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.

Long Distance Caregiving

I read a sobering statistic in the new book I'm reading, "Learning to Speak Alzheimer's".  It said that 30% of caregivers die before the loved one they are caring for dies.  I read that the day after I had a conversation with my Dad about how he was having trouble with his blood pressure.  All I could think of was, "If something happens, will Mom be able to get help?  Can she call 911 or at least go to the neighbors to get help".  One of the topics I want to do with the Caregiver Support Group is long distance caregiving.  I might as well share what I learn as I try to come up with contingency plans for my own family.  It would be so much easier if my parents would just let me take over.  And so I join the same dilemma I see over and over again with families in assisted living.  Not so easy when you are in the middle of it as it is looking in from the outside.  Who knows, maybe I can come up with a resource that I can share to be of benefit to others long distance caregiving.  Stay tuned as I work out a process.

Family Dynamics

I have a family at the assisted living right now who are having a time.  Two children with very different personalities, different views on what needs to be done and no-one has been designated Power of Attorney. I try to help both of them and remain neutral in this situation, but I can't help but project myself and my brothers in the same future situation.  You have very capable and responsible adults with different views about what is important for quality of life, what the goals are for medical care, trying to take into consideration what would be their father's wishes and you can't help but filter those through your own personal beliefs.

I hadn't planned on taking a trip to Missouri this year.  But since I will still have 1 more week of vacation to use before the end of the year, I have decided I want to take that trip.  I have seen so many things in the last few months, that I want to try to be proactive as much as possible.  I'd better get my name on the bank accounts so bill paying could continue in the event of a crisis.  I am already named the Power of Attorney.  I'm having an elder law attorney speak at the Caregiver Support Group in September and I hope to find out what other practical things I need to do in advance to minimize problems later.

But what can you do in advance to prepare the relationship piece.  All 3 of us children are intelligent people.  Of course I believe I should have the last word since I am the Power of Attorney and I am a health care professional.  But my brothers are also very strong personalities with strong views and rightly so who may not agree that I would know best.   I also see my cousin who has lost both parents in the last two years.  Her only sibling is giving her a hard time as the executor of the estate.  So not only has she lost her parents, but her relationship with her brother is not good because of these differences of opinion about what should be done.  Is there a way to be sure our parents have the best quality of life and maintain relationships when there may be very different views on what quality of life means?  How do I help the assisted living family members when I don't have all the answers myself?  Why is it there are more questions as you get older instead of more answers?