Dennis the Menace

It's 2:38 am on a Thursday morning. Why am I awake?

No, I did not wake up and suddenly need to go to the bathroom. No, although I often do wake myself up snoring, that is not the case either. It, of course, is Dennis.

So what did he do this time?

He has been worried lately, about everything. He is sure that his feeding tube is plugged. He is positive that Raquel and I are plotting against him. He thinks that his catheter isn't draining properly. He isn't eating. He isn't getting out of bed. He isn't having any fun.

And he wants to make sure that I am miserable, too.

We talked when I came home from work, and I thought we had moved ahead, a bit. But then he woke me, at 2ish, to check his catheter. I, very unhappily, crawled out of bed (we keep the temp at 62 degrees, so it is COLD) and put together a set up for unclogging the tube. I inserted water, and then pulled out nice, clean and unclogged urine. No blood, no clots, no nothing but urine. Now he feels better and I am sitting here stewing.

No, he really doesn't want me to be miserable. too. But he is very high maintenance - not a quality that I admire.

We will get through this period. We always do. In the meantime, I have my computer, a free blog site and you, my dear readers (who said that?) to listen to me.

Until later,
Ann and Dennis

Another Emergency Room Visit

In my last post, I mentioned that I had lost Dennis' sleeping pills. Well, as it turns out, it was a good thing they were misplaced that night. (Yes, they have been found). We ended up calling 911 and sending him off to emergency because his catheter had fallen out. After 6 hours, we were back home, sleeping, but not until I had learned a few new lessons.

1. Don't cut the stitch, even if it is tearing the skin around the insertion site. I did this a few days ago, and the added protection of the stitch was gone when the balloon failed.
2. Balloon's fail. When they fail, they look the same as a shriveled penis; nothing like the blown up version.
3. Pay your insurance premium, no matter how over priced it may be. I have been complaining about how much we are paying, since COBRA ran out and Medicare isn't available, yet. But, in one short night, we covered the monthly payment of the premium.
4. Not all irritating occurrences happen during a full moon.

All was well after the change of the catheter. Actually, Dennis seems to be feeling better than he has in a while. Maybe it was a bad insert. Maybe it was simply, that Dennis wanted to see a really HOT doc (and, oh, she was hot!), instead of the milquetoast that didn't seem to care after the surgery. Or maybe, it was just a sign that missing a doctor prescribed drug isn't always a bad thing.

Super Pubic Catheter

Dennis and I had a consult with a urologist today that does prostrate surgery. Dennis has decided to have a super pubic catheter placed instead of the Foley catheter that he currently uses for his urinary issues.

For those of you that have no idea what I am talking about, a Foley catheter enters through the penis. An SP, or super pubic, bypasses the penis and inserted directly into the bladder through the pubic area. I have no idea what this will look like, but happily, only a few of us will ever have to see the whole business in it's entirety.

We are waiting, however, for the actual surgery until August. We have so much to do in regards to my mom in June and we hope to visit Ireland in July. Surgery before we leave the country, even if it is minor, seems reckless. Why test fate if you do not need to?

Dennis is looking forward to this change. He complains of discomfort constantly with his current catheter. Then again, Dennis is prone to whining, anyway. Just another one of the reasons that I love him.

Until later,
Ann and Dennis

New Changes

Raquel is off for three days on personal business. Our back-ups were unavailable, so I am home to be full time care-giver. Unfortunately, he does not see me as his PCA during this time, so I don't get paid. But I do get all of his undying attention.

Today we went to the urologist. Dennis has decided that he wants a different catheter; an upper pelvic cath. Instead of going through the penis to the bladder, this one goes directly to the bladder from below the belly button. It sounds strange, but not much stranger than anything else we have encountered over the past few years.

It was only a couple of years ago that Dennis began to collect canes. Just when his collection started getting interesting, more changes came along. It was diapers, layered, to prevent urine leaks. Next it was a walker, then a catheter, and now a wheel chair full time. He tucks his chin to drink, and mushes and chops his food to a "mechanical soft."

Ah, you have heard all of this before. It's just one more change, just one new and different experience. But we aren't living in his body, are we?

I am so sorry, Dennis, that your body has decided to fail you. Just know that you are still loved, and I am lucky to have you in my life.

Doctor Visits

We are set for the next Mayo visit in January. This is the test where the force radio-active materials through Dennis' veins. The test that will definitively answer the question, "Is it Shy-Drager or something else?"

Dennis also has an appointment for botox injections in January. These are suppose to help his drooling issues. His doctors all approve and we are both hoping this will be the answer to the most pesky of problems.

Tomorrow it is a visit to urologist for a catheter change. They will also check for a bladder infection if Dennis remembers to ask for one. He has been a bit under the weather and he was thinking perhaps . . .

I also need to call his general practitioner about his depression. He is understandably depressed, but I hate the idea that it can keep him from living as fully as possible.

If nothing else, his life is full of doctor visits.

Until tomorrow,
Ann and Dennis

The Blood is Done

Bloody Wednesday went well into the wee hours Thursday morning. I won't go into the horrid details, but at 1:00 AM I finally turned on my computer so I could request a sub for the day. We were planning on going to Urgent Care as soon as they opened in the morning.

Dennis was up, keeping me awake, naturally, all night. He was drinking water, flushing everything out, and emptying his bag constantly. I don't suppose I need to mention that he was groaning loudly all the time. After all, he was dealing with his very manhood. Finally, around six o'clock, things were looking back to normal, and we knew we did not need to go to Urgent Care.

It ended up being a long night, with a few minor falls, lots of clean-up needed in the morning, but at least we did not end up in the hospital.

A girl can always be grateful for any day not spent in the hospital waiting room.

Until tommorow,
Ann and Dennis
Living with Shy-Drager, Multiple System Atrophy and a lot less blood

Bloody Wednesday

I came home from work today to a sickly boy and a bloody bed. Seems Dennis' catheter had partially pulled out and had to be pushed in by an inexperienced PCA. He had quite a bit of bleeding, both in and outside of the catheter. He was also in a ton of pain.

Dennis has never been great with pain, but this must be extremely horrid for him. Not being a guy, I can't imagine, but I guess I would compare it to labor pains. Since I have never had children, I can't really be completely sympathetic, but I do have lots of empathy for him.

I arranged him in bed every which way for about an hour. First we put a pillow under one leg, then both legs. That didn't seem to help. An ice pack and a handful of Advil didn't do much for him, either. Sitting up with the new bed pillow wasn't cutting it, and neither was laying down. Finally, I gave him a sleeping pill, shut the blinds and ordered him to sleep. He is laying on his side, ice pack carefully placed, and pillows arranged to keep him in place.

There is an alternative out there, to the catheter and foley bag, but it involves surgery. Surgery really is not an option for Dennis.

I want to make this all better for him, take away his pain and make him whole again. Today it is difficult to accept that I am unable to do any of this.

Until Tomorrow,
Ann and Dennis
Living with Shy-Drager, Multiple System Atrophy and lots of pain and blood

Catheter Mishaps

Dennis' catheter, for the most part, has been a blessing. We have had our mishaps, however, and this morning was one of those days.

Every once in a while, the tube that connects the catheter to his bag completely falls off. The first time this occurred, we were in Paris sitting in a restaurant over-looking the city. His chair was wet and we knew he had not spilled his water. Thankfully, he had black pants on that day and the only way anyone knew was if they walked to close to him and inhaled deeply. I doubt anyone in Paris would do such a thing.

The second time this happened was this morning. This time we had put a pad down the night before and nothing ended up on the mattress itself.

The first night he returned from his 3 week stint in the hospital/nursing home, we experienced another type of catheter accident; we forgot to close the shut off valve of the bag. Oops. Our new carpet was covered in pee. Well, why not. The very first day in our new home Dennis managed to crack a toilet tank in two. It seems apropos that he would stain the carpet on his first night sleeping in his new bedroom.

Aside from a few accidents now and then, and an occasional pulling on his manhood, having a catheter has been a life saver for both of us. His feet and legs are not swelling up anymore because he is retaining urine. I am not having to change the bed each day and then wash and dry a load of sheets. He is not searching for a bathroom every five minutes. We have not had another occurrence like the one in Barcelona when he sat in a pool of urine on the tourist bus. When the bus finally stopped, we snuck off while the woman in the seat beside us watched with her eyes popping out of her head.

At least this is one symptom of his syndrome/disease that has an answer that seems to work for us, fairly well.

A Minnesota Shopping Day

Today we went to IKEA,the first time Dennis has been out since we returned home. IKEA is where Dennis last worked and the job that he Cobra'ed his insurance from, thank God. His insurance is better than I have, and he only worked 10 hours a week. I work and work and work, and my co pays are quadruple what he pays, and his monthly payment is much less. European plans are so much better that US plans, at least when it comes to insurance.
We spent way too much money at IKEA, but with 4 foot plants and all those wonderful new windows we have, how could we resist? When you only pay 12 for a humongous plant, who cares how long it lasts? Of course, we bought lots of other stuff, too, but the plants are what sticks out for me.
This was the test drive for Dennis' wheelchair in Minnesota. Minnesota nice was on the line today. We will give it many more tests, this was IKEA after all, where everyone that comes is searching for a bargain and kindness takes a second chair. On a scale of 1-10, Minnesota nice rated a 5 today. Some of the people that remembered him stopped to say hello, and a gal that went through orientation with him, so many years ago, assisted him out of the store, but other than that, Minnesota nice did not shine through.
I miss holding hand with Dennis. We used to walk and walk and hold hands the whole time. It is very unmanageable to hold hands and push a chair at the same time. I have figured out that, at times, I can put my hands on his shoulders instead of the chair, but only if it is on a level run and only if there aren't people nearby. Anyway, it's different from holding hands.
Dennis told me I work too hard today. He woke me up at 3:30 because he had fallen on the floor when he was attempting to get up from bed to empty his leg bag; I had been too tired last night to change his day bag into his night bag. So, I guess, it was my own fault. Then he woke me up at 4:30, because his shoulders weren't covered, and he hates when his shoulders aren't covered. Then he stirred me again at 5:30 to empty his bag again. I really don't like any of this.
Then, at IKEA, I was pushing him and a cart, but only because we both bought too much. If we had stuck to the plan, and only looked for curtains (we didn't find any) and a rug for the front door, we would have been just fine. But, we hadn't been there for 7 months, and we had just moved, and we needed - NOTHING! - and we hadn't been shopping together for so long. Anyway, I would push the cart, go back and push him, and then I had to pack it all in the car, and then, empty it all out of the car, and then bring it all upstairs and put it all away. I can be grateful that he notices, that I, Ann, work too hard. Nevertheless, I know that I don't work near as hard as most individuals out there in this world. I know that I have got it good.
Until tommorow,
Ann and Dennis

Drooling Issues

Dennis started his pesky drooling last year sometime. The kind of symptom that gets in the way of some activities, but not all of the time and everyday. He is now at the frustration drooling stage and he drools through day and night, but it is being treated with the drug Robinul, or a generic, to be exact.

Now this drug has all those dreaded side effects, some of which are the very symptom he is fighting against. But of course they are, you know that as well as I know that. Truth be told, it already seems to be loosing effectiveness, anyway, and the doctor seems very reticent to increase his dose, so he most likely will not be taking it for much longer.


It's not always the drooling itself that becomes the biggest issue, it's the problems the drooling causes when Dennis eats, sleeps, talks, drinks, and does anything what-so-ever. When he sleeps he drools, so the pillow cases always have stains on them. Oh well, at least we aren't washing whole sets of sheets everyday like we did all winter. His catheter does have some benefits. Talking and being heard and understood is difficult enough for Dennis, add in the drooling and it is close to impossible to comprehend what he is saying. Even I have troubles most days and need to remind him to talk to me 1) only when we are in the same room, 2) to look at me when he talks and 3) and to swallow before speaking.

But it's the eating that is most exasperating for both of us, and I am sure it isn't all that pleasant for the other people present when he eats. Everything he eats ends up staining the drool which is still coming out of his mouth even though he is eating. After he collects enough colored drool on his face it begins dripping on his clothes. He is forever holding a towel up to his face to collect the drool.

Ah, drool. Sometimes he reminds me of one of those huge dogs that you just got to love through the drool. He is a sweetie and easy to love, drool and all. I wish it didn't bother him so much, but the man has his dignity, one thing this syndrome takes away from a person rather quickly.

Until tommorow,
Ann and Dennis