Friends, don't leave
I've been talking a lot about this lately, so I think I'll drop a line or two....Caregivers, if you are not one of the few fortunate people with a huge, thoughtful, and local support system, please read this blog.
There will come a time, pretty early on for most, when you will realize that you are tipping your metaphoric head to keep from going under water. You will be SO HAPPY when your loved one's old friend comes to take him/her out for a bit, or drops by for an impromptu visit. Maybe you've noticed that fewer friends are doing this. And fewer are calling.
Let's explore this. First, let's talk about the friends, and what they might be thinking/feeling/avoiding. The discomfort is there, most likely palpable from every corner of the room. Conversation has become difficult. That back and forth is not a two-way anymore. They do not have a reference for this. Or a guidebook of any kind. Maybe they talk another friend into joining them. Safety in numbers, right? Not a bad idea. The point is to visit, and have some fun.
I want to share an idea. If you know your loved one's friends are coming by, send an email beforehand, letting them know whatever they need to know to make the upcoming visit successful. Examples: Keep sentences short. Leave a bit of time in between sentences for the shrinking brain to catch up. Try to not over-talk...one person at a time may be all your loved one can concentrate on. Try to sit in a place where background noise is minimal. Some visual aids would be great...photos, maps, sketchbook, etc. Remind them that eye contact and facial expression is key...there are many ways of communicating.
A while after the visit, maybe send another email, thanking them for their time, understanding, and friendship.
And here's the point to this whole blog post: Ask them to do it again. And to tell other friends. Ask them to keep showing up, as much as they can. Tell them (don't be round-about with this, either....tell them straight-up) that you NEED them to stay in the game. You need their company and their support. Let's face it. Our society sucks at stepping up to each other's plates. We're always so afraid to ask. Are we afraid of looking weak? Of asking too much and pushing people away? Of scaring our friends with the thought of all the weird and awful diseases out there?
I hear from many clients that friends always tell them to call if they need anything....and I always ask, "and do you call them?" The answer is so often "no". We don't want to "bother" people. I'm here to tell you, people need to be bothered. We all need to be bothered to care for others. It's a main reason we are on the planet, I'm sure of it. I do think that some are afraid of being sucked into a vortex of need, and I think this is actually a valid fear. To help clear that air, a simple, old-school solution is to make a list of helpful acts on your frig, and when people say they'd like to help, ask them to look at the list and put their name next to whatever they feel best doing. Not everyone is cut out to look a disease in the face, but they can do great things in other supporting roles (kitchen help, shopping, research assistance, driving, etc). Keep some of the duties short and easy for those with little time. They may return for more when they have a day off.
Caregiving can be a long haul. Building a good support system is vital. If you are shy to ask, please consider this: asking for and accepting help from others is also, in a way, an invitation to them to call you when their time of need arrives...because, you know...we all get something. And the faster we learn to extend ourselves in both giving and receiving, the better.