- Posted March 21, 2011 by
District of Columbia
This iReport is part of an assignment:
What I Know: Alzheimer's disease
Alzheimer’s Slide – Care and Support (Part 6)
Home Care or Institutional Care? How do you decide?
This choice can be a heart-wrenching experience. My wife told me that she knew Peggy did not want to be in an institution. Apparently, Peggy had told her, “If you take me to a place, I might as well die.” Personally, I think this is an unreasonable burden to place on a child. I don’t believe there is a one size fits all answer to this question.
I pointed out in an earlier article that we experienced a period of physical violence. This was primarily aimed at caregivers, but on one occasion I watched Peggy coax her little dog, which she loved dearly, to come close. When he did, she hit him hard enough to almost knock him over. That was totally unexpected. From that point on, we had to make sure that her pet was not the target of a violent outburst in addition to keeping ourselves safe.
This stage lasted over a year. From what we have heard, it does not occur with all dementia patients. But, it certainly occurs for some portion of them. During this time, I would often remind my wife to be careful to position herself such that she wouldn’t catch an elbow across her face. Peggy was certainly strong enough to cause pain and injury if she connected.
Looking back, I could imagine a family caring for an Alzheimer’s patient for some time, placing the individual into an institution if the situation became too dangerous, and eventually bringing the patient back to the home when the violent period had passed.
We reached a period where I thought keeping Peggy in our home was too dangerous. My wife and I discussed it and she convinced me that she was capable of staying safe. We successfully passed the violent stage without major incidents so I must admit that she was correct. Still, I would recommend that home caregivers carefully consider this point.
I would also recommend that home caregivers take advantage of support groups. It is one thing to read about Alzheimer’s care here or elsewhere. It is quite another thing to be able to interact with other people facing the same issues. In some cases, people remodeled their homes to allow wheelchairs to pass through narrow doorways. Others may have converted bathrooms into handicapped facilities. Issues such as eating, sleeping, bathing, and caregiver breaks were discussed.
The common thread for all was that the Alzheimer’s victim was sliding back towards becoming an infant, totally reliant on caregivers for their wellbeing. Beyond the decline, conditions for one patient might be quite different than the conditions for another patient. One might be totally unable to walk. Another might be so large that the caregivers had real difficultly with bathing and other functions.
Alzheimer’s patients are scared. They cannot understand what is happening to them. They can’t find the words to express their fears. They don’t remember how to use a fork or spoon. They don’t understand that medicines are intended to help them. They sure don’t understand why they have to lose their dignity and let someone bathe them and clean them after using the bathroom. It is hard to comprehend what thoughts are passing through their minds. So, when you make a decision to place someone in an institution or keep them at home, here are some things to keep in mind.
First and foremost – can home caregivers remain safe? Next, will an institution track intake of food and fluids? Will the institution ensure medicines are taken? In discussions with other families, we learned that some institutions take the attitude that if a patient does not take an offered drink or medication, that is the patient’s right. I would agree that this is the right of any patient who is capable of making such decisions. I don’t think anyone would believe that all you have to do is place food and drink in front of an infant and let him/her fend for his/her self. If you are planning on using an institution, make sure you agree with how they are going to handle this situation. How much time will the patient be stimulated by interaction with others each day? We have visited facilities and noted that many patients are simply left sitting in chairs near their rooms or in community areas, but for much of the time, there is nothing to stimulate them. If a patient can no longer use the bathroom alone, how often will she/he be helped? You don’t want someone laying in bed or sitting in a wheelchair for hours waiting to have a dirty diaper changed. Each worker in an institution will need to interact with a number of patients. Understandably, they can’t devote the whole day to dealing with one patient so they try to place the patients on the worker’s schedules. Of course, you need to consider cost differences.
All I can recommend is that you do your research, consider the issues that are relevant to your specific situation, and then make the best decision that you can.
How often do you need to see the doctor will be discussed in the next part.