Monday, September 18, 2017

Advice for Caregivers and Spouses

Many of you know I spent 40 years with the United States Navy.  I was the Force Master Chief of the Surface Forces, Atlantic Fleet, a Command Master Chief of a Destroyer and an A-6 Air Squadron, Leading Gunners Mate on numerous ships.  The Gunner's Mate Detailer, and Instructor at Gun School, Great Lakes.  As a Civil Servant for the Navy, I was a Gun Mounts and Turrets Tech Rep, The Gun Systems Replacement Manager, the Programs Branch Head, the Search Radar Branch Head, and had numerous collateral duties of note, like the recovery of the USS Cole and the repair of the MCM's in Bahrain.  Needless to say, I had a very impressive, responsible, productive, Navy Career.

Now, my cognitive skills are not what they used to be and it shows, everyday.  The challenge for the caregiver or spouse is to NOT treat me like a mental midget!  A more correct way to express this is to say;  Spouses and caregivers should respect the Dementia Patients DIGNITY!  

I try, everyday, to be helpful, useful, and productive.  If I am asked to do something, I do it to the best of my ability.  And, although what I produce, write, make, may not be grammatically perfect, written the way you would write it, or done in a manner you would have, please don't redo what I did.  If you do not want to accept what I do, don't ask me to do it!   This treatment causes me to be angry, resentful and to withdraw from all contact!

Telling me I did not meet your expectations, through your actions, facial expressions, or comments, does nothing to make me feel useful or wanted.  Instead, those actions invoke feelings of uselessness and give me the idea I am not wanted.

Does this sound a little sensitive to you?  Well, I am sensitive.  I was a powerful man, able to do things most of you can't even imagine.  When I said things, brought forth facts, and made decisions, high ranking Navy Officers and Civilians listened and most often acted!!  Now, it seems there is nothing I can do right and no one that listens to me.

I have lost my Personal Dignity!

If you are a caregiver or spouse of a Dementia Patient, read and heed!

Saturday, September 16, 2017

Saturday night update

As I said in the last post, the MRA showed all was normal as far as the blood flow in my brain.  That was wonderful news.  As the lower dose of Effexor takes hold, it seems my headaches and BP are decreasing, very slowly.  I have dealt with a "Boil" on the back of my neck for 11 days, that required medical attention every other day.  They took my BP each time and except for one day, it was in the 139/90 range.  That is better tan a few weeks ago.  I still get short, intense headaches when I cough or sneeze.  But, all in all, I think things are going in the right direction.  I even went and played Pool last Wednesday.  The first time in at least three months.  I consider that good news since I have been pretty much anti-social for a while.

This may be one of the signature LBD positive swings I have experienced since I was first diagnosed.  I have learned to appreciate these respites and fear them at the same time, because they always lead to a big downward turn!  But, I will enjoy the good times while they are here.


Tuesday, September 12, 2017

MRA Results and other issues

Yesterday, I had an MRA to see if I had any vascular damage in my brain, possibly caused by high blood pressure.  Praise God, there is no aneurism or arterial weakness detected!  While I was not worried, I was concerned.  I can honestly say, it is only God's providence that has kept me through this disease.  That being said, what next?

I asked my neurologist to address the high BP issues.  I do not want to increase my Effexor dosage so some sort of BP med seems to be in order, on my mind.  I truly hate what Effexor did to me and I blame that on the so called neurologist  had when I first moved to Pensacola.  He elevated my Effexor dosage much higher than necessary.  I trusted him and He violated that trust.  Never again!

On other issues, I am still dealing with this "Boil" issue.  I still have a drain in the incision and while it is decreasing, it is still draining.  Having the drain reinstalled every other day in painful and annoying. Hopefully, tomorrow will be the last visit for this issue.

Evenings are getting more difficult.  Noise causes agitation and anger in increasing volume.  More and more, television viewing is bad for me most of the time.  Loud commercials seem to dominate television.  News programs are mostly commercials and inane dribble.  Local news is nonexistent her in Pensacola.   I find myself in bed, earlier and earlier.    Bed is my safe area.

I hope the headaches decrease soon.



Wednesday, September 6, 2017

The Azalea Trace Memory Support Group

We started a Memory Support Group here at Azalea Trace about 6 months ago.  It is made up of individuals that have a dementia or some dementia symptoms.  The basis of the group is self-support.  We discuss our symptoms, how we are dealing with those issues, and get feedback from other group members that either have the same issues or are earlier in their Dementia journey and want to know what the future may hold.  We have had a number of Health Professionals meet with us to educate us on Dementia issues and related health issues like choking, falling, exercise. 

Today, our group had a luncheon with the new Director of Azalea Trace, Ms. Tammy Hardy-Farber has extensive training in Dementia care and is very up to date on the new care methods!  She gave us some information of the new construction of the extension of our Skilled and Assisted Living facilities.  Both of these communities will have Dementia Care Communities.  This is exciting news and very much needed.

I love the fact that our Director and all of the Staff here at Azalea Trace support or Group.  Tammy especial cares about Dementia care since Her Father in Law died of Alzheimer's.   She is a visionary in Dementia care!  We are truly in good hands!!

Tuesday, September 5, 2017

Another health issue

The last couple of weeks I have been dealing with "Boils"!  I have not had a Boil since I was 6!  I have terrible memories of my Mom lancing my boils with a razor blade.  No Novocaine!   But, today, we went to the Urgent Care facility to have this Grande Boil felt with.  Naturally, that meant lancing it.  Needless to say, it was brutal, even with Novocaine!!   The Doctor pressed so hard on the Boil to get some of the stuff out that my neck muscles are sore!!  He told us "Boils" are very common in Florida!!  Who knew?!  I bet the Tourist Association does not include that in the "Come to Florida" brochure!

And, to add insult to injury, I have to go back tomorrow morning to have the "Packing" changed!!

Thursday, August 31, 2017

A much anticipated visit!

My Sister, from Cleveland, came for a short visit this week thanks to Her son and Daughter's generous gift of a flight to Pensacola!  It was  Wonderful to see her.  We went to Cleveland last year but she was in the Hospital the entire time.  Since then, she has miraculously recovered!  She looks 20 years younger and much healthier.   We had a great visit, including a big dinner with our Son and His family.  What a great night.

She departed very early this morning and I took a nap when we returned to our apartment.  I am completely exhausted!   Since I am so dependent on my routine, as most Dementia patients are, any disruption is difficult.  Also, you may understand the concept of "Show Time" in LBD patients.  Well, I stayed in "Showtime" for four days!   That wore me out.

Still, I am so happy she came to visit and I would rather have her here for another four days regardless of how tired it makes me.

So, I will recover, slowly.  But I will miss her company for a long time.

Another note;  My MRA is final scheduled for 12 September.  We will see what that reveals, if anything.

Wednesday, August 23, 2017

More MRA info

The Internet is a wonderful source of information.  I did some research and depending on the type of damage in my rain, if there is any at all, there is an option of using a stint, much like they do for heart blockages.  But, in the brain aneurysm case, the stint strengthens the blood vessel.  Of course, there is also the option for brain surgery that requires opening the skull.  But that seems to be for the occurrence of bursting of the aneurysm.   So, there are options, again based on the severity of the damage.  And again, there may not be any damage yet!  We will just have to wait and see.