What follows is a personal essay written by Dr. Robert Rietschel on dealing with dementia in his wife. I have not edited the piece, believing it demonstrates well the personal response of a writer/physician to the ravages of dementia in a loved one.
At this time of year, all too often we get together with loved ones only to find that one of our family members or friends has begun “to slip.” I have had the personal experience of seeing family members slip into the fog of dementia from which they never recovered.
This essay by Dr. Rietschel is shared here with the hope that should any of my blog readers suffer such a loss in their lives, that understanding how another person and keen observer learned to deal with his personal, tragic loss will provide benefits and perspective.
Wishing everyone wonderful holidays and a loving embrace from your family and friends.
-Tom Hutton, MD
Perspectives on Dementia by Dr. Robert Rietschel
It was suggested that I write something about dementia. I’ve forgotten who threw down that challenge, but I’ve been avoiding it. My first thought was that I don’t have any brilliant insights on the subject and my medical training hasn’t made me an authority on that discipline. Yet here I am at the keyboard trying to let my mind explore places it would rather avoid.
This disease is not a one size fits all condition. First there are many subtypes of dementia. Even with the bulk of cases fitting into the general rubric of Alzheimer’s, the course of the disorder is highly variable. My mother-in-law lived around twenty years in various nursing facilities as her case slow walked from around age 70 to 90. My wife’s case also became manifest around age 70 and now six years later appears to be on a slow downward progression. Progression is the constant that we can agree upon. This is not a disease that suddenly improves, has miraculously twists and turns, or that you can resolve to fight and somehow influence. I’ve always thought that folks who claim they are going to fight a disease, often cancer, are jousting at windmills. What precisely are you squaring off with? It’s inside of you and you don’t have conscious control over any of the processes involved. If you did, you’d never had let it happen in the first place. I get that there are studies that show a benefit to a positive attitude. To the degree that such an attitude removes counterproductive behaviors that might be facilitating a disease process, I can get on board with that effort. But you really aren’t able to engage the enemy on the field of battle and duke it out.
I am writing this from the point of view of a spouse whose mate has been in memory care for three and a half years. I tried to keep us going together for about two years before the switch to full time professional assistance. I am fortunate in that when we were in our mid-fifties, we purchased very good long term care insurance. Were it not for that, I would have needed to return to the workforce to afford this care which runs around $5000 per month. The other option is to turn to Medicaid, which is run by the states and there are varying rules on how to qualify. Usually, you can have no more than around $27,000 of assets and income of no more than around $2500 per month. Then you have to find a facility that has an open Medicaid bed for your loved one. It was a financial planning seminar that we attended that convinced us to seek out and purchase long term care insurance and it is something I whole heartedly endorse. Enough about practical matters. I’ll not make any recommendations on how to finesse the move to assisted living, there are just too many variables.
Time, Place, and Person
If you visit a neurologist and are asked three questions, don’t be surprised. You are being given a mini-mental status test. Common questions are 1) what is today’s date, 2) do you know where we are, or maybe do you know what type of building this is and 3) do you who the current president is. The first question may seem like an easy one to flub up on. When you are old and retired, you don’t really follow the days of the week like you did when you had to work. It just doesn’t matter. But when my wife was asked that question, I was surprised that she missed the day, date, and year. She was off by about 3 or 4 years. This isn’t like forgetting it’s Wednesday and not Monday. If a doctor is asking you where you are, the easy answer would be in a doctor’s office. What happens in a doctor’s office? You wait. There are lots of places a person might find themselves waiting. Post office, bus station, airport. If you answer a clinic or hospital, you are doing better than my wife who said maybe we were in a church of some kind. My kindest take on that would be that she knew it wasn’t a person’s home but a place open to the public. The president my wife selected was correct. The loss in dementia will often start with the time problem. It is easy to dismiss that as just something old people do. I’ve tried to let you know it is more profound that just getting the wrong day of the week. Time just doesn’t get imprinted with the events of the day.
When my wife entered memory care full time, I would visit in the morning and often telephone her later that day. She would ask when I would be coming to see her. I’d say I was there that morning. She would not agree. I would remind her of some of the things we talked about, and she would say that she recalled us speaking of such matters, but she didn’t realize that was just this morning. There was some memory of the event, but no time stamp. We are all helped by those time stamps on our photographs. We associate some things tightly with time and other not so much. Loss of place is not noticed when you remain in familiar surroundings. Of course, things can become lost in that familiar environment. Did you ever forget where you put something? Sure. Where did I put those keys? Again, in my wife’s case, she couldn’t remember where she put her purse. We would be going somewhere and as I headed to the garage, the refrain was always, “I can’t find my purse.” The search was on. Instead of her purse being on the kitchen counter, it might be in a bedside drawer, in the closet, in the chest of drawers, or no telling. I naively tried to solve this problem by suggesting we always put the purse in the same place. If she wanted to keep it in the bedside drawer, let’s just make that the location. Sorry, but that plan won’t work. She is trying to protect her valuables and that is a directive she learned as a child. My instruction to put her valuables in the same spot every time is recent information. Recent information is what is lost early on in dementia. That older directive to find a secure spot is still working and it is making things challenging. The valuables from the purse were removed and put in a secure location of my choosing so they could be found when needed. She didn’t need money, credit cards, or ID to go with me to the grocery store. She really didn’t need the purse at all, but she didn’t feel dressed without it.
I’m lucky enough that my wife still knows who I am. That isn’t true all the time, but a lot of the time. One time when I was visiting her at the memory care facility the attendant told her, “Your husband is here.” Her response was that that was non-sense as she was too young to be married. Age 73 at the time. Sometimes she remembers me as “her Bob.” I don’t ask for what role this guy named Bob plays in her world. There are things you don’t really need to know. It is grand to be a person known and welcomed. There will come a time when that isn’t the case. That will require more adjusting of expectations on my part, but we’ll get to that subject in just a bit.
The dementia patient does not go quietly into that dark night. Things don’t sit well with whatever is going on inside their brain and they are going to respond to what their brain is telling them more than what their senses and the environment are telling them. Conflict will occur and there can be physical altercations. This can be with family members or other residents of a facility. Or even with well trained staff members. There are medications that can help with this part of dementia much more effectively than the drugs used to try to forestall the progress of dementia. Those drugs to date are disappointing. The agents used for agitation are the same ones used to treat schizophrenia. But not in what are called anti-psychotic doses. Rather in low doses that take the edge off the agitation. There are psychiatric nurse practitioners who can help a great deal with managing this and that leads to my next topic.
Dementia is a lot like other mental illnesses
The recent covid pandemic caused a lot of people to lose their sense of smell. Not only were normally welcome aromas like fresh baked bread no longer sensed, but instead a noxious odor replaced the former pleasant one. You pick your most detested odor. Perhaps a garbage dump, maybe a public restroom. No matter, just imagine that every time a pleasant smell came along, it grossed you out. Your behavior would be one that those around you could not make sense of. Here was a beautiful bouquet of roses and you were acting like someone just handed you a time bomb. You are reacting to a repugnant smell and no one else is getting that. Your behavior makes sense to you and you alone. Your outward behavior looks crazy to those around you. That is a specific neurologic circuit screwup. It is covid induced and now very well known. Dementia does that to random areas of the brain and it creates that same exact problem. The dementia patient is responding appropriately to an internal signal that is contrary to the normal signal that everyone around is receiving as their circuits have not been disrupted.
I will use some of my medical training to introduce two features of dementia that I didn’t expect. That’s probably because I hadn’t spent much time delving into the subject, but those are confabulation and schizophrenia-like behavior. Imagine you woke up and found yourself in a room you didn’t recognize. The furnishing didn’t seem to be yours but the clothes in the closet were familiar. You try to piece this together to made sense of what you are taking in. My stuff, but some place I’ve not been before. Oh, I get it. I’m on vacation and this is a hotel room. I must be suffering from jetlag. I’ll just pull on my swimsuit and head to the pool to catch some rays. As you exit the room, a nurse in white uniform asks where you are going, and you tell her the pool. She tells you the hospital doesn’t have a pool and it’s snowing outside, so you need to put something warmer on. You argue with her and insist that you are on vacation, and you are going to enjoy the weather here at the resort. The nurse asks you where you got the idea that you were at a resort and you claim you know that is where you are because…well, because that is where I was going on the flight I took yesterday. The nurse tells you that you’ve been here a week and must have been having a dream about a much more pleasant experience. About this time a couple of doctors in scrubs walk by as the nurse encourages you return to your room.
What just happened? It depends on whether you are the patient or the nurse. The nurse just saw someone dressed totally inappropriately, claiming to be someplace they clearly are not, and who is profoundly disoriented. The patient woke up confused and unable to remember recent events. It is recent memory that goes first in dementia. The dementia patient is not stupid. In fact, that brain is working overtime to piece together something that can make sense of unfamiliar surroundings and this invented narrative is being acted upon. If this patient were recovering from alcohol excess, we would label this confabulation and put it into a syndrome. The medical name isn’t my point. My point is that dementia punches holes in the circuits that create recent memories and when those holes are encountered you can have invented “facts” given to you and you act on what your brain tells you. But when your brain is inventing facts and you are acting on that faulty information, your behavior is no different outwardly from that of a schizophrenic patient who hears voices and acts on them. Both can create inappropriate behavior which the unaffected folks nearby are trying to deal with or make sense of. This may cause behavior that seems ignorant, dare I say, feeble minded. That isn’t what it is. If you are able to sit with the person and ask what has led them to do what they are doing, you may find that they have a perfectly reasonable explanation for what they are trying to do.
In my example, if the nurse had a chance to sit down with the patient who thinks they are in a resort they might find that upon finding their own clothing in the closet but not recognizing the room, the patient figured out that this must be a hotel room. Since they were unable to recall how they came to be in this strange room, the logical explanation was that jetlag was to blame and that would mean a long flight and surely that would be to someplace desirable. So, I was headed for the pool. That’s my story and I’m sticking to it. At this point our understanding of dementia needs to allow for two different outcomes. The patient may argue the position they have staked out and become belligerent if the nurse persists that they are in a hospital. Or the dementia patient may have started to reprocess the additional information of a nursing uniform, doctors in scrubs and think that perhaps it was a vivid dream. My teaching point would be to expect both outcomes and be prepared to deal with each. The second teaching point is that you will not be the one who determines how that will sort itself out. No degree of reason or visual evidence will change the dementia patient’s mind if they have locked into their version of reality. This is not a failure on your part. You can’t fight this disease any more than the patient can. Sometimes you just have to make the patient safe and as comfortable as possible and walk away. It won’t be long before the patient is off on some other tangent.
All the books about dementia tell you to remember you are talking to the disease and not the person you used to know. Doctors are encouraged to treat the patient and not the disease. How do you bridge that dichotomy? I would advise that you aren’t going to have every interaction with a dementia patient break your way no matter how skilled you are or how much experience you have with dementia patients. You’ve always been told you can’t win ‘em all. My advice is first to remember that something that looks like totally stupid behavior is not a sign of stupidity. Those holes in the circuitry have been filled in with bad information. Usually, the reasoning has not been messed with and is possibly sound. One common example from my experience with my wife my help make my point. She couldn’t find something that she valued. For example, she may have forgotten where she put her watch. Since she can’t find her watch, she reasons that someone took it. After all, the rooms where she resides in assisted living have no locks on the doors. There are nine other residents in this facility and she’s sure one of them took her watch. She doesn’t know these people well and there may be thieves among them. She hides anything she thinks in valuable now. This creates more things she can’t find. The problem of course is that she just doesn’t remember where she put things. No one was stealing anything. The items were found in her room in odd places. Like in a coat pocket hanging in the closet. That’s an odd place to keep your watch, but it’s a good hiding place for something valuable. Of course, when such an item was found in her room, she was sure the thief had put it back because she was on to them. Does she sound like a paranoid schizophrenic? Kind of. Can you follow the logic from her point of view? Sure. Here you have the problem of knowing the person who would protect things of value and recognizing how that was once a positive trait and now it is causing nothing but trouble. The disease taking over from the person. But doing it by deleting critical information. And that leads to faulty invented pseudo facts. What would you trust? What your own brain is telling you, or what someone you recognize as family is telling you that contradicts your brain? That is the challenge that the dementia patient faces and that is where you get into the dichotomy I alluded to. They may lock down on their own input or surrender to new external information. Suggesting the misinformation was part of a vivid dream sometimes helps move the discussion away from confrontation, but not always. You won’t win ‘em all. See if this helps. It is context that has been lost and that can alter personality as things are dealt with in outwardly unreasonable ways, but personhood is preserved. There is still a person trapped inside that demented mind and their feelings are intact. They can be offended, their feelings can be hurt, they can express joy as well as anger. Granted they may not remember those feelings in an hour or two, but they will emerge if you trample on them.
A rare syndrome
When I was an intern, I took care of a patient with locked-in syndrome on the neurology service. In this rare disorder, the patient cannot communicate with you by doing things like writing notes or squeezing your hand. They can’t move those muscles. They can’t talk. They can hear. They can think. But they can only communicate with you by blinking their eyes. They must know things they want to communicate but can’t. Imagine dementia induced deficits that block your ability to communicate. A more common example would be a stoke patient who has aphasia. They know the word they want to use to communicate, but they can’t pull it up and speak it. It’s just not coming through. Dementia can disrupt circuits that create similar obstacles. But not just words, entire events. Memories. Gone. A good friend of mine, a fellow dermatologist, was a concert pianist. His Alzheimer’s had reduced him to a state where he could barely communicate with his wife, but he could sit at the piano and play beautifully. My wife could play beautifully too, but her dementia has hit those key circuits needed to read and play music. I told you one size does not fit all. The circuits that are disrupted early are of the most recent events and over time that clock winds backward and more of the past is lost.
The key to happiness
I was at an FDA meeting on the approval of Rogaine for women with female pattern hair loss and I was explaining how the woman who had the best results in my study was not as happy with her result as one of my other patients with more modest results. There was a disconnect between the data and the satisfaction. The FDA official said that I had shown that the secret to happiness was low expectations. I can’t argue with that. I think that attitude helps in coping with dementia. You cope. By that I mean that you are constantly resetting your expectations of what the patient with dementia can provide in any interaction. Their performance will vary from day to day on the gradual downward path this disease follows. It has been my experience that mornings are the best time of day for visits, unless the patient has been up all night. Those neural circuits need their rejuvenation for peak performance. Unrested is best untested. It is called sundowning, but the name isn’t what’s important. Don’t expect cooperation from a cranky, tired dementia patient. A lot of normal folks are similar. By coping, I am trying to provide a way to reset the thinking of the family member or provider of care. You need to have flexibility. The trajectory of this disease is a downward slope, but it isn’t a smooth line. It’s a jagged line with fits and starts. Nothing that resembles recovery, but a better day can follow a poorer one. The dementia patient no longer has control over their world view or perspective. They are constantly having to deal with things that don’t make sense to them as they are coming at them absent any context that experience would have normally provided. They can’t change that, but you still can adjust your expectations and doing that will benefit your own mental health.
That brings me to the need for maintain a perspective that allows for your own mental health. My advice is to waste no time on all that has been lost. I know what has been lost is enormous. Let it go. It is perfectly fine to have fond memories and to share cherished memories with your dementia patient. If the memory is from far enough back, there may be accurate recall. Distant memories are lost more slowly than recent memories. Just don’t grieve over what you’ve lost. If you must, have a good cry or several and get over it. That is not helpful to you or your loved one. What lies ahead is the future for both of you. Your challenge is to make the most of what is in your near future. We live in the near future. It is time to find positives going forward. Does that sound impossible? I am not suggesting a Pollyanna type of slapping a happy face on sad events. I am pushing for a perspective that finds positives amid a lot of negatives.
Did you ever hear the story about a boy who was gleefully digging into a huge pile of horse manure? When asked why he was so happy, he said that with all that manure he just knew their had to be a pony in there somewhere. That’s the perspective we are going to need. Maybe an example from real life rather than from humor will help. I know that there will be days when nothing helps. Those days will pop up and you just have to let the negativity stay only a short while. You’ve other things to get on with. When I was between my first and second year of medical school, I joined the Army and was send to San Francisco to Letterman Army Institute of Research for a summer doing a research clerkship. I reported to the commander of that unit, Col. William Akers. He was from Kentucky. Yep, a Kentucky Colonel. He was a kind and gentle man. You may have an image of Army Colonels as hard bitten and intolerant sorts. That was not the case. He could be firm and exert his authority when it was needed, but he was a Southern Baptist and saw himself as a southern gentleman. Polite and self-assure. I mention him because he and his wife had four children, the last being a late in life child with Down’s syndrome. Alan was his name. Children born when the mother is past forty have a much higher risk of Down’s syndrome and that’s what happened. His wife was a nurse. I don’t know how much there combined medical backgrounds played into their attitude, but here’s what happened. When he told me of his son with Down’s, I express sympathy. Col. Akers was quick to correct me right there. He said that wasn’t the way to think about it. He and his wife saw Alan as a blessing. He said you never met a more loving child and sharing that love was an unanticipated blessing that made them grateful for Alan and all the challenges that came with his condition. They were able to see something that might crush others as something to cherish. That was a hard thing for me to digest. I was able to see him interact with Alan on several occasions and what he said was what I saw. A loving child and loving parents. This was a perspective I had not possessed but wished to acquire. It was clearly the moral high ground. It also seemed to be the practical high ground. I would not have understood that it was possible to make that kind of mental adjustment. But seeing is believing. Col. Akers was a dermatologist and I ended up spending that summer working in his lab on a project studying friction blisters. It would prove to be the beginning of my academic career in dermatology.
How to make this mental adjustment and see something positive to dementia overtaking a loved one. It starts with recognizing that this disease comes at the end of lifetime. It is something seen mostly in senior citizens. This is a time in life when introspection is more common. When each day is a blessing. One of them will be your last and if you made it thorough you dodged another bullet. You made that adjustment, didn’t you? Are you not grateful for each and every day? Now you need to find little things like that in those days when you are able to interact in some way with your loved one. There will come a point when you can’t have any meaningful interaction, just as there will come an end to your own timeline. Be grateful for each small positive. There is a period of time in the dementia patient’s condition where they will still know who you are. There will be memories you can share from distant events. There will be days where you may hear that they were glad to see you, even if they are fuzzy on who you are. You don’t need to quiz them to see what they do and do not know. That isn’t helpful information. If they are talking to you, just roll with it. I am certain that sometimes my wife doesn’t recognize me when I first start talking with her, but as we talk it become clear that she is reasonably interacting, and she is glad to see me.
So much of this is dependent on how far into the dementia development things have progressed. That is why you only cope. You reset based on what’s still possible. You cherish the positive visits. The dementia patient still has feelings, and you can elevate those sometimes by just being there and watching tv together. You might say that isn’t meaningful time spent. I would disagree. Did the two of you spend time watching tv together when dementia wasn’t a part of your life. Sure. When you recreate that experience now with dementia being an added factor, you can still conjure up a feeling of something normal happening in the midst of a sea of confusion. That person can experience that normalcy as a positive. Every now and then while watching tv with my wife, a commercial will come on with a familiar jingle and she will start to sing along. I’ll bet you didn’t think that brain was processing what was being watched. I’ll bet you thought that was just a blank stare. I’ll bet you would have missed the mental processing that Alan was doing despite his Down’s, too. That’s OK. That’s where we work on our mental processes. That’s where we reset our perspective. We are doing more that watching tv. We are present and that present makes all the difference. You know the line from Robert Frost’s poem. The one about two road diverged in the woods and I took the one less traveled and that made all the difference. Perspective is hard to maintain. But it makes all the difference. If you are there, you can make an inane comment on a tv commercial that just might summon up a cherished but forgotten memory for both of you. You’ll cherish that moment and then you’ll know what I was getting at. It made all the difference.