The Whitworths of Arizona, bringing science to you in everyday language.

Friday, September 16, 2016

Planning a Respite Trip

Last week’s blog was about respite care in general. This week’s blog is about travel, and especially about using respite while the caregiver travels. Just for fun, I’ve presented it as from someone with dementia, but with the insights we’ve learned over the years…insights that a person with dementia probably wouldn’t be able to tell you.

One of travel’s main attractions is experiencing something different—which, as someone with dementia, is what I fear most. How can I maintain control of my fading life if I don’t have my familiar moorings? At home, my favorite chair, the familiar floor plan, and normal routines give me structure and feelings of control. Travel takes these away.

I used to love to travel. Early on, we traveled and I could still enjoy it. The 6/27/14 blog, Summer Travel, offers some good guidelines that made travel easier for me…and my care partner.

But now, change has become very difficult for me. This makes travel downright scary. And when I get scared, I get irritable, paranoid, and irrationally angry. My symptoms increase, with more hallucinations, more active dreams, and less mobility. With little or no impulse control, I can’t control any of this. I probably can’t even tell you that I’m frightened. I can only express my feelings with actions. The more distressed I am by change, the less I’ll be able to enjoy travel. And if I don’t enjoy it, I guarantee that you won’t either!

But caregivers have rights and needs too. If you want to attend a family event, do you give it up and stay home to protect me? Do you take me along and spend the whole time dealing with my problems? Is there any place in between, where we can both get our needs met? Well, sort of.

Let me warn you, I want my same caregiver (you) always. And with little ability to empathize, I can’t understand that you need time away. No matter how you do it, I’m not going to be happy, so accept this and move on. However, with a caring home caregiver or respite center, I won’t be as devastated as I tell you I’ll be. The goal, as always, is to find a happy medium between my comfort and your needs.

Plan ahead. Having you take time away is going to be much easier for me to deal with if we have developed routines that include respite (see last week’s blog). However most caregivers don’t see a need to do this until the need for respite, for whatever reason, is urgent. Even so, do try to plan far enough ahead for some gradual visits while you are still around to cut down my feeling that I’m being left with strangers. We’ll both be a lot happier that way.

Consider pharmaceutical help. I will probably tolerate this change in my routine better if I have the help of a short-term, low-dose regimen of an antipsychotic like Seroquel, (if I can tolerate it) starting about a week before you leave and ending no more than a week after you return. While the Whitworths are not advocates of drugs when there are other options, they know that there is a time and place for them. This is one. No matter how you try, this will be a time of high stress for me and I need that extra help.

Keep it a secret. Many care partners, spouses, especially, hate to keep secrets. “We never have,” they say. But the rules have changed. My comfort is much more important to me now than your need to be up front. As soon as you tell me about firm plans to leave me, I’ll start stressing and I’ll continue to stress until you leave…if you do. I may get so bad you won’t feel you can. Wait until several days into the Seroquel regimen and then tell me—or even wait until right before you leave. I will be able to handle it better then and won’t have so long to stress.

Set the scene. This is as close as you should come to telling me “the truth,” until right before you leave. About a month before you go, you can mention your plans. Don’t give me any actual dates and keep it all low key… “just something I’m thinking about for the future.” I probably won’t remember, but it will be in my subconscious and that will keep it from being such a surprise. If you get specific, I’m going to stress for that whole month!

Don’t abandon me. Set up a way for me to have contact with you. This will decrease my feelings of being abandoned. Maybe you can call every day at the same time. Or you can leave a cell phone with me. If you do, however, expect continual calls. I need a lot of reassurance!

Add familiarity. If I’m going to a respite center, take as much of “home” with me as you can. Photos of family, a familiar pillow or bedspread, etc. The more of my home environment I have the happier I’ll be.

Expect me to adjust once you are gone. Like a two-year-old, once it is a done deal, I will probably stop fighting and will begin to adjust. I still won’t like it, but I won’t be so stressed.

Arrange for dealing with minor emergencies. Ask someone we both know and trust to be available for minor emergencies and make sure that person knows how to contact you for things that they can’t handle.

Finally, LET GO. Once you’ve done everything you can do, let go of your caregiving job and enjoy your vacation!

* Acronyms:
LBD: Lewy body dementia
PlwD: person living with dementia
PlwLBD: person living with LBD
DLB: dementia with Lewy bodies
PDD: Parkinson's disease with dementia
MCI: mild cognitive impairment
MCI-LB: the form of MCI that precedes LBD
BPSD: behavioral and psychological symptoms of dementia

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, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a physician's advice.

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