As most of you are aware, Cindy's health has continues to decline over the past year or so. She was hospitalized in last January of this year and diagnosed with congestive heart failure (CHF). Paramedics had to be called due to difficulty breathing, altered mental status and an irregular heart rhythm. She was intubated in the ER and kept in ICU for about and week and then moved to a step down unit. The CHF diagnosis now prevents her from receiving any futher chemo therapy for her bone cancer, which is actually breast cancer that metastizied into bone cancer.
At the end of February, or early March, she went into hospice care at a facility in Atlanta. She was no longer under the care of her oncologist, Dr. "J" and this upset her a great deal. In order for Dr. J to get a look at her and see just what her prognosis was she needed to be transferred to Dekalb Medical Center which is where most of her care has been.
Additional tests have been run and the CHF diagnosis confirmed. While the cancer has not spread, they cannot tell how involved the cancer is. What we do know is this is very painful for her. Dr. J has told her many times that the cancer is not what will kill her, but the other medical problems, such as the CHF, that will occur during the course of the cancer. She recommended a course of treatment that included daily radiation treatment, not as a curative measure, but for pain control. She has been receiving these while in the hospital.
Her insurance company will not allow her to stay in the hospital any longer and the search was on for nursing care for her. Our first wish was to have her stay in her home. She would need 24-hour care as Larry works nights and sleeps during the day. Insurance will not pay for 24-hour care. Even if we cut it back to 16 hours a day we are looking at a staggering amount of money. She is basically bed ridden. She is catheterized and needs a great deal of assistance in transferring to a bedside toilet for bowel movements. She also has a problem with incontinence in this area and will soil the bed without knowing she has done so. She cannot manage her own medication as she gets confused at times and is not aware when her last meds were taken. She cannot get out of bed to obtain fluids or food and these must be provided to her.
Rehabilitation has been considered, but until her pain is controlled in a way that doesn't make her groggy it is too dangerous for her attempt getting out of bed. It is also too painful.
We considered bring her to our home again, but I now have a job that I must maintain so that Jeremy continues to have medical insurance. I know that you all must understand that. When she was here before I wasn't working and I could handle it better. Without nursing help, caring for her here would be an impossible task. Once again, insurance will not provide for private nurses. She would also not be able to transport to Dekalb daily for her radiation treatments, should she decide to continue those. We are too far away.
The social worker at Dekalb has been pushing for her enter Manor Care Rehab across the street from the hospital. This place was a dump when Jeremy and I transported patients to it many years ago and it is still a place I wouldn't put my dog. This is also the place that Cindy's mother was in for a while suffered abuse at the hands of the staff. So needless to say she didn't want to go into this place. However, Larry decided that all of these places "were the same" and was preparing to sign the paperwork to place her in this hell hole when Jeremy and I started to do what Larry was too stupid and lazy to do a week ago and research nursing homes in the Decatur area. Not to mention that it is plan cruel to allow her to go the place that mistreated her own mother. There was no thought whatsoever for her feelings. Guess where I think Larry should go if the need ever arises?
US News and World report online has a fantastic listing of every nursing home in the US, sorted by state and then sorted by a star system not unlike hotels use with 5 stars being the very best and 1 star being the hell holes. Guess where Manor Care ranked? They also have findings from their last state inspections, including nurse to patient care ratios, percentage of patients who get bed sores, etc. Almost 1/4 of Manor Care's patients ended up with bed sores. I did find a good place in Tucker that was ranked 4 stars and called them. I could tour the facility on Saturday and called AJ to see if she could meet me there.
Jeremy let his dad know and he met us there too, much to my chagrin. The place has been there for a while and I remembered it after we got inside. I did not smell urine or feces. There were no patients sitting out in the hallways in their wheelchairs. There were no patients moaning or groaning or asking for help. It was nicely carpeted with fresh paint and wallpaper, a nice family area and grounds. We did not encounter a single staff member who did not smile and greet us. Very nice. I had made my decision, as had AJ. We really didn't care what Larry thought. Oh yea, the national average for patients developing bedsores while in a care facility is 4%. Golden Living's average was 3%. Manor Care's average was 23%. You tell me.
Telling Cindy all this was another story. She is very upset that she is having to go into a care home, even if it is temporary until we can find out if her strength can be restored or if she wants to go into hospice care again. This is an agonizing decision to make. There are no local family members who can give her the care she deserves and needs. No one has the money to support it either. We know she can't go home and we know she hates the idea of a care facility. We just don't know what else to do. It was a very long day.
I urge you all to let me know what your ideas are. She is extremely depressed at the thought of this. It doesn't make us happy either.
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