Parkinson disease symptoms vary from one day to the next, and even from morning to evening. In most patients, the disease progresses slowly. Of course, no one wants to admit that they are losing their abilities or independence, so you, as the caregiver, must be the eyes.
Both patients and caregivers tend to live “day by day” at first to take in slowly the fear of decline. Around the time of diagnosis, try to accompany your loved one to doctors’ visits and ask about the long-term prognosis, all the symptoms that may appear, how other medical problems play in, details on medications, other treatments, and clinical studies that need you or your loved one.
If the patient may have trouble swallowing, learn the Heimlich maneuver. Otherwise, you do not need special training to help with any but the most advanced stages of the disease. You’ll help with daily tasks and be a sympathetic ear. “Caregiving is easing the burden – making life easier and worth living for the patient,” writes Al Labendz, who has had Parkinson’s since 1986.
One of the best early steps you can take is to invite a seasoned caregiver to meet with you, your loved one, and concerned family. Read up on the illness, or look for a support group through the National Parkinson Foundation [800-4PD-INFO (473-4636) or email@example.com)]. MyParkinsons.org is a particularly good online forum specifically for caregivers, which includes a list of in-person groups.
Be prepared for an onslaught of free advice, offering articles on “miracle cures.” Run all ideas past the neurologist, though.
The usual pattern is to progress from “mild” to “moderate” to “advanced” Parkinson’s in the steps outlined below, but the disease affects each person differently, so your role as caregiver will be unique.
In the mild stage, you’ll see tremors on one side of the body and changes in posture, walking ability, or facial expressions. These are inconvenient, but medication will allow a patient to go about his life. In the moderate stage, movement symptoms occur on both sides of the body, and the patient moves more slowly. He may develop trouble with balance and coordination. He may sometimes have “freezing” episodes — when the feet feel stuck to the ground. Medications may “wear off” between doses and cause side effects, including involuntary movements and constipation. On other days, he may be especially tired. Sudden mood changes may be even more unsettling. Regular exercise and physical and occupational therapy will make life easier.
A person with advanced Parkinson’s will live in a wheelchair or bed most of the day and need assistance throughout the day. Mental symptoms like dementia and hallucinations may appear.
Somewhere in the moderate stage, your loved one will have to give up some control. As the caregiver, prepare to ask the hard questions. Should you sell your mother’s car? Your mother may resent even the question. Other observers who aren’t around as often as you are may underestimate the symptoms as well. Remind them that a tremor episode could begin in a hand or a foot and affect her ability to steer and use pedals — and there are other risks.
Medications don’t stop the progress of the disease, and you’ll probably need to tinker with timing and dosage (under doctor supervision) as the disease progresses. If the effects wear off, move dosages closer together. According to Michael S. Okun, MD, a neurologist specializing in Parkinson’s, patients may need a dose every 2 hours. It helps to take an extra dose before an athletic event.
Some 90 percent of Parkinson’s patients eventually have speech or voice difficulties, but less than 5 percent ever receive treatment. They may speak too softly or in a monotone, or sound breathy or hoarse. They may not articulate precisely. “Soft speaking” Parkinson’s patients often say that they feel like they’re shouting if they raise their voices to normal levels. You might give your loved one a digital sound level meter so she can see the measurements herself. Consider Lee Silverman Voice Treatment (LSVT), which can improve speech after only a month of treatment four days a week. Other options are personal amplification devices. Collagen injections in the folds of the throat will strengthen them, but must be repeated every six months.
It’s more troubling for you as the caregiver if you have to struggle to communicate. Be one of the few who take care of the problem.
Most research finds that caregivers have a harder time as the patient declines. Often the most distressing problem is your loved one’s growing mental symptoms, which can include depression, agitation, delusions, and abnormal behavior. If your loved one is having trouble sleeping, you’ll likely lose sleep as well. Eventually, you won’t be able to do the caring alone. Build your team early, drawing on friends, family, and community services, knowing that the work will increase.
All caregivers do better if they can stay engaged with all the areas of their lives that matter to them — career, interests, friends. In your case, you face a disease that can last decades. This isn’t a sprint.
Susan Hamburger and her husband Stan, who lived with Parkinson’s for 28 years until he passed away at the age of 73, both highly valued independence. “My bottom line is always, if they can do it, let them!” Susan says. When Stan did need a great deal of care, she realized that they both needed to feel that we “have a life,” she writes, to avoid “feeling angry, depressed and bitter much of the time.” She hired a helper to come for four hours, four days a week. That schedule allowed her time for errands, or meeting a friend. She also took aerobics and yoga classes, leaving Stan home alone. She became involved with her local Parkinson’s Chapter and took Stan with her to meetings.
The couple kept communication open and honest, apologizing when necessary or explaining when either was frustrated. Susan took pride in the heavy burden she carried. “Remember, life is not for the faint-hearted,” she writes.
February 15, 2016
Janet O’Dell, RN