Monday, February 27, 2012

Greetings from the caregiver (Linda)!

Don and I were discussing his Lewy Body this morning and connecting with any issues and feelings that we had on our minds.
As we talked I mentioned something that Don wants me to try to explain to you all who read this Blog.

One of the difficulties with Lewy Body is the secretiveness that occurs.  The sufferer feels unable to connect with people that do not have the disease and often keeps to themselves how the disease is affecting them on the inside.

It is almost impossible to bridge the gap and understand their feelings and how our reactions to their feelings affect them.  They feel alienated and it becomes a vicious circle of alienation, more secretive, more paranoia, more alienation, etc.

An analogy is how society helps/hinders a person with a physical disease or disability versus how society helps/hinders a person with a mental disease such as Lewy Body.

If a person were in a wheel chair and needed to make a call and the nearest phone was up 2 flights of stairs the person in the wheel chair would not be expected to be able to make that call without assistance.  Either an elevator would be installed, or phones available on the first floor, or an attendant would be available for assistance.  Society understands that their part in the scenario would be to provide a way for the disabled person to function as fully as possible in an abled society.

What society in general doesn't understand with a person with Lewy Body or other brain disorders is that the sufferer IS in a wheel chair - it just isn't a physical wheel chair.  It is a wheel-chair that surrounds the mind and creates the same barriers as the physical wheel-chair does to the physically disabled person.
A person with Lewy Body loses the ability to sequence the steps of decision making, gets overwhelmed with the process of seeking help and then tries to hide from people the fact that they can't initiate the process of finding help for a problem they are having.
The phone that they would need to use might as well be up 2 flights of stairs because they can't understand the process of how to ask for help.
The difference between the way society acts is this:
Of the physically disabled they would think:  you are in a wheel chair I know you can't get up the steps let me help.
Of the mentally disabled: there's a phone not three feet away why don't you get off your butt and use it?

The physically disabled know how to use the phone they just can't get to it.
The mentally disabled can get to the phone they just don't know how to use it.

When we joined a support group for Alzheimer's sufferers we thought it would be a way for Don to get to know other sufferers and to share stories of how they were coping.  That never happened.  It was a frustrating time for Don and we finally quit going.
We couldn't figure out why it didn't work until our talk this morning.
Early and mid stage Alzheimers and Lewy Body dementia patients don't talk about how they feel inside.  They don't open up about how they fear confrontation, how mentioning the budget sends panic their way, how they feel alone and afraid.  They instead talk about what the facilitators bring up, or how they bemoan the fact that they can't drive anymore.  They talk about safe, victim status issues that the facilitators and society seem to understand.
The issues of feeling helpless to initiate a decision-making process, the feeling of paranoia that people are plotting against them, the feeling of having to be secretive because people aren't interested or can't possibly understand how they feel inside.  They don't or can't tell others of all the emotional and mental turmoil that is roiling around inside.
Alzheimer's and dementia are often called by caregivers as the disease with the long good-bye.  That's our take on it.
But as I see and now understand more for the sufferer it is a disease of a long erosion and the feeling of sliding into a bottomless black pit.
No wonder the Alzheimer's support group didn't work for the sufferers.  How can victims of this mind erosion all of whom are in various stages of the disease possibly communicate their frustrations to others who are feeling the same feelings but don't know how to express them?
The caregivers portion of the groups are great.  We also share the understandable things of the disease.  When did you take away their driver's license?  Does your spouse make a mess in the kitchen like mine does?  Who do I call to provide day care, bus service, respite care, monetary help?But we don't talk about how it feels to watch a beloved spouse withdraw from you, or how it feels to watch them unable to cope with daily living.  Or how it feels to watch the rock, the center of your universe slowly slip away.  One joy I have is knowing that I can now be Don's rock.  I know that later he may not know that I am his wife, but that I will be the rock that keeps his world on an even-keel.  

Sunday, February 26, 2012


My neurologist in Virginia Beach cautioned me that my hallucinations would progress from my visions of small rodents running across the floor to people that I will talk to!  Turns out, she was right!  No, I have not had a conversation with one of my "Friends" yet, but my hallucinations are getting bigger and more realistic.  Yesterday, I saw a small dog, walking across the kitchen floor last night.   Now my faithful friend "Marcel" was laying closely by my side.  My wife was on the couch with us, and there was that dog, walking across the kitchen.  I looked at Marcel just to make sure it was not him, then I told my wife.  Her reply was; What does it look like?  She mentally catalogs everything I tell her.  But, she is not easily upset by my issues.  A great combination in a care giver.

So, much like the night I punched my wife because of a dream I was having, another issue surfaces in full cover.  By the way, when I told my neurologist about punching my wife, she replied; I was expecting that!  Funny, I wasn't and I am sure my wife was not either.

Saturday, February 25, 2012

Sleep study

Well, the long avoided sleep study finally happened!  They made accommodations for my wife to stay with me, because I wake up disoriented and frightened sometimes.  They made accommodations for her, sort of.  There was a recliner for her to sleep in.  Not the best night's sleep for her.  I on the other hand, had a bed that was fairly comfortable.  The staff wired me up and I looked like the Mercury Astronauts getting ready for the first manned flight!  Tubes in my nose, wires stuck to my head with globs of something that looked and felt like Elmer's Glue, wires on my legs, my arms, my hands, my goodness, how do they expect me to sleep!  How can roll over?  How do I go to the bathroom?

But, it worked.  While I felt like I got very little sleep, my wife, who really did get very little sleep, said I slept pretty well.  I have not seen the results yet, but the technician did not come in and put a CPAP mask on me in the middle of the night, so I must have done well.

I view this a a required test.  A check in the box.  Something to suffer through.  Do I think that I have sleep apnea?  No.  But I understand the doctor needs to check all possibilities.  So, it is done, and I am glad.   I am sure they will come up with something else to do.

Monday, February 20, 2012

I am a man, I am supposed to fix things!

One of the frustrations in my life since this disease has started to progress is that I cannot fix the things that are wrong.  In the past, I have always been able to fix what was wrong.  If the faucet drips, I replace the seals, if the roof leaks, I get my friends and put on a new roof, if the car breaks down, I trouble shoot the problem and fix it, if a relationship has problems, I find the issues and provide a solution.  My wife says that's what men do.  Actually, when I said this was a frustration to me, she said; "That's what men do, fix things."   She is right, of course.  I explained to her today that I was frustrated because I have had to put her in the position of caretaker.  I know she understands, but I need the security of hearing her tell me all is OK.  That used to be my job, now, I am the one who needs consoling.

Our home Church is experiencing some difficult financial and attendance issues that we are dealing with from a distance.  We love the people of that Church and I wish I could solve the issues they are facing first hand.  Unfortunately, I am powerless and that frustrates me even more.  Yes, prayer is important, but the "Fix it Man" in me wants to be the repairman.  Of course, that's not going to happen.

So, I continue to learn how to live with the limitations of LBD.  But truthfully, I am getting tired of fighting this fight.  I am not sure i want to learn much more.  I know I will, but right now I am feeling the frustrations of coping.

Friday, February 17, 2012

I have it made!

We had a good day today.  We got up and had a leisurely breakfast.  My constant companion poodle got groomed.  My best friend called me and we had a great conversation discussing his and his wife's pending visit.  We went shopping for a few things and enjoyed ourselves and now, I am sitting on the couch, watching television, digesting a wonderful dinner.  I truly have it made!!   Yes, my legs hurt enough that I needed some pain meds tonight, I have problems walking too long and even standing for any period of time, and I still dream every night, things that frighten me.  And my memory continues to get worse, even old memories are fading.  But, this life is precious, I find great joy in my son and his family being so close.  I enjoy the time with my grandsons, and most of all, I love and cherish my time with my wonderful wife.  Even with all that is going on, I know that I truly have it made!!  There really is nothing that can change that fact.  And I am happy and secure in that truth.  GOD has blessed me with a wonderful life.

Monday, February 13, 2012

Legal issues

We spent the day getting our legal issues in order for our new home state.  It seems the law is different from state to state.  That's good!  It means States Rights and the Tenth Amendment still exist.  In any case, we met with our new Elder Law attorney to redo our medical directive, power of attorney and even our wills.  These are important issues to anyone but they are specially important to families and individuals effected with a dementia disease.  You see, at some time, probably sooner than later, I will become unable to conduct my own business or convey my wishes for end of life care.  And, since our society has become so litigation based, doctors and financial institutions are very protective of their share holders.   So they want to be sure the person telling them the wishes of the patient who is now unable to tell them himself what he wants, is actually legally permitted to do what they say they are!   Now, you say, I don't have dementia, so I don't need these documents.  You know that is not true, but you are in denial.

This visit was free and the documents we need will only cost about $400.  Now that is cheap insurance to ensure my wishes are followed, when I cannot convey them.  I have been in the hospital once since I was diagnosed and as the doctor was reviewing my medicine list, he topped talking to me and addressed all questions to my wife as soon an he saw I was taking Arecept and Namenda!!

Again, this is just one important step on the road to the future.  And being prepared is the only way to ensure your spouse, your children and you are prepared and legally protected.  

Friday, February 10, 2012

Things that bother me

I have addressed this in some detail before, but tonight I am really bothered by the staccato, jumping around, noise, activity of my wife.  Now DON'T get me wrong, my wife is a super woman!  She takes wonderful care of me and is exceptionally caring of me.  She does everything she can to make my life as smooth and pleasant as possible.  But, almost every evening, she gets this fit of activity that drives me crazy.  I can control my emotions and hold in my rage.  But, sometimes, after a time of extreme activity, when I am tired, worn out, I am extremely susceptible to the effects of this hyperactivity.  Again, I know it is not something she does on purpose, it is just the way she is wired.  But she needs to understand that my wiring is "shorted" and things that she sees as normal for her cause me great discomfort.  No, I don't discuss it with her.  I did once, that was sufficient.

I take meds at night to ease the stress, emotional discomfort, take the edge off.  But I do not think they do much because I still experience this issue almost every night.  I guess on the positive side, I can say she is consistent!   So, I will just continue to deal with this issue.  I do worry about this as an issue that will continue to get worse as I progress down the road of Lewy Body Dementia.  But, there is nothing I can do about it, now or in the future.  So why worry.

Sunday, February 5, 2012

My career's effect on my health.

During a telephone call with my Brother yesterday, we talked about my retirement and he asked me how my wife liked retirement.  My answer was; "She thought she would miss work.  That lasted about 15 minutes."  The truth is, we are much better off, health wise, retired than in our individual careers.  The reasons are both obvious and hidden.  The obvious reasons are know to most of us.  Having our entire day together.   Being able to do what we want, when we want.  No deadlines, no projects, unless we plan them.  I often call retirement six Saturdays and one Sunday per week.  These benefits are good for our mental and physical health.

The hidden benefits are things we choose not to talk about.  For instance, my wife and I both worked in caustic, emotionally poisonous environments.  The office politics, the management bullies, the individuals that only profit if someone in the team fails.  All of these emotional stressors  combine to make going to work painful, even repulsive!  We all have experienced these issues and we justify them in our mind by telling our self; "It's this way every where."  Well, if it is, it shouldn't be.

I retired because I had reached the point in the progression of my LBD that I could no longer effectively do my job.  I could not remember how to do the basic parts of my position.  Yes, there were friends that would have carried me.  But that is not fair to them or the organization.  But, retirement has actually helped me feel better.  Retirement has extended my useful mental capabilities and made my quality of life better.  Will I live longer,  no.  But, I will live better!  I regretted retiring because I enjoyed what I did and the people I worked with.  However, after looking at the positive effects of being retired, I have to say that the ability to retire has been a great benefit to me.  The caustic effects of office politics took it's toll on me, and now I know just how much.

I often tell people, there are two things GOD is not making any more of;  Land and time!  Time, not money is the most precious thing you have,  And, since we do not know when GOD will call us home, tie is also an unknown.  There will never be enough money if we don't stop wanting and spending. If you are diagnosed with a disease that is not curable, consider how you are going to spend that valuable time.

Saturday, February 4, 2012

Florida means FAMILY to me.

The sole reason we moved to Florida is because our Son and his wonderful family moved her.  I talked to my wife a number of times about a possible move to Florida and I met a mile long list of reasons NOT to move.  I even looked into The Villages!  No deal.  But, now we are Floridians.  As I said, Florida means Family.  Today, we had everyone at our house to christen my new gas grill.  I cooked chicken and did a good job.  The entire family plus a friend of our Grandsons came to enjoy the afternoon.  But the secret is, I enjoyed it even more than they did.  It is therapy for me to have people to talk with, to tell sea stories to, to listen to.  I really enjoyed myself.  And, in the next few weeks, my sister and our best friends, are coming to visit.  So, I am excited!

Another thing I really enjoy is telephone calls from friends and family.  Today, I had the opportunity to talk to my Brother.  We talked for a good long, time, and I really enjoyed it.

So, this was a good day.  I know I write about the tough issues, so I think I should talk about the good days too.  And this was a great one!  Thanks.

Thursday, February 2, 2012

The state of me.

I was just discussing with my wife that I am tired of not feeling like myself!  I believe this is my way of starting to deal with the fact that I will never feel like I used too.  The neurologist I saw before I left Virginia said I had not yet dealt with my disease.  I strongly disagreed with her then, but maybe she was right.  Since the move to Florida, my wife and I have noticed changes for the worse in my mental and physical condition.  This disease is progressing and I know it.  Up to now, I may have been in denial like others were.  But now, it seems I may have a fight on my hands.  

On another note. I have received a number of telephone calls from friends used to work with.  Their telephone calls are great therapy for me.  I enjoy hearing their voices and discussing the issues of the day.  Politics, sports, work, their's not mine.  They seldom ask how my disease is progressing and I appreciate that.  I love to get their calls, I miss them.

So, that's the sate of me, today.  But, like a tide moving on the sand, this will change too.  I like that.  Change is good.

Wednesday, February 1, 2012

I loose track of time.

I was looking at my blogs this morning and I realized I had not posted in a few days.  It is not a new thing, but I loose track of time.   If you asked me, I would have said it was only yesterday that I wrote my last blog.  But, as you know, it was not.  Today, my wife is at a crafting event, so I am alone, except for my faithful companion Marcel, at home.  As it always happens, I will be totally surprised when she walks in!  And I will not have accomplished all the things I had planned.  Why, because I loose track of time.  I even know how it happens, I get distracted.  Like now, I am blogging instead of working in the garage getting it organized.   Oh well, no big deal.

On another note, I went to see my new neurologist sometime last month, I don't remember when.  He did some memory tests and blood tests.  I am anxious to see the results of those.  I don't remember what the blood test was for.  He will tell me when I see him next.  When is that, I don't know but my wife does.  She keeps me on track.

Well, back to whatever I am supposed to be doing.  Or maybe I will just watch the rain.