Monday, September 24, 2012

Anger of the caregiver.

I was at a Gideon's meeting tonight and one of our members had a prayer request for himself.  He said his wife had Alzheimer's and that he had issues being angry with her over her disease and the situations it presents.  He was frustrated with his situation and with himself and Linda and I understood.

I talked with him after our meeting and told him I had Dementia also and my wife had many of the same issues.  I also recommended the local Alzheimer's Support group.  He was not interested.  Why, because he wants to do this on his own!

That's not abnormal for many men and women who are of a "Type A" personality.  When something happens that we cannot fix, we immediately get angry and make even more attempts to fix the issue, each time getting more frustrated.  The "Type A" personality will never give up but will get more and more frustrated until he breaks!

Help, professional help, is the issue but it is seldom accepted.  Now I write from experience since I and my wife are "Type A" personality individuals and neither of us likes to ask for help.  But, we did attend an Alzheimer's Association support group and it did give us some insight.  But we did not take advantage of the help in depth.  But realize, this is a brutal disease that impacts both the sufferer and the caregiver!  And that impact is negative, immediate, and everlasting!  There is no cure for the disease or the mental anguish for the caregiver!

So, outside, professional, help is recommended not only by those who are educated in this area but by me!  I had a neurologist asked me how I was dealing with my disease.  I told her I thought I was doing well and she immediately said; "No your not!"  It shocked me.  Not her abruptness but her correctness.  I had been fooling myself, smiling through the tough times, keeping a stiff upper lip, toughing it out, what ever phrase you use to cover up your fear, desperation, and depression!

I know what people want to hear, I know the "proper" responses, and I can put forth a facade of being normal.  But, inside, I know I am not  the way I used to be and the changes terrify me!  The physical weakness, lack of energy,loss of motor skills, and lack of stability in walking.  The mental issues of loss of my short term memory, inability to select the correct word, fear, getting lost, and the overwhelming feeling of doom.  Yes, Dementia, in any name, is a devastating diagnosis.

But look at the disease from the care giver's point of view.  The one they were planning on traveling with in retirement, the one who they walk on the beach with, the one the caregiver has spent his or her life with is now gone or at least going.  Yes, leaving!  Oh yes, the sufferer is still there, physically, but not mentally!  And it is the mental part of our loved one that we interact with and love.  So that loss is the most traumatic part for the caregiver.

So, again, outside professional help is not only needed, it is required if the caregiver is going to survive the ordeal mentally and possibly physically!  Stress can induce strokes or heart attacks for those who are in a weakened state!

Another issue is providing a break for the caregiver!  There are memory support units that provide daily or weekly respite care and I recommend that for every caregiver.  I know my wife is refreshed by outings out without me or worry about me.

So, tonight's interface with another family suffering the pain of Alzheimer's.   Presently dealing with their condition unsuccessfully!  But maybe, our interface will encourage them to seek assistance.  They still have a long journey ahead of them.

Friday, September 21, 2012


Today, I woke up dizzy!  OK, there's a joke in there somewhere, but I mean I was dizzy.  My head felt numb and I was very unsteady on my feet.  Today was the day we had planned to go to the Commissary so I was determined to carry out our day's plans.

I took a shower and was glad our builder, D.R.Horton, redid out master bath shower at cost complete with three grip bars!  I held on with one hand and washed with the other.  It worked and we headed for the Commissary.

Riding in the car was difficult in the beginning.  No, not because I am the world's worst passenger.  But because the effect of things speeding towards me was overwhelming!   That sensation subsided after a while.  In the Commissary, I did fairly well until checkout!  Getting the items out of the cart and onto the checkout conveyor was difficult.  The up and down movement made me dizzy, or more dizzy!

But, we made it home and after unloading the groceries, I was able to sit down and rest and I felt somewhat better.  We took a nap in the afternoon and now I feel better.

I consider myself a good boy today!  I did not even consider driving today!  I knew I was not in any shape to drive.

Again, like the incident where I did not know I had clothes on, dizzy is a new issue.  I don't know if it is related to my LBD or an inner ear issue.  I did not have any allergy issues, no congestion, no coughing, no, sneezing, so I lean towards LBD.  And, since LBD does effect different parts of the brain, it makes sense to me.  Oh well, it's another thing to put on the question list for the neurologist appointment in December.

As have said before, things are progressing and starting to effect me more.  I am more emotional and more tired.  It is to be expected and I am handling it OK.  But, I also know I am really in a fight to the finish.

Wednesday, September 19, 2012

Do I have clothes on?!

OK, here is a new and disturbing issue.  Yesterday, I was out at a Church meeting and I wore long pants and a nice shirt.  I even has socks and shoes on!  Believe me, here in Florida, that is "Formal" wear!   When I came home, I got undressed and sat on the couch drinking a cup of coffee and watching television.  My son called and said he was coming over to set up our new printer.  I took the call and then I got up from the couch and told my wife; "I'd better get my pants on if we are going to have company."  The problem was, I had my shorts and a t-shirt on!

I actually felt as if I was sitting in my undershorts and I was convinced of it even as my wife told me I had my shorts on.  Sanding up, I had to look and feel my shorts before I was convinced.  This is the first time I have had this issue and it unnerved me to say the least!   Now, after I saw I was wearing shorts, I was OK and I felt fully dressed.  But, just the same, I was upset that this issue had surfaced.

So, next visit with the neurologist, I will have a new issue to discuss.  I hope he does not reply; "I was expecting that."

Thursday, September 13, 2012

Advice II

We are independent beings.  When we become old enough to get our driver's license we are standing at the DMV with our money in hand.  Independence at last!!!  Do you remember that wonderful feeling?  So now, skip ahead a few decades, you know something is wrong.  You mind is slower, you can't remember things, your motor skills are not what they were, so you go to your doctor.

Tests, questions, maybe a PET scan, maybe an EEG, and then the verdict;  You have a Dementia type disease.  What do you do now?  What happens to your independence?  All of us who are on the journey called LBD know exactly what I am saying.  A rush of thought go through your mind and one of the first was probably how long can I drive?!  Yes, the thought of life expectancy was there, would I need to be institutionalized, how long before I get bad, but my independence was foremost in my mind.

I still drive, but I am much more careful, defensive, deliberate, than I was.  I never drive when I am tired and I seldom drive at night.  And, I have started to let my wife drive more ofter.  She is a very good driver and I trust her without question.  But she will tell you I am a terrible passenger!!  Just the same, a slow transition resulting in me no longer driving is the right thing.

I was very fortunate because my Neurologist diagnosed my disease very early!  That has permitted us to work out the future before it happened.  That also permitted the memory support drugs, Raxadyne and Namenda to work their magic. Now I know they are beginning to reach the end of their effectiveness, but we are ready.  I know friends who either had a very quick onset of Dementia or denied the warning signs and symptoms and delayed seeking treatment until it was too late for the drugs to help.

So, this edition of advice is simple;
First;  Go to your doctor as soon as you feel the symptoms occurring!!  This is the most important thing you can do for yourself!!!

Second;  Make a plan with your spouse, your children, for the progression of the disease.

Third;  Begin a process that will gradually lead to YOU no longer driving!  My plan gives my wife total control over my driving.  I even have this in my Living Will and my Medical documents.  She knows me best, especially after 40 years of marriage, so she knows when I am unable to drive.

Fourth;  For the caretaker, take your new passenger out, even when there is no where to go.  This will enhance his feeling of being independent as he looses that independence.

These things have worked for us.  But, as the old commercial used to say; "I am not a doctor, and I don't play one on TV." so discuss this with your doctor when you do what I recommended in step one!

You and you spouse are the strongest part of your support group.  Yes, a great GP and a understanding Neurologist is important, but they don't see you 24/7.  Your spouse does so listen to that person!  They won't steer you wrong.

Saturday, September 8, 2012

My first outing with my walker

Today, my wife, my son's Sister in Law, and myself took a very informative walking tour of the historic district of Pensacola.  Since we moved to Florida, we have been trying to acclimate and my wife thought this was a good opportunity to learn more about Pensacola's history.  The tour was two hours long and conducted by a History Professor from a local college with 50 years teaching experience.  He was marvelously entertaining and very informed.  It was naturally hot our and very humid, but this is East LA!

But, I am sure you really want to know how I did with my wheeled walker.  I believe the correct name for my device is rotalator.  In any case, it and I did very well.  I purchased a model with eight inch wheels and it handled the bumps, cracks, and sidewalk debris without a hitch.  But the best part was the seat!!  Other people in the tour, those not needing the assistance of a device like mine, were envious.  At every stop on the tour, I had an instant, comfortable seat, and I used it!  This kept me from getting too tired.

One of my issues is stamina.  I get tired quickly when I am out walking or doing something.  My cane helps me keep stable, but a long walk, or in this case, tour, makes me tired.  Without a place to sit down, I am in trouble.  So, I  normally avoid this type of event.  Now with the walker, I will be able to go more places.

In the past, I would have been embarrassed to use such a device, but now, I use what works.  The heck with appearances, and I recommend one for anyone with issues like mine.  You have a choice;  You can either stay home, fall down, or use a device that works for you!  And like I said, I was the envy of 50 people.  So, I would say my first outing was a success!

Friday, September 7, 2012

Leg pain is back in spades!!

When I was first diagnosed, like so many of you, my neurologist and my GP both thought I had Parkinson's Disease.  But I had memory issues that predated the problems with my stiffness and stability issues,  So she went deeper and after extensive testing, determined I had LBD.  My leg and arm stiffness was an issue and I was prescribed Requip which I have terrible issues with and then Sinemet.  I took the Sinemet for about two years until the nausea became too much for me to deal with.  I told my neurologist I would rather put up with the stiffness than the nausea.  So, for about two years, I have been off and Parkinson's meds concentrating only on my memory issues and tolerating the stiffness.

Well, I believe, no I know the time has come to restart the Parkinson's medicines.  The pain in my legs. lower back, and arms, has become constant and is increasing in intensity.  Also, my instability has increased.  Tomorrow we plan to attend a History walk of Pensacola.  It is scheduled to last two hours and for the first time, I am taking my wheeled walker.  So, I am going to ask my neurologist for a recommendation on a medicine to reduce this pain and rigidity.

So again, things progress.


I was sitting here on the couch having my usual issues with "Sundowning".  Evenings are tough for me and probably most with LBD.  I realize the LBD Association, WEB MD and other sites have information about our disease.  They have symptoms, treatments, testing, and eve life expectancy, but no advice!  So I thought I might write about some of the things I have learned over the journey of LBD.

Since LBD is unpredictable, no one has exactly the same problems.  And since it is an up and down disease, one minute you are pretty good and the next minute you are terrible, problems change from day to day.  Just the same, there are a few things I think will help everyone.

First, if you can, retire or quit work as soon as possible!!  The stress of work is detrimental to those of us with LBD.  I had a high stress management position that required me to be on call 24/7!  I literally had no down time for the 20 years in civil service.  When I was diagnosed, I was determined to continue working and my boss was a wonderful support!  But, when I could not recognize long time friends and work mates, and when I could not remember HOW to send travel orders through the computer system, it was time to retire.  Leaving that high stress job was the best thing I could have done.  Now I can nap when I need to, sleep in if I feel like it, and have no demands on me.  I have also found out that with your neurologists help, Social Security disability is easy.  So, I recommend you retire or quit working as soon as possible.  It will definitely extend your good days.

Second;  My neurologist was tenacious!  She did her research, got a second opinion, and asked colleagues.  She prescribed Razadyne and Namenda early on in my disease.  I have read on the LBD Association site and on WEB MD that early use of these drugs delays the severe onset of dementia and that LBD patients have a better response to these drugs than Alzheimer's patients.  Now, I am not a doctor and I can only relate what worked for me and what I read.  So, do your own research and talk to your doctors!  But, while my memory is getting worse and my short term memory is almost non existent, according to my present neurologist, I have been diagnosed with LBD for over four years!  I would say that Razadyne and Namenda are my friends.

Third;  Learn your physical and mental limitations and let everyone know about them!   Friends, family, most people, think you are faking it!  You look normal, you are not drooling on your shirt or peeing in your pants, so you must be normal.  Well, I'm not.  I get tired easily, am not as strong as I was, cannot judge space, make bad financial decisions, and can't remember my address or phone number!  I cannot go all day, or paint a house, or even do yard work.  As a matter of fact, my long term GP in Virginia Beach told me, NO YARD WORK!  I try to follow that.  But, yo must set your own limits and then enforce them.  Don't let the crowd drive you.  The results of overdoing it can be dramatic.  I know, I wrote about my experience taking down my storm shutters.  I nearly passed out!  And when I came into the house, I was breathing very hard, my heart was pounding, I was sweating profusely, and I was weak.  That all lasted for about an hour!  I did not follow my own advice.

Forth;  Have some fun!  We are going through a traumatic experience.  We have a degenerative neurological disease that is not curable and leads to death!  Sounds terrible, but it is the truth.  Now, the late George Carlin said;  "Doctors have discovered that saliva causes cancer!  However, only when taken in small doses over a long period of time."  So lighten up and have some fun.  Do those things you never thought you would.  Last year m wife and I went parasailing!!  It was great!

Last;  This should be first!  Take care of your caregiver.  Probably your wife or husband are taking care of you.  They know everything about you and are taking on most or all of what you used to do.  On top of all of those responsibilities,
they also manage you meds, I have 15 prescriptions at the present, help you move around, maybe do all or most of the driving, and have very little personal time.  So, while you can, give you caregiver a break.  Arrange some personal time for them.  If you need constant care, have a friend come over and stay with you.  Also, most nursing homes have respite care day and longer stays.  Trust me, we owe everything to our caregivers.  Show them some respect!

These are a few that came to mind right now, I hope more will come to memory later.  There is one final point.  There are a number of outstanding blogs about LBD.  Most are from the caregivers and they are excellent.  The bloisphere permits us to have a large support group with varied experiences.  I encourage you to use this asset and to let the authors know you are there.  Share your experiences through comments.  I don't know where Linda and I would be without this support group.

Well, I am exhausted, so I will follow my own advice and go to bed.  More tomorrow.  Thanks for being there.

Monday, September 3, 2012

Giving up!

Those of you who fight the daily fight with LBD know what I am about to say.  The rest of you are cringing in your boots for fear of what I am going to say.

Everyday, those of us afflicted with LBD choose to fight the fight.  To get out of bed, eat, deal with our digestive systems, walk, interact with other people, and do the things that those without LBD do.  We have to make this conscience choice because there comes a time that it is easier to say NO!  That's right, NO I won't do it anymore.

I suffer from this problem from time to time.  Not because I have progressed so far down the LBD road, but because I sometime fail to see the reason to keep up the fight.  Sometimes it seems futile.  I can't do what I once could.   I don't remember what I once knew.  I don't want to do the things I once did.

The other issue is family, friends, others, don't seem to understand the frustration I face, the effort I expend, to look "normal" to them, to function in their world.  Everyone wants everything to be as it was but I know it can't and never will be.  Many times they get frustrated at me because I am not interested in the things of life.  So, I try to put on a brave face and go about doing things I am not interested in. It is futility.

So, a constant dance goes on in the life of the LBD sufferer and the LBD caregivers and loved ones.  Sometimes one of us gets frustrated and feelings get bruised, other times the facade holds.  It is a constant dance.

One thing I have learned that helps me it to have a mental mission to keep mentally and physically for.  No, I am not just talking military mission but things we plan or desire to do that will require me to be in good spirits.  For instance, my favorite ship, the USS Caron (DD 970) is having a reunion in Washington D.C. in October 2013.  I will be there if I have to take a Greyhound bus!!  That event keeps me trying to maintain or even get stronger, more mobile, and mentally more connected!  I want to see my shipmates one more time.

So, when you LBD sufferer seems out of sort, uninterested in life, or seems to just want to give up, give him some room and some time to gain control of these emotions.  If you can, help you LBD sufferer find that special mission to focus on.  However, pushing him or her will only exacerbate the problem and may cause a blow up that both of you will regret.  It's just the way it is!