In 2003, my father died with Alzheimer's disease. He was still physically spry and sometimes almost hyperactive. We regrettably had to put him in a nursing home because, as caregivers, we were so exhausted. I was at the point where, many days, I couldn't recall if I'd given him his medications or not. I had to be diligent about writing down what I'd given him and the dosage and times. There were two of us caregivers then and we needed four, around the clock.
One of the most stressful issues for our family was when Dad was getting really difficult to deal with. Both his neuropsychiatrist and physician would repeatedly tell us to just, "Call the paramedics and let them take him to the hospital." This is the worst advice. It always resulted in him getting even worse and after several times, we finally came to the conclusion that hospitals have no clue, what to do with Alzheimer's patients.
The first thing they would do was to tie Dad down with wrist straps or an apron, somewhere in the psych ward. This is by far, the worst thing they can do as it often results in more aggression and serves to send the patient mentally spiraling downhill much faster. Most hospitals aren't equipped or designed to handle "wanderers", of which Dad was one.
It was hard on us kids and other family members, seeing him tied in a bed like a captive animal and constantly begging us to let him loose. He would get angrier and angrier with us because we wouldn't and there was absolutely, no explaining to him why he had been treated so cruelly. Because most hospitals don't have Alzheimer's Units, he was forced to stay tied in order to keep him from wandering off or into another patient's room.
Time and again, my Dad would come home more disoriented and confused than when he left. The fact that he was tied in a bed and on a catheter was demeaning to him. It was very difficult for him to lie there when he had been such an active and independent person throughout his entire life.
Dad would watch TV, but often, he wasn't allowed to because the general belief among the staff and doctors was that pictures and television confused Alzheimer's patients. This was not the case with Dad; he could still enjoy a show or game. Getting bored while tied down and in pain, would often irritate him even more and sometimes when we arrived at the hospital, he was more agitated, confused and disoriented because of his circumstances than he would have been if he had been allowed to watch TV.
The doctors and staff would not listen to us when we tried to tell them what Dad wanted. They had their own ideas of the capabilities of Alzheimer's patients and they seemed to refuse to open their minds to the fact that all patients are not the same.
Most nursing homes are no better than the hospitals. Few of these have Alzheimer's units and if you can get one to take a wanderer, they probably will want you to place them elsewhere within a few months. We felt pressured to locate another facility for Dad within three months of his Admission. The nursing home complained that he was, "A Wanderer" and was, "Disrupting the other patients".
Dad was put into a room with another patient who had a hearing problem. He kept the TV so loud that it made Dad nervous and irritated him to the point of wandering even more. We tried to explain, but the nursing home administrator insisted that they had "placed him with a patient that they felt he would get along with".
Other complaints the home had was that Dad kept, "getting out" and that he wouldn't "participate in activities". We asked if he would be allowed, under supervision, to work in the flower gardens or if he could grow some flowers in pots. (He was a farmer and later a gardener and plants were his passion.) The nursing home didn't even want to consider allowing him to engage in either activity. They seemed to want him to participate in activities that other patients did. Some of them could still remember how to do things. Dad couldn't recall many activities and he was often more confused and agitated by their efforts to force him.
There comes a point where, "if you are not part of the solution; you are part of the problem." To us kids, the nursing home employees seemed more of a problem than a help to Dad and our family.
We asked if he could visit with his cat. We wanted to bring her in her carrier, on a leash and let him see her occasionally. Many homes allow visits from pets; we saw no reason why one cat would be disallowed. The response was an outright, "NO".
There were only a couple of Alzheimer's facilities in our state. Neither had an available room, so we put Dad on a waiting list for one in the hopes that he would one day soon be able to roam freely about another facility and not be pressed to do things that irritated him. Unfortunately, they called with an available room a few weeks after he passed away.
While there are some Nursing facilities that are Alzheimer's Facilities or contain Alzheimer's Units. I have yet to hear of any hospital that has a unit. Perhaps they lack the funding to add such a unit, but they never seem to run out of funding for another Heart, Cancer or Neonatal Unit. With more than 27 million cases of Alzheimer's estimated today and that number expected to quadruple in approximately 50 years; you would think that facilities would be scrambling to add Alzheimer's Units.
Fortunately, there are a few more nursing homes for Alzheimer's patients, better known as, "The Eden Alternative". Our state had one planned, but it was miles away, making it even more difficult to visit Dad and would not be open for quite a while. "Eden Alternative" facilities are not-for-profit facilities, thereby making them altogether better, more humane facilities. They are more dedicated to helping patients have as much of a normal family life, as possible. Children, Pets are encouraged to visit and often. Patients like my Dad are able to wander freely in many areas of the facility and can enjoy many activities with their own family members.
If you have someone in your life with Alzheimer's, you know that if they live long enough, they are ultimately going to end up in a facility. I encourage you to check out the "Eden Alternative's" website: (http://www.edenalt.org/about/the-eden-alternative.h tml). Ultimately, I would like to see every Nursing home replaced by an "Eden". I encourage you to write or talk to your congress people, representatives and senators and let them know about the "Eden Alternative". Tell them that you want "Eden's" in your state or an equivalent type of facility. That you want the local hospitals to contain "Alzheimer's Units".
Your family member doesn't have to be a victim of the neglect and disdain that is at many nursing facilities. They don't have to be treated as a prisoner in the hospital. In the 21st century, there is absolutely no reason to treat Alzheimer's and Dementia patients like they don't have feelings. And there is no excuse for hospitals and nursing homes to be ignorant of Alzheimer's Disease. If we all pull together, as a society, we can change things. Let's change them before we, ourselves, become a victim.