THE  DEVELOPMENT OF DEMENTIA OVER 17 YEARS, LATE (2019-2024), PART 3

 

            This period was from mid-2017 to late 2022.  She recovered from her fall; there were several days in the hospital and a few weeks in Rehabilitation.  Then it was natural to move directly into the Memory Care in the same facility as the rehab.  This choice of facility that I decided upon, was based on recommendations of others about the facility and the staff; with particularly strong recommendations for the physician.  We were still in mid-stage Alzheimer’s and she remained that way for some time.

 

            Her physician, Dr. Fehlauer, met with her individually and later with me.  He was very specific about the medications he wanted to use for her depression and anxiety and to manage some of the over-reactivity, including anger.  He was also very clear that he wanted her to “keep her personality,” regardless of any medication.  The thought still brings some tears to me; she had such a powerful, positive, extraverted personality that she should continue to be her.  There was some commonality of medications to what the Psychiatrist had previously prescribed.  Now, though, the physician would be getting more definitive feedback about her functioning to monitor and adjust the medications.  I have known throughout this time span that the medications were effectively managed and maintained the best of “her personality.”

 

            This was a permanent separation with strong emotional feelings for us both, having been happily married for more than 50 years.  I became a near-resident of this facility, eating many lunches and dinners there, usually both on the same day.  Still we both accepted the circumstances thrust upon us.  It was only much later that I re-processed all of this and wondered if I could have kept her at home longer.  However, I decided that it was best for her.  I often stayed after dinner until she was in bed and then went home. Eventually staff, friends, and our children began telling me that I was overdoing my involvement, but it was hard to change.

 

            We had the great good fortune to be part of a small group that was independent and close to each other.  There were four caregivers and their four loved ones with dementia.  We always ate dinner together in a private room in the facility.  We usually held an ice cream event after dinner with the intent of keeping weight on our loved ones.  This provided a powerful support for all of us.  And we had various parties that brought in family members and friends for dinner; we celebrated birthdays and holidays, even Spring and other seasons. After a year or so, death of two of those with dementia reduced our size, but even then we maintained a solid sub-group.

 

During the first two years, we were able to get out often, even going to plays and music events.  The only movie attempted was “Sully” where the intense visual and audio of the movie overwhelmed her and we left mid-way.  We had many trips out to restaurants, usually a nearby one where the staff understood the issues associated with the Alzheimer’s patients, including her.  She struggled with ordering, made a mess eating, and sometimes tried to leave with a fork or spoon.  Yet she was such a positive social force with those in our group and with the servers.  She always had great conversations with others.

 

            Psychological testing by the staff was attempted on multiple occasions and was always resisted so that her Alzheimer’s was never evaluated by any test.  She strongly disliked the testing, as discussed previously. Early measures to trick her into being tested consistently failed; she said: “I know what you’re doing.” Her social sensitivity was well tuned.

 

            Various medical issues for Beverly presented themselves.  Among those was a fissure in the lower bowel, causing considerable pain.  This was an issue for some time prior to moving into this facility.  When we finally found the right specialist, this required minor surgery; at first the procedure seemed to be unsuccessful, but patience and excellent nursing resulted in a cure.  Comfort is always an issue for medical treatment in the late years of Alzheimer’s.  And the risk of a severe reaction to anesthesia was limited for this procedure by use of a minimal level.

 

Her vision increasingly became an issue. Given that she was blind in her left eye, it was upsetting that her right eye was developing age-related macular degeneration, a condition where the central part of the retina is detaching, eventually causing bleeding (“wet” macular degeneration).  Treatment involved ongoing pictures of the retina and a shot to control and even improve the functioning.  This was tolerated for several years, until finally, in late 2021, she could no longer adequately cooperate with the instructions from medical staff at the Ophthalmology Clinic.

 

And, of course, some of the usual medical issues, including UTI’s, appeared from time to time.

 

            Still the most serious was a strange fall early one morning, Fall 2019.  The facility video shows her walking down a main hall with no one around, then suddenly falling straight backwards and hitting the back of her head violently on the floor.  There was some question about whether this was caused by a seizure; it was clear that there was a seizure after she was on the floor.  She was taken to the ER, where the X Ray showed bleeding in more than one area of the brain.  The ER physician asked if I would approve her having surgery; I declined an answer immediately, as the issue was complicated.  Later, after helpful input, I knew that drilling a hole to relieve pressure would be the extent of surgery approved.  This fall resulted in a few days in the hospital and a few weeks in a separate rehabilitation facility.  And her irritability and anger showed strongly during those weeks in rehabilitation and into the weeks early in her return to the memory facility.  It was never clear whether this was a result of harm to her brain from the fall, from a major change in her environment, or from the consequences of having a seizure.  After she returned to our regular facility, she slowly improved.  I think this required Dr. Fehlauer’s careful monitoring and metering of medication to return her to calmer functioning.

 

            Finally in early 2020 I started writing this blog; it was stimulated in late 2019 by my psychological therapist finally saying that I should take the advice given to Hemingway to commit to writing at least one sentence every day.  Now we are nearly to around 45 blog entries.  My commitment then and now is to be honest about my feelings and reactions and let others know how a slow learner managed to learn something that is helpful to others.

 

            COVID in 2020 at first seemed to be a major assault on my functioning in every way.  I could not see Beverly at all for several months, though I was more fortunate than most, as a wonderful person there would get me on my cell phone on Facetime to talk with her.  Eventually the facility established a way, weather allowing, to see each other outside on a deck through a clear plexiglass barrier and talk by cell phone.  Other arrangements have since improved.  But we are still required to wear masks in the building, a rule I agree with.  Nonetheless Beverly has had COVID twice; the first time August,. 2021 and recently August, 2022.  Both times were very mild, never getting beyond coughing and/or a sore throat.  The reason for mild is, in my view, that she had received both immunizations before the first time and the two boosters before the second time.  I have had the full immunization shots and have not had COVID.

 

            Since the backward fall, she continued to have seizures.  And since that fall, she has been on a strong anti-seizure medication.  The full dose of that medication makes her semi-conscious too much of the time, so I have negotiated with her physician several times to cut it back a little.  The argument that he agreed to was that it was better for her to have something of a life while still alive and take a chance on another seizure. There was one good spell of several months where she had no seizures on the lower dose.  But lately there have been seizures too soon after reducing the dose and it appears that she will remain on the full debilitating dose.

 

            And, between the seizures and a hard-to-treat UTI, she became so weak that she has been wheel-chair bound since late 2021.  That certainly minimizes the chance of a serious fall.  And, shortly after first being in a wheelchair, she developed a blood clot that moved into her lung.  That was quickly diagnosed and it was life threatening.  Dr. Fehlauer treated it effecitvely, for which I am thankful.

 

            Music has always been central to her life.  She continued to play a piano or keyboard well into her time in this facility.  She always went to entertainment events in the facility and sang along with nearly every performer.  As her functioning has continued to decline, she now rarely sings and is unable to play.  She still engages with the music as she visibly moves in rhythm.

 

For a long time in these years, she could still communicate effectively.  There was a slow decline, so that now, in Fall 2022, there is no longer much verbal communication, as she only utters one word, typically “Yeah.”  On the other hand, there is more comprehension than is immediately obvious, as the “Yeah” or nonverbal responses sometimes clearly connect to what has just been said to her.  When some subjects come up, she becomes more alert and responsive, and even the “Yeah” response definitely connects.  Clearly she continues to try to engage in interaction with others and maintains her pleasant (often happy), friendly, positive attitude.  I think that this is remarkable given the anti=seizure drug.

 

            She has lost quite a bit of weight in the last year, around 18 pounds.  She continues to eat and drink, though both require direct and continuing help.  Her food is pureed and someone must feed her and hold a drink for her.  Rigidity has developed in arms and legs; it requires a level of force to place her foot on the foot rest of the wheelchair.  And there is no control of bladder or bowel. These are among the many difficulties of late-stage Alzheimer’s.  The most likely direct causes of death related to the dementia:  a) Loss of swallowing and/or no longer eating.  b)  Infection, usually pneumonia or UTI.  c) Falls/accidents.

 

            The family and close friends (including people from our church) are very supportive to us both.  They are in regular contact with me and frequent visits to her.  Erik is nearby and I see him nearly every day and he visits Beverly, too.  Lori calls often and comes to visit Beverly many times a year.  Keith and Becky also maintain contact, though COVID created a risk.  Her longtime work friend Carol has come, too.  I am so thankful to have a “psychological family” for us both.  As I have written in early blogs, we developed strong connections with patients and caregivers connected to the facility.  And the staff there have been remarkably engaged with us both; I have written about some of these in earlier blogs.  The dementia process is like childrearing in that we need a community for the successful functioning of the dementia person and their caregivers.

 

            The impact on me, the caregiver, continues.  Primarily there is a higher level of stress as difficult things happen to her.  There is continuing loneliness and mild depression mixed with grief for losing her.  I continue to work at “having a life.”  Hiking is great; exercise is a relief and  being in nature has a powerful effect.  Writing a blog stimulates the rational side of the brain and helps process the emotions of this all.  And music does more than anything else, as I play the keyboard and sing hours every day, and with some success, thanks to a great teacher.  Maybe the show will get “on the road” this Fall.