Wow - what a day, what a life......

I know it has been a long time, but our life just keeps on getting less and less fun as each day goes on.  I actually had to look back to see what I had written about already and what of this nutty life I hadn't exposed yet!

First, about Grandma.  She did wonderful in the surgery and was released to rehab on the Monday following her surgery on Friday.  She had a few hiccups with pain meds and her stomach, but they got that under control pretty quickly.  After spending just a little over a week in rehab, she was released to go home yesterday.  She is doing wonderful - a lot of pain as would be expected but she is doing a good job keeping ahead of the pain, just like she should.  When we went in for the family information meeting so that she could be released from rehab, it was incredible to see what she was able to do.  She can actually go up and down stairs, not that she would particularly want to.  She walks with a better gait now than what she did prior to the surgery.  She is one tough lady - and very determined to recover completely from the knee replacement and I have no doubt that she will do just that.

All of the women in nurse uniforms has been a challenge and has brought one of his "stories" to the foreground as a new favorite.  "The boss caught 6 Navy Nurses (angels of mercy, don't you know) in his room on the ship and said....blah, blah, blah"  If you want to hear the end of that story, you will have to call K!  All I can say, is boy, am I tired of those nurses.

K has been a real pill the past couple of weeks.  Last week we had an incident where he refused to stay in the house.  I've had to sit in a chair in front of the door before this to keep him in the house at night, but this time it came to a shoving match.  So before it could escalate, we went to Lowe's and picked up keyed dead bolts with the plan to have M help me install them on the weekend.  But the battle started again as soon as we got back home.  So I decided to go ahead and install the locks that night, but while I was working on one door, he was going out the other!  I wasn't able to get hold of M to come help me, so I called B, who is staying the summer to help Gma take care of D, and she came over and installed the second deadbolt while I distracted K.  We got through it, but it was very upsetting and really left me wondering if I was going to be able to keep him at home like I want to.  I think it is possible that he had a fairly rare reaction to the Namenda - agitation.  Oh, the things they don't tell you. Thank God for the internet.  I cut his Namenda dosage back to the half tab and give it only at bedtime.  It does help him sleep and then I can sleep.

Dr Shatz described his walking as a needle in a groove.  That's all well and good, but let me say right now - HE DOES NOT HAVE ALZHEIMER'S!  (and yes, I am screaming this)  All of the available material talks about distracting and redirecting the patient and they will forget the action they wanted and start doing the alternative action.  I have distracted and redirected until I have just about spun on my head!  But once he decides he is going to do something - HE IS GOING TO DO IT COME HELL OR HIGH WATER.

Case in point, today.  I had an appointment to visit with our financial advisor today.  K's companion was scheduled to take him out bicycling today.  When I started getting dressed and cleaned up, K wanted to know where I was going.  I told him I was going to get a mammogram over at the hospital.  He has NEVER gone with me when I have my annual mammogram, so I never dreamed that would create a problem.  He decided he was going and he wanted to leave before Cheryl got here.  I told him no, men are not allowed to go back with women to get their mammogram.  But he wanted to go.  Cheryl came, with her bicycle loaded on the rack;  I had gotten his bike down from the ceiling rack and aired up the tires;  they had planned and looked forward to biking together.   He would not go with her.  I called the office and told them what was going on and they told me to come whenever I could.  So I told him I cancelled the appointment.  He would not get out of the car.  He sat in the car, in the garage, until finally Cheryl and I came in and watched out the window to make sure he didn't take off.  When he finally got out of the car, he came in, wouldn't consider going anywhere with Cheryl, sat in the chair with his arms crossed over his chest and stared at me.  No way was he going to give me the opportunity to get in the car and go anywhere.  So I cancelled the appointment, rescheduled and Cheryl and I discussed how to try again.  She said that she had never had a patient she couldn't redirect.  I desperately need to talk to our financial guy in light of the Ford buy-out proposal, but I also have to do it by myself and not be distracted by this sh*t.   Argggg!  Help someone!  I am accepting any and all suggestions on how to deal with a 65 year old, 200 pound, 3 year old.

There are times when our situation is scary.  Scary financially - after 37 years of planning carefully to provide for our senior years and now all that planning is out the window.  Scary physically - he is getting less and less controllable and I fear I will soon have to concern myself with his strength versus my strength.  He wins, hands down.  Scary emotionally - will we become so isolated by this disease that we lose relationships, even family relationships, as people become more uncomfortable by his behavior.  It is what it is.  His behavior is not under my control, not under his control, either.  This damn disease is robbing us of everything.

Someone on the support board wrote simply,  "Today I was a nasty, nasty caregiver."  FTD is not Alzheimer's.  When I do become overwhelmed sometimes with the struggle, and lose my temper at him, I know I am just normal, but I also know that, at least right now, he remembers everything I say and do.  I wish he had Alzheimer's.  Even though they forget their family so much faster that the FTDp does, eventually FTD steals the memory as well as the speech.  But meanwhile we have so many more behavior problems to deal with;  it is tough beyond any one's knowledge who isn't going through it.

BTW, I now have to attend his every walk.  It will be good for me eventually, but right now I bought new tennis shoes, wore the wrong socks with them and bruised my toes.  Ouch.

All my love to all of my lovies.  Mary

Say what??

Just a very short note.  I have to get to bed - I have to be at Grandma's house in the morning at 4:15 to take her to the hospital for her surgery.  Boy, am I praying this knee replacement will help her.  I just wanted to tell you one of my newest blessings - K's companion, Cheryl.  She is coming tomorrow to stay with K, so I can stay at the hospital.  K wanted to go with me, but he would want to leave again immediately as soon as he ran out of people to talk to.  It feels wonderful to know that Cheryl will come, K will be safe and very happy to see her and I will be able to be where I need to be.

Bad headache today - K was talking and talking and talking and I finally asked him to be quiet for a while so my head wouldn't hurt so bad.  He said, "I can't be hurting your head - I'm a pain in the ass!" Sometimes he is still so funny and it feels good when we can laugh together.

Odds and Ends on a Wednesday - that is now a Friday!

Good day, friends and family.  It has been a busy, and sometimes productive time, since my last post.  I want to finish the story of our Nashville adventure and catch you up on the latest happenings here.

Front of the house and the second iron gate

So, after visiting the monument to Major David Wilson,  we set our GPS to find the intersection I had found on the Internet where the Wilson family cemetery was supposed to be.  We found the intersection way out in the middle of nowhere and turned onto Hix Lane, a winding dirt road.  At the end of the lane... a beautiful 8-10 foot high red brick fence with an iron gate, a beautiful  red brick federalist style home, a call box and many, many Do Not Trespass signs.  K, being K as he is now, said, "Let's climb the fence."  Okay, that's an idea, but possibly not the best one to make nice with the homeowners.  So I walked over to the call box and tried to call the house.  No answer and it was looking doubtful that we were going to be able to see the cemetery, as it likely lay beyond the fence, but we couldn't see it from where we were parked.  I left a message and figured oh, well, not going to be able to see it this trip.  As I was walking back to the car, a lady came out from the barn, so I turned back to talk to her.  She could not have been nicer and was so thrilled - we were the first Wilson's to ever come by their house.  She opened the side gate, told us to drive around to the cemetery, stay as long as we wanted, and then come back to the barn where she and her husband were working.

The Wilson Markers

The cemetery was back on the far side of the 5 acre lot that was fenced.  It was surrounded by a chain link fence and beside the gate was a old, old hay baler.  There was a path mowed back to it, but the rest of the field and the cemetery were knee grass/weeds.  We got out and then had to stomp the weeds down to get to the stones themselves.  We found the three marked Wilson stones, stomping a path all the way.


The three Wilson's buried there are:

V. Z. Wilson  b. 6 May 1759 d. 9 Aug 1840
(female)

Samuel Wilson d. 11 Aug 1849
Aged 50 yrs 1 mo 5 days

John Wilson b. 7 Dec 1759 d. 23 Oct 1836

Plaque Reads:

REVOLUTIONARY 

SOLDIER

John Wilson

1759     1836

PLACED BY
Col. Jethro Sumner Chapter
D.A.R.

It was really neat to locate these stones.  In total there are 24 stones in the cemetery;  the oldest is John Wilson's and the most recent is Fannie C. Hix, d. Aug 30, 1964.  We found one stone in the very far corner of the cemetery that we couldn't read at all, but seemed to be older than the other Wilson stones.  When we talked to the homeowners later, they said people believe that it is the stone of Major David Wilson, but it seems strange that the D.A.R. would put a bronze marker on John's and not do the same for David.  Most of the engraving is eroded away on these stones and I was very upset that I didn't think to bring materials to do rubbings to try to get the engraving from the stones.  I didn't realize that I didn't take a picture of the last stone, but as we stomped around we could hear movement in the weeds and I really didn't want to meet any of the other inhabitants of the place - like by a snake bite or something!

When we went back to the house, the lady had brought out water bottles and lawn furniture and we set down and visited for a little while.  Of course, K told his usual military stories, but I had told the lady about his dementia and they couldn't have been nicer.  They told us a bit about the house.  David Wilson started the house in 1790, completed it in 1794, and died in 1804;  so he only lived in it for 10 years.  The land itself, 2,000 acres,  was granted to him by George Washington for his service in the Revolutionary War.  According to a congressional report written by Secretary of State Thomas Jefferson in 1791 for President George Washington, this land grant #3 was still Indian land in the 1780's.  The couple, Mike and Brenda Scott, told us that the house had been occupied continually since it was built and also had been a military mustering area for the Civil War, World War I and even World War II.  They said that one day an 80 year old man had shown up at the gate and told them he was a child raised there and remembered seeing soldiers doing battle practise, tanks, and even airplanes on a strip that the government built.  They apologized for the condition of the cemetery, but explained that they traveled a lot and hadn't got caught up since they had returned from their latest tour.  It soon became obvious that they were in the music business - country music.  And of course, I know less than nothing about country music!  Mike named off several bands that I am sure most people would recognize.  He plays the banjo and sings and also does gospel music.  They were actually leaving for Israel the next day!  Anyway....they gave us their phone number and also their face book page and said to tell any relatives that they would be thrilled to have any Wilson come to see the cemetery.  Mike said that he had gone through the county archives about David Wilson and the house and that they were fascinating and very complete.  He encouraged us to go down and look into them and maybe we will at a later date.  I'm sure it would be amazing to see the records on that land and family.  I would have loved to see the inside of the house, but we weren't invited in.  We were strangers after all and they had been more than gracious, so I can't complain.

If anyone is interested and wants to go to Tennessee, I have their contact information and will be happy to share it with you.  Meanwhile - you can "meet" them on face book - search for Mike Scott Fan Page.

After all that we had a smooth trip back home.  K was pretty disoriented by the trip, but I think the change of venue was good for both of us.

Since we've gotten back we've been uber busy - helping grandma clear things out to have wood floors laid in the condo, helping grandma put things back into place after the carpenters were done,  helping get ready for grandma's company visiting from Oklahoma last week.  We had a wonderful visit with old friends and new.  K and I went to the Imax and saw The Titanic in 3-D - it was awesome!  My favorite scenes were the actual underwater images of the Titanic at the beginning of the movie.  Now I want to see Titanica in 3-D, which is more about the finding and analysis of the ship today.  Then we took grandma and her friends to see the Titanic exhibit at the Henry Ford.  We had seen the exhibit in Chicago years ago, but it was still awesome to see things that had lain on the bottom of the ocean for almost 100 years.

This weekend we are going to Greenfield Village to see the Civil War Muster for Memorial Day.  I hope we see some of the men Jason re-enacted with way back when.  That was a great  group of men who really enjoyed history and mentoring a young man who also enjoyed history.  We've been blessed so many times with wonderful people coming into our lives.

It has been a very stressful week this past week.  K walks all the time - down past the soccer fields at the high school and back the other way to the union hall.  All day.  Every day.  I was concerned when he started telling me that he was making comments,  innocuous comments, to students running by.  He would ask them if they wanted to have a Navy Seal teach them how to run.  Of course, he didn't mean anything by it, but in society today, that could be misconstrued as a inappropriate remark.  So, I figured that sooner or later this would become an issue.  And it has.  First, someone at the union hall called the police to have them check K out.  He had wandered into the hall a couple of times (that I knew of).  So he came home and told me an officer had stopped him and wanted to know who he was, where he lived, what he was doing.  Even though that was as far as it went, I knew I needed to call the local PD and explain the situation, but really, that's a tough thing to have to do.  Wednesday, I sat down to call the PD, the phone rings and it is an officer, letting me know that he is with K at the soccor field.  I briefly explained the situation and invited him to come on down to the house and I would talk to him more in detail.   Officer DeYoung and I had a very good conversation.  He is the Police Liaison Officer for the school.  The school had notified him of a potential problem.  After we discussed K's disease, he took the information I had to give him, our phone number, my assurance that I know at all times where he is and what he is doing.  Officer DeYoung will get back with the school and let them know what the problem is and I'm sure there will be conversation with teachers, coaches and students about this.  That's okay.  If people know, then I can continue to let K have a little bit of independence for a while longer.  I've wanted to walk with him, but he never wanted me to, and I understand.  But yesterday he let me walk with him and I'm going to start taking him to the city park for us to walk at least part of the time.

K had an EMG done last week and a follow up visit with Dr Shatz this week.  The EMG (nerve conduction test) showed no change since the last one a year ago.  So no concern yet of motor neuron disease.  Dr Shatz did a brief testing to see how K was doing in comparison to the more complete testing in December.  He is continuing to decline (yeah, I kind of knew that).  It is very hard now for him to attend to conversation at all and I know that many times when I try to tell him something, he doesn't understand me.  Dr Shatz added Seroquil to his meds - it will calm him down, and allow him to sleep.  I talked to Dianne, my counselor, and she said it is very effective for OCD symptoms, which his walking is and is also sedating.  It sure is.  I gave him half of a 50mg pill at 9p Wednesday and he didn't start pacing until 4p the next day.  So, hopefully this will help us both.

We've had quite the disagreement lately over him leaving the house after dark.  I discussed this with Dr Shatz and the social worker.  There are several things I can do for now.  I can switch out our deadbolts to keyed locks on the inside and not let him have a key.  I can change the alarm code so that he can't turn off the alarm and it will let me know as soon as he opens a door (he left one night as soon as I got in the bathtub.  I found him - smirking like the typical teenager).  I can install "confounding" locks on the doors that I can open and he can't.  I hate this, but I have to keep him safe and if I can't keep him safe, he can't stay at home.  I think this is the issue that caused his Dad to put his Mom into nursing care.  That and the hostility.  That hasn't been a problem for us yet, but it could be if he is confined to the house.  I can see a lot of walking in my future.  That's okay - it will be good for me!

It's been a stressful week and I've had some real lows the last few days.  But today I've pulled my big girl pants up once again and I'm marching on.  I hope you are all doing the same.

Love and blessings, Mary

Hello, dear friends and family,

Okay, I have been trying to get my pictures onto a contact sheet so I could show more than one pic at a time, but the gods are against the idea.  If I keep trying, I'll never post again!  And I've been told that's not good -----so here we are.

Has it really already been two weeks???  Time flies when you are having fun!  And we have had some fun lately.  K and I drove down to Nashville on Thursday,  April 26 to check out our old stomping grounds.  It has been 15 years or so since we lived in Brentwood so we knew things would have changed - but boy did things change.  It was late when we pulled into the Embassy Suites in Brentwood, so we called that a really long day and after a few meeting of the minds sessions, we went to bed.

Friday, we got up raring to go - Okay, I got up, went down, had breakfast after trying to get K out of bed.  I brought breakfast back up to him and after waving coffee and doughnuts under his nose for a while, K made it up also.  We decided to go take a peek at out old house first.  We found it after a few turnarounds - surprise!  The road no longer goes straight past our neighborhood and on to Franklin - it dead ends at a gated home.  The house looked older (somewhat as we do!) and not as well cared for as it was, but it was still there.  The neighborhood was about 3 times the size it was and all the wooded areas above our house were developed.  Wilson Pike (and yes, turns out it is named after us, can you imagine) now curves and goes to a High School complex larger than PCEP.

Carnton in Franklin, TN 

225 Unknown Confederate Soldiers

We went on to Franklin and the Main Street area was mostly unchanged - the stores were different, but at least main street was recognizable.  Tons of antique shops - we shopped until the dust got the better of us and then decided to look up the Carter House and Carnton.  For the uninitiated, there was a huge and very bloody battle during the Civil War in Franklin and these are 2 historical houses that were here during the battle.  We found the Carter House, but something was going on and it was packed, so we went on to Carnton.  Carnton found itself just about in the middle of the melee and was made a hospital for the Confederate army.  Carnton is the setting for a book, The Widow of the South,  about the mistress of the house and the work that she did there during and following the war.  (It's a good read and a wonderful story of devotion and perseverance.  I highly recommend it.)  Anyway, when we were living in TN we took most of our house guests through both of these houses and the Historical Society was starting to plan the restoration of Carnton.  I was excited to see the changes.  I had a  talk with K about the tour and how he would need to behave during the tour and he agreed he could handle it and wanted to see the house.  I was so proud of him - I know how hard it was for him to not talk and not tell his stories to all the people around us.  But he did it!  He respected the fact that the woman who was giving the tour was working and not just chatting as it seems.  I gave the tour guide one of our cards and told her we might need to leave the tour early and she was very understanding.  But we didn't have to and what a joy it was to see him try so hard to be respectful of the situation.  K has always had a strong work ethic and respect for people's work and I got to see that aspect of him again for a little bit.  The restoration was complete and beautiful and some of the stories had changed as they learned new information about the family.

The two pictures you see are K at Carnton and also at the largest confederate cemetery on the grounds of Carnton.  The story of Carnton tells of the establishment of the Confederate Cemetery and how Carrie McGavock spent her life trying to identify each soldier buried there.

Major David Wilson
and Corporal Kaye Wilson

 To the Memory

Of

David Wilson

1742 - 1804

Major.

Continental Army

Pioneer Settler

Legislator

Whose Name

Wilson County

Proudly Bears

By the end of Friday K was ready to come back home.  So we planned to find the memorial to Major David Wilson in Lebanon, TN and the Wilson Cemetery in Galatin, TN on Saturday and head on home.  We had read about both of these in the family history K's brother D shared with us a couple of years ago.  First stop was Lebanon, about 30 minutes away from Brentwood.  Lebanon had a website, so I kind of knew where we were headed.  I also found that it is nicknamed the Biggest Antique Town in America - our kind of place!  There were a lot of shops and we tinkered about for a bit, asked a few people if they knew of a monument to Major David Wilson in town without any luck until we visited the last little shop.  The owner there knew about the monument, but said Lebanon had built a new Courthouse and he wasn't sure if the monument had been moved, but that there was a memorial monument there that was new and gave us directions.  We drove over to the courthouse and the first thing we saw was a new memorial to all the Lebanon veterans who had died from WWI and later.  Disappointment!!!  But we walked around to the front and there it was!  Wow!  It is hard to imagine that we lived in TN for 5 years and missed this entirely!  It was really exciting to find this, but the day was about to get even more exciting!

Hey, these pics are going in better than I had expected!  Ha!  Well, I want to post this tonight, so.....

.........to be continued

Love and blessings, Mary

Tuesday Travels

Today was Tuesday - better known as old retirees golf day.  I had an opportunity to talk to Scott today at the golf course and got the word from the group.  Poor Scott was so uncomfortable telling me that they have decided that they are not going to call K every time (that is, email him) they play, but would call him from time to time.  He said K is not really able to play golf very much - he doesn't know the rules any more, doesn't know which group he is supposed to be with and isn't able to keep his attention on the game.  I suspected that would be the case and I appreciated Scott letting me know.  He said it is very stressful to have K play with them.  I told him I understand and I do.  It's just another loss to face.  It is so hard to loose him just a piece at a time.  He's been pestering me to let him buy a new set of irons - I don't think so.  It will be surprising if he even plays out the rest of the golf season.  I was sitting out in the parking lot of the golf course, reading and sketching, even though I knew it was way too early for them to have finished 18.  But I forgot my phone this morning and didn't want K to worry about where I was.  Sure enough, I only waited about 15 minutes when he showed up.  They had played 9 holes and that was enough for him.  He looked exhausted and it isn't even hot outside yet.  He continues to walk obsessively back and forth in front of the house, so he is getting some exercise.  He still won't let me go with him, but I think he will allow it sometime.  I'll just have to be patient.

We are leaving Thursday to go to Nashville for a couple of days.  I hope we get to see a show, but I know how the trip to Pennsylvania went - we got there and he wanted to come home.  We'll play it by ear - not that there is any other way to play it!  Plans can be swept away if he refuses to do something.  One plan that I think will hold his interest is our plan to visit Lebanon, Tn, where we hope to find the 8 foot granite monument to David Wilson, an ancestor who died in 1804 and from whom Wilson County gets its name. Promise to post pictures if we find it!  I'm also thinking we could drive out to Gallatin, TN to see the Wilson family cemetery.  It is someone's backyard - something we found to be very common when we were living there.  Of course, we'll have to look up our old house - off of Wilson Pike in Brentwood.  Wilson, Wilson everywhere!

I finally talked to Cheryl again - our soon to be companion and friend.  I got two glowing referrals from her, after a little confusion!  I'm looking forward to starting off with her as soon as we get back from Nashville.

I've got a really good idea for Father's Day or for K's birthday.  I've been researching the medals/ribbons  he actually would have received or been eligible for and I am planning to have a presentation frame made up for him.  If any of you kids would be interested, I would be happy to make it a family gift to him.  I think he will be very excited and touched.  (of course, the medal of honor will have to be missing, but you can't just go out and buy that thing at Target!  ha ha ;-)  He did tell me the other day that when he got home after he was discharged that he dumped his marine coat and it's medals in a trash can at the airport.  It actually rang true.  That probably wouldn't have been such an unusual thing at that period of history.  Who knows at this point?

Love and peace, Mary

Again, it's been a while.  I've gotten somewhat discouraged the past few days and didn't really want to share with you all so much.  But, discouragement is another aspect of this life we are living.  It seems that everytime I start to see some progress in our schedule that might provide me with some respite, it's one step forward and two steps back.

I was so excited about C, the potential companion for K.  She was scheduled to come for the first time on the 12th - when I spoke with her on the evening of the 11th,  I asked her to bring the referrals she had offered the first time we spoke.  I didn't hear from her again until Wed. night.  She dropped off the referrals yesterday - but I have some definite concerns now.  One of the letters is unsigned, on plain paper from the Director of Social Work at Huron Woods Assisted Living.  After  I verified the phone number actually was Huron Woods, I called and got voice mail that gave the right name.  I left a message and I so hope he calls me back.  The other paper she brought was the second page of a letter she had obviously written to the family of a patient who had passed away, telling stories of times she had shared with the patient.  Nice, but not a referral.  I don't know.

I've also been discouraged by the Namenda trial.  K now sleeps longer and longer, but when he gets up he is HYPERactive.  VERY HYPER.  Talks literally without stopping - hardly to breathe.  Goes on walks dozens of times a day.  Counts tires on cars going by - out loud.  Nothing at all holds his attention for more than 30 seconds at a time.  I had a hyper child once (Love you!), and I didn't do well with the situation.  I'm not doing well this time either.  I feel like the kinetic energy he exudes sucks my energy into a vortex.  My nerves are shot, my head is hurting and I am trying to be patient.  It certainly isn't his fault - damn disease.  I told him he was driving me crazy and he said - "That ship has already sailed!"   Oh boy, he's got that right.  I need a pill!  He needs a pill!  I have a call into his neurologist to let her know the Namenda seems to be a problem.  But, I haven't heard back yet.  And of course, his 3 month supply of the stuff came in the mail yesterday!  Gee Whiz!  (and I'm starting to sound like Beaver Cleaver!)  What a mess.

Yesterday was K's first day of golf for the season.  I'm not quite sure what happened, but he only played 9 holes and then called me to come get him.  The rest of the guys went on to play the back nine.  I can't get the story straight - each time he talks about it I get a different version.  I can't tell if it was his idea to leave early or if someone might have encouraged him to leave early.  He seemed unsettled by the situation, but wasn't able to vocalize what had him unsettled.  I didn't belabor the story - no point in making a situation bigger than it might be.  If there was a problem of any kind, hopefully one of his friends will let me  know.  He may have just lost interest or gotten tired.   BTW, the golf course was on the Redford/Detroit city line.  It looked nice enough and K said it was nice, but it was a little disconcerting when I realized that the "fireworks" I was hearing was actually gunfire from the shooting range across the street - hundreds of shots!  Evidently the police academy training range was there.  I wasn't sure if that made it safer (lots of potential officers nearby) or more dangerous (lots of inexperienced shooters nearby).  But everyone seemed to be whole and not leaking anywhere!

We are thinking about driving down to Nashville next week and checking out our old stomping grounds.  K wants to go to Gulf Shores, but that is just too far for me to drive, especially with the nonstop sound track.  Hopefully the compromise will satisfy him.  Yesterday after golf he said he wasn't going to take his clubs, but today he is saying again he wants to play the Robert Trent Jones trail course in Birmingham.  Again, he says that playing Carnton in Franklin will be fine sometimes, and other times he insists we're going to Birmingham.  I know he wants to relive good memories of playing with B in Alabama, but the reality doesn't live up to his daydreams.  He does get frustrated when he can't do what he thinks he can.  God love him, I can't imagine what that realization must be like for him.  Thank God, it only comes in glimpses for him and isn't a constant in his life.

Sorry for the whining - I may indeed need a little cheese with that wine.  Tomorrow will be better....or at least different.

Love and Peace to all, Mary

Happy Easter!

Hi!  I know it's been a while since I last wrote.  The past week or so has just flown by.  I hope you all had a wonderful Easter.  Our Easter service Sunday was a true blessing - the best Easter service I have ever attended.  The music was incredible, the pastor gave a truly inspiring sermon.  Our pastor has been with the church only since December and I wasn't sure about him.  I like him and his wife very well as people, but the sermons have left me wanting more.  Not now!  And the music raised the hair on your arms.  I'm really glad I went.

I had to make a decision as to whether to go to church or not Sunday when K didn't get out of bed.  I hated leaving him there, but I really wanted to go.  And, after the no-holds barred pep talk and Caregiver Bill of Rights I received from the coordinator of a new support group I went to last week, I really felt like I could go without him and I wasn't being mean or selfish.  I reminded him every 10 minutes or so as I got ready that I had to leave at 8:40 and I'd like him to go with me, but he had to get up and get ready - in a nice tone of voice.  And when I had to leave, I gave him a kiss and told him I would see him after church.  When I got back home he was still in bed and wanted to send me on a guilt trip, but I just hugged him, told him about church and went in to fix him breakfast.  So, I was pleased with how that went.

from A Caregiver's Bill of Rights:
     "I have the right:  to maintain facets of my own life that do not include the person I care for, just as I would if he were healthy.  I know that I do everything that I reasonably can for this person, and I have the right to do some things for myself.

Matt, Jackie, Emmy, Mom and Donna came over for dinner.  Emmy hunted candy-filled eggs we had hidden just before they got here.  Unfortunately, Max, the dog, started the hunt early!  He thought he had gone to doggy heaven when he stole an egg, took it back to the bedroom, and ate the candy out of it - paper and all!   That "dirty ole egg-eatin' dog," spent the rest of the day looking under every chair and table leg looking for more loot and growling at the coffee table.  Unfortunately, he was caught after the first one and didn't get any more!  Darn dog.  We had a great time.  After everyone left, K went out for his "walk."  I was busy doing dishes and the first thing I knew he had been outside for longer than I liked.  Usually he is just standing in the driveway.  But when I went out he was no where to be seen.  I jumped in the car and drove his usual route and didn't find him.  As I pulled back up to the house, to my relief, he was at the garage door.  I don't know how I missed him, but we agreed no more after dark walks.

K started on Namenda two weeks ago.  The neurologist thinks I should see some improvement in K's behavior on Namenda.  He will start week 3 of a 4 week titration pack in a couple of days.  So far, I'm not really seeing much difference except he is more agitated than ever in the evening (starting about 4p).  He talks so fast and at such a high pitch sometimes that I can't even understand the words.  DD told me that that is called "Push talking" and he is actually thinking so fast and trying to get out his thoughts so fast that his mouth can't keep up.  His sleep habits seem to be changing as well.  He stays in bed until 11a most mornings.  (I asked the lady who gave the talk at the support group about it and she said "accept it."  I guess it just goes along with all the rest of it.)  He's been waking up during the night more often as well.

The good things I have noticed since he started on the Namenda - Sunday after everyone left, K actually helped me clean up.  He picked up glasses and cups around the room and brought them into the kitchen for me to clean.  He hasn't done that type of thing in a while.  He also brought me a cup of coffee the other day.  His mood seems more stable and he isn't badgering me the way he was there for a time.  Hopefully these are indications that the Namenda is working.

I attended a new support group this past week.  It meets the 1st and 3rd Friday of the month at a church a couple of miles from the house.  There were 10-12 people attending and a woman whose mother also has FTD gave a talk on dementia and how to achieve a more cooperative result from the person who is receiving care and a little different thought process to approach care giving.  She had some very good insight into the viewpoint of the patient and ways to better understand why the person might be doing what they are doing.  Her handouts helped to illustrate practical ways to apply the concepts she was teaching.  I said the coordinator had a no-holds barred attitude and boy did she.  When we went around the circle to talk about our situation, she introduced me and then asked me what had I done to prepare myself for care giving and surviving our situation.  She reminded me that 50% of caregivers die before the patient and then handed the conversation to me.  Thank goodness I had some good answers for her.  And thank God that I do have many of the fundamental tasks taken care of.  She asked and I was able to answer - power of attorney for health care, poa for financial, advance directive, living will, etc.  Those things are all in place and I feel so fortunate that we did them before we got to this point.  The question I didn't do as well on - I don't get as much time for myself as I need to, but I'm working on it.  Support groups are so very important and I hope I've found one that fits my needs.

Another advance to report on - I've been in contact with my massage therapist's sister who does in home dementia care.  She came by one day last week so that we could meet and I hope that she will work out. K seems to like her and is looking forward to seeing her again.  She just lost a patient she had been working with for 4 years, so she has some time available.  I want to start with just a couple of hours once or twice a week until I feel more comfortable with her.  She likes to take people out for coffee or to go where they like to go.  She talked to K about going to the driving range and maybe teaching her to hold the club right and hit balls.  He perked up at that.  Her last patient was a airforce pilot and he liked to go to the airport and watch planes land and take off.  She tries to tailor the activities to the interests of the person.  I hope that she works out and that we can have a long term relationship with her.  She is certified for dementia care and works through an agency as well as a few private patients and has also worked at memory care units. I'm feeling pretty good about this, but I'm anxious to check out her referrals and get started.

Well, that's it for now.  Love and Peace to all.  Mary