If I Think Too Much.

One of the hard things about caretaking a parent that not only has a degenerative disease, but has a degenerative disease that is hereditary, is that you have to live with the fear or knowledge that what is happening to your parent everyday could one day be your reality. As I watch my father get further and further from the man I grew up knowing, and become more and more confused and frustrated with his everyday world I cant help but worry that it will be me one day facing the same challenges, issues, frustrations, and loss of self, and it truthfully scares me more than I can ever express.

Video Time

One more makes..."a lot"

Last week my dad had another stroke. My mom and I can tell what he has lost as far as mental and physical abilities. He is not as coordinated at fine motor skills as he was even two weeks ago and he is having trouble where he switches words around and his sentences come out confusing everyone.
When he was taken in to the hospital with this last stroke, as this one was accompanied by massive amounts of pain, he was given an MRI. When the doctor came to admit him to the hospital my mom asked if the MRI showed anything, and the doctor replied "Just that he has had a lot of stokes".
That's as close as anyone can come to a number, no one really knows how many he has had. When he started having them, or how many he has at any given time. I myself have lost track of the ones we have actually known about and had documented by MRI.
Some how, and for some reason, I feel like I should know the number. I feel like I should know how many times this thing has happened to him, ultimately resulting in the disappearance of the father that I grew up with, but in the end the doctor is right "a lot of strokes" is what I am going to have to be happy with because I will never know. There is no way to find an answer.

It's the Little Things That Get You.

Over the last couple of years my dad has been slowly declining. He has lost memory here and there. Lost his ability to recall words, now has a limp, can't follow a list of verbal instructions, has very little short term memory, has bladder spasms, problems with his vision and eyesight on and off, lack of personal care. However, it is the small things that crop up that disturb me the most. I understand that his is going to have his limp the rest of his life, his brain has affected the function of that side of his body and the way the muscles-brain communication happens. Yet, what I have more trouble dealing with is when he is short with me or my mom for no reason other than he is just feeling, well, childish is the best way to associate it. Or when he has entire conversations with people and you ask him what was said and he has no idea what he just talked about AT ALL! He was not processing what he or the other person was saying. I understand the big things like his body is going to start failing, that is not to say I have accepted it, but it is the multiple ways that the mind can turn on someone that truly upsets and unsettles me. Something that makes you who you are, where your personality is rooted, can be all upset and changed because of something like a disease and as of today there is no recourse one day you just cease to exist as everyone has known and loved you and you become someone else. Basically a stranger that people have to learn all new habits and personality traits about, while mourning for the loss of the person you used to be.

Back and Forth

So this past week started with my dad in the hospital. He woke up one day with having trouble focusing his eyes, and thus having trouble with his balance. On Tuesday night my mother took him into the hospital's ER to have him looked at. It was decided that he was having enough cognitive and balance issues that he would be admitted into the hospital for evaluation. He was not kept as long this time and was released on Wednesday night with the understanding that he would have to start full therapy again.
I know, I knew in the back of my mind that these trips to and from the hospital were going to be happening, and were going to become more and more frequent as his disease progressed. However, the reality of the situation I am finding much harder to deal with than the idea. I hate hospitals, between my mothers long stays for her osteoporosis and back surgeries. And now my fathers long stays I have been to this hospital more than most people in their entire lives, and I am only 28. Just the idea of going to the hospital makes me whiny, tired and emotionally drained.

On the Road Again

We have had to take away my father's drivers licence. His strokes have severely interfered with his reaction time, his thought process, memory, and the function of his right leg (gas/break leg). The therapist originally told him not to drive for awhile until he could be tested, that was over 2 years ago. He was determined to get his ability to drive back. He insisted he would drive again, and at that point there was a chance he could have. Then he continued to have small strokes and his cognitive abilities continued to decline and his therapists pushed his ability to return to work and to drive further and further out. After a year had past he wanted to get a drivers manual, as his therapists told him that at this point in order to drive again he was going to have to take and pass a behind the wheel given by the hospitals occupational therapy department. He was never well enough to take this test, or even had enough focus to study the book.
The therapists agreed that the idea of driving should be put on hold until he showed some occupational improvements as he was having trouble focusing for very long. So for the next 6 months talk of the driving test was tabled and he was told he could not drive.
One day several months ago I came home to find the car gone, and my dad missing. He had taken the car to be washed. He had snuck out of the apartment with the keys and drove the car, he knew he wasn't supposed to. When I finally found him (and took the keys away from him) he knew he had snuck something he wasn't supposed to.
The next day my mom asked him whether he wanted the doctor to take away his licence or have the opportunity to give it up himself now, knowing that he could always earn it back. He decided that he would rather have an active roll and gave it up. All the while saying he could get it back when he wanted.
Then about a week ago he tried to drive again:( This time when I kicked him out of the car (caught him this time) all he had to say when i brought up the issue of his lack of a drivers license was that he could drive he just couldn't "legally drive". Yea! a new trick:(

In the Future

There are many studies and research going on around the world to be able to "cure" CADASIL. There are many theories about how to go about it, what the differences are between CADASIL patients and other stroke patients that makes them different and makes it a "syndrome" or "disease". They are working on dna solutions, medications, intermittent MRI's, and monitoring blood pressure levels in patients juxtaposed against their strokes and overall mental health. However, this is still a disease that is widely unheard of and that gets treated wrong when a patent is taken into the emergency room and to the hospital. Most doctors have never even heard of it, and are left to look it up when we walk into the ER so they understand what they are dealing with.
The last time my father was in the hospital they gave him shots of heparin that every stroke victim receives as SOP now. This shot was to keep my fathers blood from clotting because some stroke victims loose the ability to move around, or move certain parts of there bodies. However, with CADASIL it is different, it is the stroke after stroke that robs you, not the one stroke that you just had. My father was completely able to move, and get around on his own, and shots of blood thinners is the worst thing he as a sufferer of CADASIL could have as it could have caused him to bleed out in his brain! CADASIL is different from other strokes, if you get too much blood thinner you could die, it is the reason you should not have TPA, or the stroke drug, it could also cause death after a stroke to a CADASIL patient. We told the nurses to stop the heparin and talk to his Neurologist, He was not happy about the heparin either. Now Dad's chart says that whenever he is in the hospital all drugs have to be approved by family, because he is not aware enough to be sure of what he is taking or if he should be taking it or not.


For those who are interested here is the CADASIL Foundation website. It contains some interesting information about fundraising, research, genetics and more.
http://home.earthlink.net/~cadasil/index.htm

Hereditary

So CADASIL is hereditary. There is a test that can be done to see if I have it, but I decided, when my dad started to decline very fast, that I would not get tested. I decided that knowing would just put a rain cloud over everything I did and experienced. If I started to feel strange one day I would wonder if I was having a stroke, because i KNEW that one day this disease would be descending upon me.
Not knowing however, creates an issue of "maybe, maybe not". My future might be the one that I had always envisioned of getting older, retiring etc., or it will be one like my fathers, of confusion, frustration, and decline. I have tried to live my life as more of a lesson learned from what has happened to my dad. Living for today and such. But I cannot seem to forget what my tomorrows may hold and the fear what it brings.

Enjoyable Therapy

My dad has found something that qualifies as therapy that he finds enjoyable. He has begun archery. It started out as something he and his Senior Companion would do once a week as what mom and I call "man time". But it developed into something more than that as he became more enthralled with shooting. Between the strength needed to pull the bow back, the concentration needed to aim, and the process that is repeated throughout it is turned out to be something that is really good to stimulate his brain and body. The place where he has been practicing is aware of his condition and has been kind enough to let he and his Senior companion in to the shooting range for free a couple times of month.

Looks Aren't Everything

One of the things that has been the hardest to deal with as my father has declined mentally with CADASIL is that he still looks the same, but has to be treated very differently. To people who do not know us, know what his, or our situation is he looks like a normal fifty-something year old man who is capable of taking care of himself, making rational decisions, and remembering small things like when to use the bathroom. However, my mother and I know differently.
This Sunday my mother had to go pick out new eyeglasses, this involved a long discussion with the sales associate, a fitting, trying on several pairs, and it basically took a lot longer than anyone thought it would. In the mean time my father is wondering all over the store, and it is my job to make sure he doesn't wonder into the mall and walk away. At one point I looked up and he was gone, now a few years ago this would not have been such an issue, he would have come back, now however he gets turned around, confused, cant remember how he got where he is, doesn't remember the name of the place he is trying to get to, cant find the words to describe it, and the more flustered, upset and angry he gets the more trouble he has. So I went out in the hall to find him just outside the entrance leaning on the railing, he was looking for a place to get some coffee. I told my mother we were going to get coffee.
About a half an hour later he disappears again, I had to walk further out in to the hall, quickly, to find him. He was looking for a bathroom. He couldn't remember where they were. I walked back in to tell my mom "I am taking dad to the bathroom". That must have sounded weird to the sales associate who couldn't help but overhear. How often do twenty-something women have to take there fifty-something fathers "to the bathroom". Tell them how to find the bathroom, yes, that I can see, both of us need to use it, sure. But to have to take him? Remember nothing looks wrong with my father. To most people he looks completely healthy so when I am taking care of him, telling him to do things, how to do things, people always have this look on their faces like they are not quite sure what is going on. They can tell he is confused, but not incapacitated. I feel like i need a small sign that says "he has brain damage" and i will just hold it up behind his head when they get the furrowed brow, confused look when he does something so completely off.

To Be Responsible or Not To Be...

When my dad was last in the hospital he was assessed by the Occupational Therapists and they told us that he had lost a lot of his abilities to do everyday activities. They also recommended intense Occupational Therapy everyday, 3 hours a day, for 3-5 weeks. He however did not pass the test that told the therapists whether he could withstand therapy for that long everyday. So, he was sent home without any therapy and we were told to enter him into therapy at his day center. However, this is not enough. So my mom and I have been actively engaging him in things such as helping with the cleaning and sweeping of the floor, helping with the laundry, vacuuming, folding towels, loading the dishwasher, and cooking more complicated meals for himself...all the things that he had stopped doing as they got more difficult and we stopped having him do because it got more complicated and frustrating for everyone. This last visit to the doctor was a wake up call however, and we realized that we all have to work so that he maintains his occupational skills. It will take some additional time and patience but he is in a use it or lose it position with his skills, mind and memory.

Father Knows Best

One of the side effects of stroke is that the person can become more stubborn or short tempered-
"Damage to certain parts of the brain can actually reduce emotional control and increase fearfulness or irritability. The stroke survivor may have less control over their emotions. It may be harder to adjust to change and learning. Relearning everyday things is often more difficult than expected. Stroke survivors may seem impulsive, stubborn or insensitive. They may not be aware of the effect they are having on those around them. This can be a direct cause of the damage that has occurred. These changes can be very distressing for the families of stroke survivors who are trying so hard to help."
We have had several problems with my dad thinking he still knows best for himself and refuses to listen to anyone else at times about even the simplest things. He refuses to use his cane, saying he doesn't need it although he has a noticeable limp, and has lost his balance to the point of falling over, we have to remind him to take it with him, because he will try to leave it behind on purpose.
When I was taking my dad shopping one day, he was eating a muffin in the car and had gotten crumbs all over himself and when we were stopped at a stop light he took off his seat belt and started to open the door...I mildly freaked out. He was going to get out of the car to brush off the crumbs, the only problem was that on his side of the car the traffic was moving as we were in the left turn lane and the people going straight had a green light, so he would have opened his door and stepped out into traffic.
The worst decision he has made so far was when he was being released from the hospital and he knew that his IV was supposed to come out before he went home, so he just yanked it out. Then instead of calling a nurse to stop the incredible amount of bleeding that followed, he walked across the hospital room (making a big gory mess) and tried to stop it himself. This was when we knew his decision making was really impaired by the strokes and we needed to make sure he was not left alone.
We have since put him in a day program, when we go to the store we take walkie talkies so if he does walk away we can find him, have had to hide all the keys to the car, and lock up all the household medication as he has tried to take some of his own, on his own, and has picked up my pill box instead of his own.


http://www.strokerecovery.org/learn.htm#8

Daycare For Dad

With help from out County we found a facility that would offer not only care for my dad for the day so that I could go to work, but also so my mother would have time to relax and heal, and so my father would get the stimulation that his mind needs as a stoke victim to continue to grow new pathways in his brain so that his brain damage does not continue to grow causing the loss of even more functions. Use it or lose it is what the doctors are telling him.
We enrolled him in a fairly active program that is full of people with all different problems, men and women of all ages including some men around his age that have also had strokes. They take them fishing, out on pontoon boat rides, to play pool, teach them to play guitar, play bocce ball, and he is given his therapy there in the afternoons...however my father is uncomfortable there as he does not feel it is necessary for him to be there yet. He thinks the program is good for people who need it, but he doesn't see that he does. He doesn't like to be around people who are mentally worse off then he is. I really can't blame him. It is a visual reminder of where, and how he might be one day. I have trouble looking at these people myself, knowing that my once extremely vital, active father might end up stationary in a wheelchair unable to communicate his simplest thought or needs. It leaves me feeling sick to my stomach. I cant imagine what it does to him.
So, he has done everything in his power consciously and unconsciously to get out of going to this day program. He is depressed about it to the point where he was sleeping about 20 hours per day. We finally brought him into the hospital and the doctors agreed that he is depressed and expressing the same anxiety that children often do when faced with fitting into kindergarten for the first time. The doctors told us that he would only deteriorate if we allowed him to stay at home, and he would never be happy in any program we put him in. It would just be a period of adjustment for him.
So now without fail we have to force him to go no matter how sleepy he says he is, and everyday he comes home telling us he was too busy to take time out to have a nap, and shares all the fun things that happened during the day. Then without fail the next day he tells us he is too tired to go again.

The Care and Keeping of Parents.

Both of my parents have health issues. My father (obviously) has CADASIL, while my mother has 7 broken vertebrae in her back from severe osteoporosis. She also has chemical allergies, chronic fatigue, and migraines. So for the last several years I have been at home helping to take care of her when suddenly we found out that my dad was also not as healthy as we thought. At one point last year there was a 6 month period that one or the other was in the hospital or a rehab facility every other month. On one occasion my dad and i had actually gone to pick my mother up from the rehab facility and my dad proceeded to have a stroke and we had to take him by ambulance to the hospital, leaving my mother at the rehab facility to be picked up later by another member of the family.
Caring for someone who is ill takes a lot of patience and energy. However, my mother is ill herself, trying to heal and dealing with constant pain from her back so when she needed to step back into the caregiver role that she had moved out of when my brother and I had gotten to adulthood she found it exhausting, because she was not healthy herself. So our family is trying to maintain a balancing act of healing between two people who both need care, rest, and attention. The only problem is that sometimes I am the only one able to give it and it drives me around the bend some days.

Family History.

As long as I can remember my father has had severe migraines. When I was little I can remember he would get migraine auras causing one side of his body to go numb and if he didn't get caffeine and aspirin in time he would get debilitating headaches. One day when we were at the mall one whole side of his body went numb, his hand and his leg. In order to get to the car he had to drag his leg behind him. At the time we just kinda laughed as he was quite clumsy. I never realized that this was foreshadowing for the rest of his life. Four years ago he was diagnosed with CADASIL, within two years he had experienced so many strokes, big and small, that he had lost enough use of his leg that he now had to drag it for awhile, and now he has a limp.
In 4 short years my dad has gone from going to work everyday, driving, being what is considered "normal", to not being able to work, drive, having to attend speech, occupational, and physical therapy, being depressed, having problems making decisions, and being exceeding moody and tired at all times.
There is no real treatment or cure. So we are taking each day as it comes