse had to cover way too many double rooms, and the “skilled Doctors” were actually Physician Assistants (PAs). Let’s just say I was not pleased.

Both my wife and her mother have allergic reactions to certain chemicals in medicines. Grandma has a very long list of drugs she has had reactions to. When we had her admitted to the facility, I explained this, but apparently not strongly enough, or not to the right staff. I’m not sure, however, that it would have made any difference, since later discussions with the PAs were not fruitful.

I stopped by one Thursday in the third week of Grandma’s stay at the facility. She was not felling well and had trouble keeping her lunch down. I spoke with the nurse on duty and expected he would keep an eye on her. I stopped by again Friday, and she was sleeping. Her roommate told me she still was having problems eating. Friday night we got a call at home from a nurse who said they gave Grandma Phenergan to stop her vomiting, but that she was now sleeping again.

I went to the facility first thing Saturday morning. Grandma was awake but feeling very week. She was just plan ill. During this visit, her roommate told me of other concerns she had. She said Grandma’s heart rate was as high as 126 on Friday, with very low blood pressure. She said Grandma’s blood pressure was so low that they stopped giving blood pressure medication. She also said the problems all began when they started giving Grandma those drugs for Depression. What? Or was it the change to oral substitutes for Insulin. It all started on Wednesday.

I then located the Nurse on Duty, confirmed that what I just heard was true, and convinced the weekend crew that everything medication-wise should return to as it was on Tuesday.  Sunday Grandma could eat again but was still real cloudy on events of the last few Days.

Sunday I was on the Internet and found a Nursing Home rating website that rated our current home a Two-Star. I found only one facility on this site that was rated a Five-Star. Monday morning I meet with the Staff at Grandma’s current home, and we went over the events of the last few Days. I won’t go into all the details, but you can imagine they did not like what I had to say.

The curt response from the PA that recommended the medical changes was, “Well if you think you can do a better job, you can take over her medication requirements”. I Did!

I visited the Five-Star facility that afternoon, since I finally had a better idea of what to look for. “How many patients does each nurse handle? Do residents other than the completely disabled seem happy?” Things looked much better there, and we had a very long discussion on my expectations, including My Number One Rule:  “no medication changes for Grandma without my permission.”

Grandma was moved to Trinity Care Center in Round Rock, TX on Tuesday morning. We were very happy with the change to Trinity. I’ll end the story here and call this Post #1. I’ll discuss other lessons from our experience later.

Lessons learned?

Plan ahead! Grandma’s primary physician said we were lucky. We could have lost her that Friday. She should have gone to the hospital. I have since spoken with two people who lost loved ones at the original nursing home.

I no longer trust any recommendations on health care for Grandma without checking them out. It seems to me everything is biased. It can take a lot of homework and discussions with experienced users before you can make informed decisions. I have now become skeptical of all the advice available on Grandma’s care. That’s one reason for this site – for the community to share their own experiences and advice to prevent mistakes like we made.

I searched again for nursing home ratings today and found them even more biased than ever. I also found it odd that Trinity, which was once rated Five-Star is rated much lower. Go figure.