Sunday, September 29, 2013

The Decision!

OK, I have spent a number of posts explaining the process of trying to determine where we should like.  We went to the Continuing Care Retirement Facility last Friday to show our Son and Daughter in Law.   It was a good visit and they both thought this was a great facility that fit us perfectly.  So do we!  So tomorrow we will submit our deposit.  This action will place us on the Priority Waiting List.  You may ask, how long is the waiting list?   That is a hard question to answer.  There are people who have been on the waiting list for over 6 years!  But, they want a specific unit, facing a specific way, in a specific building!!  We are very open to the unit we get because there are at-least four floor plans that fit us very well.  So, we may only wait a few months.  Time will tell.

I believe this is the best place to live for us.  I freely admit that it is not the best choice for everyone.  But it answers many questions about our future that have bothered me ever since I was diagnosed with LBD.  Like, what happens when I need professional care?  What happens if my wife needs professional care because of a broken hip, or some other medical issue?  What happens if we both develop memory issues?  Yes, I have mine diagnosed now, but she has a strong genetic tie to Alzheimer's.  Not to mention stroke and cancer.  So, I believe this continuing care community meet all of our needs.

There is also the point is that most Continuing Care Retirement Communities will not accept me because I have an LBD diagnosis!  I have been totally up front with this facility and they say they will accept me in their continuing care plan.  That means, our cost does not rise regardless of what care needs we have, and regardless of time in professional care.   And that guarantee applies to both of us!  This fact alone makes this the best choice.  Not to mention the facilities!!  And everything is open 24/7/365!!  The indoor pool, the jacuzzi, the work out rooms, the lounges, the library, the recreation rooms, even the pool table!!  This is the right place at the right time!!!    

And if you are a regular reader, I a on the list to the Armed Forces Retirement Home.  I would really love to live there.  It is a Continuing Care Retirement Community, but it only admits retired Enlisted personnel!  That means my wife would be on her own!  I have been married to my wife for almost 41 years and I like being with her!  So, the Navy Home really is not a perfect fit.  This place is.

So, tomorrow we take our first step.  It is a big step, but one I am ready to take.  I will keep you posted.

Thursday, September 26, 2013

Doctors who care

I have written a number of times about doctors that have not been as caring or attentive as I would like.  This time I want ti write about a doctor that really shows the best in medicine.  Our GP left practice here in Florida so I was again forced to find a new GP.  The hospital chain, Sacred Heart help us connect to an exceptional doctor.   During our first visit, she spent an hour learning about where I was in my LBD journey.  After some blood tests, she told me my sugar and triglycerides were way too high.  I thought that meant I was becoming diabetic.  She said, no, you are eating too many carbohydrates.   She told me to lower my carbs and we both did.  I was eating 600-700 carbs a day!!  Now, I eat around 100.  The weight has just fallen off of me!  To date, in six weeks, I have lost 30 pounds.  I feel better, my blood pressure is down, and I am fitting into clothes that were in the "give away" bag!

In my last visit, I complained about an increasing pain in my left shoulder.  I had my right shoulder rebuild 15 or 20 years ago.  But, my left shoulder has has increasing problems over the last year or so.  My new GP, sent me to a shoulder doctor that was just as caring as her.  He told me he had done research on LBD in preparation for my visit!  Wow!!  Now, I have had the MRI and we will see the verdict this Monday.  Whatever it is, I trust this Doctor to have my best interest at heart.

I know I have complained about doctors not caring and not doing their homework.  But I have had two recent experiences with superior Doctors that emulate the best characteristics of the medical profession!!   The moral of the story is, don't give up the search!!

Wednesday, September 25, 2013

What is more important to you?

That is a very important question.  What IS more important to you?  How you live today, Comfort, security,  and quality of life.   Or, future care.  That is really the basis for the struggle we are involved in right now!

Do we select a place to live that makes our living easy, comfortable, secure, even luxurious, today, with no promise or provisions for future care.  Or do we select a far more expensive Continuing Care Retirement Community (CCRC) that contractually guarantees assisted living and skilled nursing care at no additional cost?  Trust me, this is a difficult question to answer.

The entrance fee and monthly fees are certainly high or even exorbitant for most CCRC.   Or do we choose an over age 62 apartment community that provides a secure, luxurious, age specific place to live with no buy in fee and rents at about 33% of the CCRC?   Now, to be fair, this option places us at the mercy of other facilities if and when one of us needed professional care.  What we really need is a crystal ball.

Certainly a person with a confirmed diagnosis of LBD should be looking at future needs.  But paying for an undetermined period of time for care that may or may not be needed is something that should not be done without research.  Of course, most CCRC's that are not fee for service will not accept anyone with a confirmed diagnosis of dementia.  We are a bad investment!  Maybe that fact alone should sway my decision.  And in fact, it does have a heavy weigh on the side of the CCRC.

Another thing to consider is maintenance work on your present home.  I have had my expensive and emotional stories about this home and the home we sold in Virginia.  I see home ownership the same as boat ownership!  A hole that you pour money into!  I would much rather live in a facility, apartment or CCRC, that fixes anything that breaks and does things like install ceiling fans, grab bars, and comfort height toilets for free or a minimal fee.  Not to mention well maintained landscaping, club house, pool, and exercise facility.

So, while we are leaning towards the CCRC, small doubts still surface and cause trepidations.  Yet, in my case, a CCRC that will provide our family the security now and a contractual future care guarantee is the best choice.

Monday, September 23, 2013

Life's Important Changes

I am still amazingly connected to life most of the time.  Yes, I have my moments and evenings are not my friend.  But, I still can logically approach issues and make my preferences known.   I do have problems making decisions!  That is part of the "Executive Function" of my mind being "broke".  Just like the part of my brain that keeps me from acting out my dreams.  Just ask my wife!
So, making decisions about how and where we will live in the near future is beyond me.

We have been discussing our options for three days.  Stay in our home, move to a continuing care facility, seniors apartments, the Navy Home for me.   Unlike families that have to make a quick decision to place a family member in an Assisted Living Facility or a Skilled Nursing Facility, we have the luxury of time, for a short, unknown period.   That may make this decision harder instead of easier!

We do not want to be a burden to our Son and Daughter in Law.  We need to consider the future health issues of both of us.  So that really rules out the Navy Home.  Now, if I get a call telling me I have a room there tomorrow, it might impact our decision.  But, that call is probably a year off.   We also need to preserve our savings.  

Another issue is quality of life!   The upkeep of a home is a never ending job.  Now we have a beautiful new home but termites, leaking showers, landscaping, lawn equipment, and painting, all make me wonder why we bought another home in the first place.  Yes, it was cheaper at the time, but the overall expense is greater than the savings.  Not to mention the frustrations as I have written before.

So, while we have not made a decision yet, the driving factors are quality of life, provisions for most medical eventualities for both of us, and future security.  Then there are issues like using my God given spiritual gifts. friends and family.  Trust me, this is not easy!  But it is easier for our Son and Daughter in Law because we are not in an emergency situation and we are involved in making the decision.  But, this is the first Continuing Care Retirement Community that openly said they would take me without reservations or conditions!   We told them about my diagnosis up front!  And we reminded the sales associate when we met with him.  Yet, they seem to want me.   Groucho Marx said: "I would never belong to a club that would have me as a member!"  I hope that does not apply here.

I helped place my Father in Law in a Skilled Nursing Facility when he was shipped to us with Alzheimer's Disease back in the late 1980s.  There were no memory support facilities and Nursing Homes had no idea how to deal with this disease.  Much has changed.  But being a family member of a Dementia patient and trying to find the best facility on a limited budget is a terror we do not want our Son to face.  I am truly sorry for those who have to endure this trial.

So, that's where we are right now.  Still in shock over the up front costs and the monthly fees.  Still trying to decide if the benefits are greater than the costs.  And still asking questions.  Decisions will come, and I will let you know when I know.

Friday, September 20, 2013

Exploring possibilities in care

I have written earlier this week about home maintenance issues.  The post I wrote was emotional and truthful!  I am impacted by home maintenance problems before and we moved into a Seniors Apartment in Virginia.  Then we moved to Florida and there were no Seniors Apartments in the are we live.  We bought a home because it was less expensive monthly, than an apartment and it was not populated with college kids!  But, after two years, we may be ready for another option.

We have visited a number of fee for service communities and continuing care communities in Virginia and here in the Gulf Coast.  Today we visited a continuing care community that actually makes some sense.  As with ALL continuing care facilities, there is an up front fee, a monthly fee that pays for the apartment, most utilities, one meal daily for both of us, and other services like 24/7 emergency medical care.  Continuing care communities require you to be fully functioning when you move in.  Then, if you need assisted living, nursing care, or memory support care, it is provided at no additional cost.  In my case that is a very attractive option.

The facility we toured today was modern, elegant, and required a more reasonable up front fee than some others we have toured.  The facility was clean and pleasant.  The assisted living portion and the skilled nursing areas were clean and did not have the odor of urine which is prevalent in nursing homes.  The Independent Living apartments were available in any configuration you could want.  Some were quite grand!  But so was the up front fee and monthly fee!  We did tour a one bedroom with a den that was perfect for us.  It had 1050 square feet!  We also toured a two bedroom two bath that was very livable!  

This community had every imaginable amenity.  Indoor pool, workout room, craft rooms, library that a small city would love to have, and a beautiful dining room.  Dining room service was restaurant style with a varied menu.  We enjoyed our lunch and ordered right off the daily menu.

The costs are shocking but the up front fee buys future care.  That is the best way look at an out lay of six figures for something you are renting!  But, try paying $200 a day for skilled nursing care.  That's $73,000 a year!  Two years of skilled nursing care equals the up front fee!

The other benefit is, my wife can live with me.  In the Navy Home, I am the only resident and she has to live somewhere else.  She can visit and stay for 5 days but she has to leave for 2 days.  And, if their is a hurricane, she has to leave.  Not a good scenario for her or me.

As this disease progresses, I will become more and more disoriented.  Right now, I have to know where she is at all times.  If she in not in the room I am in, I call out for her!  It is just where I am and it will only get worse.

We have also discussed this very openly with our son.  He is somewhat uncomfortable with this topic but he is also concerned about our future care.  Like any good son, he would like to have us live with him.  But, that stress is very difficult for a family and what if he has a great career opportunity that requires a move?  If I am in a facility, moving me would not be a good option.  I already don't travel well!  And that WILL get worse.

I am coming to the realization that moving back to Virginia is not going to happen.  Things cost more there and our Son and his family is not there.  It is a decision that hurts but I must defer to reason in this case.  I will always consider Hampton Roads home.

Since this facility has a waiting list, we need to make a decision soon.  It is not an easy decision and these next few days will be stressful.  But, it is ground we need to cover.  I will keep you posted.

Thursday, September 19, 2013

Stress effects me more now and in different ways

I wrote a few hours ago about being overwhelmed over a leak caused by the recent shower remodel.  I know most people would not be bothered in the least about a problem that already had a solution.  After all, their work is warranted, in writing!  But, it still sent me into depression and fight or flight.

Now, after mowing the lawn to calm down, I feel better.  And yes, Bath Fitters already fixed the problem.  But, I am still effected by the event.  Little things seem to take over my life!  I get angry, depressed, anxious, overwhelmed, sad, and introverted when something goes wrong.   My wife is beginning to understand how much these things impact me.  I realize it is hard for someone not effected by LBD to understand why I get so effected by little things.

I am still coherent enough to express my feelings but not coherent enough describe how thing impact me!  My wife will ask me; "What's wrong?"  And I will reply, nothing, or I'm OK, or better yet, "I can't describe it to you."   This frustrates her and rightly so.  But, I really can't find the words to express myself or, I really don't remember what started my downward spiral.  Recently, I have been able to take some time to reconstruct the events that lead me to my melt down or depressive episode.  But, I am not always able to do that either.

I do know that I really would like to reduce the potential stressors in my life.  But that idea causes my vibrant wife problems because she does not want to live in a controlled atmosphere.  She is still fully functioning and not bothered by the little things in life.   I do not know the outcome of this dilemma.  Time will tell.

For now, all I can do is express my problems in the best way possible and be as understanding as I can about the impact of my condition on my wife and family.

Stress is NOT a good thing for me!

We sold our home in Virginia and moved into an Over 55 apartment.  It was roomy, new, modern, and nice.  Yes, it had some of the apartment issues like thin walls, noise, and congestion.  Yet, I liked it.  Then we decided to move to Florida to be close to our Son, Daughter in Law, and Grandsons.  We bought a house because the monthly cost was much less than the apartments we liked in Florida and there were no seniors apartments in this area.  It was a brand new house and we figured; how many problems can a new house cause?

After two years, we have now found out!  I have written about the termite issues.  But now, we have another issue.   I needed grab bars in the shower.  Actually, I need them everywhere.  In any case, the builder told me he could not add the grab bars to the existing shower and split the cost of replacing that shower with a ceramic tile shower with the grab bars.  It was a beautiful shower and it had only one fault;  It leaked!  I sealed the grout twice to no avail.  Damage was beginning to show in the wall next to the shower so I contacted the builder and he told me I was on my own!  So much for the builder's warranty.

So, I contacted Bath Fitters and had them remove the ceramic tile shower and install their shower.  One piece walls, raised pan, grab bars, beautiful!  We were instructed not to use the shower for 24 hours.  We waited 64 hours before the first use!  And, ,, the shower valve LEAKED!!!  It soaked the wall in the master bedroom and the carpet next to the bathroom wall before we noticed it!! I am overwhelmed!

I have owned a number of homes, almost all of them new.  Each one has it's own issues.  But I have never been treated as badly as D.R. Horton has treated me.  They have not stood behind their product and I have been left to fend for myself.  Since I am very new to the area and have no friends who could or would help me choose the best contractors, I have been subjected to a few unscrupulous contractors like the one who broke my sinks and left.  So, needless to say, I am frustrated with this version of home ownership.

I do not need stress.  That is one of the reasons I retired.  Stress makes my symptoms worse!  I don't want or need to own a home.  What I need is a place that takes care of me!  Not a place that I take care of!  This leak has even caused me to miss our Bible Study at the assisted living facility next to us.  I love that time and those people!  Home ownership is for young people.  Not to mention the cost of these issues.

So, I am waiting for the Bath Fitters folks to come and fix the leak, dry the carpet, and repair what ever needs repaired.    

Wednesday, September 18, 2013

More pills for Marcel!

I wrote before about what we thought was a stroke suffered by our miniature poodle.  We took him to our Vet and of course, Marcel the Wonder Dog was just fine.  Just the same, the Vet did some tests and discovered that Marcel may have low thyroid disease.  Today, the Vet did a follow up test and it verified that Marcel is indeed suffering from low thyroid disease, just like me.  So, thyroid disease is genetic!  I have it and so does Marcel.

The Vet told us he will be taking the same drug I do for his hypo-thyroidism.  Same dosage too!  Again, proving the family connection!

OK, I know there is no genetic connection between Marcel the Wonder Dog and I, but am emotionally connected to him and his health impacts me.  It is interesting how connected we are to our pets.  Marcel knows my moods, when I am feeling bad, and when I am happy.  He stays by my side all day and follows me around the house like a puppy!  I log him and want him around for a long time.

So, Marcel will be like me, better living through chemicals!

Tuesday, September 17, 2013

Great doctor visit! Imaging that.

The last month or so, my left shoulder has real caused me problems.  Pain that keep me awake or wakes me up and pain causing limits in motion.  My GP, who I really like, sent me to an Ortho Doctor.  I did not know him, since I know very few folks here, so I was apprehensive.  The visit was a pleasant surprise!

First, the staff was friendly, efficient, and caring.  But the Doctor was a breath of fresh air.  He came into the room, introduced himself, asked my if I preferred Donald or Don, and then told me he had been reading up on Lewy Body Dementia and had some questions about how this disease was effecting me.  He asked factual, thoughtful, in depth questions!!  Wow!!  A Doctor who does his homework!!   Let's applaud.

I was really happy to be treated so professionally and with so much actual care.  After he examined me, we discussed our nest step and the possible steps after that.  He talked to me like I was actually intelligent and there!  Some Doctors, once they see my medicine list, discount anything I say or just don't talk "To" me.  This doctor even discussed the effects of General Anesthesia on LBD patients and said he would consult with my Neurologist before any surgery was scheduled!

So, while I complain about Doctors, I always want to let everyone know when I run into a physician that goes above and beyond the call of duty, and this one did.

Monday, September 16, 2013

Florida anger issues

We have lived in Florida for two years and we have had many of the normal Florida problems.  Termite swarms, termite infestations, heat, rain, love bugs, palmetto bugs, and did I mention termites.  We bought a new construction home and we have had termite problems from the start.

Our builder installed a ceramic tile shower to meet my grab bar requirements.  It looked very good, but it leaked through the grout.  I sealed the grout as instructed, twice!  It still leaked, I thought.  So, we decided to replace the shower using "Bath Fitters".  As they tore the old shower out, we found out what we thought was water damage was termite damage.  I called our exterminator and Steve showed up in less than an hour.  It turned out that the damage was from the last termite infestation and there was no living termites.  We did treat that area by drilling holes and spraying termite killer in the area.  But, they ate some wood just the same.

Our exterminator sprayed more "Product" in the area and in the drain trap holes.  If a termite lives through that, I will give it the house!    So, I can once again try to calm down.   My exterminator also told me scorpions were moving into our area.  Great!  More aggressive insects.

This day has been very stressful for me.   It seems the house continues to cause me stress and worry.  Yes, I have the best termite coverage available in Florida.  But, every time I turn around those wood eating bugs are attacking my home.  Houses are work that never ends.

Stress is not my friend and it makes me difficult to live with!  Even Marcel the Wonder Dog got yelled at!  I am overwhelmed at the moment and I cannot deal with my emotions.  It will be an early night in bed for me.

Saturday, September 14, 2013

Mobility issues

Today, we went to explore Fort Barrancas at Naval Air Station Pensacola.  We both wanted an outing and it was predicted to be below 90 degrees.   However, the humidity was very high.  Just the same, besides shopping at the Commissary last Thursday, it was our first outing since our trip.  Floridians get "Cabin Fever" in the summer, not the winter and we were suffering from cabin fever.  SO, out we went.

Fort Barrancas is big, on the side of a hill, and filled with steps, corridors and tunnels.  It is wonderfully preserved, seeing as it was constructed in the 1800, and a jewel of American History.  Our tour was enjoyable but it became painfully clear that our legs were not accustomed to this type of walking.

My wife commented on how much easier it was to walk in the Hampton Roads area.  I agreed!  But, we went on.  Both of us had to sit down on the benches a number of times!  My wife would call the breaks before I did, but that is just because I am just a bit tougher, or maybe more stubborn that she is.  Just the same, the humidity took it's toll.

I have commented on my mobility difficulties before and I did have my cane with me.  It helped!  But, now my legs are really letting me know they are unhappy.  This is symptomatic of LBD and I know that.  My wife has recovered from the exertion, just like she should.  Physical exertion does cause fatigue especially in hot and humid conditions.  But, unaffected with LBD, I would have rebounded quickly like I had so many times in the past.   Believe me, Subic Bay, the Western Pacific, Panama, Central America, are all hot, extremely humid, and breathing there is like breathing underwater!  But, I always rebounded quickly with minutes of rest and some water.  Not now.

We wanted to climb the Pensacola Lighthouse today, but that will have to wait until winter!  That's when the Florida natives come out of hibernation.   My legs will probably still give me grief, but I will sweat less and the breathing will be easier.  AT least, that's my theory!

Friday, September 13, 2013

Watch out for the furniture!

A few minutes ago, I was sitting in my chair and Marcel, the Wonder Dog, wanted in.  I got up from my chair, navigated around one obstacle and promptly rammed my thigh into the sharp corner of our Secretary Desk in the living room.  The bruise will be horrific.  The pain is subsiding now, but it was a good one!

This is a lesson for all of us.  My stability is like my dementia, on one day and off the next!  We just came back from a visit to Virginia and I did not use my cane once.  Should I have, probably.  But I did not fall or run into anything of importance.  Yes, I rocked back a couple of times, but I had my Wife there to stabilize me.  Now, I am seeing more stability issues.  Do I have my cane in my hands, NO.  I am a tough, Navy Master Chief Gunner's Mate and canes are not part of the uniform, in uniform or in civilian clothes.  I know that is baloney.  But it is how I think.

But I do know canes serve two purposes.  One is to stabilize me.  The second is to let other know, that see me, that I have mobility issues.  A very good friend in Virginia called my cane a "Sympathy Stick" when I took it to a Gun Show.  He was right!  People showed me difference in crowds and let me close to the tables when they were three deep!  Sure that was cool, but I do not like the idea that I am handicapped.

Yes, I get angry when someone accuses me of malingering or not being sick.  So, I guess I am a contradiction.   But the real fact is, I should have my cane with me all the time.  In stores, I get tired easily and often look for a place to sit down.   And my Wife and I have learned that I am good for one outing a day.  After that, I am tired and many times grouchy.

But, the lesson learned here is to declutter the house, make wide paths, and keep my sympathy stick close to prevent pain and bruising caused by high speed collisions with furniture!  That is a lesson we all need to learn.  Hopefully you will learn it with out a painful contusion like I have on my thigh. I think I will go apply some ice to control the swelling!

Tuesday, September 10, 2013

Another word on our trip home

I wrote before about the emotional effect of our trip home.  It truly was wonderful!  I visited many of our long time friends.  Many of them are more like family that friends.  I even had the privilege and honor of preaching at our home church.  What a wonderful homecoming.

During our Communion service Sunday evening, one of the new members of our fellowship that I had the pleasure of meeting, asked me how I became a Pastor?  I had a long reply to his question, but I have been thinking about that question ever since.  As all of you know, I have LBD and I am somewhat slow in the evenings.  So, I probably did not answer that question as well as I could.

The trip highlighted to me a number of issues that effect me and others with LBD.  Certainly, Sun downing is a big issue.  Nights are not my friend.  Another issue is being out in the dark at all!  I really don't like being out after the sun goes down.  Many of you know I still drive, and I believe I still drive well.   I do get tired faster and easier and I noticed the fast paced traffic in the Hampton Roads area tired me out quickly!

When I visited the many friends that I worked with, I noticed that after 2 hours of talking, meeting and greeting old friends, and walking around our big facility, I was bushed!!  I was having problems talking coherently and even felt weak.  We spent that evening resting.

During the drive home, we spent 11 hours asleep in Savannah!  That was after an 8 hour drive.  We did share the driving fairly equally.   I was very glad that I did not try to drive anymore.  However, the next time we will fly.  Marcel the wonder dog will have to stay home.  One point here, I hate flying!!  But it will be better for me than driving this distance again.  My long distance driving is over.

Since we moved to the Panhandle of Florida two years ago, we have formed NO friendships.  It is not that we have not tried.  We have volunteered at Church, done Community events, and been open with our neighbors.  Yet, no friends.  I was beginning to think that there was something wrong with me!  Then, we went home.  Friends from all over wanted to see us.   We visited, hugged, laughed, worshiped together, ate together, and had fun.  More fun that we have had in 2 years!  That was the topic of yesterday's blog and the subject of much conversation in our home.

In closing, I enjoyed everything about our trip except returning to the Panhandle.  Yes, I love being with my son, daughter in law and grandsons.  But I am at a loss for friends.  I miss my friends and I miss my home Church.

Saturday, September 7, 2013

The conflict of where your heart is.

We have been visiting the Virginia area where we lived and worked for 32 years.  Friends from the Navy and Church have filled our last few days.  It has been wonderful and we have not been able to see everyone.  Yet we have basked in the sweet aroma of friendship.

We have not been able to make any friends in Florida.  We do have our son and his family and I must say it is great being so close to them after their 10 years in upstate New York!

We are conflicted over this issue.  Then there is the issue of Continuing Care for both of us.  There is NO guarantee that I will be the one who needs assisted care.  My wife could just as easily be effected by a stroke or a heart attack.  We are scheduled to look at a continuing care facility in Pensacola the week after our return home.  This facility has told us they will accept me, with my diagnosis of LBD.  That is appealing since it would provide care for both of us regardless of our needs.  But, like any continuing care facility, they want major money up front!  We do get a break on that because we have long term care insurance.  But, the amount of that break will be discussed during our meeting.

We also found an over 62 apartment in Virginia that we both love.  That would put us back with all our friends and Church in Virginia.  But it would take us away from our son, daughter in law, and grandsons.  That would be terrible.

There is also the issue of me being fair to my wife.  She has moved many times on my whims, ideas, and wants. She also moved a number of times because of the Navy.  Each move caused her to leave friends, comfortable surroundings and family.  I will not force my wants on her again!

Then there is the idea of another move.  I did not do well during the last move from Virginia to Florida.  I have no expectation that the reverse would be any easier on me or her.

I believe I am overwhelmed over this decision.  I also know I cannot make this decision alone.   I will seek counsel from God, my wife, and my family.  I truly do not know which direction to go at this time.