Why is it so difficult to get a loved one into respite care for a mere 5 days? Is it really worth it in the long run when those 5 days are spent worrying about your loved one’s well being?
As a result of my declining health and the onset of a new disorder I needed time to have blood work done. Consultations were scheduled with my doctors and I needed time to accomplish what was necessary to keep my own health in check to so that I could continue caring for my mother. I felt that a 5 day break from being a 24/7 caregiver a reasonable request on my part. We have the services of Hospice for quite some time, and when they recommended admitting Mom to Respite for a few days it seemed to be the answer to all of my prayers. We have had nothing but good service from Hospice, and they have been absolutely wonderful to us. So I turned to Hospice for advice and instructions on how to go about dealing with Mom’s entry into Respite.
Hospice first informed us that Mom had to have blood work done. However, we were not told this until two weeks after Hospice advised us that they would make the arrangements to have Mom admitted to Respite. We understood the need for the blood work, but I wish we could have had that done at the onset of our decision to have her enter Respite. We waited for the results of the blood work, waited on her doctor to finish the paperwork only to find out that we had to wait even longer for the results of a tuberculosis test before the final arrangements could be made. My initial thinking of admitting her within a week or so after our initial decision turned into a month. I now realize that the problem was a lack of communication between Mom’s doctor and Hospice and between the Respite facility and Hospice.
My next problem began when I inquired as to what we needed to bring with us for Mom’s stay such as clothes, medicines, etc. I knew she would need clothing and personal articles, but little did I know that I would be told by Hospice to take her nebulizer, enough oxygen to last for her 5 day stay, her wheelchair and all her medications. I asked our Hospice representatives for the phone number to the Respite facility (which, by the way, was in Alabama – over a 2 hour drive from our home.) In talking to the Admissions Director I found out I did not have to supply Mom’s oxygen. The Respite facility would supply the oxygen.
So on Thursday (7/13) off we drive to Mobile, Alabama. The directions given me were fairly good, but Hospice had given me the name of “Benco” as the name of the facility. Does “Vencor” sound like “Benco” to you? I couldn’t find it. However, I did find the address and when I went in to verify that it was the right place they told me they would bring a wheelchair right out to get Mom out of the car. A wheelchair? We had been told to bring our own. This was the first of several inconsistencies. We decided to use Mom’s wheelchair as it was familiar to her. After over an hour of filling out paperwork for a 5 day stay, we found out that mom was their first….yes, their first…hospice patient. Most of the paperwork wasn’t even needed.
We were taken up to a room which had no television or telephone. I was told that if I wanted her to have either one I would have to bring them and call the cable company and phone company in Mobile to have it installed!! Needless to say I was unhappy, but Mom tried to reassure me that she would be okay and for me to go back home.
The facility called the next morning to advise me they were moving Mom to a private room on a different floor. When I spoke with mom moments later she sounded so depressed. She had had no sleep the previous night . She said there was too much noise. She also admitted that she had had no help at all getting from the bed onto the commode.. She had to get herself into the wheelchair, roll herself into the bathroom, get herself on the commode with absolutely no assistance at all and then reverse it all to get back into bed. I thought then of the many falls she had taken at home while trying just to get from the bed onto the potty chair beside the bed with no help, and I was horrified that she was on her own while in a respite facility.
I called Hospice immediately, who seemed equally upset. They were under the impression that she would have a commode by her bed and the help of someone to get on and off of it. Hospice told me they would call the respite facility and inform them she was not to get out of bed on her own again. Hospice also informed me then that the number of days Mom was to be in respite had been miscalculated, and that I wouldn’t have to pick her up until Tuesday. Originally I had been told to pick her up on Monday. I told them to forget it – I would be there on Monday.
I realize that most Respite facilities are not like this and I hope no one has to go through what Mom and I have. I certainly would never again take her to this particular facility, and if the need for respite arises again I’ll go to the facility first and inspect the procedures with a fine tooth comb instead of taking someone’s word for what is or isn’t available.
My main reason for writing this is not to frighten anyone away from a Respite facility, but to warn you as caregivers to please be aware of all aspects of the facility beforehand. We were told to take her nebulizer, her wheelchair and all her medicines for the five day stay, only to find out that they would have provided all of these things. We were NOT told, however, that she would not have access to a television or telephone. It appears to me that all they provided was a room, a bed and three meals a day. They did not provide nursing care for Mom or even an aide to assist her. At home, Hospice had provided her with both nursing care and aides. I feel that the facility Hospice recommended should have been able to provide the same.
I consider Hospice to be a wonderful agency, and their nurses and aides have become a part of our family. Even with Mom in respite, the Hospice aide called our home to get her phone number and was shocked to learn of the conditions under which she was residing. I realize I should have checked out the facility prior to taking Mom, so I blame myself for that, but I hope that any of you who need a break from your 24/7 routine, will take the time to inspect whatever respite facility you anticipate using rather than taking the word of others. The use of respite is intended to give a caregiver a much-needed rest, but what quality of rest can be had when one is worried or feeling guilty about the conditions their loved one is enduring?
Karen Evans
As an added note, Karen wrote on 7/17 to advise she had picked her mother up from the respite center, only to discover that her pillow had been misplaced and some of the medicines her mother had taken from home were missing. She had not been bathed since Friday night, and not once since she had first entered the facility had her blood pressure been taken. Karen reported that although her mother did ring for assistance in getting to and from the commode, no help was sent for at least 30-45 minutes. At the age of 84 and incontinent, this is not merely unreasonable – it is totally unacceptable.
