Tuesday, March 24, 2015

Independence!

Walking that fine line between enabling and assisting is a tough one. And, obviously, it’s going to be different for every disease, every individual, and every circumstance. But, if you can help your loved one feel independent, in any capacity, it will be a blessing for you both.

Decision making is a way to keep your loved one independent. If they are still able to make their own decisions, let them. If you are the Power of Attorney for your loved one, but they are still able to make cognitive choices, always ask them what their wishes are, and carry them out appropriately. Making their own decisions, even if they are small ones, can arm the loved one with confidence. We all want to feel needed and capable. Whatever wise choices your loved one is still able to make on their own, let them. Even something as small as choosing what they will wear in the morning can help them to feel they are in control if only a little bit.

While allowing our loved ones to make their own decisions is important, but so is allowing them to maneuver, unassisted throughout their home. Letting our loved ones choose how and when they will move within their home is a large part of their independence. Parkinson’s patients often have several modes of transport depending on how their bodies are functioning at a given time. My husband has a U-walker, a scooter, a power chair and a cane; he uses each at different times depending on what the disease is doing in his body. It may be tempting to run to your loved one’s aid each time they rise from a chair, or move into another room, but doing that can cause unintentional stress to your loved one and to you as well. Of course you don’t want to let your loved one move about if there is a risk of falling involved. But, as long as moving about does not pose a serious risk, I say, let your loved one do so unassisted. It’s a simple thing, but can go a long way to helping your loved one feel free and unfettered. Note: If, as a caregiver, you feel it is unsafe for your loved one to move about on their own, find other ways to help keep their independence intact.

When a loved one knows his caregiver will do whatever the loved one wants and jump at the slightest need, the loved one will sometimes give up the ship earlier than necessary and allow the caregiver to do everything for them. That can create dissension and an attitude of entitlement in the loved one. This is often not the love one's conscious decision, but an attitude that comes from a lack of independence. Allowing your loved ones to do whatever they are able to do at the moment may be difficult for you at first, but in the long run it will be good for you both.

If your loved one has difficulty speaking, like mine does, don’t finish their sentences for them. Be patient and allow them to finish on their own. If your loved one stutters because of Parkinson’s or some other issue, it can be exhausting to let them speak for themselves. But letting them talk and express themselves is important; it keeps your loved one communicating. If you’ve been around your love one for a long time, you’ve no doubt learned to interpret the grunts and body gestures they make when they speak. Keep allowing them to do this as long as they can, even though it is difficult for you.

The biggest and most important way to allow your loved one their own independence, is to ask them questions. Communicate with them about what they require, what their limitations are and what they want to do themselves. I realize with Parkinson's there isn't always a blanket requirement because of the way the disease changes, but if you can lay out a plan of how you'll know when your loved one needs help and when he/she can do it himself, that will be a huge benefit.

It won't be easy. Love never is. But, if you can do whatever is required to allow your loved one the independence they want and need, you will both be happier for the long haul.