Consultant’s Corner – December 2019
by Carolyn Lukert, MBA, CGCM,
PAC Consultant and Mentor
Dear PAC Consultant,
I help to care for my sister, who has dementia, probably of the Alzheimers type. It is hard work, but it is also a labor of love. We have actually encountered some pretty special moments that I don’t believe we would have discovered if it weren’t for this disease. Yet, it can be so difficult at times, and when that is the case, I wonder how many other people out there are in the same boat. There are times when I feel so alone, yet I know I can’t be the only one. What I find really interesting is that – until I had a family experience with this disease – I never really heard anyone talk about it from a personal perspective. Now that I am immersed in this role and have the occasion to tell others, it seems that everyone knows someone who either has dementia or has some connection to it. I am wondering - what is the best way to find and actually connect with others that are in a similar role. Can you help?
Wondering in Wichita
Dear Wondering in Wichita,
As a care partner for your sister, you have first-hand knowledge and experience of what it is like to provide support to a loved one whose brain is changing. It can be one of the most powerful and impactful life roles, while at the same time, it can be so very draining and isolating. So, knowing that others are in similar situations, and hopefully finding ways to connect with them, can help.
First, I thought it might be helpful to provide some statistics. While the stats may vary slightly depending on the source, the Alzheimer’s Association provides a nice graphic about the numbers of people diagnosed specifically with Alzheimers disease (which is only one of many of the diseases that fall under the dementia umbrella). I like this graphic, because it also provides information on the number of people providing care.
In my tiny little corner of the world, I can tell you that through the PAC phone consultation program, we have fielded requests for over 450 phone consultations so far in 2019, from a variety of different types of care partners, and from many different states and countries. We have connected with sons, daughters, husbands, wives, grandchildren, entire families, and professional care staff, just to name a few. And the topics – everything from how do I know if it’s dementia, to when is it time to raise the white flag and ask for help, to what do I do when my loved one tells me she wants to go home (and she IS in her own home) – and that’s just scratching the surface. So, you are most definitely not alone. In fact, you are a member of a very special group of people. So, how do you go about finding and connecting with a group that will work for you?
As it turns out, there are many options, so it really depends on what you prefer in terms of interaction, and how much you are to be able to set aside time to participate.
- Local in-person support groups (Your local area agency on aging should have a list)
- Online social media groups (Facebook, for example- typing dementia or memory into the Facebook search function will give you some options)
- Virtual support groups that enable you to participate from wherever you happen to be (Positive Approach to Care’s Online Care Partner Support Series is an example)
- Groups that grow organically from local day programs, assisted living communities, faith communities, and other places where persons living with dementia often participate. These groups may even offer support for both the care partner and the person living with dementia
So, I’m wondering – Wondering in Wichita – which one of the above might work for you? As we approach a new decade (2020, can you believe it?), what will you try?
All the best, PAC Consultant