How Caregivers can Help Manage Advancing Symptoms of Parkinson’s

There may be difficult decisions and changes that occur during the advanced stage of Parkinson’s. Caregivers need support, guidance and practical suggestions for the complex issues that may arise.

Planning Ahead

Take time now to organize the affairs of your loved one and make advance preparations to ease the transition into the next phase. Some families find it beneficial to hold family meetings to talk about caregiving roles and plan for the future. Making sure financial and legal matters are in order can ensure peace of mind for the person with Parkinson’s and their caregiver.

The following are some suggested steps you can take when planning for the future:

As friends and relatives offer their help, be ready with a list of errands or tasks that they can do.
Keep a notebook listing medication schedules and daily routines. This can be especially valuable in the event of hospitalization, caregiver illness, or other emergency.
Make sure you understand benefits and covered services included in your current medical insurance plan. Learn what long-term care coverage options are available.
Think about creating Advanced Health Care Directives such as Representation Agreements and Enduring Powers of Attorney, which are legal documents that specify wishes for medical decisions/treatment near the end of life.

Changing Roles and Relationships

Advancing Parkinson's causes disruption of dreams and plans for the future, often resulting in feelings of grief, anger, and sadness. These are normal reactions to the changing situation. Here are some strategies to help you cope:

Try to appreciate time spent together, even during mundane, everyday tasks.
Maintain a sense of humour. Try to laugh at things that don’t go as planned.
Communicating even simple ideas may become more frustrating for both speaker and listener. Try focusing on key words, or set up a hand signal or other gesture to indicate response to yes/no questions. While communication may be difficult, it is important to allow the person with Parkinson’s to express their thoughts and ideas as they are able.
Advancing immobility, thinking changes, added stress, and caregiver fatigue may cause a loss of intimacy. While physical relationships change, closeness can still be expressed through touch, conversation, and shared times together.

Where to Live

Options to consider for your loved one are: remaining in your home or moving to a new home. Here are some points to take into account:

Remaining in your home:

Will a ramp be needed for outside access?
Do floor surfaces easily accommodate wheelchair transport?
Are the bedroom and bathroom easily accessible?
Would a move to a smaller, easier-to-manage home make life simpler?

Moving to a new home:

Spend time investigating available facilities in your area. Compare services, prices, available staffing assistance, and experience with caring for individuals with Parkinson.
Tour facilities you are considering and ask questions about ongoing care. Can the facility comply with Parkinson’s medication schedules as required for individual needs? Is staffing sufficient to assist with eating, dressing and other personal care?

Daily Care

In the advancing stage of Parkinson’s, your loved one will need more assistance with daily care. Here are some suggestions to keep in mind:

Choose foods that are easier to cut, chew, and swallow. Avoid tough, dry, or crumbly textures. Smaller, more frequent meals may be better, especially for those with low blood pressure, fatigue, or who feel full quickly.
To help reduce constipation, increase fiber and fluids, try more regular activity (position change and/or exercise) and use over-the-counter stool softeners, as needed.
Use an electric toothbrush and toothpaste to provide thorough dental cleaning. Mouth swabs may make oral care easier.
Work with a physical or occupational therapist to learn ways to help the person with Parkinson’s transfer to the bathroom while avoiding injury.
If your loved one falls on the ground, do not hurry to get them up. Make sure there are no injuries and give them time to rest before attempting to rise. When able, help them scoot over to a heavy piece of stable furniture, then move on to hands and knees before attempting to get up.
Plan and share appropriate activities such as, doing crossword puzzles, watching nature or history programs, listening to books on CDs (find these at your local library), socializing with friends and family and petting, grooming, or playing with family pets.

Cognitive Changes

Cognitive changes include difficulties with attention, task completion, decision-making, problem solving, memory and word-finding. Not all people with Parkinson’s will develop cognitive issues, but it can be very frustrating for caregivers. These strategies may help you cope:

Provide simple, one step instructions – too many words may be overwhelming. Repeat instructions throughout the daily routine for those with significant memory problems.
Avoid confrontation. It is not helpful to tell someone who is confused that they are wrong, as this usually makes the person more anxious or upset. Talk in reassuring tones.
Set up clothing or toiletries in order of use.
Establish a daily routine and stick to it as much as possible. Use a calendar or erasable board to help provide reminders about the daily routine.
Avoid multiple conversations or activities at the same time, as this may add to confusion or anxiety.

Sources

National Parkinson’s Foundation. Adapted from the booklet, Managing Advanced Symptoms of Parkinson’s. www.parkinson.org.

This content was published in the Fall 2014 edition of our quarterly magazine, Viewpoints. The content was accurate as of this publication date.

Search