Just this past week I have had two inquiries from past acquaintances about decisions made for their mothers who have some form of dementia. Oddly enough (or not) both situations had progressed fairly far down the decision making process before consulting me. I liken this to buying anything, say a car, with a decision to go for fuel efficiency or flash and then asking, after the purchase, if you made the right decision.
Like buying a car, there is no one size fits all. Each person has a budget, requirements for cost of maintenance, and soft needs like prestige or ego. In eldercare, particularly when a dementia or some cognitive deficit is involved, there are starting points, and then decisions that can be best made along the way.
First is the need to make certain that the dementia is irreversible. Some dementias are reversible. If you do not know that, then the very first decision may be the wrong one. Finding a physician or a geriatric evaluation and treatment clinic that knows the aging body and brain, and how food and medicines affect that aging body will make a tremendous difference. There are some times when depression, delirium, or malnutrition are causing the loss of cognitive functioning, and some changes to lifestyle and medications can make all the difference in the world. If you are dealing with a dementia that is reversible, then, you fix that and life goes on as normal. AND, you dodged a bullet big time.
So, if the dementia is not reversible, and is progressive you do know that eventually that person, your loved one, will not be the same person you know and love. Physically they may look the same and have a similar smile, but you will cease to be a part of the memory bank, eventually, and the relationship will die. The person will still look like your loved one, but eventually they will be someone else in memory, reactions, love, and companionship. They will not be who you fell in love with or who you have always known as a mother, father, brother or sister. Understanding how best to keep yourself healthy in this environment so full of loss and pain is key. For both of you.
This is when you need to read up on how to communicate with someone with a dementia, and how to survive living with someone who has a dementia. There will be a time period when the person may be in and out of the present, and in and out of cognition. Sometimes that does not happen, but also many times it does. Understanding the disease, and what happens to the person with the dementia may help you cope some. It does not take away the hope that the person you knew and loved will “come back”. But it will make the first part of this long journey easier.
There are lots of resources out in the world to help those who are dealing with loved ones with dementia. Whether you read and research online or attend support groups or pick up books at a book store, you really do need to find out as much as you can about dementia and Alzheimer’s. So many people are so afraid of a diagnosis of Alzheimer’s that they miss the point – it does not matter what the cause, if the person has a cognitive deficit, then you need to know how to best support that person and keep that person in a “safe” place. Logic and reason go out the door. Truth as well. Peace and harmony are the goals, and who knows what is inside the mind of the person with a dementia? It may be really scary from where they view the world. Your job is to ease that pain and lessen that burden. But you really need the tools that help you do that.
So, just a bit of a rant, but the key is to start early, get the dementia looked at when it starts so you can either reverse it or learn to deal with it. And, reach out to those who know and have experience so you can plan your future and that of your loved one in a way that makes the most sense for both of you.