As Parkinson’s disease (PD) progresses, a caregiver’s challenges change. The rate of progression varies from one person to another, but there are many common symptoms and scenarios. Rather than trying to predict problems, prepare for changes that are likely to occur over time.
What should I expect?
While medications significantly reduce symptoms in the first few years of the illness, eventually many people with PD notice that controlling symptoms becomes more difficult and requires more medication. People caring for someone at this stage of the disease may notice the following:
- Inconsistent response to medication: Motor fluctuations, or “on/off” fluctuations, are changes in the ability to move, often related to when medications kick in or start to wear off. Fatigue can also be an issue. This makes it hard to plan activities, as you cannot predict physical capabilities. Caregiver flexibility is important. Try these tips for scheduling in the face of fatigue.
- Mood and cognition changes: Changes to how the person feels, thinks and reasons can be more frustrating than the motor symptoms of the disease (how the person moves), for both you and the person with PD.
- New safety considerations: If symptoms begin to significantly affect mobility, memory or thinking skills, it may be time to consider if it is still safe for the person with PD to perform tasks that he or she once did easily as part of the daily routine. For example, driving may become too risky, for your own family’s safety or that of others on the road. Giving up driving is an enormous loss of independence to many people and can create a new burden for the caregiver.
- Physical symptoms that are better relieved with non-medication therapies: Exercise is medicine for people with Parkinson’s! Findings from the Parkinson’s Foundation’s Parkinson’s Outcomes Project show that people who begin regular exercise early in the disease experience a slower decline in quality of life. In fact, group exercise and physical and occupational therapy can help with both motor and non-motor symptoms of PD. For communication problems, which occur partly as a result of soft voice (a common issue in people with PD), refer to the Parkinson’s Foundation tip sheet “Addressing Your Loved One’s Communication Challenges.” You might also seek a referral for specialized speech therapy.
- Role conflicts: People with Parkinson’s and primary caregivers rarely adjust to living with PD at the same rate. You might need to adjust household and lifestyle responsibilities and habits. For example, should you start paying the bills? Is it time to hire someone to do the yard work? This can be a hard transition and the person you are trying to help might resent these changes.
- Early signs of caregiver fatigue: After increasingly “taking the lead” in your relationship (with no end in sight), it is understandable if you regret that life is not turning out the way you expected or hoped. As the disease progresses and your role as caregiver evolves, you will have to come to terms with the disease again and again. Try these tips for managing caregiver stress.
The Parkinson’s Foundation book Managing Parkinson’s Mid-Stride addresses many of these changes and more. Order your free copy online or by calling our Helpline at 1-800-4PD-INFO (473-4636).
Get outside help
No one person is ever able to meet all of an individual’s needs. As Parkinson’s progresses this becomes increasingly true. Begin adding outside resources to your caregiving early on. This makes adding other care sources easier as the disease progresses.
Start building your “Caregiving B Team.” These key friends and family members can help you in small ways now and establish a relationship with the person with PD, making it easier for them to fill in for you in the future when the need becomes greater. Use this worksheet to help you add family, friends and volunteers to your caregiving.
If you are considering hiring a paid caregiver, visit Outside Help for information on where to look for help, questions to ask when hiring, how to train a paid caregiver and more.
There are steps every adult should take, regardless of health status, to align your values, wishes and preferences with medical care you will receive. If you haven’t done so already, make sure crucial planning documents such as a will, Legal authorization for someone to act on your behalf (as your “agent”) in financial and business matters should you become physically or mentally unable to represent yourself. You may also name an alternate if your primary agent is unable or unwilling to serve. Once completed and notarized, the document should be registered in your county of residence. It is simple to revoke or change a POA if necessary. and Legal documents in which you spell out your end-of-life wishes. These often come in two parts. The first, sometimes called a living will, advises your doctor and healthcare team of your wishes for end-of-life care, such as whether you want to be resuscitated or placed on a respirator if your heart or breathing stop. This decision is referred to as DNR, Do Not Resuscitate, or AND, Allow Natural Death. The second part of an advance directive, often called a medical power of attorney, designates a person you want to make your healthcare or end-of-life decisions should you become unable to do so for yourself. are in place for both you and the person with Parkinson’s. Visit Putting Things in Place for details on how to start the conversations and who can help.
Take care of yourself
Caregivers have an enormous, often underappreciated job. There are many things you can do to help make sure the role can continue to be — or return to being — a healthy, viable, even rewarding option for you. Here are just a few of those ideas:
- Forgive yourself for not being perfect.
- Acknowledge your right to feel emotionally off-balance.
- Determine your limits.
- Build in regular breaks from caregiving and make them a priority.
- Seek joy in your relationship with the person with Parkinson’s.
Last, but not least, enlist the help of the person with Parkinson’s to take care of you, as well, and make sure you feel appreciated. It takes a lot of PD symptoms to render someone unable to give a loving foot rub or neck massage!
For more ideas, visit Caring for You.