Taking a Break

'Pursed lips' and 'smiling eyes'.  Sometimes you just laugh or cry. 

Because of a few family needs, I am taking a short break.  I will have an email site up soon, so you can talk to me about some of the confidential situations you may be having.  Remember, I can only give you my opinion and share my experiences.  Hopefully, you can gleen from my choices, and enjoy this most challenging, precious time with your loved one. 

Hospice of the Valley:  602-530-6900

Info@hov.org

Respite:

With Hospice of the Valley, every 30 days, the caregiver is encouraged to take a five day break.  It may have changed, but regardless, 'taking a break' is ESSENTIAL to the health, well being, and frame of mind of the caregiver.  It is ESSENTIAL.  This may come in many different forms ie, a short trip, rotating caregiving with family members, hiring a part-time caregiver, using the HOV Respite Plan, etc.

Elderly Persons' Lawyer/Alzhiemers Information and Journaling

November 03, 2010

I find it interesting, I started this blog with the same timing of my journals, only, four years later.  Reading through my journals has been so great, so far as helping to recall the sequence of events.  Hopefully, it will help you to make decisions in behalf of your loved one with more confidence. 
I had been overseeing Arts' welfare for about one month 'at this point' (which is a phrase I will use ALOT).  I now needed to contact a lawyer to share and validate my concerns about friends who seemed to be taking advantange of Art.  I'd logged that withdrawals from Arts' bank accounts for $100 and $200.00 were evident.  Art was being indifferent, and wanted His friend (female) to move in.  I was shocked.  Something was amiss.  I had not gone through Arts' belongings at this point, so I was not familiar with His stuff, but things didn't seem right.
The lawyer met with us at Arts' home on a Friday.  She met Art, and asked him personal questions about His history, His wishes for the Estate and myself representing Him.  Art really liked the lawyer and so did I.  I got the lawyers' name from the Alzheimers Association.
The Gold digging continued for the next few weeks.  I would go by Arts' home to check on Him and He would be gone.  The gold diggers' car would be in the front.
The following day, I came by to remind Art that the lawyer was coming.  I asked Art if He had been giving money to the (gold digger)?   Art said, "the money keeps coming in"!   Art was very open about sharing private financial matters with strangers and friends that came to his home.  Thus, folks took advantage of Him, regularly.  In asking the lawyer if there was need for concern, I was told "yes", Art would need His funds to pay for His care, and a felony was being committed against an elderly person.
When the lawyer came by for our Friday appointment, She explained the details of having myself as a partner with Art, in case of emergency or Art needing help with financial decisions, etc.  She advised He put money from His checking into a CD or Savings Account connected with the "Living Trust", so He could still have access to the funds, but in the event He were to die, it would not go into Probate (which takes about six months and require fees to process the probates' conclusion).  I took Art to the Bank and with His consent put my name on all accounts as Successor Trustee, per the assignment in the Living Trust.  This was a weird positon to be in, because here is where the 'rubber meets the road', and YOUR character becomes paramount.

Statistics

November 02, 2010
It is estimated, by the year 2050, 16 million people will be effected by Alzheimers Disease in the United States alone.   It is estimated 70% of those affected with Alzheimers Disease are cared for in the home, with a ball park cost of about $42,000.00 a year, as of 2006.
Caregivers can become clinically drepressed, requiring medical treatment because of  'caregiver burnout'.  Disease and death can result from the emotional and physical strain of caring for someone with Dementia/Alzheimers.  Caregivers have a higher mortality rate, than those they care for, because of the tremendous strain.
I was fortunate enough to have money from Arts' Trust, to pay for all of the expenses, up until the time I chose to contact Hospice of the Valley.  I cannot say enough about Hospice of the Valley.  Were it not for them, myself and my family would have had a more difficult time.  Art was a patient with Hospice of the Valley for two years.  Once a person is a patient with Hospice of the Valley, all 'out of pocket', or insurance costs, cease, because the expense of sustaining life is over.  No more Neurologists, or Specialists.  The consistent monitoring process, in supporting those with the 'Dibility' of Dementia, begins.  Of course, there is expense to the care and comfort of your loved one, along with medications subscribed by the Hospice Physician, but those expenses are absorbed as part of the Hospice care Umbrella.

Michael was a big help to me in 2008

Nothing is FREE.   Anytime someone gets something for FREE, someone else paid for it.  Even still, when the time comes for you to accept help, know there is a cost somewhere, but you still need the help!!!!!   You still need to educate yourself, so you don't feel guilty, rather, you feel empowered to do the best you can, and allow others to do the best they can.  Being an educated caregiver, with the support you MUST have, and the knowledge you NEED, will make ALL the difference in your attitude, health, ability to care for your loved one, AND be an advocate for them.  I don't care if there is money involved or not, whether you get an inheritance or not, whether noone in the family is helping or not, or whether you lose everything, there will come a day when you have to remember how you handled this.  It will haunt if you don't try, and it will eat you up, if you have alot of regret.  Be an educated caregiver, not a complaining, bitter, ignoramus.  Like my Mother taught me, "all things in this life are temporary", even 10-20 years is temporary.   Blessings will come to you, if you are serving in the right attitude.  If you are caregiving at this time, you are in my prayers.   Like all things, there is good and difficult.  This is your season to do this..........

Medication Setup and Little Buffy Boo



Buffy Boo and Shrek

November 01, 2010

At this point, Art is still dispensing His own meds, but I write up a 'medication schedule', and tape it to the cupboard door, so Art can read it.  Art had been writing the dosage on the tops of the lids and I thought that was such a great idea, I continued  to do so.  The refrigerator had very little food in it, so I took Art some soup.  Art would go to the grocery store with His truck and pick up various foods ie, coffee, beer, crackers, eggs, bread, cereal, and dog food (at this point, He was still driving around the neighborhood).  Speaking of dog food, Art had a little doggie named Buffy.  I called her Buffy Boo.  Buffy was Arts' constant companion.  She lives with me today.  She is a finicky poodle.  She is spirited and skidish.  She lives with my dog, Shrek.  He is big and slightly retarded.  Shrek was found in a shed in the desert, nearly dead, so I think He has brain damage.  Consequently, Shrek is a bull in a china closet, and in the beginning would run over poor little Buffy.  Buffy would jump and nip at Shrek and still does if He runs her over, but that doesn't happen much now.  Anyway, I began to take lunch and dinner over to Art, but very often would find the meals untouched, unless I put them in front of Art.   Restless, sleepless nights are becoming more frequent.  David and Michael continue to visit Art after school.  They mow the lawn or sit and watch television with Art for awhile.  Art is now beginning to feel lonely, living alone.  Art still has other folks coming over to visit, but like I said, "if it doesn't feel right, it probably isn't.  At this point, I make a call to an 'Elderly Persons Lawyer'.

Michael and David

Taking Away Driving License

 October 30, 2010
Watch those gold diggers.  They are sneaky.  They talk to you, smile with you, visit about stuff with you, but all the time, they have an agenda.  I'm reading the journal I kept in the beginning and it still ticks me off.   Which leads me to the complicated, frustrating beginning.   I tried to talk to Art about the Trust.  I had questions about the Power of Attorney and Medical Power of Attorney assignment.  That lead no where.  I asked Art if we could call His brother in another State, perhaps have Art go visit.  Art said, "No, I wouldn't want them to see me this way".
Sometimes when I would schedule time to go to lunch with Art, He would go with someone else.  He would  remember the lunch invitation, but not WHO lunch was with.  I would talk to him about giving up the truck keys and that went over like a lead balloon.  One day when I came over, Art gave me a housekey.  I also took the spare truck key.  Afterall, if He misplaced His truck keys, and couldn't find the spare key, He couldn't drive.  Actually on THIS day in 2006, we were at a doctor appointment to review medications, and I ask about the 'driving'.  Art scored 22 on the 'Memory Test', and the doctor said, "no more driving".  The important thing at this point is with all of the memory challenges, driving is dangerous.  Disorientation is very common, getting lost, and even having slow reflex can cause the person with Demtia to cause an accident.   Losing the privelage of driving is a very difficult thing for folks, because it is their line to independence.  This can be a process.  Lorain called me one evening very, very worried about Art.  Art had been gone for over four hours.  Lorain called the police, and by the time Art got home, they questioned him about where He had been.  Art got very defensive and told the police, "I was just driving around".  I can see his face displaying a ridgid jaw, and eyes widened with aggrevation as He chuckles at the annoyance of being questioned, waving his hand outwardly.   
 

Gold Diggers

October 27, 2010

You never know who your friends are, until you can't tell anymore.  That is when the true friends show up.  When I realized I was Power of Attorney for Art, my mind clicked.  Previously, I had no idea there was an Estate, no idea what being a POA involved, no idea how long Art would live, and no idea what it meant to be a caregiver 24/7.   In fact, I had no idea that any of those situations were going to become my reality.  However, I knew one thing, if Art trusted enough to name myself, POA, to his Estate, without telling me, He saw something in me.  Something He trusted.  I took that very seriously. 

There were well-meaning friends. There were mean friends too.  Those are the ones that will "take you and your stuff to the cleaners".   If it doesn't feel right, more than likely, it isn't.   Sorting THAT out, was challenging.

Just before Lorain passed away, She told me Art had a huge problem with His memory.  I wouldn't have known that, because Art was always on task when I was around.  Which is the DECEPTION of DEMENTIA.   Lorain mentioned how uncomfortable she felt at times, because Art would put things in the oddest places and then accuse her of misplacing them.  Art would get very upset to the point, Lorain was frightened and confused by his aggresive temper.  I was shocked.  But I do know, that tidbit of information played a key role when it came to taking action, in Arts' behalf.

Like I mentioned, once I realized I was POA, it was everybody OUT!!!  I needed time to review the Trust, sort out the directions of the Trust, and take steps to organize Arts' affairs.  There were people coming and going, checks were being written to random door salesman, bogus repair jobs, charity organizations, but I am getting ahead of myself......getting rid of the Gold Diggers was a process, and I had to learn how to do that, in the beginning.  People began to think I was the Gold Digger.  That was uncomfortable, for a while.

When you commit to being a 'legal representative' for someone, you must keep very accurate records, even as a caregiver.   I scheduled a doctor's appointment for Art, met the Physican and presented the portions of the 'Trust', for Medical Power of Attorney (Art had really done his homework a few years earlier reorganizing his Estate).   It was at this appointment, I was given full disclosure of Arts' Dementia status.   This is where my husband, Daryl, and I (below) sat down and had a long talk............

October 26, 2010
Today was a day of memory.  To begin writing about my experience with Art, I am reading through the daily journals I kept for three years, while caring for him.  It brings back emotions I felt even then, but with new insight now. 
Art was a World War II Veteren.  What a great man!  He was a mans' man.  His WORD was his BOND, and his WORK was his WORTH.  These are attitudes of those born of the 1900's.   Art taught me many things even before His illness.  He was a stoic man, but if He trusted you, you could TRUST He would do anything for you.  He didn't believe in 'handouts', but 'handups'.  I miss him, even still.
I continue to keep a journal.  Even after Art is gone.  The Postal Service still sends him mail, I still have to pay taxes on 2010, the IRS wants their money, and trying to recall what happened last month would be taxing on my brain.
The JOURNALING has been a tremendous assest to addressing legal issues.  Very important to do the journaling.

The Beginning

                                                                         

October 25, 2010

This is my dear friend, Art. Art passed away this

year. Art lived with Dementia.  Lorain died in 2006, after a long illness.  We'd been friends for about nine years.  Lorain was Arts' companion.  Both had been married, their spouses died and after several years, Lorain moved in with Art, so they wouldn't be alone.  Just friends.  Lorain called Art, Dad, Art called Lorain, Ma.  It was endearing.

It was 1997, Michael, my little six year old, saw a yard sale in the neighborhood and asked if He could go look.  It was new to me, to let him go about the neighborhood on his own, but I felt it was time to allow him to explore.  Soon, Michael came home and ask if he could have some money.  After a short explanation from Michael, I gave Him some money and He left to go purchase some treasures at the yard sale.  The rest is history.
Lorain, who never had her own children, fell in love with the little readheaded boy, with the two missing front teeth, and the charm of a gentleman. 
Soon, I went to meet the older couple, and realized I used to be the Avon Lady at this house, for Mary, who was Arts' wife and had passed away quit some time earler.  It is a small world........
Lorain explained to me, Michael had stolen her heart when she offered him a sucker.  Michael refused and explained He didn't have any money.  With a bit of coaxing from Lorain, Michael still refused the sucker, but insisted on going home to get some money.  He promised to return and accept the sucker, but not before Lorain agreed to hold onto a couple of items until Michael got back.  Needless to say, Michael was in a BIG hurry, when He came home to get some spending money.
The friendship between Lorain and Michael was special.  Michael contemplated their relationship, in a six year old way, and after some thought, decided He needed to have a name for Lorain.  Micheal asked me what I thought about calling her 'Grandma'.  I told Michael to take that up with Her, so He did.  Thereafter, Lorain was Grandma.  Art at this point, is still aloof to any time with Michael, but acknowledges the little redheaded boy, and offers Michael treats.  Now, the visits are more frequent, and I soon realize my other son, David, is going down to the house as well.  David is another darling redheaded boy, with a smile that can melt your heart.
This is where the story gets really special.  Art had a son named David, who died at seven years old, on his seventh birthday.  It was so heatbreaking for Art, He decided that was it!!  No more children.  My David, began to go visit Art and Lorain after Michael persueded him, because "they give you candy"!!!  When Art met David, it wasn't long before Art was 'Grandpa', to both boys.  Arts' eyes would always light up whenever David came over.  Now, Lorain and Art had grandchildren of their own.  Soon, there was Soda in the refrigerator.

Memories

October 25, 2010
I had a thought today about this blog.  What if this gets so big, and I can't help others.  That would be futile.  My intention with this blog is begin writing about my experience, and listening to the experiences of others.  I questioned whether my short three year experience could possibly be help to others?
I think it can be helpful. 
Even after Art is gone, I still live with the memories of him on a frequent basis.
This is key to taking care of someone.  Even after they are no longer with you, you will remember how you took care of them.  Memories are triggered by many things ie, foods, television shows, simple things you repeat, pictures, questions, comments, oh, so many things. 
Knowing I did the best I could, never eliminates the questions that crop up in my mind.