Video Transcript: Personalized Plans for Dementia

Welcome back for the third portion of this week on dementia and personalized plans.  We're thinking about how do we worship with persons with dementia and their families?  How do we stay in community as a church?  This is very important to us.  And I think it's very true what Barb mentioned before about a family who really needed some support, but didn't know how to ask for it; didn't even see the need for it.  And we're talking about people with dementia who used to experience a level of independence, who used to be able to see things, say things, do things for themselves, and their lives are changing now.  

Their perception is changing, their memory is changing, their abilities are changing.  And it's very unsettling, sometimes from day to day not remembering where they are, or who they are with, or what they're supposed to be doing, or thinking they were supposed to be doing one thing and realizing that that's not their job any more.  Things like this.  And so I think it's a very key place in life where we as the church can come around the family and say, let us be the church for you.  Let us care for one another.  

And as we've already talked about everyone still has something to give.  And so as we wrap around families who are now experiencing dementia, they still have gifts to give to our community that we don't want to miss out on.  So how do we do this well?   With a personalized plan for families with dementia.

I want to talk about what we call wraparound support teams.  And as I said, Barb mentioned this a little bit when she was talking about that family who needed some respite care for their kids.  Have we thought about that for the individuals with dementia in our congregations?  Do we have some respite care in place?  Could it be that we organize a wraparound support team as one church did, one of the very first wraparound support teams that we had from our organization that used to be called Glue teams.  

The G-L-U-E stood for giving, loving, understanding and encouraging.  And these folks thought that this material and this idea was such a great idea.  And then they came back to our organization saying thank you so much.  Now we have a plan for this couple, who one of them has dementia, and now we know what to do and how to stay friends and how to make this work in our community.  And we thought, really?   Tell us more about this, how is this working for you.  

And so we learned that what they did is they had four different couples interacting together with this couple, who was now going through the journey of dementia.  And so what would happen is the one with dementia would stay home with the other guys.  And they would have coffee, and look at pictures, and think about things together, while the ladies would take his wife out.  And she got to go out for coffee and spend some time with the other ladies from church for an hour or two.  And this happened every single week.  And that maintained a level of relationship, when otherwise life can be very isolating for this couple.  Because something about this condition isolates people.  

What it does is because everything is changing and unpredictable, going to church gets more difficult.  This couple had thought about this.  And so when it got to be the church was no longer an option for this individual to attend, well, one of one of the gentlemen from the group would come and sit with this couple and do church.  These couples would do church together.  They could listen to the podcast, or they could read the scriptures together that they knew would be a part of that week’s service.  And so really bringing church to the home when that was needed, but maintaining community and continuing to have ongoing relationship, to know what was happening from day to day, how that doctor's visit went, what is currently the favorite foods to eat.  How do they like to celebrate things?   All of those things that we need to maintain in order to still have continuous relationship.  

Now this team happened to be made up of couples of about the same age.  But it's very true that we could engage singles who are in their college years or who also just don't have a lot of family around and need some more relationship and really crave that intergenerational community.  And so could we connect an individual with dementia and their family members who might need just some more presence in the home or someone to sit with at church?   Can we connect one another and create these wraparound support teams, so that we have individuals who are consistently there with a person on a regular basis, whether that's once a month or twice a month, or every week, and every team can be different and set up in a way that makes sense to each of the members of the team.  

But the idea being that we are building a support system, and as John and Ryan grew in their friendship through some intentional segments of time where they spent time together, caring for one another and it grew into friendship, that can be very true in these support teams as well.  And so it's not unusual to have people of differing ages be a part of this.  And what a joy for us to have that small group that Barb talked about with our friendship materials from that together curriculum.  What a great opportunity to have intergenerational worship happening, intergenerational learning happening and now intergenerational relationship happening.  With all of the multi-sensory options and the different ways to engage with the materials, people of all ages and abilities can join in that material, and learn the word of God together and find that common language of worship and Scripture.  And now there is a basis for communication and enjoyment and community all the time for each of those individuals.  

So there's so many opportunities that this brings about for our community.  But I want to talk to you about, too, the idea that wrapping around and supporting this individual does not replace the caregiver in this situation.  In fact, sometimes it's the caregiver who needs the most support.  And so we don't want to come in and suddenly rescue everyone who is in need of care, and in need of support, and suddenly be bringing in all of the meals and making sure that there's always a person 24/7 by the bedside of this person who now pretty much stays in bed all day long.  

I was talking to a woman at my church the other day, I said, How is your husband?  How are things at home?   Her husband is in the final stages of dementia right now.  And she just said, you know, there are people at my house 24 hours a day.  I think I just need to be alone for a minute or two.  And so we sort of laughed about that.  But I thought how true is that sometimes?  She's the one that just needs a break.  She needs to be able to go out of the house and have people leave her alone.  Or could we be creative and get her husband into a different space for a time so that she has time to go off and fold the laundry all by herself without thinking about other things?  Do we not take over the caregiving for this person, but simply see what they need in order to be supported as a caregiver?  

Did you know that caregivers across the world have the highest percentage of depression and suicidal thoughts of any population.  They get so overwhelmed, so tired, and often there's so much guilt in the spiritual aspects of what is happening and the caregiving situation just gets very difficult.  Spouses are now seeing themselves as caregivers and managers of who used to be their mate.  And so it gets very interesting and difficult sometimes for them to process how to ask for help; what help is needed.  

How can we as the church come alongside people, not take over for them, but come alongside?   And it's a very key thing to think about the holistic health of a caregiver, too.  There are lots of great resources out there for mental health and thinking about our own condition as we care for someone we love, whether that is a mental health condition, or a physical condition.  And some resources that are out there, like Grace Alliance, is a wonderful online resource.  Many free resources out there; great blog posts, lots of information on how to care for yourself and the person who is also a part of your family that has a chronic illness like dementia or other things that affect mood, and emotion as well as brain.  

Some other resources that are out there that I would encourage you to look at are things called the heart of the caregiver.  It's now a full website.  There are a couple of different books.  I happened to do this book study as a Bible study for a 10-week course, when I happened to have a chronic illness.  It encouraged and helped me such a great deal to even work through my own need for care as well as caring for my very young children and my husband who happened to have chronic pain and had had a surgery that took six months to recover from.  So many pieces that it brought to light for me.  So I encourage you to think about things like that.  

How can we create opportunities for caregivers to be growing spiritually through the experience of being a caregiver, not always in spite of it?

So supporting caregivers can be a key piece.  And as always, get to know the person and ask those questions.  What will help you?  And how can we come alongside you as the church?  What can we do to wrap around you in the ways that are needed?  Because our true goal as the church is to provide hope, which is why I want to bring Barb back in to give a great story of some interaction with her father regarding the concept of hope and that common language of Scripture.

So, you probably remember that story that I told a few weeks ago; that story about my dear father when I was sitting across from him, do you remember and I was holding out my hands?  Do you want me to say a scripture verse or sing a song and how he chose this, and chose it again?  And it was that beautiful time when he said, “Stop,” on that word hope - May the God of hope fill you with all joy and peace as you trust in Him so that you may overflow with hope.  “Stop.”  Hope for me.  You remember that?  Right?  

And I guess Tory and I now have done this presentation on dementia enough that it really has allowed me along with my father's great counsel that day to think about that word hope.  How we set up our structures, how we interact with persons with dementia mean a whole lot to those that are watching, to those caregivers that are part of that individual's life.  Do we, because I've seen this so many times, just back away from those individuals, and we don't know why they're doing what they're doing so we're just going to move away?  Or do we continue to do teaching; training?  Do we continue to show people the frame of words that's around that individual’s life?   Do we continue to be in relationship, to treasure, the gifts that that person brings, even if that gift is to allow us to walk at that three-mile an hour pace, that pace that Jesus walked, that pace that John Swinton highlights, that as we slow as we face, eye to eye with somebody, that opportunity to have a connection, that opportunity to tap into the language that we share of worship?  

What a beautiful thing.  Not only that my dad could ask about hope on that day…  hope for me… But dad, hope for me as well.  And hope for those who are actively right now engaged in caregiving or being diagnosed, or understanding what that is.  Oh, if we turn our face and walk away, that's one message.  But if we continue to be engaged, continue to use that God vision, that eye sight that we talked about, that we see my dad and others in that situation, through that frame and that lens, what a beautiful way that we as a community can overflow with that hope to others that surround.  Overflow with hope on my dad so we can talk about what that's like; that gift coming so soon out of heaven, right?  That place of healing, that place that is no longer hope, it is a realization.  Hope realized for my father, right?  We can talk about that place together.  

Those are the kinds of conversations where I think is we overflow with hope, and not on our own volition, but allow God's spirit to invade our worship, our time together, because even the ability to overflow with hope is by the power of the Holy Spirit.  

So I hope that as we have expressed to this time and these thoughts about dementia, that it has lit some excitement in you, some opportunities that you might have thought no longer existed, but now could be in community with persons who are part of your environment, who might be part of your family situation.  

We are excited for you to use this information.  It's new and dementia is, again, becoming more and more a part of people's lives as people are living longer, as there is no magical little pill that people can take at this point.  And so we hope and pray that as a church, intergenerationally, and that you will find ways to come alongside and be together creating communities, congregations of belonging, with people of all abilities, recognizing who we are in Christ.

Have a wonderful week, and looking forward to gathering back again soon as we discuss more areas where we can identify differing abilities in each one of our congregation members.