Mid-Stage Caregiving

Mid-Stage Caregiving: What Can I Expect in Three to Five Years?

Parkinson’s disease is a progressive disorder, and while medications may significantly decrease symptoms in the first few years of the illness, physical abilities will decrease and PD symptoms will increase as the years go by. The rate of progression varies tremendously from one patient to another. Caregivers are urged not to predict problems, but to be prepared for changes that are likely to occur over time.

Parkinson caregivers with a loved one in the middle stage of the disease may notice the following symptoms:

  • Less than optimal response to medications. Appearance of “on/off” fluctuations in response to levodopa, sometimes predictable, sometimes not, is common. This makes it hard to plan activities or predict physical capabilities, since Tuesday may be different than Wednesday. Caregiver flexibility becomes a primary virtue!
  • Mood and cognition (how the person feels, thinks and reasons) may become more problematic than the motor (how the person moves) symptoms. Do you need to negotiate with your PWP a change in patterns and preferences (i.e. should you pay the bills instead of him? Is it time to hire someone to do the yard work?)
  • Driving an automobile 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 patients, and can signal a whole new level of burden for the caregiver.
  • Physical symptoms that are better relieved with non-medication therapies: exercise groups, physical or occupational therapy, specialized speech therapy to overcome the common problem of soft, hard-to-understand communication.
  • Role conflicts often emerge at this stage of the illness: Patients and primary caregivers rarely adjust to living with PD at the same rate! Renegotiate who can/will do what tasks? Does the very person you’re trying to help resent needing your help? Early signs of caregiver fatigue: the feeling that after several years of more-and-more “taking the lead” in your relationship (with no end in sight), that life is not turning out the way you’d expected or hoped for.

Mid-stage Parkinson's disease is the ideal time to share more of the details of your caregiving responsibilities with key friends and family members. If you haven’t done so already, make sure crucial planning documents such as a will, durable power of attorney, and advanced directives are in place. Start building your Caregiving B Team, who can help you out in small ways now and establish a relationship with your loved one to fill in for you in the future, as the need becomes greater.

Last, but not least, enlist your care recipients’ help to take care of you as well. It takes a lot of Parkinson's symptoms to render a patient unable to do a loving foot rub or neck massage!

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