Loving Dementia Patients & Practicing Integral

THE SIMILARITIES IN LOVING A DEMENTIA PATIENT AND PRACTICING INTEGRAL

I am now the caretaker for my wife who is afflicted with short term memory loss. Through no fault of her own, she cannot remember what happened a few minutes ago. So, she will ask the same question (e.g., what day of the week is it?) over and over. And I have had to learn how not to get upset and criticize her for not remembering as if it was her fault and she was not paying attention. It is the disease that is causing her not to remember. If I can remember that, I can calmly tell her again and again that today is Tuesday. Her long-term memory is quite good. We have been married 50 years and she is telling me some stories or repeating some lyrics of songs she knew from before we met that I have never heard before.

I have been getting some help from an organization called Lifespan in the Rochester, NY area that gives help and classes for those who are dealing with aging. In one class I was introduced to Therapeutic Fibbing. In many circumstances when dealing with someone who has memory loss, it is more helpful to do some fibbing than stating the facts. The illustration given was a daughter visiting her mother in a nursing home. Her father had died many years ago. When the father was alive, they would often go out to favorite restaurants to eat. The father was the kind who would see someone he knew in another part of the restaurant and would go off to visit with them for a while. He would always come back to eat with his wife and family. His going off to visit with others for a while became accepted as part of who he was.

So now many years later when the father had died, and the mother is in a nursing home and struggling with memory loss, her daughter is visiting her in a restaurant like setting. Her mother says: “Daddy is off visiting with someone at another table. He will be back in a bit.” How should the daughter respond? With facts? “Mom, you know Dad died many years ago.” That response would make her mother sense that she had done something wrong, that she was responsible for not remembering, and that could send her mother into feeling bad about what was happening to her. It would probably take some time for her to be released from those negative feelings and to regain the smile she had when she told her daughter: “Daddy is off visiting someone at another table. He will be back in a bit.” Or instead of stating the facts, she could have fibbed and said something like: “Yes, daddy always comes back.” The smile would have remained on her face and they could have gone on to talk about other memories. The daughter could have left the visit feeling wonderful about her mother and herself.

We can know that therapeutic fibbing may be the right thing to do in certain circumstances but it can also feel like we are compromising one of our basic principles. We have been taught throughout our lives not to lie. It is one of the 10 commandments; if we appear in court, we must swear to tell the truth; our relationships deepen when we are upfront and honest with the other. And here we are lying to the one who may have taught us never to lie. Something is not quite right.

In Integral Thought there is the distinction between 1st Tier levels of development and 2nd Tier levels. One of the characteristics of 1st Tier levels is that people at one level tend to be critical of people at other levels. Facts are important at all levels but how you understand a fact is different. At whatever level of development, you may be at, you are defensive of your understanding of the facts. You associate and feel supported by those who understand facts the way you do. Why cannot others just accept the facts as we see them? Or, why cannot our dementia patient just accept the facts that their mate is dead or that they asked that question a few minutes ago? How can you have an honest relationship with this person if they cannot accept certain facts?

In Integral Thought there is a 2nd Tier where you understand each off those 1st Tier levels has something important to add to human development. Rather than taking a stance with one level and throwing barbs at other levels, you begin asking what contribution each level has made to human development. For example, you go back to the tribal level and seek to identify with it, to feel what it is like to be at that level, how you see yourself and others, what is important, and acknowledge that in some way that is still a part of who you have become.

I want to suggest that the 2nd Tier way of approaching situations is the way we should relate to those with dementia. When they say something that you know is contrary to the facts, you stop, take a breath, and go to where that person is experiencing life. Was it 20, 30, 40, 50, 60, 70 years ago? Were they children, youth, happily married, struggling to launch a career, retired, just enjoying life with loved ones? See if you can identify with what they must be thinking and feeling. Perhaps they have already told you some stories about what happened when they lived at that level. Ask them to tell you more stories. Enjoy the stories as they enjoy sharing them. Just accept and love them at whatever place their brain allows their mind to be. While interacting, we may remember something about our own lives, something we have forgotten or repressed. Those rediscovered memories may bring a richness to our lives, so we feel blessed as we have blessed the patient by reliving those experiences with them. When we approach our interactions with those who are afflicted with dementia in this way, it is not lying or therapeutic fibbing but deep loving.

There is another part of Integral Thought that can be helpful. Integral Thought talks about quadrants or four different perspectives on any situation. You should look at the individual both objectively and subjective – you should learn what you can by treating them as a thing you can analyze but also talk to them and find out what they are thinking, remembering, dreaming, feeling. Those are two very different perspectives. For the dementia patient, something has objectively happened to their mind. They did not ask for it to happen, but it did. Their brain cells are no longer responding the way they used to where new thoughts could be remembered and stored. The brain cells do not work that way any longer. So, their subjective, internal thoughts are now different. It may be frustrating that they cannot remember something, but they simply cannot.

Those are two of the quadrants – the individual looked at objectively and subjectively. The other two are the collective looked at objectively and subjectively. We have all lived our lives as part of groups with which we feel comfortable and supported. When we look subjectively at our collective, we find many stories that we have shared. Some have made us laugh, some cry, and others that made us mad. We could depend on that collective – family, church group, friends, neighbors – to understand and support us. Objectively, there were neighborhoods, parks, churches, restaurants that support those collectives.

The person who gets dementia finds their collective experience fractured. They cannot go out freely to join others because they might get lost. They may be moved to facilities that can provide services they need. When they participate in groups they used to enjoy, participants may be talking about current events or things that have happened recently in member’s lives. They cannot remember those recent events and so feel stupid and left out. The old collective experience is now confusing and frustrating, even maddening.

When you visit with a dementia patient and seek to be with them at whatever stage of life their disease allows them to be, you are beginning to create a new collective that supports them. Perhaps you can work with other friends or family members whom you help understand how to meet them on their level and so you create a larger collective, a structured collective that brings joy and meaning as the person deals with their dementia life.

There are many similarities between supporting dementia patients and practicing 2nd Tier Integral. Indeed, relating fruitfully to dementia patients may help you mature your Integral living.

Thanks for this post. Demetia is everywhere. I have found the work of Teepa Snow to be extremely helpful. My expartner who is 75 years old and I broke up three years ago. I took a job in Phoenix, and he did not want to follow me and he started dating others not much longer after I left. We [thanks Integral] parted ways amicably and agreed to remain friends and keep in touch. And so, over the last couple of years we would stay in touch by phone, by mail. Well when COVID hit and everything thing locked down (more forcefully in Chicago than Phoenix) all of his lines of social support evaporated and he was completely isolated save for his neighbors and his occassional trip to the grocery store. I noticed some cognitive deterioration but it has become marked over the last few months. I reached out to some members of his family and found out that he had been getting lost and not paying his taxes, neglecting his health, and the family are looking into ways for him to sell the house and get admitted into an assisted living facility. I told his family that I will be calling him every few days to check in and recommended we set up a telephone tree. I also recommended getting him enrolled in Meals on Wheels and some adult day care which could be open now. I found the work of Teepa Snow to be extremely valuable for my phone calls. She encourages care-givers to work with the parts of the brain that are working and to focus on compassion. It is a teaching that totally changed my perspective of this situation, and given me ways to stay involved and give support, even from a distance. To focus on that compassion component is a challenge, not only because compassion can be harder, but because we simply do not have policy and social structures that can cope with the sheer number of people who are experiencing and suffering from dementia. Still, I confess the grief of letting go of the man I once knew has been intensely painful.