Making Respite Happen

All caregivers know they need to take care of themselves. They know that includes respite. But when things are going well, they say, "I don’t need it." And then, when they aren’t, it's, "I don’t have the time or energy to add respite into an already too full schedule."

We recommend that you give serious consideration to starting a short respite routine well before it is needed, not because YOU need it but because your loved one does. They need to have this routine developed:

• While they are still able to adjust. As the disorder progresses, your loved one will find it much harder to adapt and will resist any change as too scary in their changing world.

• While they can still socialize with others. As communication skills decrease socializing becomes more difficult and isn’t worth the effort, especially with stranger.

• Before they become too dependent on you. As their world becomes more confusing, they perceive you as their stability and they will become very dependent and will have difficulty accepting even a temporary caregiver, especially one they don't know.

Bob started taking Maude to adult day care once a week for two hours while she was still able to enjoy the outing. It became a part of her schedule and she looked forward to it with pleasure. Bob even noticed that the added socialization made her more aware. As Maude’s condition degenerated, Bob added an extra day per week and arranged for them to give her a shower. “It is well worth the extra $20,” he told his support group. “And I really needed that extra time. Most of my free time has been taken up just running errands and such for Maude. I haven’t been able to just sit and read a book for months!” He added, “Maude knows the staff there and gets along well enough with them that I’m planning an overnight visit to our son next month.”

Maude has a routine she not only accepts but looks forward to with people she feels comfortable with. That makes extending the visits, even to overnight, much less difficult for Bob to do than if he were starting from scratch.

The other reason for starting respite well before it is actually needed is that it will be much easier for you to do when you aren’t already stressed. Then, with it is already in place, expanding it for your increased needs won’t be nearly as stressful—for either of you—as arranging for a first time respite event when there is a real need for it. Then you both will likely be so stressed that no one will deal well with this change in routine. You probably won’t feel you really need respite until your loved one’s condition worsens. Just making the step to leave your loved one with someone else is never easy. When you already have a routine of short respite periods in play, that step, at least, will be out of the way.

Trying to figure out how you are going to do respite will also be less stressful if you do it before it is really needed. Remember, this needs to be a respite period that you can count on. One where you make an appointment to get your hair done, or go to lunch with a friend, and know you can keep it.

One of the simplest is to find a facility that offers Adult Day Care. One facility calls their program a “Day Club” which takes stigma away from the name. In other cases, loved ones have talked about going to “work.” Staff often encourages this by giving them jobs that help them to feel needed. Many facilities offer transportation along with the day care.

Another option is to ask friends or family to come sit with your loved one. If you do this, work to make it a regular event, not just a happy visit. The disadvantage of this is friends or family may not be able to extend their care as your needs change and your search for respite services will then have to staranew.

A third option is to arrange for a paid caregiver to come regularly. Find out ahead of time if they can do overnight stays if and when you need it. Individual caregivers often charge less than those hired though an agency. However, agencies add the security of having vetted their employees. This can definitely help to relieve worry.

Then, of course, you also have to figure out what to do with your respite time. The main goal of respite is to refresh the caregiver. You may have needed errands, but do make an effort to keep time free for something that takes you away from caregiving for a while…a lunch out with friends, going for a manicure, sitting and reading that book you’ve been wanting to read, or even taking a nap.

Once you have a routine developed, step it up and do as Bob is planning to do and do an overnight. The first time, this can be leaving your loved one in a respite center and staying home, or going somewhere close by while your loved one stays home with an overnight caregiver. This “dry run”, allows you to feel more secure about leaving…you can return if you are really needed... while it builds on the routine. Adding this less stressful overnight will make taking a trip to your grandchild’s graduation much easier to do later on.

Next week’s blog will be on how to make taking a trip less stressful.

For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia

Helen and James Whitworth are not doctors. As informed caregivers, they share the information here foreducational purposes only. It should never be used instead of a physician's advice.