Caregivers for persons living with aphasia (PLWA) are often misinformed, confused, scared, and overwhelmed when their loved one experiences a stroke with aphasia. I've found that not many therapists or doctors give the caregivers the right kind of information--what is it? Will it get better? Who can I talk to? Does anyone else have it? and so on. Shockingly few medical personnel will give information about aphasia support groups or the National Aphasia Association website. Very few couples are given encouragement to continue therapies after the insurance runs out. No one is given hope for progress, it seems. If you have hope, you will often be told that you are in denial about your spouse's capabilities.
Frequently, I will see older couples who have been married for 40+ years, in which the husband now has aphasia and the wife is now the primary caregiver. Often, but not always, the husband was the main breadwinner, the finance planner, the leader in many different areas. Now, the husband has aphasia, and the caregiver is left to figure out how to take care of her husband, manage the household and finances, get him to appointments and therapy, and possibly perform nursing duties for personal care. No one asked for this to happen, and now the dynamics of the entire family have changed. The PLWA can often no longer participate in interests he had before the stroke, and for lack of something better to do, will follow his spouse around the house, waiting for some interaction. Friends are often embarrassed or uncertain about the PLWA and won't visit as often. The spouse is now left with many burdens--physical, mental, social.....
you are now the wife, caregiver, nurse, chauffeur, banker, shopper, maid, and sometimes therapist. Who wouldn't feel some stress or pressure in this situation?
I will sometimes have caregivers that are upset because they want to help their spouses with speech therapy, but the husband does not want them to do this. Of the many roles you may now have, your husband has chosen: wife! Be glad, I will tell them. I know you want to help, but it is a two-way street, each participant must be willing to let that other person have more than one role. If one participant is not 100% willing, then so be it! Only the PLWA can decide if he/she wants to get better and who will help with that. You don't need to carry all of the burden--there are people out there, such as myself, who have gone to school for a long time to do this. We aren't related to you, we have no personal history or previous roles with you, and our role is therapist, period. I'm more than happy to help someone become the therapist if that's what both persons desire, but I won't put more burden on either one of you if you don't choose it. I won't automatically assume that since you are the primary caregiver, you should be jumping up and down to get into having therapy at home with your spouse after you've been doing the physical therapy and other exercises, as well as your daily household and work schedules. You have the right to say, "No, I don't want to do this". By letting the therapists push you into this position in which you feel obligated to perform, you are adding stress to an already stressful situation. So you will either say you'll do it but won't, or you'll do it but resent it, or perhaps you'll be happy to do it. There are several possible scenarios. Yes, it's better if there is someone else who will help so that progress can be made faster--does it have to be you? No. Can your children, students, neighbors, church, or other volunteers help out in this area? You still have a life, don't let guilt make you miserable--the world's fate does not hang on your shoulders. Skipping exercises due to real life a few times a week doesn't kill anyone.
The only critical piece is carry-over from therapy to home life, and I find that not many therapists know how to educate caregivers appropriately about carry-over. Since PLWA spend 6-weeks at our facility, carry-over after the session is crucial, but by that time everyone should feel educated and entirely comfortable about communication.
I am putting together a manual for caregivers and I could use your stories for it. Tell me your story--we'll talk about it next time......
Thursday, April 16, 2009
I will frequently get calls or emails asking me if there is an intensive aphasia center near them. While I am pleased that more and more people are finding out about the benefits of an intensive treatment program, I then have a lot of work to let people know that this is a rare service. In North America, there are 4 facilities that provide this service. The original program is at the University of Michigan, and Nova Scotia has a 4-week program every summer for persons living with aphasia (PLWA) and their caregivers. The Philadelphia VA has a 17-day program available only to veterans in that state. Finally, our program at Aphasia Center at Steps Forward has a 6-week program for 180 hours. I try to explain that this is a very time-consuming and laborious service, not only for general overhead, but also to employ the best therapists and to adhere to our very high standards for therapy. There are not many places out there that can support the staff, research, time committment, and ability to survive without insurance for 6 weeks at a time. I know this scarcity doesn't help people who don't want to travel to Florida (or one of the other programs), but I think it does give you a feeling that if we've gone to the trouble to make a center, we must know what we are doing. If you want excellent medical care, you may go to Mayo Clinic, if you want excellent aphasia treatment, make the effort to go to a center, no matter where you choose to go. Please remember that you and your loved ones are worth it. It's always worth it when you invest in yourself! Give yourself permission to go for it!