The Stress of Christmas

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

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!

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

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

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!

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?

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!

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

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....