I was having coffee with another Dementia Practitioner last month. It seemed no matter how many aspects of Dementia care we discussed, the lines always intersected at the same point...the need for families and primary caregivers to think proactively. My colleague estimates that most steps in the caregiving journey are explored and planned six months to even one year later than they should be. I had never put a time to this, but upon reflection, I have to agree with him.
It is, I think, in our nature to wait until we reach a difficult point...a crisis, even...before we act. This may be a form of denial, which is understandable, but not helpful. Denial, or avoidance, often begins at the beginning...when to see the doctor? Sooner rather than later, please. Memory loss may be due to several factors other than Alzheimer's Disease. Knowledge is power, so get in there and find out what you're dealing with. More on that later...Diagnostics are worth several blogs all their own.
When to stop driving? Or cooking? When to begin wearing undergarments? Explore your options before you really need that next decision to be made. Many people can drive, or cook, or bathe and dress themselves with assistance or written cues, and can therefore hold on to a sense of independence a little longer. But all of that takes discussion, planning, and practice, so don't wait until there's an incident. GPS devices can be worn as pendants or watches, giving caregivers a sense of peace when their loved ones are outside. Waiting until someone is lost, panicking, and then locking them up is too often how this scenario is played out.
One of the biggest decisions to make proactively is when to bring on another caregiver. There may come a time when you suddenly catch a glimpse of what may lie ahead for you and your loved one. If you have not yet secured someone to help and provide respite, let this be your cue to do so. Start with one person, for maybe four hours a day. If it feels good, go for more. Try a second caregiver. That way no one gets burned out (another blog coming on that). You may feel guilty. You may feel confused. And more guilty. Push through the guilt. Trying to do this work alone WILL NOT WORK. Read that sentence again. You need respite. Rest, recreation, and a social life outside the home will make you a better caregiver. You will be healthier, happier, and more patient, all of which will enhance your loved one's life.
And for spouses and significant others: another reason for being proactive with securing a respite caregiver is to give your relationship a better chance of hanging on to its intimacy. Keep your partner role your #1 role as long as you can.
As a Dementia Navigator, helping my clients think proactively is one of my biggest goals. It is a practice and a skill set. Let me know if I can help you with this.