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....

A Bad Week, A Good Week

Last week I made a comment on Facebook that things weren't going well for Dad and that I was too stressed out to even write a blog about it. Basically, after two weeks of being at Valley View Gardens, the staff evaluated Dad's care needs according to his behavior and their observations of him from the past two weeks. Long story short, the following is what they read to me over the phone: "Aggressive", "Anxious", "High Elopement Risk", "Aggressive Behavior", "Sun-Downers", "Resisting Toileting", "Resisting wearing Diapers", "Pees on Walls, Carpets, Furniture and Outside of Building", "Xanax not really helping" etc. They even reported an incident where he "hit a caregiver". I asked if he stood there and actually decked the caregiver, or if he was trying to get away and hit them in the process. It sounds like it was the latter. (For those of you who don't know, "Sun-Downers" is when a patient repeatedly gets anxious and more difficult in the late afternoon and evening.)

When I told them that all this behavior was a side effect of the move and transition to a new home, they sounded shocked. I don't even know if they believed me. I shouldn't be the one having to tell them that moving is a tough transition for an Alzheimer's patient. That's Alzheimer's 101. It was really frustrating to know that these were their first impressions of Dad.

When we moved Dad into the new home, we did let the staff know about his Peeing issues and that as long as someone reminds him to use the restroom once an hour and shows him where it is, then there shouldn't be a problem. Obviously that wasn't passed on to all the caregivers. I also pointed out that he doesn't pee his pants. If he has to go, then he will unzip and go (i.e. peeing on the carpet), so diapers are not going to help, and he doesn't need them. I also gave them the go ahead to contact the doctor and increase his dosage of Xanax if needed.

The aggression is what really worried me. Basically the only memories I have of my Dad's Mom was when she had Alzheimer's and she was pretty aggressive. I know this a part of the disease, so I hope this is not a new trend.

We waited a few days to visit Dad again, because we were worried that we would trigger him to get upset because when Megan had visited him earlier that week, he was very upset and actually stormed off. Megan kind of followed him and while on the phone with me, witnessed him trying to jump the fence. She said when he found her again, he was covered in leaves, shrub, and dirt. He was trying hard to get out, but luckily was unsuccessful.

Soooooo, it was with trepidation that the two of us visited him two days ago. But, he was back to his jovial, sweet self, even though he was a little doped up. He was wearing a diaper, pajama pants, and tennis shoes with no socks. But hey, let's not sweat the small things. At least he wasn't yelling at us and trying to jump the fence. We did make sure he was wearing socks when we left. He feet and toenails are so gross. Hopefully the Podiatrist comes soon.

Also, when we got the bad report about Dad, I called Whittier Place and asked for their help in the matter. Lynnette and Veronica were very upset about this news and made a phone call to Valley View Gardens to give them tips about Dad and to assure them that he was not always like this. We really appreciated them stepping in and sticking up for Dad. We heart Whittier Place.

Surprise....

Isn't it just like Dad to stress me out for weeks over this move, and when we move him in, nothing happens! I'm sure Dad didn't mean to do that, but this disease is so unpredictable... so I guess I blame Alzheimer's for that stress then!

But, that's exactly how it's been. The minute we brought him to Valley View Gardens he started making jokes and telling all the ladies how beautiful they were. He was an instant hit.

Upon arrival, the Executive Director, Jim, said, "Dave you have two beautiful ladies on each side of you." Dad, responded, "Oh, yeah. Eat your heart out." Hahaha. Jim is also a Yankees fan, so he gave Dad a little grief about his huge Dodgers poster in his room.

I didn't get any phone calls, although I did call the next day to check in on him. Apparently he was adjusting fine and had asked the activities director if she was married, and then proceeded to ask her if she could help him find a wife.

Megan and I visited him on Sunday and he was very chatty about who knows what, but in a good mood. It just seems too simple! I really can't believe it... what a surprise.

The only thing that I can think of is that he is so used this community type feel of a home, that he could be anywhere, and it all feels the same to him. Whereas when we moved him to Whittier originally, he had never encountered that type of living. This isn't to say that traumatic times could still be ahead. We are prepared. But for now, we're enjoying the quiet.

We have still have to get a few more things out of Whittier Place next week, and say our goodbyes to everyone there. When Dad said his goodbyes, I held up pretty well. All the caregivers were giving me these really sad looks in the hallway. They really do care for him, and he brings a lot of spunk and laughter to the group there. It feels good to know that he is loved.

One of the caregivers who had been there from the start stopped us in the hall, looked right at me and asked quietly, "Can I go visit him?" That's when I teared up. I gave her the address of his new place. She then had a little talk with Dad about being good, and they touched foreheads. We also took Dad to say goodbye to Tabitha. We told her he was just going on a trip, and she started fake crying really loudly, then Dad caught wind of the situation and started fake crying with her. They were leaning on each others shoulders doing this ridiculous "crying" and the whole room was erupting in laughter. One caregiver kept saying, "Where's the camera? Where's the camera?" I've said it before... those two should go on the road with their comedy act. We'll definitely miss Tabitha, and we know she will really miss Dad.

Next up: Getting him to the dentist to see about new dentures!

Valley View Gardens

Move in day is today! Wish us luck!
Pictures of Dad's new place, Valley View Gardens:
They have numerous courtyards, a huge banquet hall, and lots of windows.

Big Week

First off, we found a place for Dad. It's called Valley View Gardens in Garden Grove, which is even closer for me and a little closer for Megan as well. Although Alzheimer's care is so incredibly expensive, we've found that most people in the community really want to help and work hard to make that happen. The Community Relations Manager at Valley View Gardens is named Susie, and she has given us an amazing deal. She has agreed to start Dad off at the rate of $3000/month for the first three months, at which time we can negotiate again. The highest it would go up would be $3500, but we hope to keep it less than that... and we're only really talking 6 months total if he gets into this VA facility in February.

I started crying in her office (it was an emotional day) when I found out there was a one time 'community fee' of $1500 that is non-refundable (most places have this type of fee). I told her then that it was not possible for us to pay that and she called her boss and was able to waive the fee for us. So not only is she giving us $500 discount on rent for 3 months, but she also waived the community fee. I almost don't understand it because this place is very nice and she only has one bed available, so they are getting plenty of business. But she remembered my Mom and Sister from a visit in April 2010 when were originally looking for a place for Dad. She just really wanted to help us.

The only catch is that we have to move him in this week!!! Since we are already paid through July in Whittier Place, she won't be charging us for July either! So, we are probably moving him tomorrow. Furniture is already provided, so really we're just going to move his clothes, toiletries, and wall decor. We have until the end of July to get his furniture out of Whittier Place. I'm going to miss it there so much. I guess it's better not to drag it out though.

There's no website for the new home, but I'll take some pictures and will keep everyone updated throughout the week.

A Big Decision

Megan and I have made the decision to move Dad due to the financial reasons I mentioned in my last blog. We don't really have any options, so it was an easy decision for that reason. Thanks to the help of our Mom we found a couple of options. For a while, it was looking very dismal since Alzheimer's Care is incredibly expensive and every place we called was more expensive than Whittier.

We did sit down and talk with Lynette, the Executive Director at Whittier Place. She was willing to work on the cost of Dad's rent, but unfortunately, we need such a low rate, that they were unable to match our price. Even if she could lower it for him to stay in Whittier Place through February, it still wouldn't be low enough and would literally leave him no money for anything else. We just don't feel good about that. Our goal for him is $3000/month.

We had a really nice talk, and we only got emotional once when I mentioned move-out day. We will be giving our 30 day notice, but if it takes longer than that, she said not to worry about it. Also, Lynette and the Activities Coordinator for Memory Care, Veronica, are going to put together a little packet on Dad for his next care-givers. Little tips about him, what he loves to do, and what a special person he is to them and the facility. I am also hoping for a nice Cover Letter from them to accompany our application packet for the VA facility that we can hopefully get him into in February.

She said that everyone loves Dave, and there will be no shortage of tears when he leaves. We are all family and it will be really hard.

At this point, we're going to take one thing at a time. It's too overwhelming to think about how he will react and how traumatic this move may be for him and ultimately us. We are expecting him to decline when we move him, and probably again when we move him in February.

One place we looked at yesterday was a pretty good option at $2975/month, and we're going to see another one tomorrow that will probably be the one we go with. The most important aspects we are looking for are an outside area/garden and lots of space to walk around. Lynette believes that if Dad has both those things, then he should eventually adapt pretty well.

We'll keep you updated. It's going to be a tough summer for all parties involved, but we did it once and we can do it again.
Here's a picture below of the activities calendar in The Memory Care of Whittier Place...
1:00 pm: Gardening with Dave

The Future

So, we've put it off long enough... it's now time to take action on Dad's financial situation and his future. I'm going to be honest and really break it down. It's a tough situation.

Dad's monthly income from Teamsters and Social Security is $1800 SHORT for what he owes Whittier Place each month. We've been supplementing that difference with his savings which is dwindling fast. It comes down to this: He can only afford to stay at Whittier Place through December. And we should probably move him faster than that so that he still has some savings left.

We possibly could have chosen a cheaper place back in April 2010. But we had to take into consideration location, amenities, and the fact that we were desperate. And, Whittier Place is cheaper than most for the quality. But what would you do? Stick him in a home where there is no outside area, the hallways are dark and dingy, and every resident is 90 years old and on their death bed? Because we saw plenty of those and it was depressing to say the least. Let's remember that Dad is only 71 years old.

So, we can't look back at the decisions we made, only the future. All I can say is we gave him a year and half of an amazing home filled with laughter, love, and friendly people who genuinely care for him. And it's going to break our hearts the day he moves out. Literally.

So, what are his options?

-Move him to a Board & Care which will be lower in cost but still probably not low enough. It's a house with a couple full-time care givers and maybe 5 other residents. We originally tried to move him to one in April 2010 but he ran away in the rain and we found him on the streets of Huntington Beach. They are usually not equipped for Alzheimer's patients. He would walk right out the front door or climb out the window.

-Move him to an extremely cheap and disgusting Dementia Ward where he'll never see the light of day because the less expensive ones don't have a garden or are on the 2nd floor of a building and the residents never go outside. The thought of him not being able to go outside and being locked indoors like a caged animal made me cry. I don't know if we could even find one cheap enough. Also, many of the cheaper facilities are really far away from Me and Megan. Whittier Place is already so far away.

-Appeal to MediCal for the Assisted Living Waiver which is really just for people who are in Skilled Nursing who need to move to Assisted Living. But he does fall under the category of needing 24 hour care like Skilled Nursing, and technically he lives in an Assisted Living facility with a dementia ward. It's a long shot and probably won't work.

The only hope we have is that the Veterans Association is opening up a huge Alzheimer's facility in Los Angeles and we were smart enough to put him on the wait list a while back. The home is supposed to open in February 2012 (but you never know if that will be pushed back). Dad will get an application and it's supposed to be first come first serve. It's a lot of 'if's' to put our hope on.

Okay, let's just say that it all works out and he can move into that brand new facility in February. I'm sure you've done the math. Where is he going to go for the month of January or possibly part of February? Do we move him soon to a cheaper place and then move him again in February? 2 moves? Talk about trauma to both him and us! Or do we fund-raise to keep him in Whittier Place through January? Or maybe they'll strike us a deal for just one month. And what if he doesn't get accepted into that new facility or the date of the opening gets pushed back?

This is what we're dealing with right now. My Mom has been making a lot of phone calls to help us out and we're laying all the options out on the table. One resource we called said nicely, "His income is actually quite high, I get people who only have $500 income/month. And they don't know what to do either."

All I can say is I'm fired up to fund-raise for the Walk this year. An angry fired up. These are tough, desperate situations and it's only going to be more of a drain on the government when the Baby Boomers are added to the mix. We need resources and awareness and help! Oh, and a cure would be nice too.

-

Francis

I forgot what playing a little bit of 'Francis' does for Dad. So, I put on some Frank Sinatra for him on the way to the doctor. Dad sang along, and then right when "The Best Is Yet To Come" started playing, he slowly looked at me out of the corner of his eye and said, "I love you so much" and then placed the back of his hand on my cheek.
I turned away as the tears filled my eyes. So glad I could make your day Dad.

Rubber Glove

I snapped on a rubber glove today just for Dad. OH, the things we do for him. But I'll get to that in a minute.

It was time for Dad's yearly physical, and since the nurse practitioner we were previously seeing left the office to work elsewhere, we were happy to meet the new Doctor. Overall, Dad is looking pretty healthy -- good blood pressure, no fever, high spirits etc. The nurse did an Alzheimer's test on Dad... for those of you not familiar with these tests, they ask questions like: What year is it? What season is it? Can you name 3 objects? Repeat after me... Depending on how many questions are answered and answered correctly, they can usually get an idea of what stage of dementia they are dealing with.

Not surprisingly Dad couldn't do any of the test. So, it's safe to say he's advanced Alzheimer's at least in the cognitive stage. He can still talk, and sometimes say words or small sentences that make sense, but a lot of time it's gibberish. But physically, he's still going strong and he was in a great mood today. When the nurse said he had beautiful daughters, Dad replied, "Well, I'll deal with it, I guess." I also asked him to guess how old I was and he said, "Better not. I'm gonna get in trouble, I think." That made the other patients in the waiting room laugh.

Right before we left, they requested a urine sample, and Megan informed me that since she helped him with it last time, that it was my turn. Hence, the rubber glove. I gotta say, after I whined, squirmed, and wrinkled my nose it could have been worse. I just kind of moved the cup into the stream and viola!! He had good focus and concentration today, so I lucked out. Unfortunately, I can't say the same for Megan's experience last time. Sorry Meg.

Hair Cut!

Just wanted to share a couple of photos! Dad is doing well at the moment. They had a great celebration on Cinco de Mayo and Dad had a chance to whack the pinata!

Also, you would think that someone with hardly any hair, wouldn't desperately need a haircut, but Dad's hair grows so fast!!! Here are some before and after photos! Hahaha... I think Einstein made an appearance at Whittier Place....

Alzheimer's Special on CNN

I cried today watching the Larry King CNN special on Alzheimer's. My sister and I deal with this disease every day, and yet, sometimes I feel like I am learning about the severity and seriousness of this disease for the very first time.

I cried because the day when my Dad looks at me blankly and asks me who I am, is coming soon. We're getting close because Dad looked at Megan the other day and asked, "Are you looking for your Dad?" He hasn't welcomed me with a huge smile and hug for a while. It's not until I say - Hi Dad - that he responds. And when we leave, he doesn't really seem to care or notice. (I guess we should be thankful for that last one, but I almost feel like a parent with a child who doesn't need me anymore.)

One speaker on the CNN special said, "stay as close as you can to that individual." I'm afraid our reduced visits are erasing us from his mind much faster.

I also cried when Actress Angie Dickenson shared her story of her sister's battle with Alzheimer's. Usually I think about my own possibility of getting the disease, but today started thinking about my sister, and that put me over the edge. I really don't think I can bare the thought of either of us going through that some day as either care-taker for the 2nd time, or as the victim. Or then the joking part of my mind says, "we can just both get the disease and be crazy together!!!" Then of course, I don't even want to think about my Mom being afflicted with it... these are scary thoughts.

I am thankful that this special is being presented to the American public, and I am especially happy that Actor Seth Rogan and his Fiance, who are around my age, are putting a younger face to the disease. It really is a disease that is affecting our generation more and more every day... and not just with grandparents, but to our actual parents. We all have a good chance of being affected at some point... either with the disease or the challenge of being a care-giver. Obviously Megan and I know firsthand.

In a few months we will start fund-raising for the Alzheimer's Walk again and I hope to have a much bigger group of walkers this year!!! I'm getting fired up!

Mardi Gras

Since the blog yesterday, we were able to accomplish some much needed chores for Dad and we're already feeling less guilty. We took him to the doctor yesterday because his neck was so stiff that he could barely stand up straight. Although the doctor couldn't do much besides write a note allowing Whittier to apply heat pads and pain relievers, it had to be done. I couldn't help but take this picture. He couldn't raise his head very high, so everyone was able to clearly read his hat....
Yep, it says FBI, female body inspector.

I think I felt the worst about not dealing with his dental needs quick enough, but it honestly took us a while to figure out what kind of coverage he had if any at all.
We figured it out and got up early this morning in order to get him to the VA in Long Beach by 8 AM. He hadn't been wearing his dentures lately because he has pain and sores from the dentures, but we're on the way to solving that problem and we all feel much better.

Dad was super sweet today in the VA and since there are so many 'characters' in the VA, he almost fit right in. He was talking to all the strangers in the hallway and when he saw a man in a motorized wheelchair, he yelled, "Hot Rod Harry!!!!" He even (in his own way) told the dentist how grateful he was that I was with him. He wasn't making sense, but then he clasped his hands in prayer position, bowed at me with gratitude, and then looked at the doctor as if saying "See, I'm lucky". Pretty cute.

On a side note, I learned today that when we were getting those anxious phone calls about a week ago, they happened to coincide with the passing of Dad's roommate. While he wasn't in the room when it happened, I'm sure he experienced some distress and confusion which in turn resulted in phone calls to us. I knew there was something that must have triggered his behavior. It's kind of weird that Whittier Place never told us.

AND, most importantly, according to Megan, the Mardi Gras party was a blast and Dad was definitely The King! They had a parade with floats and costumes and once Dad realized they were all clapping for him, he began bowing and blowing kisses to all his fans! The pictures say it all!

The care-givers even told Megan where the actual spiked punch was... and these were her words, "I needed a spiked drink. I'd been following Dad around for 2 hours, dealing with his costume and masks, and attending to him." It just cracked me up, because she sounded like a bridesmaid who had to attend to the bride throughout her wedding day... And I could just picture Megan following him around and trying to explain why he was dressed up while making sure his feather boa didn't fall off. Well, she got her spiked drink but as she walked off to grab something, Dad almost drank the whole thing. Wish I could have been there.

Anyway, it's like Megan said when Dad was singing along to Peggy Lee in the Doctor's Office yesterday, "This is our life." Good or bad. It's our life.

Guilt

Guilt. Ugh. I don't like this emotion. Because you feel it right away, and it kind of gnaws at you (I am picturing a mouse gnawing on a piece of rope). Then suddenly you're in tears and you finally realize the reason is... Guilt.

I am sticking my tongue out at that word right now.

Ever since my Dad has been having 'normal days' at Whittier Place, Megan and I have been cutting back on our visits. It can be as long at 7-10 days before one of us goes to see him, and that alone makes me feel guilty. When you compare that to how often we were seeing him in Fallbrook, then we would look like Saints!... but, in this situation, 7-10 days is long time.

I feel like we're being judged for not being there as often as we were in the beginning (and I'm sure they're not judging us... but who knows), and I feel guilty that it takes so long to get his prescriptions and doctor's appointments, but most of all, we feel guilty about trying to get our lives back. We were both lucky enough to be in a position to drop everything and go running when there was an emergency, but with both of us concentrating on our futures, we feel a little selfish. (And I hate that word! But that's how I feel.) Now that there's only concern, but no emergencies, we're more reluctant to cancel our personal time to go running to Whittier.

Part of me thinks that it's only normal to feel selfish, another part of me thinks... GET OVER IT! and do what you have to do! But, how long will we have to do what we have to do? This revelation led me to another thought -- I am FINALLY realizing the longevity and commitment to this disease. We handled the emergencies and thought that was the hardest part, but now it's the maintenance that is feeling really heavy. . . . .

And heavy is the only word I can think of at the moment. Who knows how long this is going to last? Phone calls need to me made, appointments need to be kept, and we need to stay on top of his financial situation for as many years as it takes. It's difficult to balance out his medical needs, his finances, his needs at the home, and personal visitations. I'm feeling overwhelmed by future days of Dad. And I love my Dad, but he's a child and as much as his home will handle the day to day things, he needs us for everything else. We're the only ones.

As selfish as we may want to be, we won't let that get in the way because I don't ever want to feel that we have neglected Dad for our own personal reasons. Elder neglect is unacceptable, and I think that would be the worst thing that could happen. Dad is relying on us because there is no one else, so we just have to find the perfect balance between our own personal time, and Dad's needs. We also have to assess what is urgent, and what isn't, and take one thing at a time. I guess that's the only way.

HOORAY! As I was finishing this blog... Dad's prescriptions just arrived in the mail. Megan is currently with Dad at the Doctor's right now, but now I can go meet her and deliver the prescriptions to Whittier Place! One thing down... next up... Dad's dental concerns.

Tip

Tip:
Don't call the VA when you're already in a bad mood or feeling emotional. Cause you'll just end up crying after being on hold for 31 minutes to find out you've been transferred to the wrong people, and everything you thought was resolved last week is still a mess. Am I seriously having the same conversation with his clinic that I had last week and the week before???? Why is nothing getting done!

And I didn't even get my questions answered about Dental!

Still can't get my Dad's Galantamine refilled. He's been without it now for about 10 days.

Anxious Phone Calls

Hmmmm. Two anxious phone calls in two days from Dad. And he didn't sound very coherent. He wants to get out and when I would say anything he just thought I was agreeing with him that he should get out. No, Dad, we don't agree. Please stay put and we'll come visit you. Anyway, managed to calm him down a bit and I think Megan will be visiting him tomorrow.

I thought to myself, wow, I used to be so good at negotiating with him on the phone and trying to cheer him up, how did I do it? I'm a little rusty, I have to say.

It almost seems like something at Whittier Place has upset him. Sometimes a new resident or staff member will do that do him and the staff doesn't think it's anything worth mentioning (which is understandable), so I guess we better investigate because he hasn't acted this way in months.

On a side note... Whittier Place has booked The Sassy Songbirds to perform on Father's Day Weekend!!! The activities directors saw us perform today at a showcase and booked us on the spot! Of course, it will be extra special since my Dad is in the audience. To visit The Sassy Songbird Blog and stay updated, click on the link to the right.

A month in the life of Dad

Well, Dad continues to do well, and we continue to have more of our life back, while still enjoying those visits with Dad. Just some updates in Dad's world:

-His roommate is on Hospice. Whittier Place called to ask me if we wanted the roommate to move or if we were comfortable with him staying with Dad. We figured things were fine the way they were, and Dad really likes his roommate. One of the care-givers even told us that if Dad sees his roommate sleeping, he'll even go up to him and cover him up with a blanket. So sweet.

-The Director of Memory Care, Lourdes, is leaving Whittier Place. While we are very sad to see her go, she is moving up and will be in an executive position at another Alzheimer's home in Costa Mesa. It was so obvious how much love and passion she has for her job, and we couldn't have gotten through those first 6-8 months without her. I had more of a relationship with her than I did my Dad... that's how much we talked. She had great instincts about Dad and was always offering her help. Thank you Lourdes. You will be missed at Whittier Place.

-I attended a 'Family Meeting' the other day at Whittier Place, and every family member seemed to know who Dad was. "We love Dave!" "You're Dave's daughter?" "He's so sweet and funny." Hahaha. Made me smile.

-We've been dealing with Dad's prescriptions again... the transfer over from his old VA in Loma Linda to Long Beach really was pretty easy except the Prescriptions! I think we finally got it sorted out, but Whittier place was giving him the wrong dosage of Galantamine (which is the generic for Aricept - The Alzheimer's Pill). Loma Linda had prescribed 2 a day, and Long Beach had prescribed 1 a day... anyway... I think it's all sorted out now. At least I hope so.

-Last but not least.... Dad will be the King of the Mardi Gras party next Wednesday. He was the one who got the plastic baby in his piece of cake, so it's a pretty big deal. Everyone stops me in the hallway and keeps telling me, "Do you know your Dad is the King of Mardi Gras?" Megan and I are going to try to be there next Wednesday to get some good pictures and videos!

So, look for a Mardi Gras blog next week! It should be a fun one!