Dave has been in hospice care for two weeks as of yesterday. During this time he has settled in nicely and is getting great care. He appears to be happy and engages when visitors are around.
For the first week Dave was awake most of the day and very alert. When he arrived we made the decision to change his medications to subcutaneous injections. This required a small port to be inserted under the skin to receive medications. The medications that he was on did not have an injectable option, which I knew. This meant a large change in medications. There were risks that they wouldn’t work, but taking the oral medications had become very challenging and were creating problems with Dave wanting to eat. We had to mix crushed pills with food to take them.
Thankfully he accepted the change very well. I credit the change to some of the alertness that he had during that first week. We even had a few times where he was able to tell me something wasn’t right or respond in the affirmative to questions to make choices. He also seemed more relaxed with less anxiety. Again, this is partly due to the medication change. The medications changed from 6 different ones to two plus the steroid, phenobarbital and midazolam.
Midazolam is part of the group of drugs that is sometimes used to treat anxiety disorders along with seizures. Phenobarbital is a drug at is used to treat seizures. Again there was a risk, but Dave accepted the change well without any seizure activity. This reduced his anxiety about taking the other medications. Eating became more of a joy rather than something to avoid because of medication. While food consumption is small it’s still there.
Also within that first week Dave got to experience the spa bath. He hadn’t had a proper shower/bath for a number of months. The kids were very excited about this and had to get a tour of the bath space when it was done. Since the first one Dave has been bathed every 2-3 days. The ladies also gave him a shave, so he cleaned up real nice.
The second week Dave has been sleeping a bit more. He is still engaged when he is awake, but is definitely sleeping more this past week. It could be catching up from sleep because he was so awake in the first week, but I am not sure. He is still doing well with the medications and no noticeable seizure activity. The kids have been zoom calling him at bed time to say goodnight and we visit every day.
However, the nurses have also been able to reduce the amount of oxygen that Dave required to maintain a stable oxygen count. His is currently stable on 6 liters/minute. This is down from the 10 he was on when he arrived, so much easier on the nose.
This week we are able to take him outside of his room. He can visit the library and chapel in the hospice as well as go outside if the weather is nice enough. The plan is to have him participate in our counseling session this week and to go outside on Saturday as it’s supposed to be exceptionally nice.
We are still seeing minor loss of things like speech. He wants to talk, but can’t seem to get his tongue to cooperate in making sounds. It is beyond frustrating for him as it causes him to cough to get sounds out.
The kids and I are doing better than expected as the move relieved a pile of stress and anxiety from all of us. They don’t feel like their home is a hospital anymore and within a few minutes of being home ran around screaming because they could without being told to be quiet.
Our routine is starting to get back to something that resembles something normal. It’s very nice to have this as it’s important to the kids development and mental well being. Being able to have a safe space to show the big emotions is important and we have that again. Not that we didn’t before, but there was always the concern about making Dave more anxious than he was already and upsetting him as that often triggered seizures.
It’s been a good move to have Dave in hospice care even though there is a bit more exposure potential for COVID, which the hospice has been exposed to through a visitor of one of the other patients, who has subsequently passed not due to COVID. Everyone is fine and Dave has tested negative all three times he has been tested.
We are still enjoying our visits as Dave continues to be with us. We are not seeing improvements that would bring him home, but he is still here and still wanting to be a part of things. We will take that for as long as it lasts.
The Adams-Schlag Family 