By: Dan Martin
On a family vacation in Greece to celebrate her 45th birthday, my wife suffered a massive stroke in a restaurant. The next few days were so filled with hospital arrangements, consultations with doctors in Athens and New York, and the logistics of getting her home that I had no time for the reality of her condition to sink in.
I had a business to run, three sons about to enter college, and not much time to reflect on the longer term implications of her stroke. This process only began in earnest after she was back in New York, where she spent a month in the hospital (where she was diagnosed with hemiplegia, aphasia and apraxia) and then three months at the Burke Rehabilitation Institute. She had lost all ability for outbound communication (in other words, she could not speak, write, or even gesture to indicate her needs). We got her a magnetic board with letters, but she couldn’t spell “c a t”
Only after it became clear that her life was no longer in danger, and once she came home from the hospital, did I begin to focus on how our life would be changed. First, she could only speak a few words; second, her mobility was impaired (she walked with an ankle brace) and she obviously could not drive a car or run the household. So I suddenly found myself in practice a “single parent” with no prior experience as a caregiver. I suspect this is pretty typical of spouses or other family members who unexpectedly have to face this kind of situation.
Life was so hectic during the first few weeks that I felt like a one-armed paper hanger – responding to the flood of concerned phone calls offering help (Barbara was a popular teacher at the high school and heavily involved in the community), choosing and scheduling speech and physical therapists, keeping our sons’ spirits up, doing my day job, arranging for house help and, last but not least, giving my wife the moral support and encouragement which I knew were necessary for her to maximize her own efforts towards recovery (an unknown goal, as no one could predict – much less guarantee – how far she would progress towards normal speech or movement).
We were told that at the time of the stroke the three factors which would determine the extent of her eventual recovery were (in order): the extent of the brain damage, her age, and the level of willpower and determination to recover; and that after about six months the order of these factors reversed (willpower became the most important factor). This has proved true.
At the outset, we were faced with a bewildering array of questions – the foremost being “will she recover, and if so how far, and how soon”? The frustrating fact is that, while there are guidelines, there is no hard and fast answer to these questions. Every individual is different, and the factors I mention above vary widely with each person. There is also a lot of “conventional wisdom” out there, such as “speech recovery ends after about six months”, “the worst thing about the convalescence is the depression which the patient goes through”, and “the victims always withdraw within themselves”.
Like most conventional wisdom, there are nuggets of truth to these, but the very good news is that they are not set in concrete! My wife’s aphasia occurred 24 years ago, and in her case speech recovery leveled off – but didn’t stop – after about two years. However, she has continued to regain her speech to this day. Every now and then she brings forth from her brain another word that reappears for the first time since her stroke. (One amazing thing I have discovered about being a caregiver is that spouses develop such an extraordinary capacity for subconsciously intuiting their partner’s speech patterns that they can not only understand what to others might sound like gibberish but also track pretty closely the return of vocabulary words and phrases; I don’t know the explanation for this, but others in my situation have confirmed this phenomenon). So much for the “six months” wisdom….
It is true that many recovering patients go through episodes of depression, and my wife was no exception; after all, a truly terrible thing has happened to them. But… (and here’s where the caregivers come in) these do not have to be permanent, or even prolonged. [A note of caution here: many patients with aphasia cry a lot in the first weeks after losing their speech; this is not necessarily a sign of depression]. What is crucial is that the caregiver (and everyone else) tell the truth about the situation, be very supportive (without being glib or pretending the road will be easy – this is tough to carry off, but very important) and insist that the patient never give up the fight. This will sound trite, but the key element is love…. Pour it on!
Whether or not the patients become withdrawn partly depends on their personality before the incident (and a common post-stroke phenomenon is that character traits become more marked – meek people become more so, argumentative ones become more quarrelsome, etc.), and on the way in which care is given. The tone of care, as well as the content, is crucial. If the patient is sent signals, no matter how subtle or unintended, that they are a burden to the caregiver or family, they may withdraw, lose heart, and give up the fight – and if this happens, progress will stop. It is essential to make them understand that effort and determination will pay off!
The brain is a magnificent and mysterious organ. We have learned, among other things, that other areas of the brain can assume functions (speech, in this case) they were not initially programmed to do; that you can relearn to sing, but not speak (and by the way, music turns out to be a very helpful tool in speech therapy – piano playing had a demonstrable effect in improving my wife’s ability to speak); that you can speak without notes, yet not read aloud from a script (my wife’s case); and that you can improve speech by immobilizing in a sling the “good” (usually the left) arm of a stroke patient.
We had over two years of speech drills, exercises in front of a mirror to see what lip movements resulted in which sounds (it is essential to close the processing loop from mouth to brain to ear to brain to mouth), picking up toothpicks from a surface and putting them in a box to improve small muscle coordination, etc. There are also support groups (check the NAA website www.aphasia.org) which can be of enormous help. Today, Barbara has regained about 90 percent of her speech, walks without a brace, travels on her own, and is President of the National Aphasia Association – a real triumph of determination over adversity!
Every caregiver has to develop a coping mechanism that works for him/her. In my case, it was simply to focus single-mindedly on the job(s) at hand – earning a living and making my wife whole again. Yes, there were nights alone when I sobbed to myself about the prospect of never hearing her voice again, and panic attacks at the thought of losing her. But I couldn’t afford the luxury of introspection about the new reality’s impact on me – much less despair about the change in our lives or her prospects for recovery, so I just did what I think most people do in tough times: buck myself up, keep going, pray to God and hope for the best.