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.

Strategic Withdrawl

It seems I am learning in person how difficult it is for families to address memory problems with their loved one.  As I said last post, I wrote a letter to my mother's doctor giving her my observations about mom's memory loss.  The doctor has recommended my mother get an MRI.  It is scheduled for next week.  In the meantime, I am now public enemy #1.  I still believe getting her medical help as soon as possible is the right decision.  I obviously didn't go about it the best way.

I should have known, for someone who has prided herself on her intellect all her life and whose self concept is so tied to her intelligence, my "accusations" are a direct assault on her person.  She told me she believes I have "thrown down the gauntlet" and she is going to prove me wrong.  How thankful I would be to be wrong.  I would gladly eat crow for the rest of my life to be wrong about this.  I am so thankful we should have some kind of answer in the next 2 weeks.

But for now, in order to save my own sanity, I have got to withdraw and just not talk with either my mom or dad.  I know this is my own bed I've made and I should have to lie in it.  This is one time I am so very thankful to be living far away.  It is possible for me to take the chicken way out and withdraw for a couple weeks.  But right now, there is just too much stress and since we do live far away, this is a stress I can eliminate, if temporarily.  At work, I have a couple empty beds at the assisted living facility.  Every business is in business to make money and in this economy, no-one's job is secure.  Then my husband's job is for the Department of Defense.  With the talk of federal budget cuts, his job is no more secure than anyone else's.

This solution  may be no better than how I started this process, but to save my own sanity, I have to withdraw and pray for the strength to deal with it and wisdom to know best to deal with it.  Probably should have done that to begin with.

To Know or Not to Know

Well now I've done it.  After returning home from seeing my parents,  I wrote to my Mom's doctor about my observations of her memory loss.  I haven't talked with my Mom yet, but my brother gave me a head's up that the doctor called her and talked with her about testing.  My purpose in writing to the doctor was to try to get her the standard dementia medication.  I know it doesn't cure and it is effective in about 50% of patients, but I would still like her to have the possibility.

I have watched one of my residents decline cognitively over the past year and a half.  Her family has been adamant about no medication.  And now she is getting close to the point I will have to discharge her to a skilled nursing facility.  Physically she is in great shape, but her cognition has really declined over a year and a half.  She came to assisted living in pretty good shape.  I contrast that with the husband of one of my support group members.  They have been dealing with something for 5 years and got the dementia diagnosis about 4 years ago.  He had several trials of different medication, but they did find a combination that didn't have too many side effects.  He has been at a plateau for about a year now and they seem to be having a pretty positive quality of life for the last several years.  I know not everyone responds to the medication, but if there is a chance it could work for my Mom and slow the progression, I would like to try.

Of course now the dilemma I should have had but blew right past is, is it fair to put my Mom in a position where she has confirmation of her fears with the actual diagnosis?  Is the benefit of the possibility of slowing the progression of the disease more important than the negative of knowing you have a non-curable, progressive disease?  Not such easy answers where you are facing it yourself as it is to watch other families and think you know what they should do.

I gave an in-service to my staff not long ago about dementia.  We talked about the small percentage of people who have a genetic predisposition.  There was discussion about whether you would want to know or not.  I'm looking at 2 generations ahead of me with the symptoms, if not clinical diagnosis.  My answer that day with my staff was, I was not sure I would want to know.  Now I've put my mother in a position where she may have to face the confirmation of a diagnosis.  Now we wait for the testing and results.  I think at this point my only solution is to pray; for strength for all of us, for peace with my decision, and for forgiveness from my parents for bringing this to a head.

Planning ahead with Legal matters

The last couple weeks have been very intense.  I went back to Missouri for a working vacation.  I recently had an elder law attorney speak at the Caregiver Support Group.  He talked about the legal paperwork you should be sure to have in place.  So I scanned copies of my parents Advanced Directive, Power of Attorneys, Wills, all forms of insurance, and something with the account numbers on all their other assets and bills.  We went to the bank and put my name on the checking account, only on the signature card, not as a joint owner.  That was one of the pieces of advice the Elder Law attorney gave and the staff member at the bank agreed.  I also made sure a friend of the family and a neighbor have my contact information.  It seems to be the most I can do living 1000 miles away.  I was researching the topic for my last Caregiver Support Group and the phrase that "most caregiving begins with an emergency call in the night", really stuck with me.  There is so much you can't anticipate.  This way, at least I will have somewhat of a head start.

My boss has had a rough couple weeks too.  She had to move her mother from assisted living to a skilled nursing facility because she has declined to where she needs more care.  Doesn't really put you in the mood for the holidays.  We make quite a pair, my boss and I.  We both have loved caring for seniors with dementia during our long term care careers.  Now we both find ourselves dealing with it on a personal basis. As with the job, she is several steps ahead of me in the process. I still love my job and would not change.  Maybe this will give me another perspective so I can do a better job in my job and my job help me to do a better job with family caregiving.  One more box checked off, on to the next.