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...

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.  :)

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!

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....