We had a busy day yesterday. Our kids just came back from a couple weeks of holidays and so it was once again full of action for us here. It had been a very very quiet two weeks for us with them gone. My Aunt Dot and Ted camped out here for the weekend. They cooked all the meals for us and helped me move some heavier items around. It made the job so much more easier and fun.
Besides all the rain we have been getting everything is looking pretty good in the yard. The flowers and gardens are looking so full of life. Rick loves herbs so I put together a small herb garden right on the deck where he can enjoy them as he sits out there.
We met yesterday with our Advanced Care Team. It consisted the Cheryl Palliative Care Co-ordinator, Laura the Home Care co-ordinator, Alva our Home Care nurse and our very own Diana from the ALS MB Society. Quite the team....our physican was unable to attend this initial meeting but is also on this team.
It was so good to sit down and ask all the questions you can imagine and to draw on their own experiences. We feel so fortunate to be surrounded and have access to these incredible caring professionals. With all the hard questions we ask come all the raw emotions with it all. We talked about end life issues, my being over extended with caring for Rick, where does he want to be when he passes, how do the meds work, what kind of help can they provide for us and much much more. We even discussed how the passing of our friends Brian and Ken affected how Rick and I are feeling right now. Rick and I from the start have tried to face our challenges with frankness and openness. Believe us...it is not always so easy to do...sometimes we would just like to stick our head under the blankets and stay there.
Rick will now have a caregiver sleep over one night a week as well as an increase in his tube feedings to get his weight stable again. The aim is to establish comfort for him on this last part of our journey. We have new meds on the way that will ensure his escape from discomfort. Moving him has become very uncomfortable and he can only go without his bipap for very short minutes of times.
Medication will be used also to relax him and trick his brain into thinking he is getting enough air...especially during showering, getting dressed and eating times. He eats very little as he gets too tired from trying so hard to breath. His feet and now his hands are regularly very swollen. His fingers and hands are starting to curl inward.
We did ask some different questions like...if he needs to be transported by ambulance how do we manage his breathing if there should be no outlet for the bipap? They will be checking into that one for us. Our team all agreed that Rick has done as well as he has because we have been able to avoid any chest infections. We now more than ever can NOT have anyone near Rick with any kind of sneeze, cough or indication of flu etc. as this could be the cause of his end.
We talked about the very end of life issues concerning medications, how the end usually goes with ALS patients and also the way he is progressing and how much time we may only have left. No one can give the exact time etc. but by how the progression of the disease is going there are some very definite tell tale signs of what is ahead. In knowing that info we also know that God is bigger than it all!
We had an emotional evening just having to deal with the reality of it all once again. Today, is a new day and we are off and running once again with new vision to keep Rick as happy and comfortable as possible and knowing there are so many people out there that will help us, are helping us, praying for us and encouraging us along the way!
