People with advancing Parkinson’s require safe and effective care, all the time. The day may come when you are no longer able to provide this type of care for your loved one at home. If this day comes, you should consider a transition to a care facility.
There are certainly benefits to keeping the person with Parkinson’s at home. The environment is familiar (and comforting) to your loved one, and you won’t have to travel to see him or her. Despite the challenges of caregiving, the relationship between you and the person with Parkinson’s often becomes stronger over time. There can also be considerable savings in healthcare costs.
On the other hand, as your loved one’s disease progresses and needs become more extreme, keeping the person at home can seem like a battle of your survival versus his or hers.
Undoubtedly, making the decision to move your loved one to a facility is an emotional process. People have called it “the hardest decision of my life.” Be prepared for potential accusations of abandonment and your own feelings of guilt.
Hopefully the following fact will help you and the person with Parkinson’s overcome any negative emotions: the move to a care facility does not negate your role as caregiver. Many family caregivers spend a lot of time at the care facility after the transition. You will need to explain PD to the facility staff and constantly advocate for your loved one’s needs.
Your loved one may enjoy the potential benefits of a care facility:
- Increased access to social activities offered at the residence
- Opportunities for involvement by on-site medical and rehab professionals
- A more accessible environment
- Available staff to provide assistance at all hours of the day and night
How Do I Know if Home Care Is Possible?
The following factors must be considered when determining whether home care will work for you and your loved one:
- The designated caregiver should have few other responsibilities not related to the care recipient (having a job will make it difficult to provide comprehensive home care).*
- The house must be large enough to comfortably accommodate the needs of the person with Parkinson’s, including space for a lift chair, walker, wheelchair, bedside commode or other medical equipment required. Take a home safety tour to ensure your home is easily accessible.
- All rooms should be on one level. The home environment must be safe and supportive of maximum independence. Necessary structural changes, such as ramps, handrails, bathroom alterations, etc. have been made.
- Arrangements can be made to provide medications to the person with PD at required times, as well as meals, assistance with personal care, housekeeping, transportation and companionship.
*If the designated caregiver is someone you hire to provide around-the-clock care, consider the impact of someone else living in your home. Even though you are not responsible for daily cares, having another person in your house might cause stress and make it difficult to relax.
Home care may not be an option in the following circumstances:
- Financial considerations do not permit it (e.g., when the family caregiver must maintain other employment). Many people believe that Medicare will pay for in-home care, but there are strict eligibility requirements (a person must be essentially homebound and need intermittent skilled care).
- Family limitations do not permit it (time, space, young children still at home)
- Caregiver’s physical and emotional strength is depleted
- Patient’s condition requires skilled nursing care or round-the-clock attention
- Physical layout of the home is unsuitable
- Individual with PD prefers to live independent of family
It is a good idea to visit a few facilities before a transition is necessary to get an idea of the available choices. It will allow you time to make the decision and will be less stressful than “starting cold” following a hospital stay and discharge necessitating finding a place on short notice. Take a friend or geriatric care manager with you to help assess the services and environment. Consider talking to a Senior Move Manager to help make your decision and help with the process. You might also want to familiarize yourself with palliative (comfort) care options, including hospice, so that if the need arises you will know where to turn. Learn more in the section Hospice at Home.
In 2016, the Parkinson’s Foundation hosted a Caregiver Summit that brought together caregivers from all over the U.S. and the world to share experiences and everyday strategies for coping with the complex problems that arise as a result of Parkinson’s. If you missed the event, don’t worry! All the general sessions were recorded and are available on our YouTube channel.