Hiding from the truth is not the answer. The importance of human connection becomes a healer. If we chose to hide in isolation, we would be constructing a shallow world. Engaging in good faith, family and friends is more realistic, allowing both little and big pleasures in.
You may have noted that I say 'we' and 'our' when referring to this PD journey. I am ever grateful I am at Russ' side. I do know local folks who walk this walk alone and in their social isolation, dysfunction is invited into their world. I don't want that for Russ. We are a team and our approach to PD is in unison, together. And I know that the absence of social support contributes to health decline and premature mortality. No one should be alone when confronting illness challenges.
So how can I be a team player if hunkering down at home becomes more and more comfortable for him? How can I be witness to more and more TV time (our first TV in over 40 years!)? I know Parkinson's is problem solving, reacting, fretting, anticipatory grief, and working with every fiber to 'be there' whatever that looks like. How can there be connection when there is fear?
At this point in our journey a company, Visiting Angels, has stepped in to be part of our team. This means Russ is never alone and there is always 'connection'. I am aware that many people struggle with how to help, how to connect. Sometimes they stay away because they don't know what to say or don't want living proof of human mortality. Sometimes they come on so strong it frightens Russ. I am also aware that for many people with a degenerative disease, asking for help amounts to failure. Not so for us, it is our hope!
Yesterday we stopped in the street on the way to the mailbox hut and talked with neighbors. We were in conversation and connection for about 5 minutes. Leaving Russ said "Those little conversations are so hard, I can't get my words out". Hard or not, my side of the team wanted to engage him in 'connection'.
To keep Russ from digging deep into his own mind, we need to have people connect. Visiting Angels has been so kind. We have 2 'regulars', Chance and Audrey, who come 4 days a week. They understand the need to engage and connect with Russ. The three of us all have our own approach, but we do help Russ connect his shrinking world of difficult terrain to wholeness. Visiting Angels have a team behind the scenes as well and they have our backs... as they say.
Visiting Angels are my angels.
Noun: a spiritual being believed to act as an attendant, agent, or messenger of God, conventionally represented in human form.
This company evaluates the situation and comes to help. For us, team Heaton, they are connecting with Russ, engaging him in activities and alert to his safety. A few things they help with are:
- Understanding that sickness requires rest, but not at the expense of communication. They talk with him, engage him in conversation.
- They offer snacks, lunch, tea and water, all vital to a day's pattern.
- They have baked cookies, squares and brownies. He loves the smell of them baking and they satisfy his new need for sweets.
- They watch TV with him (thank goodness for HGTV!) and talk about the show.
- They ask questions, connecting him with more than the quiet thoughts in his head, requiring him to speak.
- The cruise the neighborhood (he in his chair and they walk along side) talking about what they see.
- They ride bikes, engaging muscles that would otherwise be dormant with all the sitting.
- They take the occasional car ride, though those are becoming less frequent as he becomes more comfortable at home.
- They play games, always allowing for challenge and conversation.
- They take him to an occasional appointment
- And a very important piece is that they read his mood of the day, gaging his needs: quiet? sleepy? energetic? and plan the day accordingly.