Hospice & Seizures

A few days after Christmas, we received a call from the doctors office that since Dad has decided to discontinue treatment, the next step would be to go under the care of hospice. At that point nothing had really changed medically, and if he would have continued with chemo, we most likely would not have been referred to hospice.

We had our initial meeting with the hospice social worker this past Friday, December 30th. She came to the house and basically just explained everything that hospice can do and the various services they provide. We learned that they do a lot more than originally thought, including having any necessary medications delivered to the house! The nurse was supposed to come over Saturday to finish getting all their paperwork filled out and take care of the medical side of things.

 We ended up having to call their 24 hour hotline Friday night around 10:30. Dad started having another seizure, very similar to the ones he had in August. He was awake and breathing but wouldn't answer any questions, kept staring off at nothing, and his arm would twitch. The nurse was at the house in roughly an hour or so and we were able to give him medicine to stop the seizures after a few doses. He did a little bit better yesterday, but today was a rough day for him. He's very agitated and confused and most likely still having seizures. He's asked multiple times for his dress military uniform and wants to know what time to be at Baue for his funeral. He also doesn't believe that he's at home and keeps asking when he can go home. According to one of our hospice nurses, the brain can go back to wherever he was during the first seizure or where he was during his first big seizure. Since he had 27 seizures while on the monitoring equipment back in August, we kind of think that is why he thinks he is somewhere else.

Once we can get everything arranged with hospice, we are probably going to do respite care. Basically he will go stay in a local hospital for a few days, still under hospice care, so Mom can get some rest (she hasn't sleep much in several days). It is exactly like going to stay in a hotel but he will have the nurses looking after him and giving him meds, helping with hygiene, etc. Hopefully while he is there, Mom can get fully recharged and we can have hospice bring in some equipment to help being at home easier. We are currently debating on bringing a hospital bed home, just afraid that it will add to the confusion and agitation. Once he is back home, the hospice nurse will come twice a week to check on him and a nurse aide will also come twice a week to help with showers and that kind of stuff. Our goal is for him to be home as long as possible, but sometimes we have to put ourselves first and hopefully the respite care will allow Mom to do just that.

We were able to have a really nice Christmas! On Christmas Eve we went over to my grandparents for the evening and then on Christmas Day, after I got off work the six of us has a great dinner and then opened gifts. Dad was in such a good mood that he was laughing so hard he couldn't talk!!