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.

Self Determination

Well I was wrong.  My contact with the doctor has not been forgotten or forgiven.  In our conversation this weekend, we were talking about my brother and his diabetes.  My mother made a comment about how only the person with the disease should seek help for the problem because they are the only ones that can do anything about it.  Not a very subtly veiled comment about my intrusion into her affairs.

At the same time, I'm reading a book written by the guru of dementia care, Dr. William Thomas.  The book is called "Lessons from Hannah".  An excellent book by the way.  It is in story format, but speaks very well about how we as society need to be looking at elder care in a very different way.  I admit, I am guilty of thinking I know best about everything.  I totally understand what my mother is referring to and she should determine her own care.  Except that the symptoms of the illness we are dealing with in this case make it very difficult for the individual to make a very accurate self assessment.  Is my desire for the disease to be kept at bay as long as possible, more important than her right to make her own decisions, even if they can't be very well informed decisions?  So much gray area and so little black and white.  At the very least, this is experience is making me a much better care giver for the residents of the assisted living facility in my care.

Vascular Dementia

Well my plan to not talk to my parents last week because they were mad at me for contacting the doctor didn't work.  I got a call on Saturday from my dad.  My mom had a stroke on Thursday and she was discharged from the hospital on Saturday.  Turns out there was no lasting damage from the stroke.  While she was at the hospital, they did an MRI to check for any lack of blood flow to the brain.  From my dad's report, there was an area on the right hemisphere that showed damage.  Her stroke symptoms showed up on her left side, which makes sense.  When she left the hospital, she was able to move her legs, arms and her mouth wasn't drooping like it was when they went to the hospital.  So the first thing I think of is that her dementia symptoms are likely vascular related.

Then I think the same thing I've heard so many families say, maybe if it's vascular dementia and her blood pressure is under control and blood thinning medication started, it won't continue to progress.  They have not been back to the primary care doctor yet, so I don't know yet what she is thinking.  The good news is that with this major event happening, my transgression of contacting the doctor about my concerns has been forgotten, at least for now.  It has worked out that I can continue my talking points of concern about a medical condition that can be treated.  In the light of the stroke, that approach has been easier to sell than an all out criticism of mom's memory which is how she took it originally.

So now begins the Google search on all things vascular dementia.  So far what I've found are mixed results.  Some information says the symptoms can slow when high blood pressure is treated and clots prevented.  Other information says the prognosis is not good.  I guess it is just one more step forward.