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.

Where you focus is what you will find

Why is it I try to assess what Mom remembers and what she has forgotten every time I talk with her?  Is it because like every other family I've ever talked with, I'm hoping to find evidence that I'm wrong?  That all that is going on is normal aging?  This week, our family pets have seemed to be compiled into one.  Lest you think we were a family of animal hoarders and there were too many to remember, in my 50 years, there were 5 cats including the 2 current ones and 2 inherited from me, and 4 dogs, 2 of which lived for 20 years.  My brother noticed the same thing several weeks ago.  One of the cats they inherited from me when I had my first child became our childhood pet during the conversation with my brother.  Or it is that she is not able to remember their names?  She is having trouble with words, the aphasia they talk about with dementia.  She will use descriptions instead of the noun, I think because she can't find the word.  But why do I obsess about what is lost?  No matter if I figure out why, I will still not be able to change what is happening.

I find myself as the daughter, reminding myself to follow the advice of myself the professional.  If I focus on the negative, what she has lost, it won't change the disease.  I know deep down it is dementia.  And like every other family, I desperately hope I'm  wrong.  But if I focus on the negative, I will lose the positive.  And there is the whole reason for this blog in the first place.  No matter what I know after 30 years of professional experience in long term care and working with people with dementia, when it hits home and becomes personal, I am the same as every other family dealing with this illness.  Now I just need to remind myself to focus on the positive.  Focus on what is still there.  Write down what I want to remember for the future, for my kids future.  What you focus on it what you will find.  Let me focus on the positive.

Frustration with "Professional" resources

This fall I decided to change the meeting time of the support group to the evening so that people like me, working children, could attend.  Then I set out to find speakers to talk about local resources.  How disappointing to find that the Area Agency on Aging, local home health providers, pretty much any of the "professional" resources are unwilling to come speak at an evening meeting that is held after business hours.  How inconvenient that there may be people like me out there who work during the day and can't attend a meeting during business hours.  I find it hard to believe that in this day of the service economy, businesses that provide a service are unwilling to go outside the box.

I guess what that means for me and the Caregiver Support group is that it is all the more important for me to know about resources to pass on to others.  On the other hand, it reminds me in my role as an assisted living administrator that I need to be sure families have access to me and any other resources in caring for their loved ones during "off" hours as well as business hours.  As I tell other people, sometimes you learn from examples of what not to do as much as those that you want to emulate.