The stage of Denial

My Dad sent all 3 of us an e-mail update on how Mom is doing.  Over the last month, he has been talking about wanting to get an MRI to see if there have been any changes.  I have hung back, trying to offer support but letting him take the direction he feels is needed.  In his e-mail he shares that the doctor was quite blunt that there was no need to do an MRI.  He has never come out and told me that they have been given a diagnosis of dementia.  But he has made a point of showing me what medication they have prescribed, which is the standard Aricept and Namenda I know is only used for dementia.  So I decided I would contact Mom's primary care doctor, who is fabulous, to find out what diagnosis was actually made.

My only regret when my parents move here is that they will no longer have their doctor.  This is the second time she has called me herself.  I don't usually get phone calls from the actual doctor even at work.  Her phone call was very helpful in seeing what is going on.  It seems that on several fronts, the primary care doc, the neurologist and the psychiatrist have all specified dementia to both my Mom and Dad.  I brought home a caregiver book for male caregivers that I had at work for the Caregiver Support Group.  On almost the first page it talked about how it is very normal for people to experience denial.

Then I did the V-8 slap to the forehead.  How could I of all people, 8 years experience in mental health and 20 in long term care, not realize there would be denial.  And I'm reminded that not only do my brothers and I have Mom and her symptoms of dementia to deal with, but Dad is going through great loss.  It just reminds me that if I can forget something as basic as the stages of grief, how much more do families who do not have my experience get overwhelmed when dealing with this illness and its effects on everyone involved.  It reminds me once again, that we are all learning every day.  Don't assume anything.  Learn from your mistakes and keep pressing on.

Staying in the Moment versus Planning Ahead

I started taking Yoga about 6 months ago.  I started because my husband wanted to do something that would compliment his running.  I was at first an unwilling participant.  As the classes went on, I realized that the focus on the pose and breath really was extremely helpful for stress management.  I have always been a worrier.  And while I know it contributes to my high blood pressure and stress, it is a really difficult habit for me to break.  So I am now a convert to yoga.  One of the mantras of yoga is "living in the moment".  That focus does so much for me to keep me from worrying, the most unproductive use of my time.

So when I look at how this impacts my life, I have to wonder about the balance between living in the moment but the need to plan ahead.  I've said before, I better than anyone know what the future holds.  I have found myself on several occasions, purposely pushing out the thoughts about Mom's eventual decline.  I look at my residents or the loved ones of members of the support group and I know we will be there at some point.  But I also know thinking about it only depresses me and does no good.  Yet I am somewhat impatient with my dad for what I see as not planning ahead.  With them 800 miles away, I can't be any help.  He is handling things just fine now.  I worry (still a work in progress for me) that his 24 hour 7 day a week caregiving will negatively impact his own health.  I know one of my goals for this calendar year is to renovate 2 of our bathrooms.  One needs to be done because the tub enclosure is falling apart.  The other I want to do in the lower level with handicapped accessibility to prepare for my parents to come live with us.  On this particular topic, I have found the balance.

But this balance shows up in other ways too.  I suggested to my dad that we use their time share condo in a location close to where mom grew up, so we could enjoy it while she is still able.  My youngest son is in the Air Force and stationed a long way away.  Do we use our limited vacation time to see him or take what might be a last opportunity for Mom?  Even longer down the road, do we go ahead and spend money on a vacation to enjoy the moment now or try to put more in our 401K's because all the experts say no one saves enough.  How do you find the balance?

It seems I have been struggling with balance for most of my adult life.  Trying to balance having a family and working.  I don't think I did very well.  Then working into having a balance of work and home with the kids grown and gone.  Balancing living in the moment and enjoying what we will not have in the future as the illness progresses, versus the need to work and save for our own retirement.  Once again, I am astounded by how the definition of wisdom keeps slapping me in the face as I get older.  I really thought I had all the answers as a 20 something, go to college, have a great career, climb the ladder, have the perfect marriage and family.  And the older I get the less I realize I know.  I am thankful that I know God can use my own experience so I can then help others.  If I did not have the faith that there is a greater purpose in all of this I believe I would be very depressed indeed.

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.