We Will Get to Disneyland!

Thank goodness for lifelines.

It’s been a challenging couple of weeks. Yes, I’m up for a challenge and usually have a positive attitude about things and know that I can overcome pretty much anything thrown at me but let’s get real:

The last few weeks sucked!

Robert being his excellently great self

Richard had a procedure on his back (a steroid shot into several of his lower back facet joints). Then a few days later he had to have a procedure on his lower leg veins (clipping off another valve that would randomly become a geyser). Robert started to get a cold during all this and was lethargic, congested and ran a low-grade temp which then triggered a seizure cluster. He seemed to recover for a few days then the same thing hit again, only worse.

Of course, when things like this happen all kinds of crap happens too. It’s like all the bad energy conspires to have a party. Hey! Look! They’re having a bad couple of weeks! Let’s join in the fun!

Robert’s routine dental cleaning became anything but. He has a problem with his gums so the dentist recommended a skin graft (yikes!). What are my options? A tooth extraction instead. Okay, I choose door number 2!  We scheduled it for a few days later but had to postpone it until after our trip since Robert came down with the respiratory infection.

Oh, and I practically choked on a piece of metal in a take-out salad; I banged my ankle into Robert’s wheelchair while walking through the house in the dark; we are now into the busy time at work . . . oh, you get the idea.

I am not telling you all this so you feel sorry for us but because I am sure you know what it feels like to have a pile of crap happen all at once.

You are not alone. Know that we can commiserate in our big ole crap piles together.

Next week we are going to Disneyland for Epilepsy Awareness Day at Disneyland. It has become an annual event for Richard, Robert and I and surgeries, respiratory illnesses, bad gums nor nearly breaking my ankle will stop us from going again this year.

Everyone is going to be healthy even if I have to will it to happen myself!

Robert seemed better for a few days once we started him on antibiotics but now the congestion is back in full force. His last dose of the antibiotics will be on Saturday and we leave the following Tuesday. We are pulling out all the stops to get him cleared out:

1. Hot Sprite;
2.  Hot chicken & noodle soup;
3.  Humidifier (with eucalyptus oil);
4.  Vick’s Vapo-rub;
5. Acapella vibratory therapy;
6.  Lots of fluids;

Robert had been going to Day Program once he felt better but we decided to keep him home today. Richard was the smart one to suggest it. I am so busy willing Robert to get better that I was pushing him to stick to his routine. (Yeah, even after he threw up last night a few times from so much congestion and, obviously, didn’t get enough sleep).

YOU WILL GET BETTER! (Hey, Jedi mind tricks do work sometimes.)

Thankfully, I have a husband with a bit more common sense than I do. We also have our Wonder Woman pulmonary nurse practitioner, Lana, who has been my lifeline while Robert is sick. I suspect she will hear from me again today or tomorrow. I am so grateful for her too!

Robert may be sick but he was very surprised when Richard told him he would stay home from program today. “Oh?” he says in his most surprised voice. Robert doesn’t even realize he is sick because, of course, he feels “excellently great!” (That’s his new, expanded version of “excellent.”)

Okay, Robert. Let’s keep being excellently great for at least ten more days!  We are going to Disneyland and going to have an excellent time!

We may need a little help from our friends so if you wouldn’t mind sending Robert some excellently great, healthy mojo we would all appreciate it!

Processing Pulmonary Health

Robert has been healthy – I mean, as healthy as he’s been in a long time and as healthy as someone who sees two Neurologists (an Epileptologist for his epilepsy and a neurologist specializing in movement disorders), an Otolaryngologist (his swallow doctor) and a Pulmonologist (his lung doctor) can be.

Taking advantage of a good run of good health:
Enjoying being on a River Cruise!

(You’re still knocking on wood, right?).

Robert’s health is definitely a house of cards but we have been very fortunate of late and I am extremely grateful. I am also a little wary because I know this can’t last forever but I try not to worry about the future. Not too much, anyway.

We usually see Robert’s pulmonologist two or three times a year. A couple of appointments ago, he was chosen to be in a research study for bronchiectasis. Robert is always up to help others and it only involves giving blood every few months which he is happy to do. He is not easy to get blood from but it doesn’t hurt him so he signed up.

I have been very happy with his pulmonary team over the last few years. His doctors have changed since Robert is seen at the local teaching hospital but they have all been very earnest, kind and good to Robert. The staff, particularly the nurse practitioner Lana, has been the mainstay of the practice and we absolutely adore her. She single-handedly helped Richard and I keep Robert out of the hospital a year and a half ago when he had pneumonia. We treated him at home and I talked to Lana several times a day, giving her Robert’s vitals, reporting on his mucus color (that’s always a fun job), and talking through his symptoms.

Lana was a lifesaver. She got us a nebulizer, gave us tips on how to clear the mucus, got the script for the antibiotics ordered and checked on us constantly. Without her, Robert would have been hospitalized which always results in a decline and an extra-long recovery time.

Lana also has epilepsy which she developed as an adult so she was definitely meant to be a part of Robert’s care team. (An interview with Lana will be featured in the Robert’s Sister interviews for Epilepsy Awareness Month in November!)

At Robert’s last appointment he saw his regular doctor and then had a new supervising doctor see him after the initial appointment. The first doctor and I talked about Robert’s increased coughing episodes and his choking and vomiting episodes that happen occasionally at night.  I was also concerned about winter coming (yes, I sound like Jon Snow from Game of Thrones) so the doctor suggested we come back in three months just to be sure everything was staying stable.

When the supervising doctor came in, he asked what I am doing to keep Robert from aspirating. Robert’s pneumonias stem from aspirations, usually during seizures. I listed everything we do: regular use of the Acapella, inhaler when needed, on three different kinds of meds to control his congestion and  following the swallow doctor’s orders of small bites with meals and taking only two meds at a time (instead of a handful as Robert thinks he can). I neglected to mention that I also brush his teeth regularly, use the brushes to get between teeth (flossing his teeth is too difficult for me) and take him to get his teeth cleaned four times a year.

I am absolutely convinced the reason Robert’s pneumonia episodes have decreased is because of the attention to his oral health. It is really amazing!

I told the doctor that, frankly, there was nothing I could do to prevent Robert from aspirating as it usually occurs during his seizures. I explained we are working with his neurologist in order to get seizure control but it just is not happening right now.

The doctor looked at me and said, well, let’s see Robert in a year.

Um, what?! Was it something I said?

What happened to every three to six months? What if he gets sick? What happened to my lifeline?

I admit I was a little panic-stricken.

I felt like we were getting kicked out for some reason. Did I answer your question incorrectly? Am I not doing enough for his pulmonary health? I don’t know what else I can do!

There’s something about the thought of losing a lifeline that can create absolute havoc for me. I like lifelines and safety nets and back up plans. Multiples of all of them if possible.

As we left, the doctor said we could always call if there is an issue. I thought he was just trying to make me feel better.

Hmmpf. I left feeling I was alone in dealing with any future coughing, choking, pneumonia or any other pulmonary issues.

I realize I was being a bit over-dramatic, which thankfully, was happening just inside my head.

I emailed Lana and told her I was a little concerned about Robert not being seen for a year. She reassured me that the doctor meant well and actually, I should “take that as him wanting to take pressure off you.”

Wow. A doctor who is concerned about me, the caregiver? That hadn’t occurred to me.

He did say I could call if there was a problem. Lana said the same thing.

I realized I still have my lifeline. Not only that but I have fewer times in a year that I have to rearrange my work schedule and Robert’s Day Program schedule.

I can definitely see the upside to this idea!

It has been a few weeks since the appointment and nothing dire has happened. (Humor me: knock on wood.)  I have Lana’s email, I have the online messaging service for all of Robert’s doctors and I know their phone number if things start to go south.

Winter is still coming but I feel like I have my lifeline again.

Still Learning about Robert

After eight years of caring for Robert, he continues to surprise me. First of all, he hasn’t been hospitalized for two years! He’s been to the ER for seizure clusters that wouldn’t respond to the Ativan but no hospitalizations for pneumonia. He had pneumonia a year and a half ago but we were able to treat him at home with the guidance of his pulmonary doctor.

That has to be some sort of record for Robert!

Robert enjoying the day

(Everyone please take a minute and knock on wood! I hope I didn’t just jinx us!)

We have fallen into a steady routine that seems to work for all of us. Richard and I realize that regular respite is just not possible for Robert. While Robert may be doing well, he still requires a great deal of personal care and help. Plus, he mainly moves around in a wheelchair although at home we have him use the walker to keep his legs as strong as possible. We have been told that respite homes prefer women who are mobile and that it is very difficult to find respite for a man in a wheelchair, especially one requiring the level of care Robert needs.

Okay, that’s fine. We work around that and create our own respite weekends when needed. Robert’s schedule also allows Richard and I to have some free time for which we are extremely grateful. Robert goes to a day program that he loves, has many friends and an outstanding staff. He sleeps in most weekends which allows Richard and I time to walk the dogs around the front of our house or do yardwork or work on our books for caregivers.

Robert has lived with us for three and a half years which is far longer than I ever expected but it is working out well for all of us.

Robert is not only fairly healthy but he is extremely happy. In fact, he now says he is not only excellent but doing “excellently great.”

I don’t know how many more superlatives he can come up with!

For special events we do change up the schedule. We usually let Robert sleep in as late as he likes on the weekends since he has to wake up so early on the weekdays. One recent Saturday we woke him up very early (as in, earlier than he even has to get up for program!) and took him with us to the Walk to End Alzheimer’s.

Richard and Rachel registering walkers

My legal management group volunteered to help with the registration table for the second year in a row and this year we took Robert. Richard stayed home with him last year since he was recovering from a seizure cluster but this year we all went!

We loaded Robert into the car, picked up Rachel and stopped by Starbucks to get some coffee and a breakfast sandwich for Robert. He had food, his jacket, a blanket and his puzzle book. Plus, I promised him a chocolate shake later in the day so he was more than willing to go!

Volunteering at the Walk to End Alzheimer’s is not only fulfilling and heartwarming but also a great deal of fun. Everyone at the walk or helping at the registration tables are impacted in some way by Alzheimer’s or other dementias. It is both astounding and overwhelming the number of people affected by this brutal disease.

Once the walk was over, my fellow volunteers wanted to meet Robert since most of them read about him and his “excellent” attitude. Robert, being the ham that he is, soaked up the attention. It didn’t hurt that they were all women since he is quite the ladies’ man.

We talked about that a bit and I even mentioned that when Richard and I brought snacks to his Day Program on his birthday, Robert had a lady friend holding his hand.  Robert matter-of-factly explained that she was in love with him.

This led to follow up questions from everyone and my comment of “don’t break her heart!” Robert, again in his “that’s just the way it is” way, explained, “She’s too young for me.”

Ouch! Poor thing. I hope he let her down easy but I suspect Robert told her just as he told us: bluntly and very straightforward. Robert doesn’t sugar-coat anything!

I love learning new things about Robert and delight in these stories of his. I am so grateful we did something different that Saturday, not only to help the Walk to End Alzheimer’s but also because I got to learn a little something new about Robert’s social life.

It makes me so happy to know Robert has friends at day program and even has a bit of romance in his life. I told you, he is a ladies’ man!

Special note: Richard will be participating in the Walk to End Alzheimer’s in Huntington Beach as we will be in Southern California for Epilepsy Awareness Day at Disneyland the same week. Richard participates in the walk to support our friends Gincy and Steve Heins as Steve was diagnosed with early onset Mild Cognitive Impairment.  Please visit Richard’s walk page if you are interested in donating.  Thank you!