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!

Fax, Email, MIA, Lawyer

This week, I am inundated with paperwork/financial type chores that have everything to do with Dad. Because I am his Power of Attorney, I am in charge! Chaaaaarge! Probably the most annoying of all these chores is dealing with Collections and Dad's hospital bills from when he ran away back in April. I gotta say though, I'm learning a lot.

FAX:
His medical coverage consists of the VA and Medicare Part A - both of which typically don't cover Emergency services. Dad's bills from his run-away incident on April 11th add up to almost $8000 including the Ambulance Ride. The VA may cover these expenses if the incident is associated with an ailment that they have been treating him for (like Alzheimer's). Since nothing happens very quickly through the VA, Collections is now calling me about his Ambulance Bill, but of course they won't tell me anything until I fax them the POA... WHICH I did two weeks ago, but they never got it. So, I'm going to fax them again.
I am also faxing a letter to Dad's mortgage company. His mortgage is currently paid through an automatic payment, but since he is selling his mobile home, it is also being paid through Dad's escrow... so we're double paying. They need a letter signed by me to discontinue the automatic payment.

EMAIL:
Furthermore, I've been dealing with Dad's home insurance as well! Now, with this particular document I was able to scan and email it back, so that saved me a fax, but I spent almost an entire hour trying to get the correct person on the phone that could answer my questions.

MIA (missing in action):
Lastly, I'm supposed to get another check for Dad from Morgan Stanley so that he can pay next month's rent, but I haven't heard back from them. They're usually very prompt, so I'm not sure what is going on with that. I know things are tough around the holidays, but I gotta say this is a strange one. We need that check before the 5th of next month to pay his rent!

Lawyer:
Next week we are meeting with a Lawyer who specializes in Elder Law so we should be getting a better idea on how Dad is doing financially and what we need to do to make sure that when his money runs out, everything goes smoothly. We estimated that Dad has about 10 more months of Whittier Place before he can't afford it anymore... but we'll know more after we meet with the Lawyer.

Thank You!

I just got a personal phone call from the Alzheimer's Association branch in Irvine and the first thing out of his mouth was, "Wow!" (We're currently at $1405.00.) He thanked us for doing such a great job fund-raising for the Memory Walk and encouraged us to keep it up. In turn then, I need to thank all of you for your donations and support. We obviously couldn't do it without any of you. If you still want to donate you can click on the link to the right on the blog entitled Memory Walk - Join our Team. (you don't have to join the team to donate)

Another person I need to thank is Wendy from the VA in Austin. I am still dealing with all these hospital bills from when Dad had stitches after running away in April. The total amount comes to around almost $10,000 including the Ambulance Ride. Since Dad only has Medicare Part A and goes to VA for everything else, he qualifies for assistance from the VA to help cover the cost of those bills. I spent hours sending bills and information to the VA only to be written a letter saying that we were rejected because we were missing papers. Wendy was my savior last week. She told me what forms she needed and when the hospital billing office played dumb, she PERSONALLY called them and requested all the correct paperwork. As slow as the VA usually is with everything they do, Wendy made progress happen within in 30 minutes. I could not believe it. That was just the first step in getting these bills taken care of, but at least it's a step in the right direction!

If you read yesterday's blog, you know that my Dad had a special visit from his Brother Ron and his wife Linda. They drove down from Oxnard to see Dad and had this to say on my Facebook page... "We r with Ron's brother David and he still has a great sense of humor and is good natured. Glad we r here."

Instantly I was happy and then I felt incredibly guilty and almost wanted to cry. All I've been doing is complaining about how annoying Dad is lately, but that message from Ron and Linda really got to me. Considering Dad has Alzheimer's and is frustrated and confused by his state of mind, where he is living, and the loss of control in his life, he really handles it pretty well most of the time. I need to remind myself that when I have 'Dad overload' to sit back and reassess the situation.

Obviously Ron and Linda only witnessed a few moments of Dad's life yesterday, but they could still see all of Dad's good traits shining through this disease. I know that Megan and I get the worst part because Dad needs to complain to someone and since we see him so often, we get the brunt of the complaints. I need to remember that Dad is struggling as much as Megan and I are with this disease. I'm sure he's scared sometimes too.

Wanted to share this picture of Dad with his brother Ron from yesterday.

Happy Daddy

I think it would be a lot less enjoyable visiting Dad if we didn't just love the place he is living. Yesterday they were celebrating two birthdays and the staff had baked two cakes decorated with colored sprinkles. Everyone was gathered in the activities room waiting for the cakes to arrive. In the meantime, music was playing and one of the newest patients wanted to dance. Now, this woman can command a room. She was dancing with a staff member and talking loudly trying to get people to dance. When she made her way over to Dad, he introduced us as his daughters and the lady responded, "These are your daughters? They are beautiful." I told her, "Well, I think you're my new favorite." And she whispered to me, "Don't tell my daughters that. They think I'm goofy." Then Dad mumbled, "Yeah, you got that right." She went back to dancing and then Dad and I got up and started dancing as well.

Once the cakes arrived, the staff put hats on the birthday girls, took pictures, and we all sang Happy Birthday. It was the sweetest thing. One woman responded, "I didn't even know it was my birthday." Before blowing out the candles, they were supposed to make a wish, and while the lady was thinking of her wish, the new patient yells from the corner of the room, "A wish to get rich!" She was cracking us up all day. Megan and I have a feeling that Dad is going to get along with the newbie very well!

Dad was in an extremely good mood all day and was so delighted that we were there with him. He kept looking at us like he couldn't believe we were his daughters and there was so much love in his face. Some days he's more like a child, but yesterday he was more like a father and it was a nice change. Walking down the hallways, Dad is all smiles and says hello to all the staff. Oh, and there are the cutest pictures of Dad on the Bulletin Board gardening, dancing, and on what looks to be Cinco De Mayo he is smiling at the camera wearing a huge sombrero and holding a virgin margarita! Ole!

Earlier in the morning, Megan and I had a small meeting with the head of the Memory Care to discuss Dad's assessment. She decided to reassess Dad and take off the charges for 'status checks' every hour since he isn't trying to escape anymore (that was costing about $500/month). On the other hand, Dad is having issues with using the Bathroom. We're pretty sure at this point that he pees in his closet daily. It's even worse when there are clothes on the floor because he'll pee on them and then a couple hours later hang them back up. He also peed right in the corner of the hallway outside of the office a couple of days ago. I'm not sure if he thinks he sees a toilet, or thinks he's outside, or just sees a corner or dark area and wants to pee there. Putting him in diapers wouldn't solve the problem because he's not wetting his pants, he still knows how to go to the bathroom.

Whittier has decided to do the following: On laundry day, they are going to wash ALL his clothes no matter if they are hanging in the closet or laying on the floor. They're also going to do a small cleaning every day of his closet and room. Lastly, the staff is going to ask him throughout the day if he needs to use the restroom and then gently prompt him on where to do it. Dad's very independent so they may not always catch him peeing, but at least now they can try to monitor the situation a little bit better. Consequently, the $500/month they took off his assessment from trying to escape is basically back on because of the new services added. At this point, I can't blame them. They've done every thing they can to accommodate us and Dad, so it's our turn to help them out. Dad's room and bathroom got make-overs recently and a lot of THEIR money was poured into making the pee smell disappear. It's like Dad is trying to recreate the smell. Maybe he misses it, but I certainly do not.

We're still worried about how thin Dad is and the staff has began to notice as well, so they're going to monitor his eating habits. In the meantime, Megan and I are trying to fatten him up a little when we take him out for lunch or snacks. Next time we see the doctor we'll mention the weight loss again and see what they say.

The Scabies is almost gone. Still there, but less red and less itchy. We see the Dermatologist for the check-up appointment next week.

Below is a video of me and Dad dancing in the Activities Room! He's still got the moves...

The Business Side of Things

I spent my morning yesterday doing paperwork for Dad... some good and some bad.

We got an offer on Dad's mobile home! And of course we took it! The lady is giving us a down payment and she will pay us rent until the beginning of next year when she will take over the mortgage. So, I signed everything and sent that off.

The other paperwork involved hospital bills from when he was in the hospital back in April after he ran away. We got an ambulance bill for $1000 a couple of months ago and I appealed to the VA for financial help since Dad only has Medicare Part A which doesn't cover ER bills. Then, two months later I got two more bills (this time for the ER)... one for $7400 and another for $1000!!! I don't know why I didn't think about the actual ER bills, but obviously Dad can't afford this, so I am appealing to the VA again and we're contacting a financial counselor affiliated with the hospital.

Unfortunately the process with the VA takes so long that I have a feeling we're going to be sent to Collections... I guess we'll just have to see what the financial counselor says.

Yesterday I was visiting Dad and I checked out his new laminate hardwood floors. The smell in his room is so much better although I think Dad is still peeing in other places other than the toilet. When I was picking up his dirty clothes from the bottom of the closet they were all wet. Wet with pee, oh goodie! I pulled all the clothes out and even though laundry is generally done on Tuesdays, Whittier place said they would wash all his clothes for him. I noticed that the closet door is always open and the bathroom door is always shut, so he probably doesn't even think about the bathroom, he just knows that he has to pee and ends up walking to the open door.

Dad's roommate is also gone. They didn't tell me why, but it's too bad because he was really a sweet guy. I informed the manager of the Dementia Ward that Ken's family may be calling about some missing clothes because when I looked in Dad's closet, most of the clothes were Ken's.

Apparently Dad helped the activities coordinator plant some radishes and summer squash in the garden. We spent some time watering all the plants and we ate a couple of the tomatoes off the tomato plant. He really has a great home at Whittier.

Later during my visit, we all walked to the big dining room so they could do their daily exercises and trivia. As we were walking down the hallway, I could hear a couple of the patients behind me say, "Where are we going?" and someone answered, "I don't know. I forgot." "Oh, Okay." I was giggling to myself because it was so sweet and so true.

Dad's rash is getting better but he is still itching like crazy. He took his second dose of Scabies medication yesterday so hopefully it really kicks in. I attached a photo of Dad's new floor and a video of him trying to do the exercises (I love the confused look on his face). He is the least coordinated out of all the patients. When they are doing arms exercises, he moves his legs and vice versa. At least he is involved with the group activities.

I've also been asked to write a post on another blog. The blog is about feeling better no matter what condition/cause your experiencing. I don't think they've had anyone write about Alzheimer's yet, so that will be a nice addition. Here is a link to the blog http://blog.dimmi.com/
I'll let everyone know when I write something.

Denial

I sit here with tear-stained cheeks cradling a glass of wine. (You're so dramatic Kristen, you say). I know, but I speak the truth.

There comes a time when you have to face denial. Especially with Alzheimer's and Dementia. Denial comes easily with this disease. "Dad's too young to be losing his memory". "Dad is fine to live alone." "Dad doesn't have to be in a lock-up facility... he can still clean his dentures." No, he can't. Face it.

There's also the financial denial. I have to give us a little credit on this one. We didn't think it would take this long to sell his mobile home. We also didn't know he would lose so much money on it or that his Morgan Stanley investments would have plummeted so much. Someone like my husband Blake who is getting his masters in business and finance would know this, but I do not. The minute I hear numbers my mind shuts down. Yeah, I took Honors Math all through High School, but I was tutored through the entire thing. It was torture.

We had been scrambling for a place to put Dad when my Mom found Whittier Place Senior Living. Dad had been living between me, Megan, and my Mom for about a week after running away from the first place we put him. Whittier is so nice and actually very affordable when you compare it to other facilities. What took us over our budget is all the extra 'stuff' that they charge you for. $100/month to have someone help them with their dentures or $120/month for the patient to get 5 showers a week... the list goes on. (Even with all the added expenses, the place is still pretty cheap). We knew that we were above his budget but at that point we were desperate to get him in a secure place. The plan was to let him live there for the next few years while he is still young and active and then when he gets worse, we can move him to a different place.

Well, Dad's money is running out soon and he's not selling the mobile home fast enough. I'm freaking out. When we're already spending so much time visiting and worrying about rashes or trying to stop him from running away, how can we think about one more thing? Well, I'm going to stop crying and try.

We're going to meet with a lawyer and hopefully get more information about Medical. And we have some legal and financial complications (that I won't go into) and I can't even begin to understand all of it. Luckily Megan and I have my Mom who looks up EVERYTHING on the internet in record speed and is extremely quick in learning about all these government programs. We also have Blake. He is the more fiscal conservative among us and a great forecaster when it comes to finance. I'm hoping between the two of them and Dad's lame Power of Attorney (Me), we can figure it all out.

What makes the possibility of moving Dad worse? I feel like in the past week or two, I've started to notice a small change in my Dad. I think he is starting to consider Whittier Place as his home.

Alzheimer's is Expensive

11:00 May 19th 2010: The phone rang and it was Whittier Place. Dad had gotten out again. He didn't get far but they couldn't get him to go back inside. I was already planning to visit him that day, so I left quickly and called Megan to come as well.

We got him back inside and fed him lunch. He complains: I need a job. I don't want to garden because they already have a gardener. These people take my stuff. I have no money.

Later that day, the head of Generations Memory Care where my Dad lives called to say she needed one of us to be there with him through the night or she would have to implement 24-hour care. I freaked out! 24-hour care would cost $1700 more a month. Great. Are we going to have to move him again? And to a place that is dumpy so that he can afford it?

The next morning in a meeting with Whittier Place, I break down. We end up compromising. Megan and I are going to visit 4-5 days a week and they won't raise his rate. This is our last chance to make this place work and it will only take one bad day for my Dad to ruin it. Fingers are crossed!!

I can't help but wonder how people afford care for Alzheimer's patients. My Dad's monthly payment would have gone up to a total of $5000 if they implemented 24-hour care!!! Whittier Place is moderately priced, so some are more and some are less. There is no fixed price at these types of homes -- the cost can go up and down depending on the needs of the resident.

Has America forgotten these patients? The system definitely fails someone like my Dad who is only 70 years old and is so physically active that he jumped the fence when he ran away earlier that day. He doesn't feel like he belongs with people who are 10 or 15 years older than him and he also needs a lot of activity to keep him happy and preoccupied.

I am not saying that the staff doesn't deserve the money he pays them. Because they do deserve it. They are constantly dealing with the disease and they are bending over backwards to accommodate my Dad. He's really sweet when he wants to be. Pinching cheeks and all that.

But how do families afford to give their loved ones the quality of life that they deserve? That is a question that I can't answer and that will be haunting us for the next 10-15 years (God forbid 20) as we go through this struggle with my Dad.

The only thing I can hope for in the future is the possibility of a cure or something to slow down the disease. Stem Cell Research. It's too late for my Dad... but what about me and Megan?