I met with a private hire aide last night. Her name is Rose and she has experience with other ALS patients. We are going for a test run tomorrow night and will set up a regular schedule when I return from the City of Light.
Things to consider:
First of all, the cost. None of this will be reimbursed as I am still in my "elimination period." I think I will be limited to one night a week for four hours a night, which I'm hoping will alleviate some of the burden from Jenny. If I time everything properly and call on a couple of friends, I think we can get through the next several months. I'm keeping my fingers crossed (which, if you have seen me do that lately, is rather amusing).
Next, I have no idea how this actually works. I suppose she will help me do all the things I can't do--food preparation and laundry and the like--but I feel very strange about asking even though I expect this is what she is supposed to do. It's one thing to ask your children for help, it's quite another to ask a stranger. But I will be paying her to help, so I'm being ridiculous.
From a personal care perspective I am less uncertain. I am actually looking forward to having someone I did not give birth to help me after my shower. Having spent a significant amount of time in communal locker rooms it is interesting how modest I am around my children. I do not have any reservations about Rose assisting me with toweling off, applying lotion, or getting dressed. I am actually eager to see how quickly this process can be completed.
You know, it may be such an agreeable arrangement that I will want to engage her for two evenings a week -- an enormous expense. I will figure it out somehow, I suppose. For now, I will start with one time a week.
One other thing -- Rose is a private hire aide and my long-term care insurance requires I go through an agency. I'll need to keep this in mind and not become too fond.
I've begun the process of finding a part-time aide. The long-term care insurance I took out back in 2004 (for once, a smart move on my part) requires a 90 day elimination period before it begins funding, and I must go through a licensed agency. In the interim I must pay out of pocket so I can engage a private hire. Ellen put me in touch with a woman who, over the phone, seems very nice. I'm going to meet her tonight and go over schedules, needs, etc. True to form I tend to minimize the care I require but, when I look at what I actually need and what my daughter actually does for me on a nightly basis, it's really quite a lot. That Jenny has done so much for so long with so little complaint is a testament to her goodness and I am very grateful to have such a wonderful daughter.
Anyway, I will incorporate the part-time caregiver into a schedule which will include Jenny, Becky, Tam, Lynne, and anyone else who is willing.
I went to bed at 11:30 last night after a very peaceful, enjoyable Sunday. Because the pain in my shoulder/neck was back (no doubt attributable to Thursday night's craziness and Saturday's exposure to the cold) I took a tramadol before going to bed, expecting to sleep a solid six hours.
At 1:07 AM I woke up. I was having a sad dream -- a dream about loss -- and I woke up gasping for breath. Maybe gasping isn't the right word; exhaling was normal, inhaling was normal until about half way at which point I had to work harder to breathe in. It did not last long, maybe a minute, but it was unusual and I had never experienced it before.
My Friday wasn't bad despite the lack of sleep. There was a car fire in the lowest level of the garage in my building, which I waited out in my "safe room." Clearly I was in no danger because no firefighters came to rescue me. There was some conversation among my coworkers about how I would be rescued should it be necessary. One person suggested that a "huge" fireman could carry me down nine flights of stairs; I offered the possibility that I would be lowered through the elevator shaft. Oh yes, we all had a good chuckle about my rescue alternatives.
Anyway, we have calm seas for now.
For the first time in the many years we have been coming to Richmond for this race, we found incredible (translated legal and free) parking only a few blocks from the race finish. Because crowds and walking were a concern, we brought my snazzy wheels.
My ensemble was put together with the object of keeping me warm as the temperatures were in the 30s this morning. I was a vision of loveliness in my thick track pants, my bulky red hoodie which peeked out from underneath my bulkier maroon fleece pullover, and a gold jacquard scarf which, incidentally, nicely complemented my gold "Riddler" shoes. Yes, I was breathtaking.
My breathtaking self comfortably settled in my cute little chair, Lynne and I headed toward the park and Becky. We encountered a few bumps in the sidewalk and learned a little bit about physics. Fortunately our lessons were limited to potential consequences versus actual (meaning I did not do a face plant when we tried to roll over a bump) and we continued on our way.
The chair really did come in handy. The old me would have covered the distance without a thought but since Louise insists on riding piggyback even a short distance can be tiring. The walk from the park to the race start was longer than I remembered and I was thankful to be sitting despite the fact that I still feel very self-conscious.
Becky and John did well, both beating their projected times. After we saw them finish Lynne and I made our way back to the park where we were to meet. Once again, the chair was a godsend.
When we got back to the park, Lynne left me by the YMCA tent and went off in search of the runners. There I sat, in all my loveliness, watching as the inhabitants of this microcosm walked by. A man wearing a hat and long overcoat came up the path, talking on his phone. He made eye contact with me and smiled so I smiled back. Then the strangest thing happened: he came over to me, leaning down so he was close to my ear and said, slowly and very loudly, "Have. A. Great. Day." Then off he went. A few minutes later Lynne, Becky, and John came over and I was telling them the story, laughing because I got the impression from his delivery that the man might have thought I was "challenged." Just then the man came back and, since we were all looking at him, stopped to say that he had seen me and wanted to wish me a good day, that he was working with the announcer at the race, and introduced himself. I introduced myself, too, but the cold weather and the fact that I was laughing gave me a bit of a Louise-accent so that instead of sounding like Debbie McGee, it sounded more like Deh-ie Muh-ehh, probably confirming his suspicion. Perhaps I am being oversensitive -- who knows -- but I found the whole episode very amusing.
Race update: John, with a time of 38:49, was 29th of over 1300 in his age group, was 162nd overall men, and 178th in a field of over 30,500 runners. Becky ran a 46:38, was 74th of over 3100 in her age group, was the 261st woman overall, and was 1685th overall. I'm very proud of both of them.
It's now 1:46 AM. The alarm goes off in four hours.
Time for a chain for my specs.
It's time to face the fact that my care needs are not as minimal as I want to believe, that it's time to call in some paid help. My long term care insurance MAY allow me to engage a part-time aide prior to retirement but, if it doesn't, I'll find the money somewhere. What's a couple of hours a few nights a week, anyway?
I'll still pursue the Share the Care idea; having an aide will make it easier to fill in blanks. As well, an aide can help with things I am not comfortable asking others to do.
Even though this new chapter is negative because I've progressed to a point where I need more help, it's really a positive.
Many of my friends have already stepped up and many more have offered but don't know what to do. My fear is they will come to regard me as an obligation; I am reassured otherwise but the fear remains.
Now, a very interesting phenomenon has occurred since then. As you know I am ridiculously conscious of the different mileage points on my commute; I can see the Marine Corps Museum as I crest the hill at mile 16.8, and I pass the museum at mile 18.3. My one way commute is 52.4 miles. I am always amazed at the consistency of these numbers. So you can imagine my surprise when I crested the hill on Wednesday and the odometer for this specific marker read 16.6. As I passed the museum, I was at 18.1. When I got home that night I had only driven 51.9 miles. This same thing happened Thursday. Friday the odometer reading was 51.8. It looks like I am logging one mile less per day. At this rate I will drive 20 fewer miles per month. Is this possible? It must have to do with the new tires, don't you think?
I know this seems crazy, but you knew that about me. Right?
I have terminated my carpool arrangement. It's not the right time and was adding stress. Big sigh of relief for having hit that one out of the park.
This is a special note to tam.
Thank you for helping me with my hair today. You have been such a good friend throughout this entire ordeal, and I will always be grateful to you for your kindness, selflessness, and stinky armpit.
I love you with all my heart, the black empty shell that it is.
I suspect she will read this later on and get a chuckle knowing that the entire world now knows that she has a stinky armpit.
(Tam, I meant to ask you about your dad today and am sorry I forgot. I keep you both in my prayers.)
The last several days have been rather a trial; Cecilia seems to be experiencing greater anxiety and her reactions are worrisome in that she has become physical with me. We had a terrible day on Saturday and another miserable night last night.
Consequently, I am rethinking the use of some sort of medication to calm her anxiety. I have never been one to resort to a pill, thinking it unnecessary; I've always felt that doctors too often pop a pill into a child's mouth to make them fit into a prescribed niche. After the events of the last several days, however, I'm beginning to think there may be some value in using the proper medication for a specific issue.
One problem I have not been able to solve is teaching her to be flexible and to accept alternatives. So often her anxiety stems from unmet expectations, expectations she creates and that are not easily achievable. In that way she is her own worst enemy.
She has so many things in her life and on her mind: being 16, demanding academics, unfulfilled romance, and her Aspergers demons. Add my idiot "condition" into the mix and you have a recipe for anxiety and unhappiness. My beautiful, intelligent, creative, darling daughter should not have to go through this and it breaks my heart to see her in such anguish.
She sees her doctor tomorrow. I know there is no magic pill, but hopefully there is the next best thing.
I ran. My legs were strong. I took big deep breaths. My arms and hands moved like they are supposed to. I ran around the whole Tidal Basin and back up toward the Jefferson, around the front, then back to the paths leading to the steps. It was exhilarating.
I'm happy I can remember how it felt to be so free, so strong. Dreams about running are always welcome.
I was toddling along this morning, doing my typical 68 to 70 mph, when I came up behind a commuter van that was actually going slower than I was. I decided to pass him and, when I did, I noticed he was behind an unmarked police car who was doing exactly the speed limit. I am not one of those drivers who is afraid to pass a police car if I am doing within the speed limit, unlike so many others who refuse to pass a cop no matter what. So I continued at speed and after a few minutes pulled ahead. There was a commuter bus a little way ahead so I decided to stay in the left lane until I had passed it, too. I was able to see in my rearview mirror that traffic was beginning to back up behind the unmarked car and I was glad I was not in that crowd because it would have driven me crazy! Anyway, I passed the bus and moved back into the right lane. As I approached the mixing bowl there was a sudden onslaught of cars, indicating that the cop had left the highway and everyone else was trying to make up for lost time. Car after car after motorcycle after car came zooming up on the left when all of a sudden I heard something to my right -- a motorcycle was passing me IN MY OWN LANE. He is very lucky I didn't hit him, because I was startled. His license plate said NITROS which I'm sure has some motorcycle meaning but which I believe he must have inhaled before getting on his bike. Having commuted with responsible motorcyclists for a number of years (in a car, not on a motorcycle) I have been privy to some understanding -- albeit academic -- of proper motorcycle conduct.
What is amusing is that I passed Mr. NITROS not long after this incredibly stupid stunt because he, poor fool, was headed to the Pentagon and had to wait in a long line of traffic.
That episode notwithstanding, it was a delightful ride in.
Maddening pain update: still going mad, still in pain, waiting to hear from the doctor.
This past Sunday when Becky visited she dried my hair with the hair dryer and round brush and it lasted through Monday. Monday night Jenny did the same thing, and my hair was nice and straight on Tuesday. Last night Tam came over and, not only dried my hair, but massaged my fingers to help reduce the swelling; a full spa treatment.
Ladies, I can't begin to thank you for helping me. It means a ton.
Occasionally I am given a bit of a respite, but only briefly. No sooner do I begin to enjoy the pain-free moment than the pain returns.
I can't imagine this is ALS related. Unless it has to do with how I get out of bed every day, which would be indirectly related. I have made adjustments to that operation, but have not yet noticed any improvement.
I still feel the best remedy would be amputation.
Doesn't that seem reason enough to support reform?
Jenny and I had lunch on Saturday with an old friend, Bil. He took several pictures, a few of which I am posting here. I elected not to post the one of me drinking my wine through a straw because, while one must do such things, there are limits to what one will publish. Besides, I had not had my hair done. Louise may do her worst, but she will never affect my vanity.
As you can see I now eat cheeseburgers with a fork, which I manage to hold quite nicely. Chips are held awkwardly but sufficiently between thumb and forefinger.
It has been some time since I've seen Bil and I think it was a bit of a shock for him to see the change. That happens every now and then with people I don't see often.
Anyway, we had a nice time and the food was good. I would give it a (curved) thumbs up.
At the end of the session, Mike helped me up from the table. Most of the time he assists from the back but yesterday he was in front of me. As he came toward me the absurdity and the surreality of the situation struck me funny and I began to laugh. And did I laugh -- I think I scared him. I managed to regain control long enough for him to help me put my coat on but, as he was helping me button my coat, I had another attack of the giggles. I laughed so hard that twice -- TWICE -- Mike had to reach out to prevent me from falling. I'm sure he was more than relieved when I finally left his office.
Walking back to the office was uneventful, thank goodness. I'd dreamt the night before that I had fallen while crossing the road and that cars just kept rolling over me, so I was very careful crossing the street. I will confess to feeling a bit unsure of myself and may have to explore an alternate way to get to my appointments.
Recognizing the unfortunate truth that my balance is an issue, I wrote Ellen and asked if there were any folding wheelchairs in the loan closet. No, I will not be able to use it to go to my appointments because I can't push the chair on my own, I will use it when I'm out with someone who can help me. She wrote back and told me one would be delivered.
This is a bit of a tough pill to swallow. But swallow it I will because, as one can tell from the walr-ass, I am very good at swallowing. At least for now.
Adam and I used to run together in the morning when I worked in Washington and, as the miles increased, so did our friendship grow. We talk about everything during our twice daily conversations and nothing is taboo. Making reference to the dismissive way in which my brother refers to my illness, Adam will ask me about my "condition." We counsel each other in matters both professional and personal, but mostly we just listen to each other.
As I said, he likes to plan. So, anticipating a time when I will not be there to listen, he has begun the search for my replacement. Please do not be shocked by this -- I think it is practical and hysterical and when I think about it I start to laugh. And it makes me wonder if maybe other people should start looking for a replacement for the role I fill in their lives. We have plenty of warning and I can even be part of the selection process.
Do not think badly of Adam. Our joking may be morbid and in very bad taste but I know he cares deeply for me and I know my "condition" is hard for him as it is for so many others. I know I am irreplaceable but we have to have fun with this goddamn thing, don't we?
Please submit all resumes and letters of reference via the comments section. Please indicate your availability and the role you want to fill.
The past couple of nights Jenny has noticed I occasionally say "v" instead of "b" and I have said vefore I feel as though there is a slight change in my speech. My jaw and cheeks feel heavy, and they twitch. So does my nose.
Coughing when drinking happens on occasion and every once in a while a piece of food doesn't quite get swallowed. Nothing provlematic, vut I'm aware.
Add to the mix the laughing (sorry MJ, no video), crying, and yawning and I think what we have here is evidence of bulbar symptoms.
It was vound to happen; this is a progressive disease after all. The general consensus is I seem to have progressed more in the last six months: walking and vreathing are more impacted and the hands--where it all vegan--are less functional.
Consequently, since I ache for one last glimpse of the most veautiful city in the world, I am taking one more long distance trip. Nurses Jenny and Lynne will accompany me, making sure I am comfortavley settled in the Tuileries or Luxemvourg Gardens vefore they go peeking into the Louvre or the Musee D'Orsay. I just want to take a long draught of the loveliness that is Paris.
Vonne nuit, mes amis.
"remember when we were with duane & some other kid. & you were drunk as fuckkkkk. & we went to 7-11 to pick up that creepy old homeless guy so he could buy us beer. & then we had to sit next to him & he said he was from georgia, but he was up here to beat his cheatting wife? good times :D"
I guess these kids don't realize somebody's mother is reading this stuff.
I knew someone once who experienced great pain in her big toe; she complained that it was making her crazy. She complained enough to one particular doctor that he finally agreed to grant her request: amputation of the offending digit. Yes, you heard me right. She had her big toe chopped off. Extreme measures, yes, and, ultimately, totally futile as the pain remained even after the toe was long gone. Many times I would come upon her, rubbing the stump where her toe used to be.
I wonder if I should have my neck/shoulder amputated. I'm certain that is the answer to my problem.
It may be time to consider getting a folding wheelchair for use when I am out with the kids. When Jenny and Becky were here this past weekend we had to run some errands. I managed to make my way into Lowe's, CVS, and Target without incident but, when I found something to be funny (which I always do when I am with my daughters) the uncontrollable and enthusiastic laughter was enough to make me lose my balance; I actually fell backward into a rack of shoes! I did not fall to the ground, but I did bump my back. The laughter notwithstanding, a wheelchair would speed me up a little.
My fits of laughter are becoming well known at the office, too. When trying to tell a few coworkers about a silly dream I had, I started laughing and was unable to speak. Thank goodness I was already sitting. Knowing that this episode might last some time, my coworkers amiably beat a hasty retreat.
What really freaks people out is when the laughing is punctuated by bursts of tears. There are times when I am crying and it turns into laughter and vice versa. Overall I prefer the laughing, despite the loss of balance. Ha ha, I am sure people think I am completely unbalanced with all these crazy emotions, so the imbalance is probably totally appropriate.
So, the new coachman and the possibility of a wheelchair...what other adaptations do I have to report? Oh, right, there is a new grab bar in the bathroom. Getting up and down from a seated position has not been so much fun in a very long time. One must find the gift in all things, remember?
It's a real balancing act.