Business, the Enemy of Productive Work

Ok so last week's post was done while I was "talking" with Mom.  Truth is, she talks, I listen and say "uh-huh" every so often.  That is really what she wants.  She is an extrovert and my dad is an introvert.  I think the words build up in her and she has to get them out somewhere.  But I know multi-tasking is not effective.  I've even read the studies where they show that people who multi-task really don't do anything well.  So why did I do it?

I'm always amazed at how different aspects of my life frequently converge.  Of course I would say that is God trying to get my attention.  So there is a work and faith blog I subscribe to.  The theme this week has been we should work hard, yet we should remember to rest (like God did after creation) and as we see Jesus do in the gospels.  Yet being "busy" is not necessarily working hard.  I am reminded of this at work, if I will slow down enough to listen.  I have a resident who sees me walking quickly down the hall and he always says, "hurry, hurry, hurry".  Yet if I stop and really think, there is nothing on my to-do list that is more important than stopping to take time to talk with a resident, family member or staff member (sometimes, one in particular could talk to a wall about nothing).

No offense, but is the goal to post to this blog once a week really more important than really focusing on what my mom is saying, at least the first time around.  By time 2 or 3 I think I should get a pass to drift a little.  So what I ended up doing last week was achieving my goal to post once a week.  But the content of the post was meaningless.  And after I hung up from talking to my mom, I remembered that there will come a time when I will miss being able to talk to her, even if the same threads repeat  3 times every conversation.  I don't see it any more in assisted living, but I remember my days in the nursing home.  I know the day will come, unless something else happens, when mom won't talk any more.  And it's not like this is a new revelation for me.  I realized after my youngest graduated from high school that I had wasted so much of my children's young lives focusing on work, something that should be way down the priority list.  So again, another element of my life, yoga, is helping me to focus on the present.  Something I need desperately.

So I vow to stop trying to multi-task.  After all, if you think about it, what is really important in life is people and relationships.  I wish I had not had to waste almost 50 years to realize what was really important.  But then I don't want to waste any more of the present lamenting how I wasted my early years.  Work hard, but rest.  Focus on the present.  Be thankful for what is now.

Status Changes

The Caregiver Support Group met again this week.  There was no guest speaker, just each member talking about their specific situations.  Two of the long time members have seen drastic changes since the last time they attended.  One man, who hasn't been at the group for many months, has seen his wife go from always being active to now being bed or chair bound.  One of the ladies is really having a hard time physically handling her husband because he has declined greatly physically.  Although it was a very open discussion, I could see how important the group can be for Caregivers.  The gentleman talked about how the group helps him because he can see that things could be much worse.  The woman was able to talk with another woman member of the group and really just vent and get her feelings out.  It is different to be able to talk to someone who really understands what you are going through as opposed to friends who want to be sympathetic, but just can't relate.  They were sharing stories that were funny, one of those if you don't laugh you'll cry.  As the research shows, laughter is one of the best stress relievers.

I had invited one of the assisted living resident's daughters to attend.  She is not a medical person and wants to learn more about the disease.  She was not able to attend and I have to wonder if that is a good thing.  Is it better to know what is going to happen or would it be overwhelming?  I think this is one of those situations where God has everything under control.  I wonder about the same thing with my dad.  If they come to visit and he is able to go to a meeting, would it be helpful or would it be overwhelming?  Again, I guess the best approach is one day at a time.

Hope versus Reality, is it either or?

Something has happened to upset the apple cart.  When I get a call on my cell phone during the work week, I know something has happened.  I no longer try to figure out what has happened.  It doesn't really matter.  I'm guessing Dad became impatient.  I'm certainly not going to judge.  That is one thing I tell families looking at assisted living all the time.  Our staff can have loads of patience because they go home at the end of 8 hours and recharge and destress.  Unlike the caregiver at home who is on call 24 hours a day 7 days a week.  So I have to try to figure out what is the emotion that Mom is feeling.  How do I support her without taking sides and still support Dad who has a really tough job.

This week the statement was, "I'm not an imbecile".  So my guess is Dad has had to be directive with her about something, telling her what to do.  And of course we rehash "the stroke" and in the book I sent her, "My stroke of Insight", the writer returned to her previous profession as a doctor.  So of course Mom reasons, she will get everything back, she will be allowed to drive again and this is all temporary.  Then she goes off on a tangent about her job.  (We used to call it the 7 degrees of Lockhead, when the 7 degrees of Kevin Bacon was popular.  No matter what topic you brought up- elk hunting in Norway- she could make anything relate to her job at Lockheed).

Now I will admit, I had less patience this week myself.  I was trying to get everything done at work so I could leave early and we could go camping for the weekend.  So I probably rushed through.  In fact I remember cutting her off a couple time.  I'm not proud of it, but there it is.  I think her main thought was, she is not stupid after all she had a really good job, but I think she felt like Dad was treating her like she was not smart and had to tell her what to do.  My thought process was, she is not going to get better.  Dad will have to tell her what to do because her memory is failing.  How do I get her to be ok with Dad telling her what to do without her feeling bad about herself.  So I told her that the longer after the actual stroke, the slower (as in turtle pace) the recover, if any, would be.  That the deficits she has now don't make her less of a person, but she may have to accept them and learn to live with them and be happy with the way life is now.

On the way to our camping trip, I'm telling my husband about the call.  So he makes an off hand comment, about not wanting to lose hope.  That gets me started worrying that I have done the wrong thing.  That I should not be telling her things won't get better and taking away her hope, possibly causing her to become depressed.  What is the right thing to do anyway?  I am just thankful I am now doing yoga.  At least when I am concentrating on the present while I'm doing yoga, I'm not worrying about whether I'm doing the right thing or not.  Again, it give me better perspective for the Caregiver Support Group and the assisted living families.  There is no right or wrong.  In every situation, you just muddle through the best you can.  Are my only choices hope- you will recover, it will all be like it used to be knowing this is a disease of progressive decline.  Or risking hurting her feelings or causing depression by putting reality out there.  Once again, my best hope is to pray for guidance.  This disease is not for the faint hearted.

It's the Little Things You Miss

Nancy Reagan said it best when she coined the phrase "the Long Goodbye".  We've begun to realize the little things that are gone.  My brother has been single for 50 years and has now met someone he really cares about.  Both my parents prayed for him to find someone to share his life with and to bring him happiness.  He made the comment a few weeks ago that if he introduces his lady friend to my parents, she will never get to know the real Mom.  The person of grand debates and witty come backs is gone.  And there isn't a way to get her back.  What a loss to not be able to show the person you love, the person who helped make you who you are today.

I am feeling that loss this week too.  I've had a lot of stress with a traumatic relationship of my youngest son's.  My heart breaks for him.  Wanting to be a good mom, I want to be strong for him, to keep myself together so he can have that strong support.  I really want to talk to my mommy and get that support for myself.  But that is no longer an option for me as well.  She is able to grasp the big picture.  She asks me about 5 times during our weekly phone conversations how he is doing and how angry she is with his now ex-wife.  But I know a true conversation with support and understanding is just not possible.  I miss that and I grieve the loss of that possibility.

Some Bible teachers talk about how God gives us challenges and trials to bring us closer to Him.  I am thankful I am a believer.  I really don't know how people who don't have faith can cope.  I think back to several families from the assisted living and my nursing home days.  How they talked about how they got to the place they were caring for and doing the right thing for a person who had become a stranger.  The strength to do that just boggles my mind.  At the time, I nodded my head, understanding in the logic part of my brain.  But to feel what they must have felt brings me a whole new admiration for the tremendous people God has placed in my path.  Thank God for them.  Thank God for His strength when I have none.

Love and a Progressive Illness

This week my topic is not necessarily about dementia.  I am so thankful for the deep and long lasting love my parents have that prompts my dad to be a devoted caregiver.  Some times that is frustrating because I think they should move closer to me.  But I know he is committed to "taking care of our own".

This week I watched a couple in our bowling league.  In years past, the husband's mother would come to the bowling.  I could tell she had some kind of neurological disease.  She walked with a walker and had a tremor.  I don't know them well enough to know exactly what the illness is.  From my experience at the assisted living, I would guess maybe Huntington's disease.  She must have progressed because she no longer comes with them to bowling.  I look at the husband and I am guessing he has inherited the gene for whatever his mother has.  The wife is crazy competitive when it comes to bowling.  They played against our team this week.  They didn't do so well and the wife gets so angry when they don't do well.  In fact I had one person who used to be on their team say one of the reasons she quit the league bowling was because this gal is so crazy competitive.

So I heard the husband make the comment he was not doing well because he just didn't have the strength to throw the ball so it would hit right.  It was kind of a lightening bolt for me.  I got to thinking, here is a man with an illness that is going to make it almost impossible for him to continue to bowl well.  The wife is so extremely competitive.  At what point will she or will she ever, give up the competitiveness realizing he is just not going to be able to keep it up.  Certainly I'm sure he can continue to bowl and enjoy it and try to keep what muscle mass he has currently.  But it appears to be a progressive illness.  Do you suppose she realizes what kind of emotional damage her competitiveness can do to her husband?

On this day after Valentine's Day, I'm reminded that true love is so much more than the movies and greeting cards proclaim.  Here's to the couples, unknown out there, putting their love into action day after day.  That is true love.

Observation about Long Term Memory

We all know that one of hallmarks of dementia is the loss of short term memory, but the long term memory remains through out most of the disease.  I've seen it a hundred times.  The resident that begins to be agitated in the afternoon because they need to go get the kids from the bus stop.  The resident that wants to know who that old person in the window (mirror) is.  I've never really thought about it much, it's just one of those facts.

 But one of the repeated topics I hear from my mom every week is about how she can remember all kinds of things from her past.  (also so typical, "I don't have any trouble with my memory.  I remember things from my past as if they happened yesterday).  To hear her explain, it seems that these memories float to the top of her awareness unbidden.  It makes you wonder.  The mind is such a marvelous creation.  It is working all the time whether we know it or not.  From the to do list that starts in your head when you are trying to go to sleep, to the rhythm of your breathing, to your dreams where they say you are trying to work out problems in your sleep.  On and on the brain goes without our conscious thought.  So it makes me wonder.  This phenomenon of beginning to live in the past.  Is it the brain working over time?  Because the short term memory centers are damaged and the brain has to keep working, is that why these long term memories surface?

I'm sure I will never understand why.  The more we learn, the more we realize we don't know about this disease.  But I hope I can have some kind of take away to help not only my own family, but my assisted living residents.  Meet them where they are, that is the philosophy.  You just have to discover where that might be and try to join them.

Scary Situations Out There

I had a lady come tour last week.  She was referred to us by the sitter service she is currently using.  Her family pays for a sitter 4 hours a day.  She is in the mid stages of Alzheimer's probably about the same place as my mother, maybe a little further along.  We toured one of our rooms, went next door to talk to the resident in that room and when we walked by the empty room we had just toured less than 10 minutes before, it was new to her.

The director of the sitter service says the lady cries when the sitters leave every day because she is scared.  Her family lives out of town, like so many these days.  I'm sure 4 hours a day at $15 an hour is what the family can afford.  Yet I shudder to think of this lady home alone for 20 hours a day.  Like so many situations, the family doesn't want to upset her by talking about assisted living.  Unfortunately, the symptoms of dementia are such that there comes a time when the individual can no longer be the one to make those decisions.

I have one resident who stayed at home until she burned her house down and then had no where else to go.  Luckily, she was not killed in the fire.  A year or so ago, there was another fire in a town close by and the owner was not so lucky.  The news talked about how she was known to have Alzheimer's disease.  And these are just the situations I am aware of.  Our nurse at assisted living also works in the emergency room of the local hospital.  She sees a lot and tells me I just can't imagine what is out there in the community.

I know it's not easy to make an unpopular decision.  But is it preferable to leave someone home alone who is not really able to care for themselves and who is scared on top of it?  I can only imagine the situation is going to get worse.  Skilled nursing paid for by Medicaid is going to get more difficult to qualify for as their budget gets overwhelmed by the age tsunami.  People of this generation have mostly not purchased long term care insurance.  Too many have relied on social security only for their retirement. People of my generation have to keep working until we die because we can't afford to quit working.  I don't know the answer, but it is scary.