Still trudging along...

Well, it's September and Dad still hasn't moved to the new West LA Veterans Home.  Our family is scraping up the extra money he needs to pay for his care.  But I'm starting to think that we might need to move him temporarily until the VA opens... $700 extra is what he needs per month and that is just too much.  Ugh... moving. 

On another note, Dad has scabies AGAIN.  This is his 4th or maybe 5th time... I don't know because I stopped counting.  I walked into his home to pick him up for a routine Psych visit and took one look at him and knew.  He was scratching in all the same places.  Luckily since we were going to the VA clinic already, I begged and pleaded to be seen so that we could get the medicine he needed for his skin.  Success!  I saw the problem, tackled it, and solved it all within hours!  All with a baby on my hip and one eye on the old guy with Alzheimer's!  Sorry for tooting my own horn, but normally the Scabies situations are much more drawn out.  (Although, the Nurse Practitioner didn't think it was scabies -why is it so hard to diagnose?- and I politely told her that I disagreed.  At this point, I know exactly what it looks like and how my Dad reacts to it, plus I did find out later when we arrived back at Valley View Gardens, that another resident also has Scabies.)

Scabies is highly contagious but I have never contracted it from him... my main worry this time was Emry.  I made sure she had absolutely no contact with him, and I probably washed my hands 20 times that day.

Dad also had another staff infection but this time in his armpit and it was really painful.  We opted to go to urgent care instead of sitting for hours at the VA ER.  $200 later, they gave him a very painful injection of Lidocaine, lanced it open, squeezed the heck out of it, and sent us home with an antibiotic and an order to come back two days later.  Again, I washed my hands countless times that day.  

Anyway, wish there was more exciting news to tell.  The Alzheimer's Walk is less than two months away and we're having a big fund-raiser at the end of the month.  More info on that coming soon!

Below is a picture of Dad and his favorite nurse at the VA Clinic in Whittier.  She is so good to him.  Thank you Vanessa!

Meds, Meds, Meds

 (Wish I knew what was going on in that head...)

Anyway, so many developments in the last 48 hours.  Mostly good in the sense that we have solutions to the problems for now.

I was kind of afraid to visit Dad's home alone because the Head Nurse was clearly very annoyed with me on the phone even though I did what she asked (refill the Xanax) and could do nothing more until it arrived.  In her defense, I didn't return her phone call the other day mostly because I had no news for her, but I know that added to her frustration.

Our conversation with her was a mixture of confusion and frustration on the part of all involved.  Turns out, they have Xanax.  I was so bewildered... what does she want from me?  Isn't that what she wanted?  After 10 minutes of the most dizzying conversation both my Mom and I said, "But you have Xanax?  We don't understand?"

Bottom line is that the Xanax is not working and they were so mad that we were not there to take him out of the home and to the Mental Health Department.  Turns out the VA does have an urgent care Mental Health Office that will take Walk-Ins.  So, I promised we would take him the very next morning.

When we arrived at the Mental Health office the next day, I was informed that they don't take walk-ins.  But here I was, young lady with a baby and a Dad with Alzheimer's and I told her that his home could possibly kick him out because of his behavior.  They took pity on us.  Plus Emry kept smiling at every person that passed by.  How do you say no to that?

We were seen pretty quickly and everyone was incredibly helpful and NICE.  That makes such a difference.  I gotta say, I'm really starting to Love the VA. 

After we started going through all his medications, we found out that his Seroquel had been discontinued.  This drug helps with anxiety, sexual behaviors, sun-downers etc.  Dad had been doing so well on it and I have no idea why his Psychiatrist DC'd it.  

(The psychiatrist it turns out has really screwed things up.  We had talked about discontinuing ONLY the Xanax at Dad's last appointment.  It looks like he did the Seroquel instead.  BUT, Valley View Gardens has hand-written notes from the Doctor saying that he discontinued the Ambien.  What the heck.  Get it together!)

Long story short, because I really could give much more detail.... we got that medication reinstated for now.  Although, when I got it refilled, they only gave us 10 pills.  So, now I need to figure out how to get more.  Plus, Valley View Gardens still needs a bunch of paperwork from the Doctor's.  So, I called Dad's Primary Care Doctor but they had no appointments until August.  This morning I called twice asking if they had any cancellations and viola! we got an appointment for 2:00 this afternoon.  I'm determined to get this all behind us, get Dad back on the right meds, and keep the peace with Valley View Gardens.

Below is a pic of Grandpa and Emry and a video of Dad....

On top of everything else...

On top of everything that I just posted about Dad's aggressive behavior, I did hear back from the West Los Angeles VA home about a possible move-in date.  The facility did not pass the government survey, but has since made the corrections that needed to be made.  Apparently they are hoping to get the okay this week.  I have no idea when move-ins would start, but I found out that Dad is #13 on the list.  Here's the catch -- they are only going to take 1-2 residents per week at first so that everyone can adjust properly.  That means Dad wouldn't move in for at least 6 weeks from when they start moving people in... and we don't even know when that will be.

So let me sum up all the aspects of my Dad's life that stresses me out.  No Money.  No move-in date.  Aggressive Behavior.  Dad is jeopardizing the only good thing that he has right now: Valley View Gardens -- who have been more than accommodating with his budget and behavior.

Mom and I are going over there shortly to talk to them.

A Friend of mine also sent me a link to an article about Veteran's homes sitting empty... like the one my Dad is supposed to move into.  Click Below.
Veterans Homes

Going Mental....

Not good news today.  Actually terrible news.  We've been trying to get Dad's Xanax refilled because his behavior is becoming more difficult for The Valley View Gardens staff to deal with.  He won't cooperate to shower, or get dressed, or basically do anything that he doesn't want to do and he responds by trying to hit or punch the staff.  Megan and I both know that even though he is 72 and has severe Alzheimer's, Dad can still pull out that mean, scary side when he wants.  He even hit one of the pregnant staff members the other day.

The Xanax is taking forever because it was discontinued due to the fact that the doctor didn't want him on Ambien, Seroquel, and Xanax all at once.  So, I had to request that it be renewed, then it had to be refilled, and then it is supposed to arrive in the mail.  There is nothing I can do to speed up this process... we are in the hands of the VA, and that's how it's done.  Anyway, it still hasn't arrived, and his behavior is getting worse. 

So, I got a call today requesting that I take him out of the facility and into the mental health department at the VA.  I'm not even sure where to start with this request.  First of all, where is the mental health department?  Will they just take a walk-in?  And what will happen to him there?  Are they supposed to keep him overnight?  I am trying to get Dad's psychiatrist on the phone who prescribed all the above medications and get his opinion.  

I wondered why I was handling all this so well at first, but once I got off the phone after venting to my Mom, I burst into tears.  But it didn't last long because I stole a glance over at my 4 month old daughter Emry who was giving me the most sympathetic look... I swear if she could talk, she would have said, "It's okay Mommy."

Wait... Just talked to the Doctor while I was writing this and he says that taking him to the Mental Health Department will just result in them giving him a sedative or shot of Xanax and then releasing him -- basically a waste of our time.  He also says that the staff just needs to learn to deal with this behavior (which I agree with, but we don't want my Dad to get kicked out).  We have the okay to increase his dose of the other two medications until the Xanax arrives.  Apparently it was refilled last Thursday, so I don't know why it's taking so long to arrive...

Alzheimer's Walk Kick off Event!

It's that time again!  Getting ready for the walk!  I have updated the link to the right, and that will bring you directly to our Team Page for the Long Beach Alzheimer's walk where you can join our team, make a general donation, or even donate for a specific walker!  I am already recruiting people and I think we're going to have our biggest walking group so far this year!

As last year's top Fundraiser for the Walk and as Co-Chair of this year's Alzheimer's Walk, I had the privilege of sharing our story at the Alz Walk Kick Off Party two days ago.  I want to share it with my readers.  It's a wonderful way to revisit our family's story and our many reasons for walking!  So enjoy!  :)

(Picture of Me, Blake, and Emry in purple for the Kick off Party)

"Tonight is all about energy!  I hope we’re all getting excited for the walk this October!  It will be here before we know it.

I’m reminded every year that with a disease that can make many of us feel so helpless, we can find empowerment in participating in a walk and fund-raising!  And that was my motivation last year!

This is only my third year walking, and while I’ve had many distant relatives battle with Alzheimer’s, it wasn’t until I became the main caregiver for my Dad, that I became more involved.  I never thought that at the age of 26, I would become the decision maker in my Dad’s life, and ultimately his main caregiver outside of his home.

So, I started a blog called, “The Upside to Dementia” (which is also my team name).  A quick note about myself, I am an actress and singer, so I’m not what you would call shy, and I love to share our story with everyone that I can.  I find it very therapeutic mentally and emotionally, and it has also become a useful tool when fundraising.  Because people are witnessing the daily struggle of Alzheimer’s through my blog posts, they become more passionate and involved when the Walk rolls around every year.  So, I’m happy to say that last year, my team raised $4850.  I was blown away by the support of loved ones, as well as the support of others who have their own relatives battling with Alzheimer’s.  I’ll will speak more about the fundraising, but first want to tell you a bit about our story….

My Dad first showed signs of Dementia when he was 65, and now 7 years later, he is in the advanced stages of the disease.  Financially, it has been challenging to keep the level of care that he needs, and we had to move him to a cheaper facility, and from there, he will hopefully be moving into a new Memory Care Facility at the Los Angeles Veterans Association.  As many of you know, any change in the daily routine of an Alzheimer’s patient is tough, and these moves deteriorate his condition each time.

Fortunately and unfortunately, my Dad is physically very healthy and relatively young, so it seems we will get to witness every terrible stage of this disease.

My Dad was at first forgetful, then paranoid, then confused, and then a mixture of all those and more.  And I will never forget the day I walked into his mobile home and was almost knocked over by the most foul smell.  After searching everywhere, I finally noticed the microwave door was just barely cracked open.   Inside, I found a forgotten piece of raw fish sitting in a bowl with flies swarming around it.  It had probably been there for a few days.  That was when we knew he needed professional help.

After a couple months of having a caregiver watch him for a few hours every day, we knew he needed 24 hour care.  When we moved him to a board and care, he climbed out the window and ran away in the pouring rain.  Luckily we found him pretty quickly since he was the only person walking the streets in the rain.  When we moved him to a locked Memory Care facility, he still managed to escape and the police found him a few miles away.  He had a gash in his head and I met the ambulance at the hospital where we sat for 5 hours just to get stitches.  He has also ran away from his current home after a gate was left open by gardeners, but was found safely by a stranger in front of Vons.  I think it’s safe to say, we have an escape artist on our hands! 

Since moving him to a facility, my weeks have been filled with anxious phone calls, visits, weird behavioral problems, doctor’s appointments and basically just the maintenance of all the necessary aspects of his daily life. I always reiterate to people that Alzheimer’s is so much more than just memory loss. 

And while I have a lot of responsibility, ultimately at the end of day, I am not a full-time caregiver because he lives in a home.  The amount of respect and admiration I have for full-time caregivers is insurmountable. 

But, like I said before, the financial toll of this disease is probably one of the most stressful parts. Payments for care are estimated to be $200 billion in the United States in 2012.  So, we are just one in millions of families dealing with this issue.  After July, my Dad’s savings will have run out.  He has a $700 gap in what his care costs per month and what his income is every month.  (And, he has really affordable care in comparison to most.)  I thank God that he was in the Air Force and has qualified for SOME veteran benefits, and I am waiting for the call for when he will be given the okay to be transferred to a new facility run by the Veterans Association.  In the meantime, I’m not sure what we’re going to do.

So here I am, age 29, married, with a brand new daughter (who, I have to say is probably the youngest volunteer that the Alz Assoc has ever had!), and my Dad cannot enjoy the years of being a Grandpa.  He barely noticed my pregnant belly, and most of the time looks right through my daughter as if she isn’t even there.  The other day after greeting her with a “What’s up, dude?”, he then called her a “cute little booger”.  Any little sentence that comes out of his mouth and actually makes sense is the type of memory I have to cling to.  They are funny and sweet, but by no means are the typical memories of a Grandpa spending time with his one and only Granddaughter. 

When I look at my life, I realize that many aspects of it have evolved from this connection to Alzheimer’s.  I am thrilled to be active in the walks and with the Alzheimer’s Association.  I have also started an Entertainment Business called The Sassy Songbirds, where we perform for Alzheimer’s patients and seniors in Memory Care, Assisted Living Facilities, and Retirement Communities because I’ve seen first hand how the power of music can raise my Dad’s spirits.

So, when I think about our situation and the situation of many of American dealing with Alzheimer’s, I get fired up.  I get fired up when I think that

5.4 million Americans are living with Alzheimer's disease.

&

One in eight older Americans has Alzheimer's disease.

& most of all:

Alzheimer's disease is the sixth-leading cause of death in the United States and the only cause of death among the top 10 in the United States that cannot be prevented, cured or even slowed.

That is scary.

So, the name of our Blog may seem strange (“The Upside to Dementia”), but my family has no choice but to find the upside to our situation.  My Dad’s sense of humor has remained fairly intact and we have many funny stories of lost shoes, naked episodes, or just crazy moments facilitated by my Dad.  Laughter, music, and dance have become a coping mechanism for us, although tears, frustration, guilt, and hopelessness are usually lingering nearby.  But, I will tell you the biggest upside (because there are a few when you look at the glass half full):  Because of Alzheimer’s, I have more of a relationship with Dad today than I had 10 years ago.  

So, yes I’m walking for my Dad, but ultimately, I’m walking for everyone who has yet to get the disease.  I think of my future.  My sister and I used to joke after yet another interesting visit with my Dad, that someday we’ll be the ones sitting in an Alzheimer’s home together driving each other crazy.  It’s not really that funny, but it’s quite possibly the truth.  It’s too late for my Dad, but what about the next generation and the next one after that?

So, my motto, when it comes to fundraising is this:

It never hurts to ask.

Throw a party, have a raffle, talk to your neighbors, reach out to friends on Facebook…. Get people involved in your story.  This disease doesn’t just affect Seniors & Baby Boomers… no one is off-limits.  You’ll be surprised to see how many people you know who are affected by this disease! 

So, let’s get fired up for our loved ones, let’s get fired up to fundraise, and let’s get fired up to Walk to End Alzheimer’s."

Now What?

I feel like someone is playing a mean joke on us.  In the past year, Dad has had a broken nose, Scabies, and a Staff Infection... now he has a Hernia.  I guess we're just going down the list of all the most annoying reasons to spend time at the doctor's office.  His Hernia is intermittent, so it is not always presenting itself, but when it does, my Dad is in pain.

Two weeks ago, we spent two straight days in the VA ER trying to assess the problem.  The first day, we got seen after 3 hours, but they couldn't find anything wrong with him at that point.  The next day, with my baby in tow, we waited 4 hours and I finally gave up.  We went home without being seen.  We decided to make an appointment for the following week and to just treat Dad's pain with Tylenol in the meantime.  

His options at this point:  Surgery or Live with it.  Basically the doctor does not recommend surgery for my Dad (I have to agree that it would be pretty awful for all involved).  She wants to fit him for a type of mesh belt that he can wear under his clothes to keep the hernia in.  It's pretty clear to me that he will have that off in two seconds flat.  I really don't see a good solution to the problem.  We have an appointment in a week with General Surgery to see about this 'belt'. 

Still no word on when he can move into his new home... July is upon us... the last month that he can afford his care at Valley View Gardens.  Come August, he will be about $500 short.

Picture of "Cowboy" Dad hanging out in the ER...

"In the near future."

I got a call back from the West Los Angeles VA regarding the imminent opening of their new facility.  When I asked when they thought they would be opening, the response I got was, "In the near future."  Wonderful!  With details like that, we are all set to go!  Right.

Apparently the facility is waiting on one more licensing document, and once they have that in hand, then they can schedule the final inspection, which they are almost confident they will pass.  There are a lot of 'ifs' and 'whens' in this scenario.

When all those 'ifs' and 'whens' are accomplished, move-in dates will start the following week.  I was also told that they will be moving in 'war-time veterans' first, then possibly spouses of those veterans, and then 'peace-time veterans'.  As I'm sure you've guessed, my Dad falls into the last category. 

Before hanging up with the admissions officer though, I asked her to put a note in my Dad's file requesting an earlier move in date due to financial need.  I hope they take that under consideration.

So, I'm not really sure why I'm not more stressed about the situation considering my Dad's bank account will only be able to afford his home through the month of July.  I guess there's just not much I can do about it at the moment.  Just have to be hopeful that the stars align just in time.

"What's up Dude?"

Megan was down from San Francisco for the past few days, so we paid a visit to Dad.  I said to her before we left the house, "I wonder what Dad will be wearing today...".  You never know.

We walked into Valley View Gardens and found Dad holding a huge tennis shoe in his hand.  (Dad wears a 7 1/2 normally).  We looked down and saw that he had a sock on one foot, and a mismatching tennis shoe on the other foot without a sock.  What is going on here? 

We tried taking the shoe out of his hand (which had the name Carl written inside of it), but he was adamant that it was his.  A little grumpy actually.  At this point, I'm a little annoyed because only a month ago, I bought two new pairs of velcro tennis shoes for Dad and a pair of slippers.  Why isn't he wearing his new shoes?  Or better yet... where is the mate to his shoe?

I guess what happens is that the staff is constantly washing his shoes because he either pees on them, or they begin to stink because they can't get him to wear his socks.  These shoes are from Wal-mart and are only going to hold up to so many washes in the washing machine.

We get to his room but before we can deal with the shoe situation, Dad announces he has to pee.  Megan leads him to the toilet and once he is done, she had a heck of a time getting him to wash his hands.  He kept wanting to hug Megan and said, "But you're so beautiful.  I'm so glad to see you.... etc".  Megan is repeating over and over, "Wash your hands.  Dad, let's wash your hands."  He really can't take any direction at this point.

Getting him to sit on the edge of the bed to put socks on is just as difficult, but Megan is finally able to get socks on both feet and we find the matching shoe.  She is almost about to put it on him when we realize that both shoes are for the Right foot.  Oh man.

All the while, I had been holding baby Emry and Dad finally looks at her and says, "What's up Dude?"  I find it so funny that Dad can most of the time look right through Emry like she's not even there, but then randomly notice her and blurt out whatever is on his mind.  The women residents go crazy over Emry and one kept walking up to us and asking, "How much do you want for him?"  (they all refer to her as a him).  We were cracking up because she would walk away, and then we would see her approaching again and she would throw out the same line.  

Megan told Dad that it was good to see him and he answered, "it goes both ways".  Haha.  He was actually pretty funny yesterday.  As we were about to leave, we see this tall resident with only one shoe on.  We assume he is Carl.  

Below are pictures from our visit with Dad yesterday.  Oh, and he has a new lady friend...

Already June?

Here we are... it's June and Dad is still living at Valley View Gardens.  Remember when we thought he would be moving out around February or March?  Sick joke.  We got through the obstacle of getting him accepted into the West Los Angeles VA Memory Care Facility, but now it's a waiting game.  All I know is that his money will get him through the end of July at his current home, so I REALLY hope he gets to move before August.  I'm hoping to get some more information this week.

Quick update on Dad's health/TB test:  Last blog I wrote that he tested positive for TB and I was worried how this would affect his admittance into the new home.  Well, his x-rays showed no trace of Tuberculosis (like we thought) and we had the doctor sign a letter to the VA explaining his results.  I felt confident that would do the trick.  Also, Dad's crazy staff infection on his wrist is mostly healed.  I'm glad we were diligent with treatment and I'm glad it's gone.

It's been very quiet on the "Dad" front lately and I've barely been over to visit him since we had the TB test done.  Happy that things have calmed down a bit.

A Positive that's actually Negative....

"You don't want to make anything easy for me... do you, Dad?"  Dad slowly turns his head, looks at me, and giggles.  Evil!  :)  At that moment, I had both my children in the car... Dad and baby Emry.  It was a juggling act, but I survived.

There has been a new development in the Alzheimer's Soap Opera that we live in.  The VA facility that Dad was accepted into called to ask for a TB test because they are hoping to open "in the next month."  (whatever that means...?)  But good news anyhow.  So, I took Dad to get a test.

When I picked him up two days later to get the test read, the staff at Valley View Gardens was convinced he had a new abscess on his arm, but once I once I looked at it, I knew it was his TB test.  Dad was going to test positive.  

When I brought him to the Doctor's office, they confirmed my suspicion.  So, we have to go back on Monday for chest x-rays.  Dad tested positive last time he got the test, and they informed me that once someone tests positive, then they will always test positive.  So, apparently, we could have gone straight to the x-rays and skipped the whole test... That would have saved a couple trips, but now we know.

What we are worried about though, is what this means for his move-in date for his new home.  We're just hoping this doesn't delay things.  He most likely has latent Tuberculosis, which just means that he was exposed to it once, but doesn't have it.  Cross your fingers for good x-rays!

A similar story

I just wanted to share the link to an Alzheimer's blog that I've been following recently.  It's a friend of a Facebook friend who writes the story of her Mom's ordeal with Alzheimer's.  I absolutely relate to this day-to-day observation of the disease... so many things that her Mom does are so similar to my Dad.  It's just nice to know that some of those strange habits or funny moments are shared... even across the pond (as they live in England).  I can't help but make numerous comments on her posts...

http://twosocksonefoot.wordpress.com/

Enjoy!

A Helpful Hand!

Due to the abscess on his hand, his assessment at the VA, and regular check-ups, Dad has had 6 doctors appointments in the last two weeks.  My Mom (who lives an hour and a half away) and I were starting to get overwhelmed juggling Dad and my 1 month old, Emry.  So, we made a phone call for a helping hand, and we were relieved at the outcome!  My sister Megan flew down from San Francisco in a flash to help out the family!

The abscess is finally getting better after two ER visits and two follow up appointments.  Let me tell you though, that thing was nasty.  They never confirmed that it was MRSA, but we were still very cautious.  I would get text pictures from my Mom and Megan of what it looked like while it was draining... the morbid side of me couldn't help but look at the picture, but mostly I just wanted to gag.  Lucky for you, I like my readers too much to share the photos.  :)

Dad has been so sweet and patient during this whole process.  Thank goodness!

a HANDful

Poor Dad can never seem to catch a break... and neither can I!  He has proven to be a HANDful this week.

I got a call on Monday from his care-givers who were concerned about a possible bug bite on Dad's wrist that had caused his whole hand to swell up.  Since it's impossible to get an appointment at the Veteran's Assoc on the day of, or even the week of, we had to settle for the VA ER.  Ick.

Of course, I have a newborn who should not be going into any sick environment, so luckily Grandma was able to drive up from San Diego that afternoon to watch little Emry. 

When I saw his hand, I was glad that we were taking him to see the Doctor though.  The proof is in the pictures... this was from Monday...

His hand was extremely swollen, red, and almost hot to the touch.  He was obviously also in some pain. 

The whole stint took about 4 1/2 hours out of my day, but Dad was very patient... more patient than myself who just wanted to go back home.  (I'm a nursing mother, and I was starting to get uncomfortable!... it really was the last thing I wanted to do that day!)  The nurse took a look at Dad's wrist and was glad we came in because since the abscess (as they were now calling it) was near a joint, it needed to be watched carefully so that it wouldn't spread and cause some real damage.   They sent us to the pharmacy to collect Penicillin and a drug that treats Staff infections and gave instructions for his home to apply hot compresses 3 times a day to the wound.

Fast forward to two days later at his follow up appointment.  (And, yes, every time I have to take him to an appointment, I am trying to figure out what to do with Emry.  I'm starting realize that with a newborn, it's basically impossible for me to do it all alone.)  We had a VERY early appointment so that my husband could stay home to watch Emry and just go late to work.

The Nurse Practitioner that we saw was still very concerned about Dad's wound.  Basically it could be a contagious Staff infection called MRSA.  It was still hard as a rock and hadn't started to drain, although the swelling had gone done a bit.  She warned me to wash my hands very thoroughly since I have a baby at home and also told me that the minute it finally starts to drain, that we will need to go back to the ER so they can cut it open and drain it!  Oh GEEZ.  And that the most important thing was for the hot compresses to be applied throughout the day.  I'm not sure how successful his care givers were in actually getting Dad to agree to hot compresses...  This next picture is at his follow up appointment.  Still looking very red and angry...

So, I'm just waiting for the phone to ring again for when we have to take him back to the ER.  Poor guy.

Success Indeed!!!

We would like to share the good news!!!  Dad was accepted into the West Los Angeles VA Memory Care facility!  Three business days after his assessment, we received the letter in the mail!  I couldn't believe it!  It just seemed so simple and matter-of-fact.  After this entire process, we're so happy to have some stability for Dad's future.

Now if only they would announce the opening date of the facility.

Success... in my opinion!

After my last blog, I think everyone was nervous for our Assessment at the new VA home in West Los Angeles, but I'll get right to the point... THE DAY WENT VERY WELL!  Success!... in my opinion at least.

The facility is big, clean, and brand new with wide hallways and delicious food.  Despite terrible traffic on numerous freeways, we arrived just a few minutes late and were able to get a bite to eat with some of the assisted living folks.  I got shrimp cocktail, Dad got cod with rice and veggies, and we finished off with chocolate covered bananas and strawberries!  Wow!  Oh, and Dad was eager to eat everything on his plate, so he grabbed a slice of lemon and ate it like a slice of orange.  When I looked up and saw the look on his face, I knew immediately what he had done.  Then he pointed to the lemon and stated that it was "spicy... watch out".  Hahahaha.

Our "tour" really just consisted of visiting one of the rooms.  The rooms are designed for roommates, but there is a wall down the middle of the room, so each resident has their own private area, tv, shelves and cupboards... they only share a very large closet and bathroom.  The room we saw actually had a distant ocean view.  Apparently The Memory Care area where my Dad would be living is on the 3rd floor but has a couple terraces so that the residents can spend time outside.  

I was most worried about how the staff would approach Dad and how he would react.  After dealing with his current home, which is supposed to be well trained in handling Alzheimer's patients, but clearly is not, I don't trust anyone.  Well, I had nothing to worry about... because it appears that they know what they are doing there!  What a relief.  The Social Worker walked right up to Dad, spoke loud and clear, shook his hand and Dad was delighted.  He even patted the guy on the shoulder while shaking his hand.  They spoke privately in a room for about 4-5 minutes and then I was allowed to join them.  After speaking with us for a while, it almost seemed that the Social Worker was watching us with a slight sadness in his eyes at our situation.  He was seeing a 72 year old man with moderate/advanced Alzheimer's sitting with his 28 year old daughter... both in good spirits, but both obviously dealing with a very frustrating disease.

Basically the same thing happened when we saw the Nurse and the Doctor.  Dad handled all of it really well, and I answered all the questions once they realized he couldn't.  

It really felt like the staff was approaching my Dad's application in the manner of 'when he gets accepted, not if', so we left with high spirits.  The only bad news, is that it could still be 3 months before the facility opens, but we're hoping it's sooner than that.

Below is a picture of us celebrating that the day went well.  

And of course, as promised... a picture of Dad with his Grand-daughter Emry!

Assessment

We have some movement in Dad's ongoing future housing/financial prospects.  As I reported a couple of months ago, we had completed his application to a Veterans Association facility for Alzheimer's Patients and were waiting for the next step.  That next step is today.  The Assessment.

Dad's appointment is at 12:15 today at the new facility and will start with a tour and then end with an assessment by 3-4 different people.  We're all a little worried.  If you count from when we pick him up at Valley View Gardens to when we drop him off... this is shaping up to be a 6 hour excursion for my Dad.  (A 2 hour excursion is pushing it for someone at my Dad's level.)

The biggest worry is that the letter we received in the mail states "The assessment portion will begin at 1:00... and should be completed by 3:15.... The assessment includes sharing information with a physician, registered nurse, and social worker individually." And apparently I'm not allowed in the room with him.  Um, Hello?  What kind of answers or conversation do they think they will get from an Alzheimer's patient?  And two hours?  It's difficult to keep his attention for 10 minutes.  And I'm also worried about his mood or if he will be scared to go into a room with a bunch of strangers.  There are so many unpredictable factors that make us uneasy.

So, the truth of the situation:  this is our last hope.  It has to work.  Dad's money runs out soon, and this is the only place that will work with him financially and give him a decent place to live.  There are no other choices.  This is it.

Cross your fingers for us today.  

On a personal note... Dad's Grand-daughter was born on March 10th.  Emry Phebe Hardin is beautiful and healthy and will get to meet her Grandpa today!  It's also my husband's 30th Birthday today!  We have a lot to celebrate.  Hopefully that will continue to be true after Dad's assessment.

Sweet and Funny

Just wanted to share a picture we took last month of "Grandpa" sort of acknowledging my 8 1/2 month belly... very sweet.  (I am almost 40 weeks now, and baby girl will be here very soon!)

It's also very amusing to find out what kind of outfit Dad is wearing on any given day... the following are two examples of how the staff is probably avoiding a tense situation by just letting him wear whatever he wants to wear....  Cracks me up every time.  I call this picture "Gangsta style" since he has one leg pulled up to his knee and the video below showcases Dad dancing in pajama pants with some random, thin, button-up sweater that is definitely not his.

My list of advice...

I always thought that if I turned my blog into a book, I would include a list in the form of an 'afterward' of what I've learned while going on this journey with my Dad.  This list would include advice or what to expect...

When I hear about friends who are about to embark on an Alzheimer's journey with a relative, I feel compelled to share what I've learned.  It's possible that if I was armed with some of this knowledge, it would have helped. 

A recent conversation with a friend has prompted me to make my list.  Make of it what you will... and feel free to add your own advice in the form of a comment.

My list is geared more toward finding a facility that works for you etc... since I don't have a live-in Alzheimer's patient, I don't have much to add in the area of being a full-time care giver at home.

(I would say the first 3 on this list are incredibly important)!!

1.  You may not think that your relative's dementia is "advanced enough" to be in a lock-down, Alzheimer's facility, but chances are that by the time you have started considering that option, it's absolutely a necessity.

Our Dad was 69 years old (relatively young for an alzheimer's patient), completely ambulatory, very talkative/active, dressed himself, put his dentures on... etc, so we thought that he just needed partial supervision and care.  We learned the hard way after he ran away from a non-secure facility.  In reality, since we were not around him all the time, we had no idea how bad things had gotten and how much he needed that secure environment.  His safety and our peace of mind became more important.

2.  Once your loved one is taken out of their personal/familiar environment, and placed in a home, you will inevitably see a decline in memory, confusion, or behavior.  This is normal.

My Dad could no longer clean his dentures, he was confused about where the bathroom was, and he was constantly trying to escape among many other things.  Every move results in a decline.

3.  Move your loved one to a facility close to you.  There is no point in keeping them far away just so that they can stay in a familiar city or town.  A move is a move is a move.  Whether it's down the street or across the country, your loved one will be equally confused and upset about their new home.

When we moved my Dad, he automatically forgot where he had lived for the past 20 years and instead could only remember his childhood home in Pasadena.  In some of the worst months after the move, Megan and I would need to visit him up to 4 or 5 times a week, so it was imperative that we be nearby.

4.  Do not allow your loved one to take his/her valuables to their new home.  They will get lost or 'stolen'. 

Unfortunately, there were two items of value that we are sorry to have lost.  A turquoise watch and ring that we let him take with him.  In a home, many of the residents "shop" in the other resident's rooms.  My Dad was a big shopper and we always found things that didn't belong to him.  Naturally, things get moved around and none of it is done maliciously, but we couldn't expect the staff to take care of my Dad AND all his things...

5.  Once you truly do believe that your loved one needs help, trust your instinct, gut, and intuition.  

With this disease you learn quick and you learn to quickly trust yourself.

6.  Listen. And Agree.

When my Dad would get upset about his living situation, we would usually try to change the subject.  But once we learned to listen to him, and re-assure him that we will fix the problem tomorrow, he would become happy and trustful again.  He wanted to be heard and he was happy when we agreed with him.  There is no explaining or reasoning with an Alzheimer's patient.  Appease them as much as you can in the moment.

7.  Use the things that they hold dear.  By talking about their hobbies or loved ones, they are able to keep a sense of who they are for a while longer.

Any time we talked about The Dodgers, Fishing, Frank Sinatra (or any music for that matter) my Dad came to life and felt like himself again.

Dad also likes to laugh and tell jokes... and even if we had no idea what he was talking about, laughter went a long way every time.

8.  Be prepared for anything and everything.  This is the most unpredictable disease.

9.  Form a relationship with the care-givers at his/her home.

10. Don't be too hard on yourself and don't let guilt get in the way.  There are professionals who know how to deal with this disease and that's why a home can be a wonderful place.  You have the chance to spend quality time with your loved one instead of being their full-time caregiver.  

(For those of you who are full-time caregivers... your strength, commitment and love are immeasurable.  And I commend you for that.)

Please feel free to add your comments and opinions.  :)

Daddy's Girl...

All parents have hopes, dreams, and expectations for their children.   These may include playing sports, or being a lover of the arts, or having a positive outlook on life, or going to college… (hmmmm, maybe I should be using the word AND instead of OR). :)  So, while Blake and I find that we have many hopes for our quickly arriving little girl, I have one that I am extremely excited about.  I want our daughter to be a Daddy’s Girl.  And she will be, because I know that Blake will be the type of Father I never had.   

It’s difficult for me to remember my Dad as just one type of person.  I have 3 “Dads” in my memory.  The first Dad was fun when he wanted to be, but was also extremely scary, depressed, and an alcoholic.  This lasted until I was about 14.  The second Dad was happier and began to mend our relationship by reaching out to us and being more affectionate.  As a teenager I was put off at first and eventually learned to appreciate it.  But by that time, I was so busy doing all my activities that I didn’t make him a priority and then I went away to college.  The third Dad started when I was 22, and it’s ultimately what he is today.  Obviously there are various stages of Alzheimer’s and he progressed pretty slowly but it feels like it’s been years since I was the daughter, not the caregiver. 

Let me be clear though…  our Dad ALWAYS loved us and continues to love us today.   Of that I’m certain.  We just had a strained relationship.

Obviously this was the way life was meant to be for us, and I don’t get upset thinking about it because it shaped me into who I am today.  And it will shape the future that I want for my Daughter.  She will have the relationship that I didn’t have….

My daughter will be able to look at her Dad with admiration, love, and respect.  She will be able to go to him when she’s upset or needs to feel safe.  He will challenge her in her schoolwork and coach her soccer team.  He will help shape her into a beautiful young woman who can debate politics, but also be the life of the party.   I know the man I married, and nothing is more important to Blake than family.  The future I see with the two of them is endless.  And I’m so excited. 

Megan and I talk about how we missed out on that type of special relationship.  We wanted someone who would check the oil in our car before we headed back to college, or who would give an approval of the new boyfriend, or who could have an intellectual conversation with us.  But hey, it’s life.  We turned out all right!  And it’s not like we didn’t learn anything from our Dad.  Because of our strained relationship and this wonderful disease, Alzheimer's, he has, in a roundabout way, taught us to forgive, to take care of family, and to look for certain attributes in a partner.   Those are pretty important lessons to learn.

Oh, and I’m pretty certain that as a Grandfather, he would have had those Father attributes that I always longed for.  It’s just too bad he never got that chance.  He doesn’t know I’m his daughter.  He doesn’t know what the word daughter means.  And at 8 months pregnant, he hasn’t even noticed my belly.  He’ll never know or understand that he is a Grandparent.

A Visit from an Old Friend... :/

A visit from an old friend... SCABIES.  Yep, Dad has scabies again.  Woo Hoo.  He had it a year ago for the first time, and then he got it again this past September.  I fought hard in September to get Dad the oral medication as well as the cream, but they would not oblige me.  I told them that our past experience with the rash/skin mite was that it didn't go away easily and we spent hours and countless appointments to eradicate the problem only to find out that the oral medication worked quite well in the end.  This was the snooty response I got from the nurse practitioner in September, "I've been a nurse for 20 years, and I know that the cream will work just fine."  RIGHT.  Well, it's possible that that same case may have been dormant for the past few months and then resurfaced again this month. 

Anyway, we got a Derm appointment at the VA which was not easy to come by, and we actually requested it back in September... so when I turned out not to be available to take Dad to this appointment, there was no way that we were going to cancel.  (Because the VA reschedules you on their own time, and that could be forever...).  My Mom luckily was able to fit this errand into her hectic end-of-year work schedule where she tries to see the majority of her clients one last time before the holidays. 

Long story short, between the two of us, this appointment took a total of 4 1/2 hours of our time.  And because of that, I was able to meet them at the VA after my Sassy Songbirds performance.  The wait to see the doctor was long, and then the wait for the pharmacy was even longer and didn't even result in us leaving with the medication.  The doctors totally over-reacted, some left the exam room afraid of the contagious nature of this skin disease, and when I found my Mom, they had freaked her out so badly that she was wearing gloves trying not to touch my Dad.  I tried to wear the gloves, but I couldn't do anything with them on... like eat or check my phone, so I took them off.  It's true it is contagious, but I've never gotten it from him, and it's kind of hard to get an Alzheimer's patient to follow you through crowds in a government building without putting a hand on his back to guide him. 

So, gloves or no gloves, we were hanging out in public for 2 hours at the pharmacy waiting for Dad's medication and sitting next to a guy that kept yelling, "Wish we had a TV in here!!!" every ten minutes.  His motto was that if you didn't make a noise, then nothing would get done.  We always meet interesting people in the VA.  :)  Maybe if I yelled that my Dad had a contagious skin disease, then we would have gotten his medication on time. 

I got the Oral and Cream the next morning and brought it to Valley View Gardens.  Just wanted to share some photos of Dad's arms and what Scabies potentially looks like...