The Fourth of July is my least favorite holiday, followed by Memorial Day and Veteren’s Day. Don’t get me wrong…I’m a very proud American. I also live in DC and those three holidays are the three holidays where we have an influx of tourists clogging up the metro and coming to a full stop while driving because they are lost. Not to mention the fourth of July is HOT in DC. Always over 95 degrees and always humid.

And my mom loved the Fourth of July. When we were younger we’d always go on a picnic with other family friends. When we were older my mom would pop popcorn, drag chairs to the driveway and have the neighbors over to watch the fireworks.

And no matter where she celebrated the Fourth, my mom would call me late in the night to wish me a Happy Independence Day and let me know she’d watched the fireworks over the US Capitol on the Capitol Fourth broadcast on PBS. She’d want to know where I was during the fireworks and how much fun I had.

Wherever you are, whatever fireworks you’re watching, Happy Independence Day from my mom Kathy and me!

Mom turned 63 last week! I can’t believe it. My brother and I celebrated with her in simple style…bouquet of flowers, rocking chairs, singing, fingernail painting, and lots of laughing.

Mom was always great with birthdays. When we were younger she cooked whatever we wanted for dinner and when we were older, we’d go out to dinner wherever we wanted. Mom would also wake up in the morning, blow up a dozen balloons, tie them together with ribbon, curl the ribbon with a pair of scissors and hang the bouquet on the porch light by our front steps. She wanted everyone that passed by the house to know that someone inside was having a birthday.

Three of my mom’s birthdays stand out in my mind. I remember her 40th. We had a surprise party for her. My job in the surprise was to decorate the house. I made signs, put up banners, and went through a hundred old pictures to find a collection to hang on the front door. The picture below of my mom walking through the front door to the surprise is an image I can see with my eyes closed. The other memorable part was her “Over the Hill” birthday cake which had black flowers on it. Everyone’s mouth turned some disgusting purple color so when we posed for a group picture it was full of purple tongues.

I remember her 50th. My mom and brother came to visit me in the Peace Corps in Samoa. She was so excited. It was her first trip out of the country. We took the ferry to the big island. We stayed in beach fales (=thatched huts). I snapped the first picture while she was putting on her makeup and staring at the ocean. She wanted a dozen pictures taken of her in that hut. She loved sleeping on the beach. That’s something we both could agree on. We drove to Falealupo-tai, the last place the sun would set before crossing the international dateline (before the moved the dateline a couple of years ago.) We took the second picture as the sun was setting on her 50th.

The last birthday that stands out is her 60th. By this time she had been in and out of hospitals trying to make an accurate diagnosis for what was going on. The only thing we knew at that point was that something was seriously wrong and getting worse. We had moved her into dependent care because she wasn’t eating or taking her meds. My brother and his wife were living in Africa and I was driving 3 1/2 hours each way, every other weekend to see her. Everyone was struggling. And in the chaos that was those couple of years, my dear friend Jodie and her family hosted an impromptu 60th birthday party for us. We crashed their Sunday family lunch and Jodie had made a birthday cake. We ate, laughed and sat on the porch swing. It was a perfect summer day.

We’ve had our share of big family birthdays, with either a huge trip or an expensive present to mark the day. And what it all comes back to for me is what my mom taught me about birthdays…simple is best. It’s about spending time with someone you love, eating food you love, and maybe a few balloons to let everyone who passes by know you’re having a special day.

My mom got a roommate this week. Now this is huge news because since we moved my mom into dependent care she has not been “roommate compatible.” Some of it has been a result of her helpful disposition, some of it her aggression, and no doubt large parts of it her illness.

She had one roommate that she insisted on helping in and out of bed, only to end up dropping her on the floor one day. She had another roommate whose family would bring her candy and sweets and my mom would take them and eat them. She had another roommate that was really loud. She would snore loudly when she slept and moan even louder when she was awake. They caught my mom shoving suckers in her mouth one day in an effort to get her to shut up.

So when we were looking for a new place to move mom in August, my brother and I were scared they would want to move her into a room with someone else, things would go as they had in the past. There would be a big incident, and unlike the old place, new place would be less tolerant and would tell us she couldn’t stay there. So we decided we wouldn’t say anything about her rocky roommate history and hope for the best. We really wanted this new place to work out, because it was perfect for mom and close to us, and well, we really didn’t have any other options.

They told us they had the perfect arrangement for mom. She would be sharing a room with Lynne, another resident with early onset Alzheimer’s, who loved to walk the halls and go to activities. They were sure this was going to be a good fit. My brother and I smiled and nodded enthusiastically as they explained the arrangement, then got in the car and rolled our eyes and said this is a disaster in the making.

It lasted four days. Four long, nail-biting days. My brother and I were waiting for the call, and when it came, they were so nice about it. They said mom had gotten up in the middle of the night, walked over to Lynne’s bed, pulled all the blankets and sheets off and said, “You’re going to have to leave now!” 🙂 They moved Lynne next door and mom has been in her own room for the last year and everyone has been fine.

So this week they moved a new roommate in. Mom has become so much more mellow since August. Her mood swings and her aggressive side aren’t there anymore. So hopefully it’s the right time for a roommate. We will wait and see. So far, so good.

Text from my sister-in-law:

According to your Mom she’s going to be 20 on her bday this year. When I asked her if she thought she looked 20 and could pass for 20 years old she said yes. I think she might be a little too optimistic this year. 🙂

On this official first day of summer, here is a video of my outing with mom on Sunday. We had a great day! I taught her to open the convertible top and we drove around in the singing. Visited one of my favorite overlooks near her place and got some sunshine and fresh air…

One of the things I find myself doing when I am out in public is teaching people how to talk to my mom now. I don’t mean that because I think she comprehends less. I mean because depending on what you need her to do, you have to change the way you talk to her. For the most part, just asking closed ended questions works and you get a yes or no answer, usually followed by a part of the question you asked. It’s like when you were in elementary school and you had to form your answers to questions in complete sentences.

Q: Do you want a banana?
A: Yes, I want a banana.

Now this works fine most of the time. Until sometimes it doesn’t. Take for example at the dentist’s office. Despite my telling the dental hygienist you need to just tell her to open her mouth or to turn to the right or left. Instead the hygienist kept asking, “Can you open your mouth wider?” Which logically prompted the response, “Yes I can open my mouth wider.” Guess what you don’t want? Someone talking while you have a large metal hooked scraper in their mouth. Or even worse, a mechanical drill toothbrush. After about seven or eight screw ups, the hygienist finally realized asking wasn’t as good as telling and from there the rest of the dentist visit went great.

Except when mom discovered I was sitting in the dentist’s chair and she wanted me to get up:

I was all excited to spend the afternoon with mom today, but no go. When I showed up at 2pm, this is how I found her…

Evidently it’s the curse of the full moon. It was true when I worked in a hospital and it’s apparently true in the nursing home, a full moon messes with everyone’s schedule. So middle of the afternoon mom was unwakeable. I guess if I’d have shown up at full moon 2am I’d have had a chance. I was able to wrestle her sunglasses off of her and put them in her junk drawer. Other than that, I guessed it best to leave her undisturbed.

We have some rituals that have just sort of happened over the past few years. Things like milkshakes, car rides, putting gas in the car, going to the store, and washing the car. Most started because I’d bring mom along while I ran my errands. They were usually the same errands, like going to the car wash, so over time, an errand became a ritual.

Now the rituals are really important because they are easy and familiar for mom. When I say we are going to get the car washed, she knows where we are going and what that entails. And I know how long it takes so I can purposefully put together an agenda of our errands and know how long our outings will be.

But the other thing our rituals do is allow me to watch and chart where there is decline because I see mom in the same situation over and over, month after month.

The car wash is a great example. Early in the illness, we’d go to the car wash and I could never get mom to stay in the car. I’d have to constantly keep an eye on her because she’d open the door and try to come out with me. Once I remember she opened the door just when I was spraying soap on the passenger side and it went all over her and all over the car. She had soap in her hair and running down her face and she just sat there with the door open spitting soap.

Over time she stopped wanting to get out of the car, and was content to stay in and rock back and forth singing to the radio. And when I’d walk around her side of the car, she’d knock on the window and smile and wave to me.

Now she mostly sits in the car and listens to the radio. She waves and smiles, but mostly after I wave first.

And usually I can still get her to get out and help me sweep the car. Last week when we were sweeping the car I was kneeling on the passenger seat vacuuming the floor and I felt something pulling on my clothes. I guess my underwear was sticking put because mom was pulling up my jeans and pulling my tshirt down. When I looked over my shoulder at her she said, “I’m fixing your clothes.”

Still finding ways to help!