Transitions and Stability

The last couple of weeks have been trying to find a balance and some sort of routine. It’s been a bit rough as we are relying on others to help find that balance and routine, but haven’t really been able to do so. Managing home care, visitors, kids school, work, appointments, emotions and everything else has become a bit overwhelming.

Finding the balance to be fair to those who want to come visit and finding the time so that the kids and I can recharge has been a bit rough, but I think we are starting to get there. We have homecare coming in 4 times a day, but their schedule changes a bit so while we want to have a consistent start of the day it does fluctuate from day to day and just when we find a routine, something changes again. For someone who enjoys having that routine it’s a bit hard to navigate.

Dave has completely lost the ability to move the right side of his body, except for when he smiles. The right leg and arm do not function anymore. He can still feel which causes problems as his brain thinks they still work, but nothing happens.

His speech has been improving a bit since he stopped chemotherapy treatments, though that also fluctuates throughout the day and some things are easier than others. However, Dave has been able to hold simple conversations with family and friends who visit. Answering yes or no questions works well, but we have also seen him expressing his opinion more than he was doing in January.

It’s been hard for him to lose so much independence in such a short period of time. A hit to his ego, pride and overall feeling of being a part of the family. He wants to be able to do things for himself, but just isn’t able to make it happen and has to rely on others to help, which for someone who didn’t have to do that a year ago is very hard. Knowing that you are likely not getting better makes it worse and we have had a few bouts of depressive behavior, but gladly they don’t last.

The kids are being kids and are resilient in how they are dealing with the fact they will lose their father before we are all ready for that to happen. They continue to ask questions and we continue to talk with them about what everything means, not that we have the precise answers, but ensuring they are aware that it’s okay to be angry, sad, frustrated, happy and look forward to things they want to do. Life still goes on even though we are going through this challenge. Nothing stops! So neither can we.

We are considering Dave stable at present as we haven’t seen any additional loss of ability over the last couple of weeks. Dave is enjoying speech therapy sessions that we are doing once a week, I do believe that they are helping provide motivation to speak better.

Living in the unknown is still a part of our lives as we just don’t know when things are going to take another turn and are taking everything one day at a time. Yes, it’s hard, but we are still here and still finding ways to laugh as while this is bad there are still things to be happy about, jokes to be made and love to be shared.

Fun things like giving Dave a haircut. Finally we got rid of Grizzly Adams

So much better!!