“Today I bent the truth to be kind, and I have no regret. For I am far surer of what is kind than I am of what is true.” ~ Robert Brault
This is a difficult post to write. Many emotions get swirled up in my head and often land in my heart. Sometimes the emotions even leak out of my eyes. In order for families and caregivers to understand how the Alzheimer’s mind works, I often use the analogy of walking up a flight of stairs with heart failure. For if you walk up a flight of stairs while suffering from heart failure, and you are short of breath by the time you reach the top, you fully understand why. However, the cruelty of Alzheimer’s and other dementia’s is that they prevent the person suffering from understanding the why. Therefore, the why has to be projected onto anything and anyone else. And all too often that is their family and caregivers.
Their reality is locked into a different realm. Imagine, if you will, that you and I are sitting down over a cup of coffee and having a discussion about the current events of the day when suddenly someone approaches you and asks, “Who are you talking to? Why are you talking about things from so long ago?” You would likely become greatly offended because our conversation is rooted in your reality. What is happening in the mind of a Alzheimer’s patient is as real to them as our reality is to us and when you question it, this causes them to become defensive and upset. The Alzheimer’s patient is prevented from understanding their disease, but we are not. It is up to us to dig deeper in our understanding of what is happening to them. They cannot understand their disease, and sadly, you will never be able to rationalize with them to change their perception of their own reality.
This past week Oasis has been honored to work with two families facing extremely difficult circumstances where their loved ones are concerned. In both cases, the Alzheimer’s sufferer has no idea that there is anything at all wrong with them. The self-neglect is gut-wrenching. Children and other loved ones attempt to help, but all it does it cause them to become angry. They refuse to leave their homes. Everyone knows that something has to happen, but how do you make it happen? It is such a helpless and almost terrifying situation. On one hand you are afraid they are going to hurt themselves or someone else. On the other hand you are afraid of them verbally or even at times, physically, hurting you.
Is withholding the truth, or spinning the facts or just out-right lying morally acceptable in these cases? Let me put your conscious to rest. YES. If the patient cannot remember that their spouse died 5 years ago even though they’ve been told what seems like 100 times, why keep telling them? Each time they hear the news it’s like they are hearing it for the first time. Then a couple of hours later they ask where their spouse is and you try, ever so gently, to remind them that their spouse has died.
So let’s try another approach. When they ask where their spouse is, use something that would have been plausible for that person. Try, “he’s at work and will be home soon” or “he’s in a meeting” or “he’s out in the field trying to get the crops planted before it rains”. Ahhhh…..peace. It may take a few attempts to find what works for them, but once you find it then you can keep using it every single time until it no longer works. Then you search for another. This approach brings comfort to the patient instead of sorrow and angst.
When it comes to leaving their home, the same philosophy can be used. One case in particular it was paramount that the patient leave the now dangerous home setting. The environment was no longer safe. The toilet had stopped working. And therein lied our perfect strategy. In this case the grandson had the best rapport with grandma and so he said that they were going out to lunch. (No mention was ever made that she was moving.) So they did. Lunch happened to be at a memory care community that her family had selected for her ahead of time. Then she was going to the ‘spa’, which she needed desperately. It was the spa at the memory care community where she could be bathed, have her nails trimmed, hair washed, etc. During that whole time a room was being prepared for her and viola’.
Now when she asks when she can go home? Well, you remember the toilet had stopped working, right? She can be told that she has to stay at ‘this wonderful place’ while her toilet is being fixed, or her house repaired, or new carpet laid; whatever works.
Peace. And as of the last report, she is doing wonderfully.
Successful moves, such as this one are so gratifying for us. We know that the family is at peace because Grandma is safe. Grandma is at peace because she is being supported and cared for in a way that maximizes her abilities that she has today, which ultimately increases her self-esteem and happiness. Trying to make it ‘work’ at home can be overwhelming and at times scary; but sadly, they no longer know how to express those emotions.
I remember feeling that we were “on an island” and that it was quite possible that no one knew what it felt like to have a loved one go through Alzheimer’s. We didn’t know where to turn and didn’t know that services like Oasis existed. If you or someone you know could benefit from our help, please reach out to us at any time.
“Remember that the Alzheimer’s patient is not giving you a hard time. They are having a hard time.” – Unknown