Last week, as I was making telephone calls in order to learn more about hospice in this area, it finally dawned on me what I was really doing. I was trying to put together a book of “answers” to any questions or problems that might come up. I wanted so much to be prepared for the future that I had added an overwhelming amount of work to my schedule.
I want to know how to respond in advance to anything that happened. I didn’t like my response last fall when dad was being released from the hospital. I had only 2 days to determine where he should go and no option to have him return to his ALF. I had no time to tour any of the nursing homes yet I was supposed to submit a list of 5 to the discharge coordinator within 48 hours.
I had found good reviews online for the nursing home I chose. Yet when dad was there our experience was pretty negative. I will admit that much of the dissatisfaction was mine – not dad’s. In fact, within a few days dad didn’t remember his assisted living facility at all. However, he was totally lost. He wasn’t sure where he was and he didn’t want to get out of bed or walk down the hall to have a meal.
All he wanted to do was stay in bed all day. He turned into a little boy who was afraid of everything around him. He just withdrew into himself. I know this was in part due to the fact that he had been in the hospital several weeks –and for elderly people, hospital stays often have a negative impact, especially for people with dementia.
However, within hours of his return to his assisted living facility, dad returned to his old self. He was back to walking to the dining room, sitting in his chair and talking to the staff. He totally became himself again in the right environment.
I have been trying to evaluate what it was in the nursing home environment that intimidated him so much. For one thing, it was huge with and the halls were packed with patients in their chairs, just spending the day there.
In addition to the people (some of whom shouted obscenities at passersby), there was the background noise level which was very high. The noise was from patients, the movement of trays and equipment and shouting of staff to be heard over the din.
The staff were usually pleasant, but most of them shouted too, whether talking to dad who is a little hard of hearing (but not that much!), or to visitors and other staff. I mentioned to one aide that it wasn’t necessary to shout at dad as he could hear her in a normal voice if she looked directly at him when she talked. She said she knew but she was hard of hearing herself so she always shouted at everyone.
The environment in this nursing home was so intimidating that my 2-year-old grandson refused to walk to dad’s room. My son had to carry him in and out down the long hallway. He was only willing to stand by himself when they reached dad’s room.
As soon as I got dad back to his own assisted living facility suite I vowed to do something different next time if dad is hospitalized again. I hoped to find a discharge option where dad can get the care he needs, even if it is more than he can get at his ALF without the chaos of that large nursing home. I know the expectation is that everyone in the ALF (and maybe in the world!) will end up in a nursing home before they die.
I thought if I found dad a hospice, it would be a quiet place to spend the days when he is not expected to survive much longer. I am learning that this is not so simple. Most hospice teams either come to your home or to a nursing home. The only way to get inpatient care in a hospice facility seems to be for respite care or to solve a short-term problem.
For many reasons, home care would not be an option. Therefore I wanted to know what community placement hospice options might be available locally.
After several phone calls, I realized that it was not possible to learn the answer to the question “What is the best placement option?” until I know what his problems might be at that future time. Dad has Alzheimer’s disease, but no other chronic problems that are expected to become an issue in the future.
I finally realized, I needed to know what experts to turn to in a crisis so that I could have professional help in decision-making. Instead of trying to become an expert in everything possible, I had to find an expert consultant.
According to the National Association of Professional Geriatric Case managers , “A Geriatric Care Manager is a health and human services specialist who acts as a guide and advocate for families who are caring for older relatives or disabled adults. The Geriatric Care Manager is educated and experienced in any of several fields related to care management, including, but not limited to nursing, gerontology, social work, or psychology, with a specialized focus on issues related to aging and elder care.”
So, for the time being I have changed my focus from specific possible crises to finding a person who would be available for consultation when the time comes. I have an appointment to meet with a geriatric case manager in the next week. I hope to gain enough confidence in her to be able refocus my energy on day-to-day issues instead of trying to be the expert on everything.