Alternatives to Aging in Place with Parkinson's from Home
One of the questions many of us ask ourselves when we are diagnosed with Parkinson's is whether we can stay home. We feel connected to our homes where we raised our children or entertain our grandchildren, and we often don't want to leave that home. When we choose to live at home rather than move into a community, assisted living, or skilled nursing facility, it's known as "aging in place." Yet living independently can present both health and safety risks when it comes to having Parkinson's, especially when considering the lack of mobility and potential for falls. If you or your loved ones have a desire to stay at home, it is possible - but you must weigh your support and safety to accomplish this successfully. To learn more about discerning choosing home - see the Care at Home section of this website.
Despite the potential risks of living alone, 77% indicate they want to live in their communities, even if their own homes won't meet their future needs. Thankfully, we have more resources available to keep our loved ones at home safely.
The discussion about needing help at home or about assisted living should occur well before an event leaves you in crisis mode and compromises your ability to process options calmly. Have a thoughtful discussion with your physician, care partner, and family about your prognosis so you'll have a good understanding of when your Parkinson's reaches a point where you may require increased supervision. Your providers can let you know when a higher level of medical help at home or when a move to a care facility would be advisable.
For instance, the onset of hallucinations and paranoia that cannot be addressed by medication may signal the need for constant supervision. If blood pressure becomes erratic and treatment options do not address the issues, a home nurse or skilled nursing placement may be advised if you don't have a primary care partner who can keep constant watch. Cognitive and mood-related symptoms typically require more hands-on care than some of the mobility challenges of Parkinson's It's crucial for you and your family to anticipate and recognize worsening symptoms that are unlikely to improve with medications or therapy. This knowledge will prepare you to take appropriate steps when care needs increase.
Many of the advanced symptoms of Parkinson's can be managed at home with the appropriate assistance; however, be aware that your care partner may take the brunt of increasing demands. Plan together for the onset of some of the more demanding symptoms and encourage your care partner to investigate respite care services so they can get the break they need to recharge. These actions will reduce the strain of the difficult decision-making associated with advanced Parkinson's, especially during emotionally heightened incidents where a decision must be made.
You must also consider the strength and health of those you identify to be your primary care partners. Be honest about whether they are physically capable of supporting your everyday needs - and ensure they have the proper back-up and support.
Is Aging in Place at Home Right for You?
Aging in place may be right for you if:
You have a strong connection to your current residence and neighborhood
Your house has universal design features to increase safety and accessibility
Your home is convenient to hospitals and medical providers
You have a strong support system including family or friends that live nearby
You have the resources to hire home care aids if needed
Aging in a Senior Living Community may be a better choice for you if:
Your current house is too large, or home maintenance is too much of a burden
You want to enjoy more free time and the amenities offered in a senior living community
You want access to convenient transportation for group outings, errands, appointments, etc.
You want to live in a social community with opportunities to make new friends
You would benefit from always having someone nearby to help
You want to live in a safe and secure environment, and don't want to be home alone
At the end of the day, it may come back to our financial situation to determine what we can afford. While there may be assistance with insurance programs in some cases - some of the best opportunities require private payments making home the best and most affordable option.
When is Aging in Place a Good Solution?
Before you decide that aging in place is the right solution for you or your loved one, you must consider three main elements: the person impacted by Parkinson's and their care partner, the home, and the support network available. Aging in place makes the most sense when all three of these factors support the decision.
First, you must consider the person. Most people will indicate a desire to stay in their homes as they age, but sometimes those living with Parkinson's simply can't do so safely - at least not alone. Next, consider the home itself. The home needs to meet the needs of the person with Parkinson's, be accessible if they require assistance walking, and be a size that can be easily maintained. Finally, the person with PD needs a strong support network to provide aid and care when needed. Here's what having all three factors in place might look like for aging in place at home:
Living in a one-story house and knowing neighbors well
Adult children can live with them or visit often to provide support on a regular basis
A two-story home can be modified to live only on the main level and avoid stairs
When Aging in Place May Not Be the Best Choice
For many diagnosed with Parkinson's, their desire is to remain independent at home, but their advancing physical, emotional or cognitive states don't line up. While health issues alone may not prevent an adult from aging in place, they can make it far more difficult. Here are some situations when aging in place may not be the right choice:
You and other potential family caregivers live far away or work full-time
You can't build a network of caregivers who live close to your loved one
An overnight caregiver is needed, but the home can't accommodate one
The senior needs medical equipment or supplies, but the home isn't large enough for them
Your loved one is wheelchair-bound, and the home has narrow doorways or hallways
You aren't comfortable having paid caregivers in their home who they don't know
You believe one can't drive, and public or senior-friendly transportation options aren't accessible
When It's Not Safe to Live at Home Alone Any Longer
One of the hardest calls for us to make as care partners is determining when our loved one with PD may no longer be safe to live alone or at home. This could be attributed to frequent falls, weight loss, confusion, forgetfulness, erratic behavior, or other related illnesses causing physical and/or mental decline such as Parkinson's.
Many want the best for their loved one with PD. We worry about the health of the primary care partner as well - and think about what could happen if they were to have their own medical needs and issues. What happens if our primary care partner can no longer be our primary care partner? What happens if they need care too?
What should family members be looking for? How do you, or does your adult son or daughter make the determination to speak to you and your spouse about future needs? It can be a difficult conversation.
Some signs that tell you that you or your care partner can't live alone includes frequent falls, leaving the stove or oven on without supervision, neglecting hygiene and health, having trouble with daily tasks, and mixing up or forgetting medication.
These and more are strong indicators that it's no longer safe for you or your loved one with PD to be living by themselves. Determining the best living solution will depend on how much help they need to care for themselves and financial assets available to help offset costs of services.
If you insist on staying in your home, fully consider pros and cons to aging in place. It may be time to consider an alternative living arrangement that could mean moving in with a family member, downsizing and moving near adult children, considering a care community, or co-housing situation. It could simply mean hiring the proper resources to come to the home where you want to stay.
The decision depends on how much are you may need in the future. The ultimate goal is to honor your wishes by tapping into the necessary home safety and care networks to maintain your independence.
In the below sections, we address what alternatives to home could look like, go over placement services that can help you and your family find the best solution for you, and discuss how to budget and plan for paying for care communities.
Disclaimer: The Parkinson Association of Alabama (PAA) works to equip you with education and awareness to discern your own path. The PAA does not specifically endorse living at home or choosing to not live at home for advanced care needs.
The Davis Phinney Foundation. Chapter 15 - Long-term Care and Financial Planning. Every Victory Counts. Page 249. "Manual." Sixth Edition, 2021.