Open to Surprises

No matter how much experience I have and how much I learn, I am always amazed at what new things you can learn if only you are open to doing so.  During last week's phone conversation with Mom, I learned an interesting tidbit about my grandmother that I had never heard before.  Grandma and Grandpa had to move to be closer to my parents after Grandpa had his stroke.  Grandma wasn't able to handle everything on her own and my parents lived 8 hours away, too far to really be of help.  It was probably 5 years later that we realized Grandma had what was diagnosed then as vascular dementia.  Looking back now with hindsight, I should have seen the signs that at the time of Grandpa's stroke there were warning signs.  When she referred to stop lights as "electric stop and go's", my husband and I thought it was funny.  It was a actually a sign of things to come.

Grandpa went to a nursing home near Mom and Dad, but for a short while, Grandma lived in the house with them and my two brothers who were still at home going to college.  I was already married and out of the house, half the continent away.  It was pretty rough on my brothers.  My grandmother was pretty demanding and I understand got pretty ugly with them at times.  That was very unusual for a woman who attempted at all times to present the image of decorum in her younger days.

In my conversation with my own mother, she talked about how at one point my grandmother told her that she and my dad were at risk of not paying enough attention to my brothers.  I would have to agree.  My parents had their own business and it pretty much consumed their lives during both my and my brothers teenage years, pretty impressionable times.  It was an insight that surprised me and I was surprised my mother shared it with me actually.  My grandmother saw what was going on and tried to help my brothers back when she was still herself and untouched by the dementia.

I was hoping to show my brothers how the behavior that had been so difficult for them was symptoms of the dementia and that she really did care about them when she was still herself.  Imagine my surprise when one of my brothers responded still quite angry about what had happened.  It reminded me of my advice to my staff with our residents.  We never know what has happened in the past with our residents and their families and we can't make judgments.  We see the person as they are at the moment.  We don't have any of that past information.  I hope in time my brother will be able to heal and  see the behavior was the disease, not the person.  In the meantime, I hope to be able to hang on to these new revelations about people I thought I knew.  There is always something to learn if you are open to it.

The Battle of their Lives

I was at the grocery store yesterday and noticed an elderly man doing the grocery shopping.  Not so strange until I caught up with him several aisles later and saw that he had his wife with him.  She had a walker and was sitting in it.  He would push his cart and shop, then go back and get her and she would walk with him to the next section.  I saw what my dad will be in a few years.  Since my husband retired from the army and we live near an army post, I use the grocery store on post.  Everyone in it is either retired military or active duty.

This man was about my dad's age, I'm guessing, 80 something.  Possibly old enough to have been in World War II, certainly the right age to have been in the Korean War. He was slight built like my dad and about 5 foot 8.  Like my dad, a proud man who wanted to be independent.  Taking care of his wife at the same time as doing the chores that go along with life.  I think about men like this.  Men who have served their country, men who have risked their lives.  And at this stage of life, they want to continue to be the strong, independent men they have been all their lives and do it all.  Do they know this is the hardest battle they will fight?  Instead of being a partner, they are now the caregiver for their wife.  They have their own health problems and if not too bad, certainly are not in the state of health they once were.  Yet like my dad, I'm sure this man does not want his children "helping" either.  I'm a helper by nature.  Yet I'm having the greatest challenge in finding the balance.  How do I help, yet not take over, not take away the independence and decisions even when I think I know best.

I thank God for opportunities like yesterday to see the picture at a further perspective, not so close as it is with your own family.  I hope it will help me to make the best decisions on what I should do and what I should stay out of.

Lessons from Unusual Places

One of the things I love about my job is learning from elders.  I love to learn about history from those who lived it.  This week I learned a valuable lesson about the roles of child and parent.  I come from a long line of people who think our way is the only "right" way.  So you can imagine what happens when something comes up and we have different opinions on what should be done.  I have taken it upon myself to be the coordinator of what is going on with our parents.  I send out e-mails with my observations, my interpretation of what is going on and of course what I think needs to be done.  I don't usually appreciate it at the time, but one of my brothers is the voice of "take a step back".  Sometimes I think he errs on the side of not taking enough action.  But this week his view point was confirmed by one of my residents.  She is going to be moving to another facility because it is cheaper.  She is not happy about it.  She told me the other day, "when your children are young, you make the decisions for them.  When you get old, your children make decisions for you."  She went on to tell me "when your children are young they step on your feet, when they get older they step on your heart."  What a powerful reminder that not only are there more than one "right" way to do most things, but that sometimes the relationship is more important than the task at hand.

I of all people should know better.  I am the one always telling the staff that when our residents get upset, we need to remember how much they have lost, their homes, their health, their ability to make so many decisions.  I am so thankful for my brother's point of view, my resident confirming it, and the ability for me to learn from this situation.  When the time comes, I will step in and make decisions because I have Power of Attorney.  But until then, I need to step back and support my father just like I support the families of my residents.

Wisdom

Something about turning half a century old, you start looking at things in a different light.  I was attending Lenten services at church the other evening and it came to me in a flash, this is what is important in the grand scheme of things.  They say in youth there is knowledge but with age comes wisdom.  In my younger years, I was like everyone else, focused on the values and success as defined by the world.  As I get older, I realize those things that matter for eternity are more important.  The things that are really important are relationships.

I have always been so goal oriented and task focused.  It took me a long time as a young manager to realize that you can't motivate people to work and get the job done without having some kind of relationship with them.  So on a Saturday when I am trying to get through my chore and to do list, I get a call from my Mom.  She is telling me about the psychiatrist visit this week.  From what I pieced together from previous conversations, he was doing some testing to get a baseline of where she is at.  How ridiculous to say out loud that I really have to work on stopping the chores and tasks and focus on the conversation.  I am thankful she decided to call and talk.  I'm thankful she cares enough to want to talk.

I see so much with the families of my residents at the assisted living.  Lots of different situations that have developed over the years.  As I move through this process myself, I am quick to remind myself not to judge anyone.  I can never know what happened in the past.  One of my special residents is declining.  I can see her needing more and more help because of her memory loss.  She has a mixed bag with family.  Several very dedicated children, one missing in action, and one somewhere in the middle.  I am so lucky that I know what is coming so I can take time now.  I could choose to fixate on what is lost.  Unable to think of the name of cosmetics she sold for 8 years, using words out of context, oh well.  I will choose to be happy to spend the time listening while I can.  And I'm getting new stories I haven't heard along with the ones I've heard over and over.  I know even though I've given her a notebook, she won't write them down, so I need to.

 I just wish I could impress upon one of my brothers how important it is to take the time now.  But how to do that without pissing him off and jeopardizing the relationship.  I've had enough people pissed off at me for insisting on seeing the doctor about the memory loss as it is.  But I would sure hate for him, or anyone to look back and say, I wish I had taken more time.  Once again, my roles collide.  If I was dealing with a resident family, I would focus on supporting the family in whatever way they are able to contribute.  Families have enough to deal with, working, their families, the past influencing the present.  I feel strongly one of the most important things I can do is to encourage.  Guess I have my answer.

Ignorance can be Bliss

He knows.  My Dad knows Mom does have dementia.  He doesn't come out and say it.  We live 800 miles away, so we talk by phone.  I can't see his face, only hear what he is saying.  He tells me "she is going to talk to someone".  What does that mean?  Evidently he was trying to talk in code to tell me Mom has an appointment with the psychiatrist.  Dad says he thinks it is to establish a baseline.  A baseline, there it is, we all know it will decline.  I wonder if he speaks in code trying to spare her feelings about this disease that she watched her mother deal with as well as a several close friends?

I wonder if he knows that this will be the most difficult thing he will ever deal with?  More difficult than a poor farm boy working his way through college.  More difficult than raising a family.  More difficult than owning your own business and then having it fail.  Although he watched my grandmother, that was 20 years ago.  Maybe the memories have faded over the years.  Maybe it is a blessing if they have.  I want to tell him how difficult it will be so he will agree to move to where we are so I can be there to help.  But maybe, like with our lives when God only lets us see the present and not be overwhelmed by what will come in the future, maybe it is better for him to see only one day at a time.

I hope the psychiatrist visit is to start her on medication.  Was that the "right" decision, for me to push the issue so she can start medication and have a chance of a longer period of functioning?  I tell my brother, I almost wish she was still pissed at me.  When she was mad at me, she knew that I thought there was a problem with her memory and she was insulted.  Now she sees no problem when she doesn't remember which one of them had a doctor's visit the day before.  My only hope is that for once, maybe I will actually pray for wisdom from God and listen to it and not go off on what I think I know.  Which as time goes on seems to be less and less.  Yes I "know" lots about the disease, what happens to people.  But I am learning to have much more compassion and empathy for the families I talk to.  There are no easy or right answers when it comes to this illness and how to proceed.  But then isn't that what the Bible tells us, that God gives us trials in order for us to learn compassion and give encouragement to others?

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.