It Sucks to Be Right

Well this week was the testing my Mom was to do for her memory.  Fortunately for me, she has forgotten that my report to the doctor was what initiated the testing. Since she had the stroke at Thanksgiving, she believes the testing is to see if there have been any effects from the stroke.  My Dad is the one who told me it was the original testing scheduled.  I called earlier this week and she was really grumpy, saying they had to go to doctor's appointments every day this week and it was too much.  In my follow up call this weekend, she slipped and said she still has one more appointment, the psychiatrist.  Now I know from working in assisted living, there are only two reasons to see a psychiatrist, symptoms of mental illness or symptoms of dementia.

Even though I am the one that has been telling everyone over and over I think she has dementia, the validation by the medical community means it is not just in my mind.  It was like a punch to the stomach.  I have a family member at the assisted living who is a doctor and his wife is with us because she has early dementia.  I see every week how he is in such denial.  Here I am doing the same thing with my mother.  It sure gives you empathy for others.  I think everyone hopes against hope it isn't dementia.  The knowledge it is dementia is another of the losses in this very long terminal illness.  At least now maybe she can start medication, a great reason to be going to the psychiatrist.  On to the next step.  

Seeing the Spark

This week my activity staff member has been out more than she has been to work.  That means, I get to fill in and facilitate the scheduled activities.  The activity program is more important to a resident's quality of life than the administrative tasks I can put off to another day.  The other day, I decided I was going to try a new game, the generic version of Jenga.  Most of the current residents have some mild dementia and so we need to keep the games pretty simple.  Yet they have pretty good manual dexterity, so it seemed like a good thing to try.  It was a success.  Now, they want to play it in the afternoons during some of the unstructured time.

But the first day we tried it, it so touched my heart to see how one of the resident's responded to the game.  This resident has been with us several years and came to us because of memory problems.  The disease has progressed and I see a time in the near future when she will have to move on to a higher level of care.  On this day, gathered with a group of other residents, I could see the spark of who she once was.  When people moved to assisted living because of memory problems, I don't usually get to see who they once were.  One of the hallmark symptoms of the disease is subtle personality changes.  That is one of the things I have seen in my own mother.  It's difficult to put your finger on, but she does not have the depth of personality she once had.  I now see why the disease is so devastating for families to deal with, it robs you of your loved one for such a long period of time.

But the other day, as the group was pulling out little blocks of wood, trying to keep the tower from falling, I could see the spark in this resident's eyes.  It reminded me of some pictures she has in her room where she is holding one of her grandchildren.  She wasn't able to take a piece that would keep the tower from falling.  Or maybe she did know the piece she was grabbing would make the tower fall.  The twinkle in her eyes as she was pulling the piece, with the other residents telling her that would make the tower fall, what a fun-loving vibrant person she must have been before the disease.  She laughed and laughed when the pieces fell, having such joy in that moment.

There is an excellent book out, "Creating Moments of Joy" by Jolene Brackey, that gives lots of ideas about how to have these "spark" moments.  As I looked back on that day and as I look back on the whole week, that one hour of this resident having her "spark" back, makes the whole week worthwhile.  I pray I am able to hold on to such moments with my mother as her disease progresses.

Benefit of Having Been a Mother

I have had a couple missed calls from my mom this week.  She will call my cell phone when I am at work and I can hear in the voice mail that she is really annoyed that I am not answering.  So she called Saturday, even though our set time for me to call is Sunday afternoon.  I am realizing that I need to treat this like I did when my children were young.  When the opportunity presents itself, I need to go ahead and take the time to talk with her.

 I am so thankful my boss is understanding.  Her mother is further down the process than mine. Recently, she had to mover her mother from assisted living to a skilled nursing facility.  So I asked permission from my boss to talk with my mom once in a while when she calls.  My boss knows I'm a workaholic, so she told me to go ahead and talk with my mom.

I am so bad about developing routines to get everything done, work, housework, cooking, etc.  That when something threatens to upset my routine, I have a hard time adjusting.  I have to remind myself that I will look back and wish for the days I could let the house get dusty, spending the time instead to talk with my mom.

I ran into the daughter of a resident we had years ago at the assisted living.  The resident had dementia and passed several years ago.  The daughter said the same thing.  She would give anything to be able to talk with her mom again.  So when I get calls in the middle of the work day, I have to take a deep breath and be thankful that I am still able to have a conversation with her.

Anti-psychiatrist bias

It is so frustrating as an administrator to deal with families who are so against getting advice and medication from psychiatrists.  I have a resident who came to assisted living with short term memory problems, poor hygiene, had been sundowning before she was hospitalized at a behavioral unit, was extremely agitated and paranoid.  After working with a psychiatrist for several months, her behavior significantly improved.  She still did not understand why she could not "go home", but seemed to accept that "for today" she was going to stay with us.  That was when the daughter was directing care.  Unfortunately, another family member has now taken the lead in directing care.  This family member is a physician himself and is one of those with the "God complex".  He has a bias against psychiatrists in general and with this psychiatrist because he confronted him about his inappropriate ways of dealing with this resident.  Since I have been called out to break up an argument between the two of them in the past and to deal with him "going off" on my staff members, the confrontation was necessary.  So time to find another doctor who will go along with the anti-psychiatry bias.

Not only did the new doctor take the resident off an anti-psychotic medication "cold turkey", but decided to get rid of the Aricept because "what did it matter".  It also angers me when a general practitioner labels someone with mid-stage dementia as having severe dementia.  If you had worked in the long term care industry as long as I have and seen the people whose disease had progressed to where they require complete care for all their needs, then you can tell me when it is severe dementia.  If someone has some short term memory loss and needs prompting to take care of hygiene, doesn't remember what day of the week it is and may call people of short term acquaintance by the wrong name-they do not have severe dementia.

So now, not only are we going to have to deal with behaviors that had been resolved with the medication, but the most frustrating aspect is to know the resident is upset by her paranoid delusions.  How unfair to subject someone to that emotional pain because of the family member's ego issues.  I've worked in and out of mental health for 20 years.  When will the stigma ever go away to where people can get the help they need and deserve?

healing

I'm reading a great book right now about how to flourish.  Face it, I'm in mid-life and I guess this is my response to examining my life.  It prompted me to think about my mom and her disease.  What if this disease is a means to  bring healing?  When I worked in hospice, we were taught that there are many aspects of healing, not just the body.  But when we had a patient who was dying, there could still be healing, in terms of relationships, spiritual healing, etc.

When I think about my mother, one of the things that comes to mind is that she has an inferiority complex.  For as long as I can remember, she has been trying to find significance.  When she was younger, it was through her looks.  She has always been a very attractive woman, blond, blue-eyed with a good figure.  And she has the typical extrovert personality  She looked like Shirley Jones when she was younger.  I remember as a teenager her many stories of all the boyfriends she had in high school.  And as with so many teens, all I could think of was how I was not going to live up to that reputation.  Since I was mousy brown-haired and just plain skinny as well as shy, I was pretty much the opposite of her.  Then as she got older, it was her intellect that was the source of her achievements and significance.  She went back to college in middle age and got her bachelors and master's degrees.  She taught my brothers and I how to have intellectual debates.  In fact, I'm sure that is how my brother got to be a championship debater, the practice we had at home.  And finally toward the end of her working years, her significance was found in her job.  And that is pretty much where it has stayed for the past 15 years since she retired.

But what if the stripping away of all the externals that happens with dementia can be a source of healing for her?  The Bible tells us we are to come to God as a little child.  Well that is certainly how this illness can progress.  What if instead of fighting against the illness, I can work through it to help her achieve that sense of acceptance and significance she has been searching for her whole life?  Not that I'm not still going to fight for medicine to slow the progression.  But I do believe God has a plan for everyone and in every life.  And if I can search for the good in this, then that is what I should do.  Now I just pray for the wisdom to know how to do it.

Confabulation

Confabulation- that's the term for making up stories to explain things that aren't remembered.  Sometimes it takes on a paranoid twist.  Can't find the checkbook?  It's because someone came in the house and took it.  Money being taken out of the bank account you don't remember?  Someone is stealing from you.  Other times it is very plausible, but still fiction.  That is one of the most heard comments I get from family members.  The doctor doesn't see the memory problems because during the 15 minutes they spend with the loved one, they talk very rational and the stories seem plausible.

I should so know better, but I have to learn the hard way.  I have to verify everything  Mom tells me.  One week, she was telling me she is going back for more therapy for the stroke in January.  But when I talk with Dad about it, he tells me no, it is the psychological testing.  It is just as well that she doesn't remember.  Before the stroke, she was very upset about the upcoming testing.  She informed me she was going to cheat.  Because the psychologists who devised the tests would never expect someone to cheat and couldn't possibly anticipate that.  But it didn't do any good to rebut the statement, so let it go.  So at least now, she isn't worried about the testing because she thinks it is therapy.  Then last week, she was telling me "news" about my brother's plans that was not correct.  I didn't get to talk with Dad during the last conversation, so I wasn't able to confirm the information with him.  Good thing I keep in contact with my brothers and he gave me the correct information.  

While I dread medical confirmation of what I know to be the diagnosis, I am so hopeful about getting medication started.  I know it doesn't work for everyone and it won't change the diagnosis or outcome.  But if we could just slow the disease progression and keep even what is there now for a little longer...  Then comes planning once there is an official diagnosis.  But to keep my sanity, deal with one step at a time.

Stimulating the Senses

We took the assisted living residents to go see Christmas lights the other evening.  I was reminded again how important it is to stimulate the senses for those who have dementia and I was reminded how such universal symbols like Christmas lights can connect people to the here and now.  One of our residents has dementia which has been progressing.  It won't be long and she will need to move from our setting to something specialized for individuals with dementia.  But the night we went to see the lights, she was so on target.  Something about seeing the lights, listening to Christmas music as we drove.  She talked up a storm and was so on track with everything she was saying.  She was so animated talking about past Christmas experiences and traditions and what she loved about Christmas.  When you talk about living in the moment, this was the pinnacle of that kind of moment.  It reminded me of my first love, which is doing and creating activities for residents that give them joy, purpose and meaning in that moment.  And if I can create that kind of joy, for just one resident for just one moment, that is well worth the other annoyances that come up.