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...

Dad's future housing prospects....

 (doesn't Dad look handsome?!)
So, I'm not sure I've shared our housing plans for Dad's future fully to our audience.  As most of you know, his savings is quickly running out, which is why we had to move him to Valley View Gardens in the first place.  They gave us an amazing deal/discount at $3000/month (compared to $4200 at Whittier Place).  That is a steal for Alzheimer's care.  We all know now from my recent blogs, that their so-called "Alzheimer's Care" isn't top notch and they aren't experts in the least, but we gotta take what we can get.  Three months into him staying at Valley View, they were supposed to raise his rate to $3500, but since we have shared our desperate financial issues with them, they haven't raised their prices on my trouble-making Dad.  I'd like to divulge my Dad's SS and Retirement income versus the price of care on the blog so everyone can be learning just as we are how expensive long term care is even if you have some moderate monthly income, but we all know that it isn't the smartest idea to put all that out on the public web.  But, I'm sure you get the idea...

Anyway, the Veterans Association in West LA has been working on opening a Memory Care facility within their new skilled nursing home for a couple years now.  We were smart enough to get him on the wait list a long time ago, and we've stayed on top of their progress.  When we moved him to Valley View back in July, all we knew was that the VA was hoping to open this new facility some time in February 2012.  So, our plan was to make Dad's savings last until then.

My mom has made many phone calls to the VA asking a million questions and she has also stopped by a few times.  Because of our persistence, we started the application process nice and early, which turned out to be a positive since there were many steps to getting it completed.  This application was a thick packet with many sections to it.  Once we turned that in, they needed a copy of his DD214 military form, then they needed a recent physical, then they needed his medical records, and then they needed to see Dad's original DD214 form (don't know why the copy didn't satisfy)... FINALLY we got the letter that his application was complete!  Now it's a waiting game. 
(the picture below is my elated face when I made my final trip to the post office to send in the last part of Dad's application)

I'm assuming that we're not going to hear anything until after the holidays, but we're hopeful.  And we've kept Valley View Gardens in the know about all of this and they are willing to work with us if February turns into March... etc. 

If all goes as planned, the move will be a little challenging as it will land right in my last month of pregnancy (I'm due March 2nd), so we'll find a way to make it work -- Megan, My Mom, Husband and our amazingly supportive family will I'm sure step up as usual.

A big THANK YOU  to Ani at the VA admissions office who took our many phone calls and questions, and who ultimately helped us get everything in order for my Dad's application!

ARE YOU KIDDING ME?

So, my newly insomniac Dad was pacing the hallways at Valley View Gardens the other night.  

The staff handled it the wrong way as usual.  I got a phone call at 3:50 AM (which I did not answer).

The voicemail I listened to the next morning stated that Dad was aggressive and running up and down the hallways.  The staff member on hand was not authorized to administer his anti-anxiety medicine, so they wanted me to come pick him up and take him to the hospital.  Are you kidding me?

I braced myself with a few sips of coffee at 8:30 AM and called them back just to be told that he had calmed down and was fine at the moment. 

Fast forward to 3 hours later when the Director of Nursing called me to discuss the incident.  She basically started the conversation by asking me to take him to the doctor the next day to increase his medication.  As usual I am frustrated by this request because I have NEVER taken my Dad to the doctor this many times in a 3 month period just to be told that there is no medication that will fix his behavioral problems... BUT Valley View insists that I take him after every incident.  It is a waste of time.  I told her no.

Well, that wasn't the response that she wanted.  So instead she began telling me how he was "uncontrollable", "aggressive", "a danger to the other residents" and that they actually called the Police in the middle of the night because they couldn't handle him.  ARE YOU KIDDING ME?  The staff called the police on an Alzheimer's patient who was probably feeling cornered and scared because they were chasing after him and yelling his name over and over again!!!!!!!???????  What is wrong with you? 

I kind of snapped at this point in the conversation and was not very pleasant for the rest of the phone call.  Word to the wise:  Don't piss off a 6 1/2 month pregnant woman.  My protective instincts kicked in and I felt like a Mother Hen to Dad.  I know he is a handful... he doesn't sleep the entire night through, he masturbates in front of other residents, and he pees wherever he wants to, BUT despite all this crazy behavior, he has enough instincts left to feel frightened and in turn become aggressive when someone isn't approaching him in the proper way.  Their job is to help my Dad feel safe and happy in a friendly environment.  Well, it's safe to say they've failed because it's pretty obvious after numerous incidents and 4 months of living there, he still does not like or trust any of the staff at Valley View Gardens. 

I woke up this morning with no more fight left in me.  I was basically just tired of the whole thing.  So, when I walked in to the community director's office, he was probably surprised to see me very calm and unemotional.  (He was warned by the staff that I was upset and angry the day before over the phone.)  I was, however, very clear about what they did wrong and why I was upset.  For the most part, he agreed that things weren't handled properly and I actually got my first apology from Valley View Gardens.  He was sorry for what they put me through... I thought, who cares about me.  What about what you put my Dad through in the middle of the night?

The conversation that followed was basically the same conversation we had the month before and the month before that.  The staff isn't properly trained to deal with Dad's behaviors and they have not followed the tips that we have told them will work:  approach him with a smile, greet him by name, ask for his "help" in doing something, become his friend, make eye contact, DO NOT tell him what to do, DO NOT tell him no... the list goes on.   The nurses always want to turn to medication to solve every problem, when I think maybe they should start trying out different tactics and diversions that could possibly help his erratic behaviors.  They need to realize that most of these situations escalate into incidents because their tactics make him more upset.  And any idiot can figure out that you shouldn't chase an upset Alzheimer's patient up and down hallways in the middle of the night. 

Anyway, I'm sure my meeting won't change anything.  And, when I visited Dad afterward, he was happy as a clam devouring his lunch.  He was just so sweet.  Why does Jekyll have to turn into Hyde?

72 Years Old!

I'm always sensitive around Birthdays... because I feel that every person gets that one day out of the year that is just theirs.  So, naturally, when my Dad's birthday rolled around a couple of days ago, I found myself feeling sensitive and ultimately ended up in tears.  I haven't been able to shake the feeling lately that my Dad's home just isn't as loving as his past home.  Some of this feeling was heightened by The Sassy Songbirds' (my singing duo) visit to a beautiful, loving home last weekend.  The love and care for each individual resident that emanated out of the place was so strong and apparent.  I don't feel that when I am visiting Dad's home. 

I kept thinking about Dad's birthday last year at Whittier Place with Me, Megan, and one of Dad's oldest friends, Mike.  The staff had baked him a cake, drew little fish on the frosting, and threw a small party for him.  We all had a blast that day!  I knew that Valley View Gardens had no idea it was Dad's birthday on Friday, and it was only me coming to celebrate with him.  I know he doesn't know it's his birthday, but that doesn't mean he can't be made to feel special on his day, and all I could do was feel sad about the whole thing. 

On the way to see Dad, I decided I would take him out.  Getting out of the home, and into the public felt good.  Dad enjoyed lunch at Coco's where he people watched and ate plenty of food.  When I told the hostess it was his birthday, Dad actually overheard me and replied, "It is???"  Haha, I had only told him three minutes before that, but it made me laugh anyway.  The restaurant staff also sang Happy Birthday to him and he got a free pie for dessert.  He did so great being out and around people, that it made me feel much better.  Plus, he was fully able to feed himself and his appetite was great.  We've been concerned about that lately since he just continues to lose weight.  We're thinking about starting him on some Ensure in addition to his regular meals.

My Mom reminded me that while she feels similarly about his current living situation, that it could be much worse.  And I hadn't thought of that in a while.  He does have large hallways, a garden, and continues to dance every day.

Below is a video of Dad blowing out his candle.  It took me about 2 full minutes prior to this video to get him to understand what he had to do...

The small pleasures and the big

If Alzheimer's has an upside, I would say it's forcing us to reconnect with the small pleasures in daily life that we often overlook.  Like a car ride for example.  I took Dad to an appointment the other day, and while most of us hate getting in the car to fight traffic and rush along with the other million drivers on the road, to Dad this ride was a simple pleasure.  It must be like when you buy a new car and can't wait for that first time behind the wheel.  There's an excitement and exhilaration and an utter happiness.  That car ride had that effect on Dad.  I couldn't remember the last time I smiled so much while with him.

Let's not leave out the most important part of the car ride... the music.  Some Frank Sinatra, Peggy Lee, and Ray Charles (which really made us boogie).  Dad even drummed his hands on the dashboard to one of Ray's songs.  My Mom was following us and could see us bopping our heads to the music.  

So, in turn, Dad's small pleasures turned into my small pleasures as I was able to enjoy a wonderful morning with my Dad.  I would call that a small pleasure in most people's lives, but not ours.

The big pleasures don't usually creep up on us as much as the small ones do.  You can see them coming because most of the time, you've worked hard for them.  Our big pleasure was participating in the Long Beach Alzheimer's Walk this past Sunday and becoming the highest fund-raising family team!  What a moment.  I almost got a little emotional.  We made this all happen by just asking for the help and support of friends and loved ones... And they were kind enough to oblige.  We can't thank everyone enough.  We've made a statement that Alzheimer's can't keep us down, and by doing this walk and fund-raising for the cause, we will eventually beat this terrible disease.  Because honestly, more and more people will start developing Alzheimer's, and it will come down to families and friends fighting for their loved ones.  Nothing is stronger than that.

Below is our Upside to Dementia team photo and a video of us winning our fund-raising prize!!!  

Diapers, Drugs, and Disconnect

When I think about Dad lately, it makes me sad.  I know this blog is about finding the 'upside', but this disease is always challenging me to find that.  It's pretty clear Dad's moved onto another phase of Alzheimer's.  I think the toughest part is that I'm constantly missing my Dad.  I miss the Dad I had 3 months ago, and back then, I probably missed the Dad that I had 3 months prior that.  His behavior and condition is always changing, but I find that more and more of his personality is lost as time goes on.  Right now he seems like a shell of a person who goes through the motions, hangs his head low so that he's looking at the ground, and is completely in his own little world.  Let's not forget that he is still obsessed with holding imaginary coins in his hand; transferring them from one hand to another or one pocket to another.  One time he tried to open a door with his fist because he was worried to open his hand and drop the coins.

I only visit him once a week for 20-30 minutes because he only half notices that I'm there and he doesn't really need me every day.  Is that the upside?  That I don't have to see my Dad as often?... that's weird.

A few new developments in this new phase.  There were some sexual situations involving Dad a few weeks back and the staff immediately wanted to put him on another medication.  I thought, "Is this their solution to everything? Are they overreacting to the situation?"  Then we were told the entire story, and it involved other residents, so we knew something must be done.  The solution?:  Seroquel.  Seroquel treats depression, schizophrenia, bipolar disorder, and oh, it may also calm agitation in Alzheimer's patients.  Hmmm, they want to put my Dad on this drug?

This drug is scary.  It has a black box warning by the FDA and the possible side effects are many.  It also warns that it shouldn't be taken by elderly patients with dementia problems.... yet, many doctors still prescribe it to people like my Dad.  After my Mom's countless hours of investigation of this drug, my own assessment of Dad's anger issues and overt sexual behaviors, and a meeting with the Director of Valley View Gardens and the Director of Nursing.... we decided to give it a try.  I'm not against medication and I do believe it can work, but it is not always the answer and every case is different.  The dose is very low and we are monitoring him.  So far so good. 

I also witnessed a scene where the nursing staff had put Dad in a diaper.  He was so upset that he was running down the hall to get away from them while yanking the diaper off with his pants still on.  Two nurses cornered him and were trying to calm him down.  His anger and distrust of the nurses continued to grow even when they tried to re-dress him in his own underwear later.  It was a very frustrating scene.... he fought them the entire time, yelling, and not listening to a word they said.  What I learned from watching the entire thing is that not one person tried to find his eye-line, look him in the eye, and connect with him.  Total disconnect.  They aren't even trying to have a relationship with him.  The minute I find his eyes, I get his brief attention and trust.  He can then take a deep breath and start to focus on words.  His trust and anger issues are pretty tough to deal with at the moment but Seroquel may be helping with the agitation. 

The staff has informed me that they think he needs to be wearing something other than his own underwear.  I guess at the moment we're going to try 'pull-ups'.  Whatever.  As long as it's not a diaper.  He does need it at night because he's been starting to wet the bed, but I'm not sure what good it will do during the day.  The pull ups feel more like underwear, so hopefully he won't really notice.

Maybe all this learning is the upside.  I get to be an expert in Alzheimer's?  Oh, goodie.  Of course there is no such thing as an expert because the disease is different for everyone.  This is just our story.

Below is a video of Dad the other day.  You can tell he's holding those imaginary coins in his hand... then by the end of the video, he loses interest and starts walking away...

Alzheimer's Fund-Raising Party!!!

We're doing it again!!!!  The Alzheimer's Walk is right around the corner and we are fired up to raise money and awareness.  The walk is on October 16th in Long Beach, and we've just surpassed our fund-raising amount from last year!  Last weekend, Blake and I had an Open House and Fund-Raising party at our new home and it was a success.  We had One Hope Wine pouring for our guests, we had 'good for the brain' foods, we had a huge raffle of gifts that raised $800 alone, and we had a special performance from The Sassy Songbirds who specialize in singing at Senior Homes!  Our supportive and loving family and friends made our party so wonderful and successful and I want to extend a big Thank You one more time to everyone who has donated to the cause!
The links on the right to the blog will take you to The Walk Team Page if you would like to join or donate, we also have a link to The Sassy Songbirds page, and a link to The One Hope Wine page (you'll see Megan's pic on the page since she works for them!).  Below are pictures from our party as well as a video of The Sassy Songbirds performing for the party!

Life Goes on....

Although I would say this was a busy summer with Dad... figuring out his financial situation, moving him, dealing with a broken nose... our family has been even busier with all sorts of changes and events. I'm not sure how we balanced it all, but I have to say, that's what family is for because we all made it happen. Here's a glance into what really went on this summer....

The first two events sort of happened on the same day in June. Blake and I found out that we were expecting a baby!!! And we also found out that our offer on a house was accepted and we started a 30 day escrow three days later. Wow! And a 30 day escrow is no joke these days... it's a rush to get everything done in time, but we managed.

A few weeks later, out of the blue, Megan's live-in boyfriend decided he wanted something different in life (we still have no idea what that is...), and so the entire family watched as a devastated Megan began coping with not only a break-up but a big decision about where she wanted to live. There were a lot of tears this summer. Dad didn't seem too upset for her, but instead asked her to marry him about 30 times during one of her visits. :/

So, we had three big family moves all within weeks of each other -- And we all helped each other. As we all know, moving is such a chore, and family even came over from Arizona to help with Megan's move. We were very grateful especially since 1st trimester pregnancy fatigue was beginning to set in and I wasn't much help. Megan moved in with us and began contemplating whether or not she would move to San Francisco for a few months where two of her best friends live.

I had very conflicting feelings about her decision as well, since I am pregnant, and Dad seemed to really need us this summer.... but ultimately, she needs to live her life. In my opinion, she shouldn't be held back by Dad, and he wouldn't have wanted that. I only had one break down about the whole situation when Dad didn't appear to be adjusting well to his move, but he seems fine now, and I'm hoping he continues to be "easy" for the next few months until we move him again to the VA facility in LA. I think I was most sad about losing my best friend and sister. But, it's only an hour plane ride away.

Megan left three days ago for San Francisco and we are all very excited about her new adventure. We want her to be happy!!!! When she told Dad she was leaving for a while, he made a pouty face. I think he likes blonds because he doesn't know we're his daughters anymore, and he really fancies Megan. It's pretty funny. I'm pretty much chopped liver when she's sitting next to him. Hahaha.

I've heard many people use the phrase, "Family comes first", but Family really does come first in our lives and we wouldn't have it any other way. We would all do anything for each other and we did that this summer.

I'm hoping for a much quieter Autumn....

The Bruising Gets Worse

We had a very good meeting with the staff today and we all agreed that Dad will be handled by women from now on. He doesn't respond well to men... there is a paranoia and fear that develops when he is being told what to do by a man. So, hopefully this solves the aggressive behavior for now.

Broken Nose!

It's been a year and 4 months since the traumatic day that Dad ran away from Whittier, was found at a Fire Station an hour later, and was brought via Ambulance to the Hospital. That was a long day with a lot of drama. I gotta say yesterday's stint in the ER was much more pleasant and filled with much less drama... not to mention that we actually got to choose the Veteran's Association ER, so we won't be pummeled with $9000 in hospital and ambulance fees again!

Turns out that Dad has a broken nose... here's the story I got over the phone from Valley View Gardens:

A male caregiver was helping Dad get dressed yesterday morning and Dad was refusing to let the t-shirt go over his head. I don't know whether it was claustrophobia, or stubborness, or just a weird phobia at the moment, but he did not want to put his shirt on. Hence, he became very agitated and hit the caregiver in the mouth. The caregiver had some blood in his mouth and ended up with a swollen lip. As soon as Dad hit the guy, he turned around to bolt out of the room and ran nose first into the door.


I was shocked to hear about his violent behavior and the nurse let me know that Dad's nose was swollen, red, and bruising. By the end of the conversation, she was convinced it was broken and that I needed to come over soon. I was hoping not to spend my Sunday sitting in the ER, but we went over there and the minute I saw his nose, I was stunned. Yes, we would be going to the ER right away. It was so huge, the tissue around his eyes were swollen, and one eye was already black... he looked like those vampires on the 90s TV show "Buffy and the Vampire Slayer".... it sounds weird, but I am going to find a picture and you'll agree.

Dad was in a great mood and was so excited to see us... "Wow, what a lovely day!" Yes, it's so lovely hanging out in the ER. He wasn't in much pain, so he didn't really realize what he had done to his nose. Luckily, there weren't a lot of people in the waiting room, and we got seen pretty quickly. The X-ray took a little longer, but we finally got the diagnosis that his nose was broken. Megan showed up at the point to take over the duties and get him his pain prescriptions. We all pretty much agreed that there would be no reason to re-set Dad's nose in 10 days once the swelling went down unless it was hampering his breathing. I would love to explain to Dad, "Okay, now, they're gonna stick their fingers up your nose and break it again so that it will get better." Hahaa, yeah right.

Could this incident have been avoided? Maybe, maybe not. The caregivers are aware that Dad responds better to women, so I'm not sure why they paired him with a man yesterday. I'm sure he wouldn't have hit a woman in the mouth. There were also no witnesses and we have no idea if the man stayed calm or if he was pressuring Dad to get dressed. He only responds to calm and sweet personalities who ask him or prompt him to do something instead of telling him to do it. We have no idea. Mom, Megan and I are planning to visit Valley View Gardens tomorrow morning so we can all get on the same page about Dad's care plan.

Oh, and the bruising and swelling will get worse before it gets better, so I'm sure I'll have some photos to be sharing over the next few days. He really does look like a vampire... proof is below....