It Takes A Village
“It takes a whole village to raise a child”
Let’s look more closely at these words from the old Nigerian proverb, because it doesn’t have to be just about children. It can apply to the care of our aging loved ones as well.
In order for those with dementia still living at home to get the highest level of care possible, care they deserve so much, at least two caregivers works best: Two caregivers in the home and the rest of the community, or village, for support.
Jobs should be clearly defined. The primary caregiver tends to the patient while the secondary caregiver runs the house, for example. Or, the primary caregiver(s) takes the day shift while the secondary caregiver(s) takes the night shift. One caregiver can attend to basic needs while the other covers exercise and social activities. There are a number of ways the jobs can be divided but it takes more than one person to remember the pills and schedules and all the others things necessary in taking care of our loved ones.
While the lives of those with dementia seem to come to a standstill, the lives of the caregivers go on. That means there are errands to run, appointments to keep, housekeeping to do, books to read and Red Sox games to watch. Everyone has their own activities that keep them busy. This humdrum part of our lives, which we may have dreaded in the past, becomes our respite, our time to take a break. And, while we scurry about, our loved one sits in a chair, staring out at space, thinking God only knows what. Although it may seem alright to leave your mom at home for short periods of time, it can easily increase their level of confusion. This confusion then leads to unpleasant episodes for her later in the day. And, knowing your loved one is home alone and confused will add stress to your day whether you realize it or not. This additional stress increases the chances of mistakes: car accidents, missing appointments, wrong turns, spilling coffee, errors in medicine dosage, general forgetfulness and I haven’t even started on the negative effects of stress on our bodies.
There are the times when the caregiver becomes sick or hurt. This will happen and you’ll need a backup to take your place immediately. My dad had some awful sciatica and was forced to use a walker for a couple months. He was useless. He couldn’t drive, carry things or sleep well. Then, in comes the secondary caregiver to the rescue! (The needs of the caregiver are very important and I will address this issue in a future post.)
Each caregiver brings something different to the equation. In the case of me and dad, he cares nothing about taking care of mom’s nails and hair. He prefers not to go to church. He doesn’t play music for her. So, I cover these areas of mom’s needs. Dad does the things I’d rather not do, like clean her false teeth. It’s in this area where the community comes in. Support groups for caregivers, where ideas are shared and frustrations vented, are being set up all over the world every day. The number of books to read on this subject, found in bookstores and libraries, grows by leaps and bounds every year, and the internet can be a source of real comfort in the daily struggle with this disease, whether for the research and learning aspect it offers or the social media connections that are now so popular.
As this ugly disease progresses, you’ll find it necessary to double team. Persons in the latter stages of brain disease can be quite obstinate. It took both dad and I to get mom into the shower yesterday. When you are double teaming all day and night when do you get a break?
As I’m writing this: Mom is still sleeping. Dad just told me he’s going into the bathroom for a spell, could I listen for when mom gets up? If she wakes, with nobody around, she’ll be lost and won’t know what to do. Again, more than one caregiver……..need I say more?