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

As Usual....

Yup, as usual, I spoke too soon!  Weather back to "normal" here in beautiful Michigan.  Let's see - so far today we have seen a little snow, a little frost, a bunch of wind, buckets of rain, earth shaking thunder and lightning and hail.  Yup, that seems about right for March.  I talked to my Mom yesterday.  She said it was 82 in Oklahoma and her car air conditioning wasn't working.  Just wait till she gets back!  At least the pollen is down and I can breathe.  Oh, and no tornadoes!

I was looking at the community college class list the other day and they are offering an online class on spiffing up your blog.  Since I started this I've been paying a lot more attention to other blogs and how nice they are with all the linkies and blinkies and all.  Plus, I understand that there is a way to put pictures where you want them instead of just uploading them and seeing where they show up!  So, think I will take the class and maybe fairly soon this will start looking a lot better.  I love the computer, but was not raised on a computer like kids are now and I still feel a little intimidated by all the web stuff.  But I'm willing to learn.

In the back of my mind, I have a "bucket list."  Things that I would like to do when this situation at home changes.  Right now everything I do goes through the filter of what can K do? or how will this effect him and his stability?  K has been telling everyone lately that we are going down to Gulf Shores Alabama.  I totally understand this - I would LOVE to get away for a week and enjoy some new scenery. And shrimp!!!  But I took him to Gettysburg, Pennsylvania, another of our favorite spots, last fall and it didn't work out so well.  As soon as we got there, he wanted to come home.  He wanted to stop at Hershey, so we did.  He was in the factory store about 15 minutes, didn't want to do the tour or any thing else.  Bought some chocolate and started home.  And he argued all the way home that I was going the wrong direction.  Couldn't understand that all the signs said West - yes,  he read them, yes, he knew what they said but obviously all the signs were wrong and I should turn around and head the right way - at every exit.  Gulf Shores, Alabama is an 18 hour non-stop drive.  No way am I going to drive to Gulf Shores.  I've tried to compromise with driving down to Nashville and looking around where we used to live and work.  He'll agree and then the next thing I know he is telling some one about our upcoming trip to Gulf Shores.  You know, I do want to do with him the things that would make him happy.  He really doesn't know what that might be and so he wants to relive enjoyable times from the past.  He has no comprehension of the fact that these things no longer are things that he really wants to do.

K has always been a golf fanatic.  I try every day to suggest that he go out and play at a course he has enjoyed in the past, but he always has an excuse.  I think he is afraid he won't be able to play golf.  I so hope he is wrong.  I need those golf days - when he is occupied with something for a few hours. 

So, anyway, back to the bucket list.  Ever since I saw J's pictures of swimming with the sharks, that has looked like a good idea to me.  Maybe I could start with dolphins, but still, it looked great!  I'd like to take a zip line somewhere.  A Can Am Roadster is also starting to have a real appeal to me!  If I knew I wouldn't break down somewhere, I'd like to put a Teardrop trailer  behind the Buick and visit National Parks.  I don't know what I'll do, but you know, it is fun to think about crazy, fun things to do.  Maybe I ought to start by buying a lottery ticket for that $620,000,000.  Half a billion dollars in one fell swoop!  Wouldn't that be something.

On a more serious note - K's neurologist has started him on Namenda.  It is the first med that they have seen positive results with for FTD.  It won't slow the disease, but it might help with some of the behavior issues.  K was on Aricept before he was diagnosed and I actually think it made him worse.  I'm so grateful that our insurance is picking up the tab on this one.  So far we have been incredibly fortunate with our insurance.  Hope we can do as well after Medicare kicks in in August.

Gotta go.  One last good thing in our house - The guy I hired to take care of the yard this year came yesterday!  The yard is mowed, trimmed, edged and blown clean!!  Yes!!!  What a relief that I don't have to worry about the yard this summer!  And he does snow removable as well!  Guess I really did hit the lottery!

Can it be spring?

It's another beautiful day in Michigan!  Where's the snow?  Not that I'm complaining!  The sun is shining, the temperature is wonderful.  The wind is blowing like crazy.  All the pear trees are in bloom, as are the forsythia and the daffodils.   The lilies are growing like crazy and the shoots on the roses are 4" long.  Crazy weather.

I try to take advantage of K's ocd to the best of my ability to steer him toward healthy activity.  But some times it really backfires on me.  Today, for instance.  We've been walking and he really enjoys walking to the end of the sidewalk in front of our house.  If only he could.  When the announcement comes, "Okay, dear, I'm going for a walk,"  I know we are in for an hour or more of him going out, coming in to tell me "That's not going to work," going back out telling me "Okay, dear, I'm going for a walk,"  and coming right back in to say "That's........"  You get the idea. An hour later, he might have been able to take a 10 minute walk.  When I go with him, we walk together to the end of the walk, but when we get back, he starts his routine again.  Also, he gives me the traffic report on each round.  I always hated the kids coming in and out of the house - this is much worse!  The spring on our 4 year old garage door broke last year.  The repairman was mystified - I wasn't!

When I saw Dianne, my counselor,  Monday, we were talking about how the repetitive nature of K's behavior can be intolerable at times.  I know everyone else gets tired of the same story over and over, but I hear those stories 20-30-40 times a day.  Which thrown in with the walks, the traffic and the reports each time a female with a bouncing pony tail comes by, (the Track team is training right now, oh joy) it is enough to drive me crazy.  But,  I'm not.  I've never been a terribly patient person.  Okay, okay, I hear you laughing!  But, somehow, from somewhere, I find the strength to be patient and really not so bothered most of the time.  I know where that strength comes from and I thank God every day because I know that on my own I could never do this.

Dianne said something pretty profound this week.  We were discussing K's new vanity and his heroic stories in which he is the star.  Basically she said that at the end of our lives we all look back at our lives - our regrets and our failures as well as our accomplishments and successes.  In K's case, his brain is dieing even though he is still physically strong.  But without the frontal lobe filters, rather than regrets, he remembers his past as he wished it would have been.  Although I understand this, it makes me sad.  In his own right, K was heroic.  He (and his brothers) overcame a disadvantaged childhood many could not.  He joined the Marines during the Vietnam War and did what he felt was his duty as a citizen.   He never fell for Timothy Leary's turn on, tune in, drop out retoric.   When he completed his time with the Marines, he put himself through college with the GI bill, earning a degree in microbiology.   He worked several different jobs early on.  When I met him, he had just gotten a job with Ford Motor Co at the glass plant.  Within a few years he worked his way up from taking EPA samples, sitting on top of the stack all day and then processing the samples, to being a manager in the fabrication building where tempered car windows were made.  At that point, he hit the glass ceiling - he had advanced as far as he could without an engineering degree.  He left Ford and went to work for a competitor, but within a year, we were back in Tulsa because they realized that it was his expertise that had kept the presses running and he was desperately needed.  He crashed through the glass ceiling. and continued to advance throughout his career.  K did more than he had ever expected he would when he was a young Marine.  I'd say his brothers could say the same about themselves.  Those were all highly intelligent young men.  I know now that his Mom probably was already started down this path of dementia before I met her.  I wish I had known her earlier.  She must have been a hell of a mother.  I knew his Dad longer - he was a quiet spoken man much like his sons.  I know that he was a hard worker.  And I know his son.  That's enough for me to understand the quality of people they were.

It does make me sad sometimes that there are people in our lives now who never knew him before this disease started changing him.

Another idea Dianne and I came up with was to get him to start journaling orally some of his stories.  We thought that it might give me a little break from his storytelling if he was busy doing this.  Another back fire!  He has recorded one story so far and he loves it!  So much so that he will sit and play it over and over and over for me.....I tried to get him to plug in the earphones so he could hear it better (and I couldn't hear it at all).  But he figured that out pretty quickly -"But then you can't hear it!"  Don'cha know!!!

My DD sent me a wonderful book this past week, Dementia Caregivers Share Their Stories, A Support Group in a Book.  I'll probably share some of it with you next time.  I found this bit to be so helpful:  "Caregivers need permission to be human and fallible.  When we make mistakes during out caregiving
Thanks, DD,  for a book that is bound to be a great comfort and resource!  Thanks, I needed that!

Peace and love, Mary

Exercise is Mandatory!

Yesterday I mentioned that I wanted to take yoga or tai chi.  I have a very good reason for this.

Thirteen years ago I was diagnosed with Fibromyalgia.  Even now, some people, including some doctors, don't think fibro is a legitimate diagnosis and seem to believe that the people who claim to have fibro are either hypochondriacs, lazy or drug seeking.  I can attest that these things are not true.

For me fibro is a set of symptoms that gets better or worse, but never goes away.  The pain is always present.  Before all this started with K, my pain level on a scale of 1 - 10, generally was in the 3-4 range.  The pain was there, but I could function normally most days.  And my normal is a lot of work!  I like to work;  I like to stay busy and productive.  I don't like to sit and watch tv (although I can certainly sit to read a good book!).  I always have found things to do - housework, yard work, spring cleaning (spring, summer, fall, winter, as well).  Ask any of my kids -  I have always been a clean freak!  I always said that I would not be defined by the fibro; it would not dictate my lifestyle.  And most of my life (I can find episodes of fibro to age 8) I have lived up to that.  I tried to even hide my pain from my family to the best of my ability and didn't let my pain effect the family's activities and needs.  I think I was pretty successful in that.

But fibro gets much worse with stress;  and baby, I got plenty of that.  On my good days my pain is 6-7, and the bad days are 9-10.  The worst part of constant pain is how it effects your energy level.  On a good day I can do about a third of what I used to do.  On the worse days, all I can do is huddle on the couch and wait for it to get better.  When it hits 10, my body takes over completely and I have to sleep.  I don't take narcotics for the most part.  I don't like how they effect my thinking skills, and addiction, not necessarily to the drug, but to the lessening of the pain, is a real concern.  I'm not going to spend my life,  any of it, walking comatose.  We have gone through the entire gamit of drugs that are prescribed for fibro and I don't tolerate them well.    Advil is my normal go-to drug of choice.  I try to manage the rest of the pain through sleep, rest. massage, meditation and light exercise.  Getting enough of the right kind of exercise is hard right now.  And rest seems to be poor to nonexistent.  The last time I visited with my rheumatologist, she warned me that I needed to prevent these severe flares, or I might never get better.  That scares me.

I know the time is quickly approaching when I will have to find in home nursing care so that I can take time away from caregiving.  Caregiving wasn't as hard when I could still see bits and pieces of my K left in new K.  But that time has ended.  I almost never see glimpses of K as he was before.  He is still nice in his way, but he is no longer as cooperative.  And we've had a couple of episodes lately, when I have seen stress building up in him that I'm afraid some time soon could erupt into violence.  This is a "normal" componant of FTD, but not one I've had to be concerned with in the past.  And I hope I'm wrong now, but I fear I'm not.  As long as I do everything he tells me to do we're fine.  But one day last week, my pain level hit 10 and I had to take a narcotic pain pill.  So I called in a pizza, took a hot bath, took a pill and took me and my blanket to the couch.  He wanted to go to the golf shop.  Normally not a big deal, but this time, it was.  I tried to explain why I couldn't take him, but his solution was for me to give him the keys to the car and he would take himself.  Not possible.  He doesn't have a valid driver's license any more.  We went through the same 4 statements for about an hour and I was frustrated and he was frustrated.  The very same scenerio happened Sunday - only this time I was cooking dinner because the kids were coming over to visit.  I shortened the time frame by threatening to have my Mom come and get him so that I and the kids could visit.  It didn't lower the intensity, just the time.  I could not let him ruin, or cause me to cancel, my visit with the kids.  I don't get to see them as often as I want already.

There are no medications for FTD.  However, there are drugs that can help to control some of the behaviors.  So, my dear children, before you all call and yell at me, know this.  I have the phone call into his neurologist and am ordering the proper meds for this situation.

Keeping Active

Max and his brother Mulligan
Mulligan was hit by a car after
we moved here.

I try each day to keep K active.  It is really hard to motivate him to do things.  The only exception is when he starts to do something compulsively - then it is impossible to stop him.  His latest compulsion is walking.  He walks down to where the sidewalk ends.  The sidewalk terminates at a opthalmologist office that has an American flag flying in the front.  He walks the 1/4 of a mile to the end, does a nice crisp about face, salutes the flag and returns home.  He does this 4 to 8 times a day.  He was dragging the poor dog with him, but I convinced him to leave the dog at home and enjoy his walk without that distraction.  Much better for the dog, Max.  Max is so confused by K.  Max is a timid little miniature Schnauzer - a bit of a nervous Nellie, so any change upsets him.  Of course, his nerves manifest in incessant barking that none of us enjoy.  We certainly have our fair share of change, so Max is noticeably leery of his formerly adored owner.  He still loves K and will spend hours sleeping on the couch on K's leg when K is watching TV, but isn't too sure when K is up pacing around.  Then Max hangs with me, sleeps wherever he can find me and pretends to be a dog.

We live on a busy street and two of the three schools dump traffic, walking and driving, on either side of our house.  K walks on the sidewalk that passes the football and soccer fields.  But, if there is anyone else on the sidewalk, he comes back to tell me he can't go because someone is out there, waits 30 seconds or so, then tries again.  Sometimes he comes in and out of the house 3 or 4 times before he is actually able to go for his walk.  When he comes back he tells me all about it - any cars that passed or people in the area, whether he saw our neighbors, or what our neighbors might be doing if he can't see them.  This is all fine.  I'm trying to walk with him a couple of times a day.

This week I thought might be a good time for him to start warming up for the golf season. He goes to one or another of the golf stores each day. That is to say, I drive him to the golf store, I wait in the car, he goes in for about 10 minutes and then I drive him home, usually stopping by the grocery store on the way back home. It's okay - kind of reminds me of all the times waiting while one or another of the kids to soccer, football, or softball practise, only a lot quicker. I've actually had some really enjoyable times in the parking lot at the golf shop!  I take my sketch pad with me and work on "zentangle."  One day this past week, a little bird sat on a branch outside my car window and serenaded me the whole time.  It was enough to make me want to bird watch!  I wanted to see if he was actually going to be able to play golf this summer with his friends and give him the opportunity to warm up for the season. K did pretty well. The weather has been record-breaking warm and I thought his golf buddies might be playing already. They make all their arrangements via email; I checked his email and nothing yet. I'm trying to get going to the range into his list of compulsive behaviors, but no luck yet.


I've also tried to get him to try yoga and tai chi;  Although he has enjoyed both at Alzheimer's, I just can't seem to get him to agree to give it a try.  I need these for myself.  I just have to make up my mind to go without him and get home health care to stay with him.  I know it shouldn't, but it seems like a kind of abandonment to leave him with a stranger in our home when he wants me to me here with him all the time.  I've got more work to do to get these kind of thoughts out of my mind so that I can take care of myself, so that I can take care of him.


This quote was in my daily inspirational email today:  "Compassion cures the ills of isolation with its consistent love and acceptance."  I am thankful for the compassion of others and pray God will give me compassion and patience in the role of caregiver.

Love and peace.  Mary

Thankful for Small and Big Things

What a great start to my week!  In my last post I was talking about how phone calls can really lift my spirits.  Sunday I had calls from DD, her gorgeous (and gifted - Grandma's get to brag) daughter and #2 son, who lives in Seattle.   #1 son, his lovely wife and beautiful (and obviously gifted, also - Grandma calls it as she sees it!) 3 year old daughter who has better phone skills than many teens, called me Monday just to check in.   The week was starting to look pretty lousy before everyone called.  After talking to all, I felt like it was a new day!

 I'd like to know if other pftd (ftd speak for patients with...) were badly effected by daylight savings time.

Our Sunday started out lousy - trying to get DH ready for church - we were 5 minutes late for the service.  Although he was mystified by the thought that we were late.  After all, not all the clocks were set forward and Daylight Savings Time is not a concept he understands now.  (Note to myself - next year make sure all clocks and watches are synchronized the night before.)  Another bad decision, we went to a restaurant for breakfast afterward that we hadn't been to in a while and it was packed.  So too many distractions to eat.  He wasn't able to take my sister's walker away from the table to clear the aisle  - even though that is usually his job.  Nor was he able to retrieve it after breakfast.  He was just kind of off balance and seemed confused all day.  And not in a good mood.  Bedtime was a struggle, as it is sometimes and we finally got to bed around 1:30a.  Monday was tough, too.  He stayed in bed until 1:30p;  then his energy level and mine conflicted.  I was beat by dinner time, he was ready to rock and roll.

This week just keeps getting better and better!  I picked K up from the church where he had been helping the men pick up pizza for the homeless feeding program and took him to lunch.  This is one of his favorite activities.  When we got home, we had a DVD from Brian and Meg of Meredith's basketball team playing.  Wow, Mere is fast!  and accurate!  I lost count of how many baskets Mere made.  And when she took the ball down the court, no one could catch her.  Thanks for sharing it with us, Brian and Meg.  It was awesome.  Great job, Mere!  Grandpa and I loved watching it.

The news here is not great.  I've been trying not to see that K is getting worse so quickly.  Tonight it was hard to ignore.  His memory is getting weaker.  I mentioned going to Bed, Bath and Beyond and he didn't know where or what that was.  I hadn't prepared dinner so I thought he would want to go to one of his favorite restaurants, but he didn't - just wanted a Weight Watchers frozen dinner.  Then at dinner, Fox News was on and they were talking about a political action committee that has been the absolute bane of his existence for the last few years.  I mean seriously, hearing the name would send him into a rampage just last year.  But tonight he turned to me and asked me what it was.  He really didn't know.  I seem to lose him a piece at a time.  It is hard to be "up" for him all the time, but I try.  The true blessing in this is that he doesn't know how he is changing - at least not all the time.  At times, I think he catches glimpses of what is happening, and is frightened and sad.  I thank God that those don't come often.

And I thank God for each of you.  Love and Peace to you all.  Mary

Thinking Time

I don't know about anyone else, but I do a lot of thinking when I'm vacuuming.  Can't hear the tv, can't hear the telephone.  Gives me probably the longest uninterrupted block of time I can get now.  So, yesterday I was vacuuming (read as thinking) and these are some of the things I was thinking about.

One of the biggest issues with being a full time caregiver (24 hours, not 8, like most full timers) is loneliness. Well, loneliness and exhaustion.  Everyone from the doctors to the mailman say, "Take care of yourself;  take time for yourself;  On airplanes you always put the mask on yourself before the baby (my favorite)."  I'd love to. I try to.  But the reality of the situation is that K (hubby) really doesn't do well alone for long blocks of time.  I actually have gotten invitations from friends to go to gatherings - for me.  Not for us.  I'd love to.  Try explaining that to someone who can't understand that I occasionally need to go to the doctor alone.  He really is totally unaware that he is not the same person that our friends have known for years.

I have tried to get time for myself - I spent a month interviewing Adult Day Centers and finally decided that the Alzheimer's Day Center was the best possible situation for K, even though he would not stay for more than 2 hours at a time.  Two hours that I spent at the library immersing myself in art books and enjoying the quiet.  That lasted a month.  Then K refused to return.  I don't know why, he can't explain it beyond "I don't want to go;  No, I won't go."  When he says no to something, try to get him to change his mind.  The best I and the director can come up with is to take a break and try again later, which I will.  I miss those 2 hours, 2 days a week.  It was like a mini-vacay for me.  I can sympathize with K, though.  Everyone else in the Day Center has Alzheimer's.  K paces, but with intention, not just wandering around.  You can't put him in a chair and have him participate in "discussions," or do all his exercise in a chair.  He has very limited ability to follow conversation now.  He just wants to tell "his stories" over and over.

People really don't understand why I don't always do the things they want me to do, or the things they think I should do.  I try, truly I do.  But the stress of the situation has effected my memory and my energy in dramatic ways.  When we go out, I have to constantly be aware of where he is.  If I have even a short  lapse of attention, he can be gone.  We do go out and do things - museums, plays, concerts or just shopping and he loves to go.  But for me those are times of heightened stress - I never really know how things are going to go.  But he is usually ready to leave long before the play is over, or I am ready to leave.  Even going to visit people is like having a four year old saying every couple of minutes I'm ready to go now.  When we're at home, it's a little better.  But if others have heard his story 10 times, I've heard it 50 times.  It can be exhausting having someone talk non-stop AT you.  Anyone who has raised a toddler can agree with that.

People have the best of intentions and I hear a lot "I'll do anything you need me to do."  What I need is a break from the loneliness - a telephone call, a visit, a card.  Anything that lets me know that people are thinking of us.  I know in my heart they are.  They may think oh, she has enough going on, she's probably too busy, too tired to talk.  But those are the very things that renew me.  I don't have conversations in my own home anymore.  K isn't capable of discourse any more.

If someone was going into this situation from the beginning and needed advice, I'd say - the most important thing you will need is a support system.  God truly has blessed us with all the professional support we will need for the long haul.  We have a wonderful PCP, thanks to our daughter-in-law;   wonderful attorney who specializes in just this situation;   some of the best specialists in the US; personally I have a compassionate and knowledgeable counselor and a massage therapist who not only keeps my body moving, but also listens with a loving ear.  In addition she has a sister who works in this field and now does home health care for Alzheimer's and dementia patients.  So I have a contact to get a recommendation for home health care.  I've also been blessed with a wonderful family.   I need them more now than I ever have and I know that they are always there for me.  All I have to do is see or hear from one of the grandkids to light me back up and keep me smiling for the day.

Well, I've gone on and on today.  I'm trying not to whine, but if you have someone in your life who really doesn't know how to help you, use this mess as the conversation starter.  Many, many caregivers on the support groups write these same things time and time again.

I think I'll go vacuum.  Love and peace.  Mary

Busy, busy, busy (and tired)

It's been a while since the last post, but we have been busy.  February 25 our DD came up to visit and brought her youngest baby.  We have enjoyed a fairly mild winter this year;  I've been somewhat disappointed with the lack of snow.  DD does NOT enjoy snow or winter of any kind and lives in Oklahoma where snow is a major disaster accompanied by an immediate shortage of milk and bread.  So, of course, we had a forecast of 2 to 7 inches of snow for the Saturday she came in!  It was snowing when she landed, but fortunately we just got an inch or so.  Still it was cold and that was hard enough on her!  Anyway, we had a wonderful visit.  Love her;  love her sweet baby.

DD and her dad never were close as she was growing up.  Dh was a perfectionist and somewhat stand-offish (okay, very hands off with the kids), and I don't think any of our kids consider him to have been very close to them.  He loved them all dearly, but was never very "touchy-feely."  Not even with me.  Anyway, DD is enjoying a close relationship with Dad for the first time in her life.  Dh is much more approachable now.  He seems happier than he has ever been in his life.  Dh's joy in life right now is telling "his stories," and he can tell that she wants to hear them and truly enjoys him.  As we were dropping her off at the airport, she asked her Dad for a hug and he jumped up to give her a big hug.  He has told everyone he sees that his daughter asked him for a hug and told him he is so funny.  You can see in his eyes how delighted he is with his daughter and he is proud of her, maybe for the first time.

It is heartwarming to see them enjoying each other.  She taught me a huge lesson this visit.  I need to let go of all the concerns and responsibilities and just spend time enjoying my husband while I can.  I've been thinking about my current life a lot lately.  Strangely enough, it was a book I read that first started me thinking.  In the story a young woman was raped by the husband of her best friend and found herself pregnant as a result.  She made the decision to have the baby, but to give her up to adoption without ever seeing the baby.  She denied even to herself the existence of the pregnancy and refused to feel the baby kick.  Her "life" ended at that moment.  All she could think of was when the baby was finally born, her life could begin again.  Ultimately her attitude gradually changed and she came to love her daughter.

I realized that like the young lady in the book, I had allowed myself to think my life was on hold, from the day dh was diagnosed.  I'm starting (baby steps) to try to resume my life outside of this disease that has taken hold of our household.  I found a new book that I am going to work through.  It is called life is a verb - 37 Days to Wake Up, Be Mindful, and Live Intentionally.  (There is the most wonderful poem, "Lost and Found," at the beginning that was written by David Hollies, who was diagnosed with Alzheimer's.  I would love to quote it here - but...I don't want to anger the copyright gods.  I'll email the author and see if I can get permission.)  Anyway, this is a workbook to change your outlook through daily challenges - Actions and Movement (as in, movement toward living your life with intention).  The actions are frequently free writings, which I haven't done since college, but enjoyed then.  The daily readings have wonderful titles like "Dance in your car," "Carry a small grape," and "Consider the flea."  Those titles appeal to a certain randomness I'm feeling right now.

The idea of living with intention has been popping up around me lately.  I picked up a book at my counselor's office by Dr. Wayne Dyer that proposed the thought that intention is the primary force of life.  Then I picked up life is a verb at JoAnn's, of all places, and was intrigued by it.  I actually walked away from it and had to go back to buy it the next day when I couldn't stop thinking about it.  It shouldn't have been at JoAnn's - although it looks crafty, after reading the first two chapters, it is obviously not a craft book.  I think it was there especially for me.

Well, this has gotten long.  Gotta go.  Love and peace to all.

Dr appts or how to look like a complete fool

I had to take dh to his cardiologist's appointment today.  Back when we were trying to get his FTD diagnosed, his heart stopped.  Stopped.  Dropped in the kitchen.  So, called 911, took him to the hospital.  They did a full cardiac work up, stitched up his head, admitted him for observation.  He has NO heart disease what so ever.  Perfectly healthy heart just stopped.  Evidently it happens sometimes.  So, they put in a pacemaker and he is fine.

Now we have to visit his cardiologist once a year.  Understand, dh is embarrassingly healthy and looks it.  He's a little overweight now, for the first time in his life, because of the constant craving for sweets, but other than that, he is healthy as the proverbial hog.  So, most people have no idea that he has a problem unless they try to have a conversation with him.

But I know going in what is about to happen.  And of course, it always does.  The doctor starts asking dh questions,  dh starts "telling his stories," I answer the doctor's questions, and I get the "look."  Even though I have already reminded the nurse that hubby has a little problem.  Even though she has had a heck of a time getting her charting done, because he talks non-stop, as fast as he can, about totally unrelated subjects, and she has finally given up and looked to me for answers.  The doctor wants the patient to answer the questions, not the wife.  So, I let him go.  Hubby tells his current favorite story of the 3000 marines who went into DeNang in 1968.  This is a long one.  But, I got "the look," so I let the gents work it out themselves.  It isn't until dh starts telling the doctor about his license being suspended, that the light bulb goes on and the doctor looks at his computer, then looks at me.  I nod.  And we finish the visit.  We'll repeat this episode again next year.  Hubby is still heart disease free and the cardiologist is really very good.

Thank the good Lord, I have the best medical support system I could possibly have.  I know that thanks to HIPPA, most doctors have stopped talking to family members at all.  Our PCP is a true treasure.  She takes care of me, dh, my mom and my sister and knows the whole family circumstance.  She treats dh with such compassion and respect and yet understands that she and I have to be a team so that he gets the best care we can both give.

I have been incredibly blessed throughout this circumstance and I don't doubt it for a moment.  Yes, we are dealing with a horrible disease and yes, every one in my family is suffering because of it.  But, every need has been provided in ways I could never imagine.  Thank you, God

PS - in case you get the wrong idea - I'm the one playing the fool role today!

Diagnosis

As we were remodeling the house, more and more examples of the changes that were happening with dh became obvious.  One day we were replacing door hardware and he told me that he had to take all the doorknobs back because none of them fit together right.  I took a look, put the hardware together, and installed them on the door.  He was amazed and completely stunned.  "How did you DO that?"  I glossed over the situation, but it was disturbing.  Many days he wouldn't be able to complete anything while I was busy painting.  He made repeated trips daily to the hardware store to pick up 1 item at a time.  He would disappear every time we went to the store and I'd have to hunt him down.  Odd behaviors were piling up in my mind, but I pushed them back as long as we were working and living in our "project" home.

After we were finished with the remodel, I tried to talk to him about the odd things I had noticed.  This was after we got the results from the neurophych back in Oklahoma.  He became furious and refused to speak to me.  That was when I realized that he was probably very concerned about himself.  It is also when I demanded that we find another doctor to do an assessment for us.  I should mention at this time that he has a family history of Alzheimer's.  His mother was diagnosed with Alz back in the 70's,  his brother was diagnosed with Alz in the 90's, and then we found out that his sister had also been diagnosed with "dementia" about the same time.

It took months to get into see the specialist who was recommended to us.  She did the original assessment and we had a family conference.  This is the first time we heard the words FrontoTemporal Dementia.  But she wouldn't commit to that diagnosis and wanted to  do more testing.  Dh had a PET scan to see what parts of his brain were active and which were not as active.  He also had a spinal tap to look for "Tau" in his spinal fluid.  The presence of Tau would indicate a form of Alzheimer's.  Finally, he had more blood work done than I ever knew existed.  He was tested for Legionnaire's disease, Lupus, viral, bacterial, and fungal infections, Lyme Disease, Creutzfeldt Jakob, West Nile and Fragile X.  Some I had heard of in the news;  others I had never heard of.  When we met again, the diagnosis was certain.  FTD.  Then the doctor said, "Do you have any questions?"  What!  We didn't know enough to ask any questions.  Her general overview included that FTD was progressive, degenerative, not treatable, and would "shorten" his lifetime.  She also told us about the symptoms when you lose the Frontal and Temporal parts of the brain.  We were all in shock.  Except for dh.  He just smiled and sat through the entire thing without a question.  Later I asked him what he thought about what the doctor had told us.  He said he thought she was quite nice.  (She was)

We came home and I cried.  Then I started looking for information.  There wasn't much.  I looked at WebMD,  Mayo clinic website, Googled constantly.  It wasn't good news.  I kept reading rare, little research, etc.  This was September 2010.  I also got a lot of floral info - FTD, you know.  But I found a few sites, a couple of universities that had started researching FTD.  Each site led another step forward.  Now, I'm happy to say that there are a great many websites and organizations who support families who are looking for info about FrontoTemporal Dementia.

If you are reading this and need information start at  theaftd.org  It will direct you to many other places where you will find information and people who care and are also going through the same thing you are.  They have been a lifesaver for me..

Our story continues.........

The first half of this story is on the previous post.

So the next little bit gets a little involved and confusing.  Hang with me or skip it.

The week after dh retired we drove from our home to Oklahoma for the 4th of July.  At that time, our daughter (hereby known as dd - you got it, darling daughter) was married with 2 children to a horribly abusive and scary man.  The 4th of July became known as her Independence Day (still celebrated with fireworks!) when she took the kids, ages 2 and 3, and disappeared.  We had no idea where she was and were in a panic.  After a couple of days, we found out she was in a shelter and basically in hiding from the husband.  Not to get into details, I ended up staying with her in an apartment to get her stabilized and help her to get the divorce proceedings started and to take care of the kids while she worked.  One week followed another until 3 months had passed and I was ready to go home.  Her little boy, my sweetest little 3 year old sidekick and buddy, needed his tonsils out, so I decided to stay until he was feeling better.  This was around middle of October.  He had his surgery, we brought him home late that afternoon, fed him jello and he was doing fine, a little groggy.  Pretty normal following his day in the OR.  The next morning we woke to find that he had passed away in the night.  Eventually we found out that he had passed away due to a combination of codeine overdose and sensitivity to the codeine.  That same week another little boy, 7 years old, died of an overdose from the same hospital following a removal of an ingrown toenail.  Sad, sad time.  Needless to say, I ended up staying with dd until December.

While I was still there, dh called me from a golf trip he had taken with a bunch of the good, ole retired guys.  He told me to go look at houses on a PGA golf course in the town we lived in when the older kids were growing up.  I really wasn't interested, but we had always enjoyed looking at model homes and had done a lot of house hunting due to moving frequently for dh job.  So off I went.  I thought he was just interested in what was going on in that area since it had been 15 years or more since we lived there.  We talked later and he asked if there were any houses that we might enjoy.  I said, sure.  He said, Buy it.  Just like that.  I figured he was just blowing hot air in front of his buds (he had started boasting to people and inflating our financial position a little by that time.  It embarrassed me.  But I figured it was a midlife crisis or some such).  I told him no, that if he was so interested, come buy it yourself.  And he did.  I didn't know what to think, but I had always trusted him and he didn't always give reasons for his actions, but he was seldom wrong.  I was still reeling from the sudden death of our grandson and I had also lost my Dad suddenly the previous year.  I was off balance and just let him run with it.  My newly widowed mother and my disabled sister lived in Oklahoma also and were struggling.  Our dd was still in the middle of a nasty divorce.  Our oldest son had 2 beautiful little girls we wanted to be closer to.  So it made a certain sense to move to Oklahoma from Michigan to help take care of all of the family.  So, we wrote a contract on the OK house and came home and put our dream home on the market.  I cried.

I put some conditions on the move.  Both of our younger sons were getting married summer of 2005, and I told him I would not move until after the weddings.  Telling my sons that we were leaving and moving back to Oklahoma was one of the hardest things I ever did.  They couldn't understand it.  Neither could I.  I couldn't help them understand what I didn't understand.  We bought the house in OK and listed it to rent until after the weddings.  The housing bubble burst in Mi, and we had a terrible time trying to sale our home.  But we finally sold it (at a loss) and in October we packed up a truck and moved all our stuff 1000 miles from my heart's home.  I drove our truck and cried all the way to the door of our beautiful new home.  During the moving process another little clue to the growing problem with my dh happened.  He was taking a treadmill we didn't want to the second hand sports store to sell.  After a while,  he came back with a sheepish grin.  The treadmill had fallen out of the truck and broke up all over the road.  I was too busy to think about it.  He had put the treadmill in the truck standing up and not even strapped it in!  What!  This from a guy who never made stupid mistakes.

And we lived unhappily ever after.  Just kidding!  We lived in Oklahoma for 2 years.  I developed severe respiratory symptoms and was miserable and very sick.  My Mom, bless her God loving heart,  told me that if I wanted to move back to MI, she and my sister would also move to MI to be with us.  Talk about God providing!  (Even though I didn't know at that time how much I was going to need them.)  We sold the house in Oklahoma, losing even more money, and bought a foreclosed home in the community we had left in MI.  Not in the planned community I loved, but on a busy street next to our huge high school. When our youngest son saw the house as it was, he said, you have lost your minds!  Little did he know that, indeed, we were fast traveling down that very road.  The house was a foreclosure and was trashed, but it met most of our needs and we could afford it.  And we had always wanted to "flip" a house.  And dh said he loved it.

Symptoms of FTD kept popping up while we were in Oklahoma.  Of course, I didn't have a clue about this disease.   Mostly I was confused.  My dh was slowly becoming a different man.  He bragged nonstop about one son to any one who stood still.  He became very gregarious and friendly with the neighbors and strangers (not a bad thing in and of itself, but different for him)  He continued to brag about our imaginary financial situation.  He contracted to work at one of the plants to do due diligence for a company who was considering buying it, but he told me non-stop stories praising the woman he was working with.  Good grief!  Usually when a guy gets enamored with another woman, he doesn't tell his wife about it!  He didn't get me a gift for my 50 birthday, even though my Mom was throwing me a surprise birthday party and flying in our two sons.  He was no longer the loving partner that I had enjoyed.  Mostly, he ignored me.  I thought we had severe marital problems and was considering leaving.  But then one day he couldn't use the remote to the tv.  And another day he wasn't able to program the sprinkler system.  His behavior was getting more and more erratic.  I talked to our family doctor about my concerns and she agreed to talk to him and see if he would agree to a NeuroPsychological evaluation.  To my surprise, he actually agreed.  I wasn't surprised when he refused to let me go with him or to meet the doctor.  By the time the test results were in, we had moved back to MI.  He ignored several phone calls from the NeuroPsych to receive the test results.  Finally I forced him to call, the dr mailed the test results and had a phone conference with dh - which he took in an upstairs bedroom with the door closed and wouldn't let me in.  But I got hold of the paperwork and read it and realized "Houston, we have a problem!"  In a nutshell, the dr said he was either lying (about previous employment) or something was definitely wrong.  Dh executive skills were not sufficient for him to manage anything.  He also said that without a discussion with his wife, he couldn't make any kind of diagnosis, but he recommended repeat testing in 2 years.