Notes from a Caregiver

How long has it been?

2011-02-22T00:33:00.000-05:00

As I sit here at midnight, looking for an excuse to stay awake when I should really be asleep, I realized that it has been roughly 8 months since my last post. The good news is that it is simply because we have been keeping busy. I took to the couponing thing, the triplets are 2 now, and Rowan is 4 going on 18. (Frankly, I'm jealous that she has a better sense of fashion than I do, but at least she hasn't figured out how to spend a credit card on the computer. Yet.)

I took to extreme couponing back in May, and that has really saved our backsides. 6 people, living on the salary of a beekeeper. My mom likes to refer to it as my hobby. My dad tells me that as long as I have fun doing it, he is all for it. I know I did not pay myself for three months last year, and the couponing thing kept my family in food, toilet paper, and diapers during that time.

Dave, well, is Dave. Is he getting better? Yes. But frankly, one of the highpoints of this last year is the realization that he may call me by Rowan's name, but at least he is not calling me by someone else's name. Some woman who I never met. Or some guy who I never met. Yea, life could be worse.

My parents flew back home last November, and that seems to have helped things around here. Dave is spending less time on the tv and computer, mostly because I keep him busy. I have a full-time employee in the office who I trust, and I hope he never leaves or asks for more money. Dave's sugar level is increasing, which means he is one step closer to needing insulin, but we aren't there yet.

As I'm reading through this, I'm realizing it is sounding rather like a Christmas letter, so I'm going to stop here. When I am more awake, I'll describe my adventures in trying to get Dave to take karate lessons. Right now, I need something less cerebral.

Enough's enough

2010-07-10T13:45:00.000-04:00

Ok, I have reached the point where I am sick and tired of family members telling me how pissed off they are at my husband because he is so lazy.

This has been an ongoing issue ever since his stroke. His younger sister won't even talk to him. His older sister recently found out how little he actually understands of a conversation. His mom has Alzheimer's so bad, she probably thinks he speaks normally. Heck, the woman thinks her husband, dead ten years now, is coming to pick her up tonight and take her back to Baltimore.

In many respects, you have to feel sorry for my hubby. His own family is of such little help, both from their lack of understanding of his problem, and with their own problems.

What is wearing on me today, though, is my own parents. Dave has been helping to clean his mother's house in preparation for renting it out. This puts him way beyond his ability to manage - for small details, read my previous post about the 30-year-old-prom-dress. When he comes home at night, we cannot have any meaningful conversation - he is too tired, he cannot focus, the words and comprehension just aren't there.

So what does he do? He turns on the TV.

Mind you, he probably doesn't really understand what they are saying. He turns on the prompter, but I think his reading comprehension in that state is minimal. But, TV programs are designed so that you can tell what is going on simply by body language. Just try watching TV sometime with the sound off! Yes, you miss the nuances of the play on words, you don't catch how many years ago your best friend had an affair with your husband, but - you get the gist of what is going on. And my husband seems to get that, even when he cannot catch the words.

My parents are currently living with us, in our attic, helping with the business and the kids for a few months. I really appreciate their help. When they came in this year to help, they said they wanted to spend more time with the kids, less time with the business. That is fine, I'd love for them to spoil the babies.

My dad takes everything in stride. I can tell he gets frustrated on some days, that he feels that I don't tell him what I want often enough, that he feels he is just guessing at what needs to be done. Truth be told, I think he does a great job. He jumps in where he sees a problem, and is usually able to take care of it without bugging me about every little detail. I wish I had a dozen employees like him. Heck, I can't afford even one employee like HIM. But you know what I mean.

Mom mom - well, my mom compares everything to how she would do things, and of course she thinks she is perfect. And, of course, she is not. But don't try to tell her that. She has created some sticky situations for me, but she is my mom, and she is offering her time for free, and I really appreciate the help.

But then there are the personal matters that come up. I really feel like I am caring for five kids. My four, plus my husband. At the end of the day - even on a good day - we don't talk. Like any large family, we don't have much time without the kids. I work 12-18/7, since this is a home-run business. So, I asked my parents if they would mind watching all the kids so that I could have some Dave/Lori time while we were both fresh, maybe go see a movie or go bowling.

My dad says sure, no problem, everyone should have some time off sometimes.

My mom says Dad is so pissed off at Dave watching TV last night, she doesn't think they'll do it. Says Dad is going to ask me if I want this time together, or if Dave wants it. 'Cause if Dave wants, they won't do it. And she was angry, on the verge of yelling, when she said it. It was one of those so-much-hate-you-can-see-the-venom-spitting-from-the-mouth types of things. Which is somewhat amazing, considering the conversation itself lasted only a few minutes.

You know, if they don't want to watch the kids, if they have other things planned, if they don't feel competent to watch four kids between the two of them, that's fine, I understand. It's hard to watch this many kids at once. Dave and I have routines that we follow, and the kids are used to us and know what to expect. I recognize that it is hard, and don't fault anyone for it. We do have a nanny, but I don't like asking her to work weekends (overtime). And we don't have any babysitters we trust to handle four kids at once. I guess I'm saying it's not that I think I am entitled to have them watch the kids for a few hours, but I do understand if they say no.

What pisses me off is that what my mom seems to be saying is that because she feels like Dave doesn't work as hard as other people around here, that I should not be able to treat him as a husband on occasion. If he was paralyzed on one side, I don't think we would be having this discussion. But I have a husband who's ability to communicate is impaired, which in turns hampers his ability to plan, organize, or perform chores on his own. She sees this as laziness.

What really pisses me off, I believe if the situation were reversed, and it was my parents in this position, they would take offense if someone said they were lazy, and did not deserve time together. I feel like there is so much more to say than that, but for once, I don't have the words for it all.

OK, I think that is enough of a rant for now. I'm not even certain I made my point clearly. But thanks for the sympathetic read.

30-Year-Old Prom Dresses

2010-07-03T17:17:00.000-04:00

Oh....Did things blow up today in my hubby's family! What a fitting start to the July 4th weekend!

They are in the process of sorting through their mother's effects, in preparation for renting her house out. A few days ago, my DH came home from a meeting with his older sister with the notion that he had been instructed to sort through the house by himself! I was furious. Didn't they realize he had a stroke five years ago, and had trouble sorting the panties in the laundry, nonetheless 60 years worth of memories?

As part of his sorting, he took a load of clothes from the attic to Goodwill. He thought it had been decided by his sister that they were to be donated. In general, yes, she had. But then she placed a load of "memories" on top of them - baby clothes made by their grandmother and handed down, dresses their mother had worn to various weddings, etc.

Apparently, he wasn't supposed to take anything to Goodwill quite yet, and he was told about it in no uncertain terms - after the fact. But the item that caused the most anger? The white foofy crinoline-type prom dress with a petticoat-style skirt and red highlights that the younger sister had worn to her prom. 30. Years. Ago. (Why? "Because it's the type of dress that never goes out of style." Really?)

It has taken me hours to calm the family down. Dave is nearly incomprehensible, since the more stress he is under, the less he is able to form coherent sentences. I was able to help recover said prom dress, and two of the four bags of clothing he had dropped off. (Note to self - must remember to write them a wonderful thank-you letter. Our crisis should not have become their emergency.)

Dave's family is also much more aware now of how his stroke has affected him. "If I told him once, I told him a hundred times, he just needed to let me know when he would be here, I would go through things with him!" Congratulations, welcome to my world, where he grabs whatever meaning he thinks is relevant to a conversation, and hangs onto it regardless of any evidence to the contrary. Where he nods in pretend understanding, parrots back what you say to him, just so you will shut up and go away so he can act on whatever he thinks you actually want him to do. Because he realizes that his brain does not work correctly, so even though he may have heard you say 10, 50, 100 times that you want to work with him, he thinks that what you really said was something completely different, perhaps even another topic entirely....

Well, so much for wasting my day.

The Siren's Call

2010-02-08T15:22:00.000-05:00

Every time Dave leaves the house, I insist that he take his cell phone with him. It isn't really so that I can get him to pick up a gallon of milk at the last minute, or ask how is day went. After all, he doesn't really understand well without facial cues ever since his stroke. No, I just want to check and make certain he is ok.

Especially when he is driving the kids around, I get a bit paranoid. OK, so it's been, what four-and-a-half years since his stroke? I have to have some credit - he did get into one car accident with Rowan in the backseat. He said he was distracted because she was fussy at the time, hence missed the guy right in front of him who stopped at a red light. That sort of distraction was a result of the stroke - he was concentrating so hard on what she was saying and wanting, and having a hard time hearing it (he has greater trouble understanding high-pitched voices, like a little girl whining, or my mother laughing). And right after his initial stroke, he had a series of TIA's while we were driving around to his therapy appointments. Kinda scary, even when you know what it is.

So just a few minutes ago, I heard a siren whizz past the house, coming from the direction that my husband and daughter travelled just a short while ago. I thought, "No problem, they are headed away from where he is." Then I saw the State Police Helicopter circle overhead. Not good. He landed at a nearby church. Really not good. They only land around here when there has been a horrible car accident, and the occupants need to be medivacked into University of Maryland Shock Trauma. A fine facility, mind you, just not where I want my husband and daughter to be.

So is this where they are? Probably not. After all, these fears are mostly my paranoia. But we just received 23" of snow, the roads are still being cleared, and Dave did not take his cell phone with him. I have to swallow the fear until he returns. And let me tell you, if he has hurt my daughter in any way.....

Blessed are the Caregivers

2009-10-27T23:19:00.001-04:00

Had a mediocre day that turned bad. Made me feel the need to post this:

"There are only four kinds of people in this world—those who have been caregivers, those who currently are caregivers, those who will be caregivers, and those who need caregivers." Former First Lady Rosalynn Carter

Handling Finances

2009-06-05T16:59:00.002-04:00

Sometimes this topic makes me feel all grown-up, sometimes it just makes me want to cry.

Before Dave's stroke, he handled the major financial decisions around. He decided that we could afford the house we have, the cars we buy, etc. I ran the business. It was a good split, since we trusted each other. Even now, we are still affording the house we have, all of it, even though Dave no longer works. The cars are paid off, with one exception. And he had the foresight 20 years ago to start paying into a long-term disability plan. All good decisions, even now.

Now - well, the one car that is not paid off is one that I ok'd the purchase of. Will it be paid off? Yes eventually. In six more years. I don't like having a loan that is that long. But that is how we are able to afford a car that can hold six cars seats and pull the business trailer in a pinch.

The pool finally gave up the ghost. I can't just let it sit there, not with all our kids running around. It needs to be fixed or filled in, both of which costs about the same, and both of which is more than what I have available on my credit cards.

We are looking at the house, and trying to figure out where four kids will sleep, even if/when my parents are out of the house for good. Some walls need to be rearranged to make this happen. Does it need to be done now? No. But, construction costs are the cheapest they have been in years, and if/when the housing market recovers, it will only go up.

But I don't like making the decisions. Dave was always the good ones at this type of decision. Shoot, I'm the one telling him that we shouldn't go see a movie until I can get discount tickets on eBay. Who am I to be looking at spending incredible amounts of money that we would have to draw from the equity on our house?

I'm putting on a good front to the contracters I need to talk to, but right now, I keep repeating to myself, "There's no place like home, there's no place like home." Thing is, when I open my eyes, I'm still in OZ.

Getting stretched to the max

2009-05-13T15:16:00.002-04:00

I am really, really, feeling stretched to the max right now.

My life just seems on standstill. Not only do I manage the business, but I handle Dave's life, the four kids, and most of the interactions with his family. It has reached the point where if it is not something that affects me, I don't want to hear about it. I hate feeling rude about it, but I'm doing what I gotta do.

The most recent thing? My mother-in-law's house.

There are tenants in there. The deal is that they help box up the family belongings and make repairs, in return for living rent-free for a certain number of months. Good deal all around.

But then, the siblings started bickering over who gets what. They aren't talking to each other, at least not well. Neither sister is talking to me. The tenants keep asking me what to do next, and I just don't know what to tell them, since no matter what I do, at least one sister will decide it is the wrong thing to do. Regardless, the family can't decide as a group, what needs to be done. One of those cases of three kids, four opinions.

For as much as I like her, I am not a trustee for my MIL, I don't want to be a trustee for her, this situation is awkward all around, and I already have too much on my plate to deal with nonsense like this.

Anyhow, thanks for letting me spout off. I need to get back to my bees now. 60,000 bees per hive, each one driving towards a common goal - the survival of the hive. I can really appreciate the order they represent....

Beating my head against the wall

2009-04-20T16:17:00.002-04:00

I so feel like I am fighting a losing battle. I should not feel like I am in a battle, or fighting, or losing....

We have decided that my hubby does better with a written list of things-to-do. I write the list, go over it with him, then get started on my day. That does not always work, but it is a good starting point.

The other day, #1 on the list was "Find me when the nanny gets here." I pointed it out to him, and made certain he understood I had a job for him once someone came around to watch the kids. At least, I thought he understood. He sent the nanny out to me. Twice. I told her (in Spanish) that Dave did not understand, I want Dave to come out for a few minutes. The nanny is a good woman, but she speaks broken English with a strong accent, and Dave has trouble talking and hearing.... Who's on First comes to mind.

Today, I asked Dave to swap car seats for me. It wasn't on the list, but he did it. It was a complicated matter, involving removing the strollers (yes, plural) so he could access Rowan's car seat for me, putting the strollers in the garage, and transferring the car seat in such a manner that Rowan would be safe. And he did all that just fine. I did not ask him to close the back end of the vehicle when he was done, so he stopped after transferring the carseat. Since it was pouring down rain, things got a bit wet...

And, like many men, he does not understand that he is not supposed to be our daughter's best friend. If she misbehaves at lunch, you do not give her popcorn and send her to her room. Talk about mixed messages! And then he wonders why she doesn't take a nap, or listens to what he has to say. He told me he was being nice to her. He is supposed to be her daddy, not her best friend. A 3-year-old will eat popcorn and candy all day if allowed. The daddy is supposed to say, "No".

So where does this leave me?

I'm the mean mommy, I guess. Dave is frustrated with the necessity of me having to write a list for him everyday, but he prefers it to no list. He is tired of realizing that there are some things he just doesn't get. Rowan acts out cause she doesn't understand the mixed messages she gets. She behaves much better for me than for Dave, but I can't have her in the office with my 24/7.

I have a friend who is into the entire domination/submissive subculture (he's a dom). I think about him periodically these days. He has a few women who live with him and he takes care of them. Sex aside, my understanding is that he does not leave them wanting for anything, as long as they do what he tells them to do. The situation seems to work for them. I can see how it would be a good relationship, if the trust really is there.

There is another guy I know in the dom/sub subculture. He wanted me to dom him, but that is another story, best told over several drinks. He was married, with kids. I asked him why he did not bring his wife into this lifestyle. His wife, he said, was his partner, not his master, and it was best to keep the two lifestyles separate.

I find myself thinking of these things recently. I take care of the bills, manage the money, figure out what we can afford to do and when to do it, find activities for the kids, direct the husband, nanny, kids, business. I am seeing myself more and more in a dom-type role. Problem is, I signed on for a partnership, and Dave is no longer a partner. He wants me to handle the money, he wants to be taken care of, he wants me to tell him what to do. I kinda feel like if this new role came with an instruction booklet, maybe I would cope better myself.

Well, what started as an obvious rant on life seems to have denigrated into a bit more insight into my personal life than I intended. Looking back on what I have read, I think I will leave it at that. Maybe someone can recommend a good book.

Maybe he is just being a guy....

2009-04-02T21:26:00.003-04:00

I have almost decided that Dave did not have a stroke. He is just being a guy, and figured out how to get away with it.

Other people periodically ask me about Dave, and in my lower moments, I commiserate about how it gets tiring to have to remind him to flush the toilet, brush his teeth, feed the kids, go to the doctor's office. What I invariably get from everyone is, "Oh, my husband is like that, too!"

Then there are the times like today. We were at our daughter's pre-K, and they were having their Easter party, since next week is Spring Break. I asked Dave to get the camera out of the trunk of the car so we could take pictures.

"At home?"
"No, in the trunk of the car."
"In the back room at home?"
"No, in the trunk of the car."
"The car at home?"
"No, the car here. The trunk of the car here." (Gesturing towards the parking lot.)
"That car? Our car?"
"Yes. That car. In the trunk. In the back." (Gesture towards the car, then behind me as I pantomine driving the car. The kids are starting to think this is a great game.)
"Where in car."
"In the trunk. There is a basket." (I indicate a round basket with my hands, then pretend to pick it up by the handles and carry it.)
"In our car?"
"Yes. Our car. There. In the trunk. You will see it on top of the basket." (I use our sign for "look", then indicate a basket again.)

The kids are getting ready for an Easter Egg Hunt. The 3-year olds completely get the basket idea. Basket. Car. Right.

So, he goes out to the car. I can see through the window. He spends 10 minutes checking the back seat, moving papers, looking under the seat. He finally opens the trunk, immediately sees the camera, and comes back inside.

I don't want to hear how your husband is "just like that".

Misstatements and Children

2009-01-08T23:41:00.003-05:00

Dave has been practicing some of his harder-to-say words again, and I just had to record them here for posterity. It really is interesting what comes out sometimes.

For instance, there was the one time he wanted to tell one of the girls that works for me that she was pretty. So, he called her a whore. Luckily for me, she understood and took it in good grace.

Dave invariably used to refer to our daughter Rowan as He and Him. I finally broke him of that habit. Unfortunately, he now refers to our identical boys as Her and She. I keep telling him that he had better correct that before they get to school age, or else they will get beaten up the first time he picks them up at the playyard. He nods his head in understanding, closes his eyes, thinks really hard and gets the right words out. I wish he would try that hard the first time.

When we were younger, we used to kid with each other. "You're silly!" I would exclaim. "No, I'm not, I'm affectionate!" he would reply. Now it comes out as, "I'm infectious!" I keep telling him that he may be that too. He has not been able to get that word correct yet, despite hard practice.

It was a bad day when he tried to help my parents by taking their clothes upstairs for them after they were done in the wash. "I've taken the trash upstairs for you." Yep, bad day indeed.

This evening, I had to look twice when he looked at one of the babies and said, "You can't eat that, you need teats!" I then had him practice making the "th" sound. "TeeTH, teeTH!" I would say. That is remarkably hard for him, and he can pronounce it correctly after multiple tries, but it doesn't seem to stick.

'Course, I have to wonder about how his speech affects the kids. Rowan does not enunciate as well as other kids, and has trouble being understood. I have to wonder how much Dave has influenced her speech patterns. Rowan is also old enough to start correcting Daddy. If she asks for milk, and he says water, she says, "No Daddy, Milk! Milk!" It saddens me that she has to correct her father so often at her young age. She is only three, after all.

Still, none of us are perfect. My father was talking to me this evening, and repeatedly called my daughter by my sister's name, Jeannie. Rowan does look a lot like my sister when she was about the same age, but as I pointed out to Dad, one of them was bound to be annoyed if he said that to their face. So he took to calling them "the taller one" and "the shorter one".

Aphasia Day Care (with the triplets)

2008-11-03T09:48:00.006-05:00

Well, the babies have been home now for six, maybe seven weeks. None of us are getting much sleep. Understandably, I think. Many things have become fuzzy. Like the passage of time.

A reporter came to our house and wrote a wonderful article about the babies, titled "Triplets Born with Rare Condition Defy the Odds". You can find it on Yahoo Buzz on the following link. If you have a yahoo account, please go there and vote (buzz) for it. I'd love to see it move up the popularity list!

http://buzz.yahoo.com/article/1:0b68809b4274cd2fcd3bcdfb7b13f399:5f19093f75e9a2dbfd305c12b7bdf455

If you go this next link, you will see the exact same story, but it has pictures of the boys as well (one at the top of the article, and a closeup of the boys towards the bottom):

http://somd.com/news/headlines/2008/8613.shtml

And, of course, the obligatory picture from home:

There is no lack of love for the babies, but I easily get frustrated with Dave these days. I'm sure the lack of sleep plays into it. I often get only 2-4 hours of sleep each night. Dave routinely gets 7-12, then complains that he feels too tired to do anything. Playing 20 questions with him (because of his aphasia) has not been fun for a very, very long time. He stays up until 7AM before waking me up for my shift with the boys. He thinks of it as doing me a favor - trying to let me sleep more. What he just doesn't get, no matter how many times I try to explain this to him, is that I need two people awake during "normal business hours" so I can try to spend a few hours each day working on the business - making phone calls, paying bills - without attempting to watch four kids at the same time. If I can just get him to stop waking me up every time one of the babies smiles after 8PM, I can sleep earlier in the evening, he can be in bed by 2AM, and we can get everything done that we need to get done....

Oh, and he is back to watching TV while holding a baby in his lap. I lost track of the number of times the baby had a bottle in his mouth, but was not actually eating. Dave calls it his "bonding time" with the kids. I see it as an excuse to watch TV - he isn't really paying attention to the kids. I wish he would do something like feed the kids, and spend the free time washing and folding clothes. Something useful. (He could even do that in front of the TV - but then it would not be fun!)

Unfortunately, I feel like I am back to beating my head against the wall. It has become easier to give him the silent treatment, ignore what he does, then to explain over, and over, and over again why I would like clean underwear, why he needs to go to bed earlier, why the boys need to sleep at least part of the day with the light off and in their own bed. He has asked me why I have stopped telling him that I love him. It is hard to feel that, when I feel I am taking care of 5 kids - a set of newborn triplets, a 3 year old, and a 44 year old stroke patient.

Then, to top everything off, my mom is in the hospital right now for surgery on her ankle. My parents have been living with us since Dave had his stroke, and have pretty much been running the business for me through my pregnancy and these first few months with the boys. With my mom laid up (which she will be for many weeks while she recovers), my dad will be at her side. So, time has suddenly become much tighter, things have become more stressed.

Well, I think I will end this post here. I seem to have run the full gamut of emotions. Gotta save something for next time!

The Boys Are Here!!!!!

2008-08-16T17:25:00.003-04:00

For anyone who has been wondering, the triplets have arrived!

ONE of my waters broke on 7/30 (there were three amniotic sacs, only one broke...), but the docs were able to delay delivery for a few more days - it allowed a few injections of steroids to help develop their lungs. After all, they were born at only 29 weeks and 2 days!

Pics are below - Arthur Raymond Titus, 2lb 14oz, 15 1/2"; Brannon Ash Titus, 3lb 5oz, 15 3/4", Charles Ares Titus, 2lb 13.7oz, 15 1/2". These are the birth pics - they are off the ventilators, breathing tubes, and IV's. They are fed milk via feeding tubes (they are still learning to swallow), and are being treated for jaundice and sleep apnea (which is "normal" for preemies). We are allowed to hold them, they seem to recognize our voices, and they track fingers in front of their faces. In general, we are extremely pleased with their progress. Since we live an hour away, we are trying to see them every other day. When I heal up enough (I had a c-section), I hope to get a room at the local Ronald McDonald house so I can spend every day with them!

Dave's Stroke in the Bay Weekly

2008-08-08T16:40:00.003-04:00

If anyone is interested - this is an article that was published a year or two ago regarding the Maryland Renaissance Festival. I have been a part of the MD Renfaire (www.rennfest.com) for about 20 years now, in one form or another. I dragged poor Dave into this when we started dating..... And now The Bee Folks (http://www.beefolks.com/) is a major attraction at the festival.

I was approached by a reporter for the Bay Weekly looking for stories of interest from the Renaissance Faire. We initially spoke by phone, and she eventually came to our office to see our operations and to hear more. Some of what she took away that day made it into her article, including a mention of Dave's stroke and the Faire's reaction to it.

The entire article is interesting and is an accurate representation of the Faire, but if you want to skip to Dave's part, look for the section titled "The Spirit of Revel Grove", about half-way down the page.

http://www.bayweekly.com/year06/issuexiv33/leadxiv33_1.html

This summed up my feelings

2008-06-21T19:46:00.003-04:00

Just a quick post:

When Dave had his stroke, this was hot on the radio. Every time I had to drive from one hospital to another, or the few times I went home to take a shower, I heard it on the radio. It really summed up my feelings at the time. Made me cry back then every time I heard it, and looking back, I should have pulled over to the side of the road every time I heard it.

Shoot, it still makes me cry when I hear it.

The song is called Broken, by a band called Seether, and the version on the radio featured Amy Lee from Evanescence. I have read that the song was originally written by the lead singer of Seether about his wife and daughter when he had to leave them. To me, it expressed everything I felt about wanting to protect Dave through those troubling times. The first version is the video with Amy Lee, the second is just Seether. Both are links to YouTube.

http://www.youtube.com/watch?v=AKGpZuadMsA

http://www.youtube.com/watch?v=x4XQfDd0iMc&feature=related

Update on the Family

2008-06-09T09:57:00.005-04:00

I must admit, Dave is handling everything very well right now.

While we were down in Florida, he spent very little time on the Internet and watching TV. The exact opposite of what he did up here, where he spent the first 2-2.5 years post-stroke watching TV cartoon shows under the pretense that he was "doing homework". While in Florida, his speech skills skyrocketed in a way that I never would have dreamed of, this long post-stroke. All I can figure is that he was forced to interact more directly with the world, and that this new stimulation to his brain jump-started some neural pathways.

Don't get me wrong. He still has lots of issues, and still flubs majorly while under stress or when tired. I still don't see him going back to work, dealing with clients and contracts. But, especially when I am tired from the pregnancy, it is nice to be able to communicate more easily with my own husband.

Now, with me being pregnant, he is still spending much less time on the computer and TV, and actually doing work around the house. YEAH! In my mind, this is helping him as much as me, just based off the Florida experience. I have stopped fretting about Dave trying to sleep in until 2PM, and I spend more time thanking him for washing the dishes, watching our daughter, and making certain that I always have something to drink.

Maybe this sounds kinda selfish. However, a few weeks ago, the babies took a turn for the worse. I went in for one of my "routine" sonograms, to find out that they are in stage two of twin-to-twin transfusion syndrome. If you look up TTTS on google, you can find all you ever wanted to know about it. But, in brief, one baby was hogging a good portion of the blood flow from the placenta, and because of this, another baby wasn't getting enough. At the time, I had 6-7 weeks to go until the babies were viable. Left untreated, all three babies were likely to die in utero, or if they made it to 26 weeks, they would be born with major heart and brain problems and have to be cared for for the rest of their lives.

So, I underwent an orthoscopic laser surgery to correct the problem. I came through the surgery just fine, and the babies seem to be doing well so far. Dave and my parents took turns staying with me in the hospital. That is saying a lot for Dave - he hates hospitals. Between his own stroke and his parent's illnesses, he has only seen pain and suffering at hospitals, and prefers not to go at all. But he was there for me.

Now I am two weeks post-surgery, and back at home on bedrest. Dave has been an angel, keeping house, rubbing my feet, making certain I eat, test my blood sugar, making certain I take my medications, driving me to and from the doctor appointments.... Every now and then we joke that I spent the second half of my last pregnancy taking care of Dave, that it was all about Dave, and now it is Dave's turn to take care of me. Or that he is fobidden to have another stroke (his three-year anniversary is July 4). Or that it sucks that I have gestational diabetes, and can't send him out for Ben and Jerry's at 3AM just on principle.

I am feeling very lucky right now, that Dave is able to help so much. He better not have another stroke.

(Oh, and since I don't think I have mentioned it yet - the docs have decided we are having identical triplet boys. Dave wants to name them Thor, Zeus, and Mars. I'm not certain if he really wants those names, or if he is just saying that to get my dander up! Never a dull moment around here....)

How to double the size of your family overnight!

2008-04-21T18:25:00.004-04:00

Just to make life a bit interesting, I am pregnant.

Dave took the news well. We had decided to try for another child. After all, Dave seems stable and more-or-less capable, I'm not getting any younger, and we were going to run out of chances soon. So, it seems that, while at Mardi Gras in New Orleans, I became pregnant.

What Dave didn't take well was the news a few months later. You see, we found out I was pregnant while merchanting at the Florida Renaissance Festival - a two-month show just north of Miami. We learned this after a home pregnancy test after the first weekend of sales. I was very careful at the show - drank lots of water, avoided alcohol and second-hand smoke, ate appropriately, slept a lot, let others do the heavy lifting for me. After the show was over, we went and spent a week at Disneyworld, on the way back home to Maryland. Honestly, I'm glad we did, because I certainly would not have enjoyed Disney so much if I had known what was coming.

We returned home on a Thursday night. Early Friday morning, I found I was bleeding. I called my midwives, and after some discussion, decided I didn't need to go to the hospital, but that I should go for a sonogram THAT DAY. And I did. I take the health of the babies very seriously.

Now, keep in mind, a sonogram SHOULD take about 20 minutes. They look at the kid, look for things like arms and legs, measure anything that can be measured, enter all the stats into an equation, and determine if the kid is growing appropriately.

THIS sonogram took an hour and a half. The tech and I were talking the entire time. "Did anyone come with you to drive you home?" "Is anyone waiting for you in the waiting room?" Such questions got me nervous, but we spoke of other things too, like her kids, the whacky weather, and whether or not I liked the midwives I was using. After a while, she said she was having trouble with some measurements, and needed to take the "alternate route". For you women out there, you know what I mean. For the men out there - the "normal route" is on top of the belly, so use your testosterone-laden minds to determine where an alternate route might lay. If you still can't figure it out, try this: Once the tech had been taking measurements for an extended period via the alternate route, I told her I wanted a lollipop when we were done. When she asked, "Why?", I told her it was because I don't smoke.

So, after an hour and a half, the tech finally looked at me and said that the office policy was to not discuss the results of a sonogram with the patient, and to let the docs and midwives discuss them with the patient. But, after such an extended exam, she felt she could tell me something.

"Would it be a bad thing if you found out you were having triplets?"

Needless to say, my jaw hit the floor. There is no history of multiples in my family or Dave's family. I probably shouldn't have driven home, but I made it, in shock.

Then I had to tell Dave.

I was able to bring some pics with me from the tech's office. I showed Dave one pic, where you could clearly see two babies. "Twins?" he said, clear as day.

"Triplets," I replied handing him another photo.

The last clear words that came out of him for hours was, "We can't do this." Then he went and curled up, fetal position, on our bed. I called one of the managers that work for me, and asked him to take Dave out drinking that night. That seemed to really help.

I didn't really break down until Easter Sunday. I called my sister, and her and her boyfriend were nice enough to have an unexpected Easter dinner with us. She sat with me for probably a few hours in the bedroom, and we spoke on various topics, including the pregnancy. She got me to the point where I could finally go take a shower and eat something. The next day, I saw my chiropractor (who has special training for pregnancies). He adjusted my neck and shoulders, and I have been more-or-less functional ever since.

Dave and I have been asked, on multiple occasions, "Is this congratulations, or condolences?"

Let me put it this way. I like new and different things, and this is certainly a new and different things. The idea of potentially having three little lifes as sweet and charming as our 2-year-old Rowan is definitely thrilling.

On the other hand, the odds of natural, spontaneous triplets is 1:8200 (or about .0122% of all births). Oh, and just this last week, I have learned that there is at least a set of twins in there, and it is quite possible that they are all identical. The odds of identical triplets? Something like 6% of triplets are all identical (which means 1:136,666 of all births), and 66% are identical twins with a fraternal brother (which means 1:12,424 of all births).

So, despite the excitement, I also feel like a freak.

I'm going to leave the story at that for right now, and continue it later. I have a lot of info I need to digest right now (and maybe you do, too). But don't worry - you will be hearing more on this subject later.

The importance of spelling

2008-02-29T15:54:00.001-05:00

I have seen things like the below before, and find it incredibly interesting. Course, the next question is whether someone with aphasia can also read this. Or, for that matter, if someone who is dyslexic.....

cdnuolt blveiee taht I cluod aulaclty uesdnatnrd waht I was rdanieg. The phaonmneal pweor of the hmuan mnid, aoccdrnig to a rscheearch at Cmabrigde Uinervtisy, it dseno't mtaetr in waht oerdr the ltteres in a wrod are, the olny iproamtnt tihng is taht the frsit and lsat ltteer be in the rghit pclae.The rset can be a taotl mses and you can sitll raed it whotuit a pboerlm. Tihs is bcuseae the huamn mnid deos not raed ervey lteter by istlef, but the wrod as a wlohe. Azanmig huh? yaeh and I awlyas tghuhot slpeling was ipmorantt! if you can raed tihs rpsoet it.

The Stress of Christmas

2007-12-24T02:00:00.000-05:00

I'm probably more tired than I realize. It is, after all, 2AM here on the East Coast. More than that, though, is the number of orders I received from my website at www.beefolks.com. "Unprecedented" hardly describes it. I might also try "phenomenal".

Still, filling these orders has left me drained and tired. Now that it is the day before christmas, orders have slowed drastically, but they are still trickling in by those who either want honey for coughs and colds, or those who, like me, did not get a chance to shop until the last minute.

Now during all this, I am trying to make certain my husband is still keeping a watchful eye on the toddler. One day, I walked in to find the two of them watching TV at 11AM. I do not believe in using the TV as a babysitter, and I firmly believe that Rowan needs more exercise than she is currently getting, so I ask him to turn off the TV and find something else to do.

I walk in later to find Rowan asleep in her room, but Dave watching TV and playing online poker at the same time. I ask him to stop both, since there were things that needed to be done around the house, and naptime was a great time to get some of them done. Like laundry. I had not had clean underwear in a week, and I was on my last pair of pants. Although I might enjoy running around buck naked once in a while, I try not to do so in the office. So, Dave turns off the TV and the computer.

Once again, I come back later to find Rowan watching TV, and Dave playing poker online. He informs me that it is ok, because she just woke up. And, he had decided what he wanted to do for a living - he wanted to be a full-time poker player.

I went ballistic. I made Dave take a long, long drive around the countryside, for several hours, so I could cool down. He wanted to take Rowan, and I made him leave her with me. I took the afternoon off so I could watch her. It was NOT ok for him to use the TV as a babysitter, it was NOT ok for him to watch TV and play on the computer when the house was a wreck and I was on the verge of taking a bath with my clothes on, and it certainly was not ok for him to play online poker BECAUSE Rowan had just woken up!

He only left because I threatened to otherwise go find a hotel room for Rowan and I, and that I would come in during the day to work in the office.

I love my husband dearly. Sometimes, he almost seems like his old self. But when things like this happen.....

While he was gone, I checked his computer. He was only playing free games - he had not uploaded any actual money to the site. Then I packed up his computer and hid it. It's not that I have anything against poker, or my husband playing poker. He is good at the free online games, but he doesn't understand that the money games are played differently. And, the one time he tried an actual live poker room, he could not understand the table talk, and the low buzz of noise from the players and TV sets were too distracting for him to concentrate. Most importantly, he doesn't need to play when he is supposed to be watching a child.

When he returned, I firmly told him that this was not going to be the example that Rowan was going to see growing up. That he needed to change his ways, or else I would help him find an apartment that his social security check would pay for, and he could watch tv and play games all day there. Told him that my parents had already offered to purchase his half of the house if we were to get a divorce, and that if he kept on his current track, it would be a strong possibility of actually happening.

He keeps saying that when his father was on disability, his dad would just sit around the house all day and watch TV, drink, and sleep, and at least he wasn't drinking. Which is true. But I asked him if he would want his daughter to marry someone who sat around the house all day watching TV and playing on the computer. Did he want to set that example for his little girl? Doesn't he want something more for her?

This is not the first time that it happens -- one time, I kicked him out of the house for an entire week so that he could gain a better appreciation of what it takes to live without all the help I and my parents have given him. (The straw that broke the camel's back was when he told me I could work myself to the bone if I wanted to, but that his SS check was his contribution to household income, so he was going to watch tv and play on the computer all day. That was the day I decided that Rowan was NOT going to have that as a male role model, even if it means divorcing Dave.) I get very, very frustrated when he is like this. At least he seems to have taken my words seriously this time -- until the next time the TV catches his eye...

End of year worries

2007-12-11T00:52:00.000-05:00

With the end of the year coming up, my mind keeps racing over some of the "problems" I'm facing.

First of all, Dave and I always kept enough life insurance on ourselves such that if one of us were to pass away, the house would be paid for. Well, neither of us passed away. Dave's company carried his life insurance for a bit, buy once they terminated him, we no longer had the option. Now, I can't imagine that he would qualify for any kind of life insurance, anywhere. He is only 43, and uninsurable.

Couple that with the recent realization I have been having that yes, we survived this stroke. But, Dave is six years older than me, has already had one stroke, is a bit overweight, and is a diet-controlled diabetic. Now, I realize that many stroke patients live for years, if not decades, without another incident. Dave's great-aunt was like that - she had a stroke in her 50's, and lived well into her 80's. But one day, it hit me like a runaway train - statistically speaking, Dave is going to predecease me, and it could quite likely be sooner rather than later.

Then there was the Christmas party that his stroke club/support group had the other day. I and our daughter were invited, and I figured it would be fun to get away from the business and the house for a few hours. Instead, I found myself looking at all these stroke patients, working so hard to overcome their individual obstacles, seeing how it has affected more than one life in so many cases - and I saw clearly that the problems we are having now, we will continue to have for years to come. I hope it is not being too selfish, but I felt a great wave of self-pity for most of that party, and kept trying to hide my tears.

Well, I just wanted to get that down on paper, and there it is. Now that it is off my mind, I can get back to work. Merry Christmas, one and all.

Dave has posted in his blog!

2007-12-03T00:48:00.000-05:00

Yea! Dave has finally taken the big plunge and published in his blog! This makes me so proud of him!

I think he has been nervous about a public view of his current writing ability. He worked on his blog posting for weeks, and I finally had to tell him that it might not be perfect English, but that if we waited that long, he would never post.

His first post is describing (in part) his stroke and who he is/was. If you have a moment, please view his blog, and perhaps even leave a note for him. Thanks!

On an unrelated note - has anyone viewed the movie "picturing aphasia"? I came across this description, I'm wondering if it is worth the effort of finding it.
http://moviemusicreviews.blogspot.com/2007/11/picturing-aphasia.html

In response to a recent email question I had, you might look at the following article about a woman who ended up divorcing her husband after he was diagnosed with primary progressive aphasia. He actually asked for the divorce, and it has been an emotional rollercoaster for her. The article explains it a bit, as well as her road to self-realization:
http://seniors-world-chronicle.blogspot.com/2007/11/usa-race-aids-healing-for-ex-wife-of.html

My Husband's Blog

2007-11-20T02:40:00.000-05:00

Well, I think I finally managed to do it. I think Dave is working on a blog now. Well, he has it setup at any rate. I just checked it, and he has not actually posted to it yet. But, it is http://aphasiarecovery101.blogspot.com/. He will probably write about how mean I am to make him do this, but he really does need to write more.

Troubles with Social Security

2007-11-01T20:26:00.000-04:00

Ugh, I'm so disgusted with Social Security. My husband has been considered disabled for nearly 2.5 years now. He should be enrolled in Medicare automatically as of December 31, but I have not seen any paperwork on it yet. I also had questions about what the money our daughter is receiving should be going towards, since we are going to get audited once a year on it.

I called SS to ask these questions. The first gal refused to check Dave's file to see if I was listed as his rep until Dave could provide her with his mother's maiden name. (Yes, that is what she said, she would not even open his file to check until HE answered the security questions.) Well, he has aphasia. One of the things that he CANNOT say is his mother's maiden name. When I tried to help him pronounce it, the gal said that I could not answer for him, and refused to have anything else to do with us.

I called back, and got a gal who just would NOT shut up. She was trying to tell me that I had to go to the local office to ask my questions (the LOCAL office is an hour away). I could not get a word in edgewise. I finally said, "Would you shut up and listen to what I have to say?" She said, "You did not just tell me to shut up!" and immediately put me on hold for five minutes. Now, keep in mind, it takes about 15 minutes to get a live person on the phone in the first place. When she came back on the phone, she said, "Now where were we?" I said, "I want to speak with your supervisor." She said, "OK," and hung up on me. HUNG UP!!! Social Security is supposed to be there to help people, not give us this BS!

I called back a third time, in tears. I reached a kind man named Thomas, who had one of those voices that was very soothing to listen to. He actually took the time to explain what all had just happened (it turns out I was not listed in the computer as Dave's rep, even though I could have sworn we had arranged that when I filled out the paperwork 2.5 years ago). He patiently allowed Dave to practice saying his mother's maiden name, and was willing to accept the fact that he was as close as he was going to get, considering his aphasia. He answered my questions very quickly and kindly, and seemed very knowledgable. Considering my treatment by the other two reps, I was very grateful.

Keep in mind, I was not asking for any personal info. I was asking when we could expect info regarding Medicare to arrive in the mail. There should be a standard answer for this, regardless of who the rep is talking to (Thomas said that it is within 2 months, and that I should expect it sometime this month). I was asking for approved expenditures as a representative payee for my daughter. There should be a list somewhere (the pamphlet is a bit vague, like it does not mention if her payments can go towards the mortgage - Thomas said it can). It is not like I was asking for his social security number, address, amount received, etc. I just had general questions.

Oh, the cool thing about Thomas was that it turns out he is completely blind, since birth. He has a seeing-eye dog under the table. I did not think to ask him how he was able to read the computer, but I guess there are standard processes for such things these days. When he heard I was a beekeeper, he told me about how a friend of his had taken his hand, placed it in a hive, and allowed the bees to crawl all over it. Thomas said it was rare that he could tell someone about that experience, and how special it had been for him. I told him about how my daughter, who was 9-months at the time of this incident, had figured out how to open one of our observation hives, and had laughed as the bees had walked and tickled all over her hand, and did not get stung. I also told him how a blind man had come to our shop several weeks ago, and we had placed his hand on the glass portion of the observation hive so that he could feel the vibrations of the bees as they kept their babies warm.

I guess I had a bonding moment with Thomas. I plan to write a letter to Social Security, and forward copies of it to my congressman and the congressman in the Ft. Lauderdale area (where Thomas works). Hopefully, I can get someone yelled at, and someone else a commendation.

Don't Forget the Baby!

2007-10-24T19:57:00.000-04:00

One of the things I feared most happened last night. I asked my husband to go out to the office (we run a home-based business, the office is practically in our garage) to check on something. On the way out, he nearly stepped on our toddler, Rowan. I mean, he had to step around her because she was in the doorway, and he closed the door behind both her and him.

That wasn't the bad part. About five minutes later, I heard a pounding on the outside screen door. It was Rowan, asking to be let back in! Dave was in the office with the door closed. I went to confront Dave, and he said that he, "Never heard her."

This scares me to death. I had hoped to take a short, just-me vacation in a few weeks, just find a hotel somewhere where I can have a bath without either Rowan or Dave bursting in on me, where I can read a book without disruption, take in some sights without translating in rough hand gestures for Dave. How can I leave, if I am afraid he might not "hear" Rowan in some other situation?

And let's not forget for a minute that this really had nothing to do with "hearing" Rowan. He had to step around her to get out the door. He almost stepped ON her on the way out the door. He closed the door behind the two of them. I know his attention wavers, a side-effect of the stroke. But, how could he not pay attention to our little girl?

What am I going to do?

Who is my husband?

2007-10-13T02:44:00.000-04:00

It is really late, and I am really tired, and that is when I have thoughts like these:

I get soooo frustrated, just as much as my husband, but for different reasons. I need to know that things will be ok. I need to know what mannerisms are my husband, and which are "just the stroke talking". Is he being obstinate? Is he punishing me because I can still talk?

That last sounds bad. He does not physically hurt me. But, for all the times I have had to push him to do his homework, for all the times we have had long discussions, only to find out that he said the complete opposite of what he intended all the way through, for all the times he has told me that he will do something, then magically "forget" five minutes later..... It is all very tiring, and even after two years, I find myself crying while he is asleep, wondering when I will be able to trust him enough where I don't have to double-check his every move.

I think back to when his stroke first occurred. One of the few times I was home that month, I jumped online and looked for an online support group. I found one - I don't remember the name, but is was for young stroke patients, and it was riddled with spammers. I posted to one of the groups that had recent activity from real stroke victims, and posted a plea. "I am five months pregnant, I feel all alone, my husband just had a stroke, I don't know if he will be alive tomorrow, I need to know everything will be ok."

I'm still looking for an answer.

Keep looking for support groups!

2007-09-16T02:11:00.000-04:00

When my husband first had his stroke, there were no caregiver support groups near us. Well, if I wanted to travel an hour each way, I could find one. At the time, I was struggling with my pregnancy, caring for my husband, and hanging onto my job by my fingernails. At least, that is what it felt like.

I recently spoke with someone from the local Maryland Brain Injury Association. I had contacted them looking for a neuropsych counselor for my husband. However, they have been calling me every few weeks, checking to see if we need more help, etc.

The last time they called, I commented how I had little time to help my husband right now, since this is the busy time of year for the family business. I also mentioned how frustrated I was, trying to manage his healthcare, my daughter's life, and the business by myself. The woman on the phone was able to find a caregiver support group that is about 1/2 hour away, and meets once a month. I am hoping to go to it.

For what it is worth, I am of the belief that regardless of whether a loved one has had a stroke, car accident, or other injury, many caregivers experience a common sense of loss. I guess what I am trying to say is, if your loved one had a stroke, don't limit yourself to caregiver support groups that care for stroke patients.

Caring for a Young Stroke Patient

2007-07-23T10:52:00.000-04:00

My husband had a stroke on the morning of July 4, 2005. He was the ripe old age of 42 when it occurred. Not the youngest person to have had a stroke, certainly. However, when you go to therapy sessions, the average age of the other stroke victims is 70-80.

I was six months pregnant when this occurred. Our daughter is now almost 2 years old - Rowan Ann Titus, aka The RAT, or Princess. She has certainly be the love of our life, and I don't know if I could make it without her to brighten my day.

When Dave had his stroke, I spent the following month next to his bedside in the hospital room. It is a long story - check out myaphasia.com for details. The nurses were all real nice about it. My midwives were at the same hospital, so the nurses made certain I made an extra appointment to see them, to make certain I was handling the stress ok.

I remember how stressful it was back then - we had moved to the country, I felt all alone, and I have yet to find a caregiver support group. Still, I felt that as soon as Dave returned home, we could start the road to recovery, and we would be a happy family unit again.

Not quite so.

Dave has an extreme case of Aphasia - it affects his ability to read, write, hear, and talk. At one point early in his stroke, he could not understand anyone, or speak, or write, or, well, you get the point. Dave was a computer programmer, close to earning a six-figure salary. That was gone overnight, and it looks as though he will not return to his programming, ever. How can you program, if you cannot write?

In brief, that is our story. I am finding that, two years later, we are still having problems and hardships. I decided to start this blog so that other people who are suddenly thrust into the roll of a caregiver may realize that they are not alone. With luck, this blog may turn into our own little support group....