Well, its another Sunday so its my day to post. This last week has been very interesting. I am now on my three month break from work. I had not expected to become pregnant my first round of PGD/IVF so I took some leave to relieve my stress level. Now that I'm going to have the baby I only hope monrning sickness won't distrub me during thiese months.
My husband has come home from his stay in the hospital. Several months ago he had also been hospitalized for pneumonia. That took three stays before it was properly diagnoised and treated. As a consequence I made sure they felt his seizure medication level was stable before releasing him.
It was not so easy. He wasn't home for 24 hours when he had another seizure. I was not happy but he raised his medication dose and has been seizure free since. That has been a relief.
We have another issue that is causing us stress. Paul's primary care doctor was arrested. Not only did the government take all the patient files but they also took the computers. My husband now has to find another primary care physician to take him on. This is hard to do without being able to show a recent medical history. All my husband has are his prescription bottles.
Monday I will be making some calls to see who can fit him in. Its hard when you are dealing with a chronic illness like Huntington's Disease. Many doctor's do not want to see a patient that often for maintance treatment. They want to accept your insurance money monthly and see you once a year for a cold. That's what I liked so much in Paul's former doctor. When the hospital first released him after a twelve hour emergency room visit, Paul's fever spiked. I called the doctor to let him know I would need insurance approval for another visit as my husband's temperature was at 104. Dr. D met us in the hosptial parking lot and he went in with us to make sure Paul was treated properly and not released again.
Yes, I will be making the calls. One of my husband's HD symptoms is a lack of inititive. He doesn't have get up and go. Part of this is from his anxiety. Another part is just the part of his brain that tells us we need to start doing something is now diseased. It is hard to get him to do something, but once he starts there is no stopping him.
Here is another example. I have literally seen him just staring at the computer because the inititive to open up his Kindle to read it is simply not there. He wants to read, he knows the book and page he is on, but he will not open it to start. If I turn it on and place it in his lap he starts reading like a madman. This is because the part of our brain that tells us we need to go from the thought of doing something to actually doing it has been attacked by HD.
So often it is simply easier for me to get up and do what needs to be done. It pains me deeply and I feel as if I'm taking away his independence. At times like this I remind myself I'm not doing it, it is the disease.
This has become worse with his phenobarbital. He simply is too tired to do these things. To make it worse, he is currently to limit his activites and stimulii until we determine what sets off his seizures. He has reintroduced his telephone's web browser, his computer and now the television. He is not to go out to see a movie, enter an establishment that uses florencent lights and many other limitations. I have had to replace our energy saver bulbs with traditional iredencent lights. Somedays I feel as if I have done everything. That is what a full time caregiver does, and I am on that road.
Sometimes it feels as if it will never end. Yesterday I went over to visit my parents. Between working extra hours, the IVF hormones playing games with my emotions, and taking care of Paul I haven't spent the time with them I would like. So last night we played catch-up. It was wonderful and I didn't leave until 11 at night. When I arrived home my husband as in a very depressed state. I did not feel comfortable with him feeling this way and so I began to talk to him. He told me about an incident his in late teens that still haunts him. Until last night I had not known the details.
After laying next to him (and his laptop) I could not comfortably rest. I offered to be a lending ear and we talked until three a.m. He asked me for help looking at some information on the internet and I culled through over fifty links on the internet for what I felt was best to introduce this incident. It was only then that I felt safe to sleep.
After a long night at my parents I would have treasured the ability to come home and sleep. That was simply not to be. When this happens I want to take that disease in my little hands and strangle it to death. Make it go away. Bring back the peace we should have in our home. At the same time, I know I should be thankful for all that HD has not done to him. He can still type on his computer, and talk and eat.
For this time we have together I am eternally grateful.
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