New to the site?


If you're new to this blog and want some context for it, read this post from the day I announced my Alzheimer's disease and this post about the day I announced I had lost it. For more info, visit my website with my autobiography and all blog entries in chronological order for easier reading to catch up. There's also a sermon on the spiritual lessons I've learned through this journey through my damaged mind.

Saturday, May 18, 2013

They're Still In There

Washington DC

Lee Ann Gerleman is a nurse who’s worked for many years in long-term Alzheimer’s care units and has been making frequent comments on this blog.  I’ve collected and (heavily) edited some of them here. 

Through the months, I’ve written about my curiosity about consciousness in moderate stage Alzheimer’s. (For the definitions of the various stages, see http://www.alz.org/alzheimers_disease_stages_of_alzheimers.asp.) Lee Ann has responded:    

People with dementia are still just regular people. Their reality, however, seems spread out over time. If you know the patient for a long period of time, you can get the full story. It just seems as if things have gaps between them. And the patients are just as loving and needing of love as anyone else. They soak up love like a sponge. For someone like me caring for patients with dementia, a locked unit in a nursing home is a love place. You can hug more, love more, and it is gratefully reciprocated. So this disease is just a continuing part of the journey.

What so many people don't realize is that even quite demented patients are just the same as the rest of us.  They may be forgetful, but inside their consciousness, down where it really counts, they still have their inner conversations going, just like we all do. 

Lee Ann sent me an email with her thoughts on the subjective experience from within Alzheimer’s.

Some people talk about how it would be such suffering to be lying in bed, incontinent and so on, about how we "might as well just shoot 'em.”  They’re equating a different way of interacting as being a bad way.  But if patients are comfortable and no longer embarrassed by incontinence, they sleep and remember good times and bad.  Maybe their memories are not as deep as ours, but the love and memories are still there.  Like the patient whose great granddaughter comes and walks her around outside.  She doesn't know who that little person is, but she knows she loves that little girl.  That is true happiness, being deeply in the moment with a little girl who is taking very good care of you.  All the little friend wants you to do is smile and be happy.

She continues in commenting upon my postWhy Not Suicide?.”

If we indeed "go backwards" in our cognition, then being the two-year-old child in our minds wouldn't be any worse than being a two-year-old 83 years ago.  There’s wonder in everything around us.  And someone with the cognition of a two-year-old would enjoy things just as much as anyone.  With a two-year-old, of course, there’s joy in watching the child grow and mature.  With an 83-year-old “child,” it’s heartbreaking for family and friends to see their loved one going down and down.  But that 83-year-old lives in the present, and there are things to see and do.  Watching a 3-year-old picking a tomato is no different in awesomeness from watching an 83-year-old pick a tomato with the same amazement.  Someone with AD is just going the wrong way on the highway of life.  But for them, it’s still the same highway.  They experience love, caring, amazement, seeing wonderful things, happiness, just as anyone does.

And then there are the truly amazing events that leave you scratching your head:

One little woman used to steal my nurses notes—all of the little scribblings that a nurse would make to remember things.  She would take my scribblings over to the grand piano, sit down with a flourish and play for hours from my nurses notes as if they were sheets of music.  She never missed a note, played probably four or five different sonatas—Bach, Beethoven, and others.  If I tried to take my papers back, she would get all upset, so I'd let her keep them as long as she played.  When she was done, she’d bring the papers back to me and put them on my cart with a quiet little thank you.

And other surprises are just humorous:

One woman was discussing with me how wonderful her husband, Tom, had been for 65 years, never a mean word, always loving; she looked like a bride, thinking of her loved one.  So ten minutes later, her husband came in to visit and I hoped she was still on the same wonderful bride-journey, so I said, "Tell this man about your wonderful life with Tom.”  She looked at me in shock, and said, "OMG I married him?”  So much for giving him a pat on the back.

Care givers are sometimes understandably bitter about all the patient’s friends disappearing as the disease worsens, abandoning patient and caregiver to the disease.  Lee Ann had a different take.

Alzheimer’s is, after all, “The Long Goodbye.”  When patients initially go into a special care unit, their families are usually very supportive, and come for all of the fun activities, etc.  But about half the families then begin to come less and less, and I think it’s because that as the patient begins to move away more, the family adapts by moving away also.  They are adapting to the changes in the relationship.  Which is good for them.  Family members naturally begin to withdraw somewhat, as they spend more time out in the world.  It’s hard to explain.  They don't love the patient any less, but they learn to change with the times and go out into the world more.

And other times, Lee Ann seems to feel deeply privileged just to be present to the moment.

I sometimes find it very touching to be sitting with an AD patient and their adult child.  Of course, the son or daughter is upset that they aren't being remembered.  But then I ask the patient about her children.  It is amazing to watch the patient glow, talking about her child, the school work, the play, Christmas when he was five, the smiling and obvious love.  The adult children were focused on losing Mom, but when they can see their Mother's obvious love for them, it does help, I think.

In the end, of course, we don’t know the subjective experience of the person with moderate to severe Alzheimer’s.  But, at least for Lee Ann Gerleman, the potential for rich relationship remains.

23 comments:

  1. Lovely post!
    Lee Ann Gerleman is a true credit to her profession; it is wonderful to hear from someone who obviously has reverence for what she does and the people she helps.

    ReplyDelete
  2. Anonymous5/18/2013

    What wonderful insight! It certainly has made me think of the possibilities of reaching someone with AD. I think it will be helpful to both someone with AD as well as family members and friends. A family member who feels lost to the spouse, parent or loved should try asking that person about their family. Nothing to be lost, but maybe wonderful gains.

    ReplyDelete
  3. This is one of the most moving things I've read! Thank you for sharing this. I write in my book, "Inside the Dementia Epidemic: A Daughter's Memoir" about how my mother was still "here" through the last stages of dementia, but Lee Ann does an even better job! I will share this widely.

    ReplyDelete
  4. Absolutely wonderful - thank you for sharing Lee Ann's thoughts with us. I can quite confidently say that right up until the end, my mom was still "in there"... Even as things declined very rapidly, we saw signs of her - the outstanding sense of humor, desire for independence, love of babies, and yes, stubbornness. It upsets me to hear people say they don't go to visit loved ones because they "won't know anyway..." It's all about MOMENTS of JOY. They may be forgotten quickly, but ALZ teaches us to live in the present, and those single moments of pure, organic joy may be fleeting, but what a gift... to our loved ones and to us.

    ReplyDelete
    Replies
    1. Moments of Joy!! Indeed. So many of us have trouble letting go of the future and of the past but the present is where our demented relatives and friends live, so they can sometimes offer us a path into the present. I, too, am grateful that Lee Ann allowed me to bring her comments into a post.

      Delete
    2. I can attest to the moments of joy, even though they can be infrequent. The nurses at my Mom's rest home always told me that when my Dad made his daily visit and approached Mom she would beam at him. Just that...no talking, but a definite acknowledgement of his presence. It kept him coming back every day for over 8 years. What a testament to their love of over 60 years.

      I myself was not so faithful in my visits but I went once a week and we mostly just sat with each other. I read someplace to make a photo album for your loved one and write the names of the people or the events in large print beside the picture. We spent many hours looking over that. It filled up the empty, quiet time.

      Mom was basically quiet for her last years, and what she did say didn't make much sense, but the last time I saw her (before she was hospitalized and comatose,) I said "I love you Mom." just as I was leaving and she looked right in my eyes and said "I love you too." What a shock and what a gift. It was as if she knew it was her last chance...

      Delete
    3. Your father visited your mother every day for 8 years and received "only" her beaming at him, an acknowledgement of his presence. Most of us, I suspect, find it difficult to understand that story at all. Was he a saint? Was he suffering some guilt complex? Was he resentful? and so on. We can't believe that your father came back every day simply out of love, not as something he "should" do but as something he wanted to do. That kind of relationship has a hard time making sense in our frenzied culture. We have so much to learn about the beauty of relationship. Perhaps Alzheimer's can teach us a little bit.
      I have not experienced these miracles personally yet, but I am converted to believe in them by your comment and all the others on this blog.

      Delete
    4. Dad definitely visited everyday because he longed to be with her. After her death he went to the cemetery with a lawn chair and sat there most days. I only wish that he had someone that faithful to him when his time came. Again, I went to see him at the home once a week but so many others didn't come at all. I feel so guilty that I wasn't there more for him.

      Delete
    5. This obviously isn't the place for counseling or therapy, and my words may be very much out of place in your situation, but I hope we can recognize that your dad wanted to be there because of the depth of his relationship with his wife. I doubt he was going there out of a sense of "should" or guilt. His visits flowed quite spontaneously out of their decades of intimate relationship.
      For me, it's important not to make of something beautiful like that a sense of guilt (and then resentment) within the rest of us who have different relationships with our loved ones. From my point of view there is certainly a "should" in children visiting parents or friends visiting friends, but that "should," in my opinion, should not require that we sacrifice our lives. Your dad wasn't "sacrificing" himself, but if I am tied to my mother out of the "should" then that is an inappropriate sacrifice. I certainly hope that my children don't feel guilty if they can't visit me much.
      Again, this may have more to do with me than you, so use it or not as is best for you.

      Delete
  5. This is my first time here. My mother has Alzheimer's and as i have spent time with her I realized that she is truly living "in the moment." I really appreciated this post because I have had many similar experiences. I too am a nurse (retired, now budding theologian) and have worked with many patients with dementia over the years. I always thought it was easier for me to just accept those patients where they are--easier than it was for family members. Now that my mother is there, I have come to appreciate those glimpses of her childhood in her face. I find that she must have been quite mischievous! I have come to believe that it is a gift to me in ways I never would have imagined. It never crossed my mind that I would see my mother in the innocence of her childhood.

    ReplyDelete
    Replies
    1. In "The Idiot" Dostoevsky refers to dementia as "the second childhood." I'm not sure whether that was a common term used in the 19th century or whether he coined it, but it is a good metaphor.

      Delete
  6. Hi, David! Thank you for this wonderful entry about Lee Ann's perspectives. For a few years, my husband and I had Power of Attorney for four adults: Gary's aunt and uncle, and both of our moms. Two of the four had Alzheimers, Gary's mom amd aunt. My mom had dementia, and died a month shy of her 99th birthday and her last words were it's a happy, happy day, spoken with a luminescent smile. Gary's uncle had no cognitive impairment at all, and died at 96. Of the four, I think Gary's uncle was the unhappiest. He never failed to tell Gary, in Swedish, "it's shit to be old."

    When we were able to stay present, in the moment, we had such joy and gratitude for being with them. We accrued moments like a string of pearls. With acceptance, we knew that nothing we did...our walks, flowers, birds, music...would be remembered. But neither does a 2 year old remember, and that doesn't stop us from taking him or her to a zoo or a carnival.

    Other angels in our midst get this, too. We have a group of motorcycle guys in our town, and they take people from the memory care unit on rides in their sidecars. One of our favorite pictures is of June, grinning from ear to ear...her helmet still on, having just returned from a jaunt around the hood. A day later she didn't recognize herself in the picture. Because we had accepted her disease, we knew that what mattered was the ride, not the memory.

    Thank heavens there are people like the bikers and like your friend Lee Ann. There is a special place in heaven for them.

    ReplyDelete
    Replies
    1. It's interesting, isn't it, that the unhappiest of the four you cared for was one of those without dementia.
      It is hard for us in this culture to stay in the moment, especially when we realize that the demented one isn't going to remember any of it. (But, of course, all of us die, at which time our memories will be gone, and we don't stop working for good experiences just because we'll eventually die.
      I love the image of June in the motorcycle helmet.

      Delete
  7. Anonymous5/21/2013

    I wonder if you could, from time to time, set forth a list of things to watch out for when one is getting Alzheimers or something that would be a litte more helpful for those of us getting on in age and starting to see the decline of normal aging.

    I'm concerned about some things about myself lately. I'm forgetting recent events and sometimes I am radically forgetting them. For instance, my wife gives me some of my medications every day. I have classic ADHD and had it for years, thus I was a below average student in law school although I scoreed in the 94th percentile on the law school exam. Paying attention for very long has always been a problem for me, particularly in regards to verbal rather than written communication. May earlier grades on the SAT and so forth were as high as my sister's, but she graduated summa cum something while I was in the lower half of my class.I used to think this was laziness, everyone said it was, but over time I came to realize that it wasn't like that at all. When I get excited about a project I have traditionally done it well and have sometims stayed up for days fixing my computer as long ago as the 90s when DOS made computers break mkore often then they do now. ]

    So I have always battled with some degree of what I guess some would call a disability, although if am disabled, I never knew it until I was diagnosed by someone in that field who is nationally recognized and has written both academically and for public sonsumption.

    But what I am experiencing now is totally different that what I've experienced in the past. I have anxiety and depression and even went so far as to go off my medications for about ten days to see if my mnedications might be responsible for these latest subtle but noticeable problems with my short term memory. The medications were not at fault, in fact the issue seems to be less of a problem there so I am wondering if I shold get checked.

    What I am experiencing is a total loss of memory of short term events. Forgetting the password for a computer that I just set up - this was never a problem for me. Forgetting five minutes later that my wife gave me my medicine. This is ther most noticeable thing. The short term forgetting.

    Other than that, I have noticed a greatly diminished abilty in my vision. I won['t drive at night anymore. Night vision problems were always an issue for me, but my vison has radically deteriorated. \

    I started to write you several times to tell you about issues but I am forgetting much of what I wanted to ask you.

    But how does one get tested, and how does one avoid feeling embarrassed if one learns that what is happening is normal aging. I too suffer from the abiolity to find words, but my vocabulary is good and I don't suppose it is noticeable to anyone but me, and so far it doesn't bother me. The memory problems I worry most about are those invvolving forgetting a conversation that I had five minutes ago, forgetting that my wife gave me my medicine and then taking it again.

    These are very subtle things but they bother me greatly but no one seems to notice and I am inclined to let Dr. Tincture of Time tell me if I have a problem. Because if this is serious, what could be done to help it at this point. I feel very conflicted about what to do.

    ReplyDelete
    Replies
    1. There are a number of things I'd like to respond to in your comment. First, in terms of what to watch for. Increasing difficulty in remembering names and faces with age is absolutely normal. For 20 years, my father wanted to be reassured "by the doctor" every time I visited that his increasing difficulties with names and faces was not Alzheimer's disease; it even has its own name, "benign senescent forgetfulness." I am not at all an expert on this, but I would be a little more concerned about the things you described as "radical forgetting." The inability to find words can come with aging, but is also a sign of dementia.
      There are several good reasons for getting tested. The first is that finding out whether your symptoms are normal or not can calm a lot of uncertainty regardless of the result. The test I mention in the following post, the Montreal Cognitive Assessment, should be administered to find out if there is cognitive impairment or even dementia. It's relatively straightforward and usually administered by a physician. Although there is some difficulty in diagnosing early cognitive impairment (see the next post "Do I Really Have Alzheimer's"), the test is often very useful. If you're really concerned have your primary care doctor refer you to a neurologist.
      There is one very practical reason for getting tested early: there are other diseases that can cause cognitive impairment and dementia, some of which can be treated: rare vitamin deficiencies, alcoholism, tumors, and so on should be discovered as early as possible.
      In reference to other parts of your comment:
      There are interactions between ADHD, depression, and cognitive impairment that have to be sorted out. Depression, for instance, can cause dementia and vice versa.
      I doubt that your vision problems have anything to do with your memory problems.
      Bottom line: I would get checked out.

      Delete
  8. This is amazing; I've learned so much from the comments in this post (and the other posts too). It strikes me how much suffering there can be in the anticipation of something which may not involve as much suffering in the actuality of it. I commented before re children with intellectual disabilities -- how people fear the possibility of having "a child like that" and don't know how they could do it. But if it happens ... they do it. They adapt, they cope, they struggle, and often the fear is far greater than the reality. I don't want to deny the actual suffering in some very, very hard situations -- but as a parent of 2 special needs kids, I would never have thought I could do it and I would have been terrified if I'd known in advance. The reality has some struggle and sorrow, but no terror or hopelessness.

    Thanks again for your great blog. I just found your book @ the library too so look fwd to it.

    ReplyDelete
    Replies
    1. Yes, one of the important things I'm (re-)learning through all these comments is how worrying about all the possibilities can cause much pain. Dealing with the present is often much easier. This is not to discount the pain and suffering of this and any other disease, but we imagine far more than actually happens. Very frequently, what seems terrifying prospectively can be very different in the moment.

      Delete
  9. Anonymous7/01/2013

    Thank you so much. My Mother has mid stage dementia and as her daughter I do find myself focusing on losing her rather than savouring the moments when she is 'lucid' and loves me s her daughter. Compound this by my father has been diagnosed with MCI and I just don't know where to turn. Brother has POA and Medical POA and I live with them so I wonder if you might point me in a direction as far as my rights in the medical system ( taking care of them and making decisions ) et. al.
    Thank you for your bravery in posting this site. I will revisit it often!

    ReplyDelete
    Replies
    1. A couple of things in response:
      1) If you don't want to have too purposively visit the site, you can have a copy of each post emailed to you as it is posted. Just fill in the box that's labeled "Follow by Email."
      2) As to your legal rights, you need to obtain a "medical power of attorney" (you probably need a legal power of attorney, too, to allow you to manage other affairs. The procedure for obtain these powers of attorney differs from state to state, so you'll need to check with your state's regulations. You can probably find them by googling "(state) power of attorney." In most places, I think, all you need to do is have your mother (or whomever) sign a form (best to have it witnessed but you probably won't have to get it notarized)) that gives you the right to make all her medical decisions when she is no longer capable of making them. It will be more difficult if she is no longer competent to sign such a document. Assuming that POA stands for power of attorney, then you just follow that procedure.

      Delete
  10. Anonymous7/01/2013

    Oh boy I'm in a tough spot with my brother having POA and Med POA and he is out of state. Living here I think I am the 'adult' that is responsible for them and have no rights at this time as Mom is not competent to sign and Dad is not willing . . . oh my. And I don't mind revisiting the site!

    ReplyDelete
    Replies
    1. Sounds to me like a recipe for serious potential conflict. It seems to me that the person who is most actively involved with the care should have the medical (if not the legal power of attorney). It seems like time for a serious conversation with your brother about whether he wants to give your mom and dad the care or give you the medical power of attorney. If he is willing, I don't think there will be any problem of his transferring the POA to you.

      Delete
    2. Anonymous7/02/2013

      Yes David (may I call you David?) it already is conflict. Brother won't transfer POA and I am most actively involved. Actually Dad is most actively involved but is not capable of making competent decisions. I have contacted the social worker to no avail and Dad will not say I am a caregiver. Just reread your post re walking Mom around and the love that is shown . . Yes!!! But Dad is showing mood swing signs and honestly this is above my head. I at least should have some Medical Power of Attorney. Can this be shared MPOA?

      Delete
    3. I am by no means an expert in contested powers of attorney (POAs)or medical POAs and am no lawyer, so my advice is worth about as much as you're paying for it. Nevertheless, the options I see are:
      1) From what you've said, I doubt that your brother is going to give up the legal POA without a major struggle. Assuming that the POA is legitimate, you're probably not going to successfully contest it and certainly not without legal help. You'd probably want to figure out whether the differences between you are different enough to want to forcefully pursue wresting it from him. Just as a warning, you might want to read Karen's long comment in my recent blog "Self."
      2) You might have better luck with the medical POA in that he won't be giving up any legal control of anything else, and, since you're the primary caregiver, it makes more sense for you to have it than him. So, one possibility would be to tell him you're not going to contest the legal POA but would like the medical POA. And if that doesn't work, you might sit down with him and see if you have roughly the same point of view.
      Whatever you decide to do, do it quickly before the issue arises.
      Good luck.
      David

      Delete

If you would like to be notified whenever someone comments on your comment, click on "Subscribe by Email" underneath your comment.