When your mother is diagnosed with a neurological disease like dementia or Parkinson’s, it’s natural to feel an overwhelming sense of uncertainty. This uncertainty stems from not knowing what the future holds, which can make an already difficult situation even more distressing.
The Grief of a New Diagnosis
Receiving a diagnosis like this is more than just a medical revelation—it’s an emotional event that triggers a mourning process. There is a deep sense of loss, not just for your mother, but for your shared future. Grief, anger, sadness, and confusion are all common responses. The hardest part is often not knowing what comes next.
In many cases, families feel as though they are losing the essence of the person they once knew. It’s important to acknowledge that this process is not just your mother’s journey, but also your own as you navigate these changes together.
The Challenge of Uncertainty
The diagnosis itself can feel traumatic, and in the wake of that trauma comes a period of intense uncertainty. You may find yourself constantly asking, “What happens now?” or “How quickly will this progress?”
This uncertainty can feel paralyzing. But understanding why someone is experiencing certain symptoms—whether it’s memory loss or difficulty with mobility—can bring some sense of peace. Knowing that there are reasons for these changes allows you to adjust your expectations for each day. As you learn more about the disease and what to expect, you can begin to shift from a state of fear to one of preparedness.
Building Self-Efficacy: What You Can Control
One important part of managing this uncertainty is focusing on what you can control. This is where the concept of self-efficacy comes in. Self-efficacy is the confidence in your ability to influence events and take control of your environment. It’s about recognizing the difference between what is inside your circle of control, and what is outside of it.
For example, you may not be able to control the progression of the disease, but you can:
- Create a safe and supportive home environment
- Build a care team to assist with daily activities
- Join a support group with others who have similar lived experiences
- Manage medication and doctor appointments
- Focus on emotional well-being by practicing patience, understanding, and kindness
The Transition Home: What to Expect
After a hospital stay or a period of decline, the transition back home is often one of the most difficult phases. The home environment can present new challenges, such as:
- The bathroom may feel further away or harder to access
- Beds or furniture may be lower and more difficult to get out of
- Navigating carpets or narrow hallways may become increasingly difficult
- There can be increased confusion due to changes in routine
- Medication adjustments may lead to new side effects or difficulties remembering to take doses
This is why it’s so important to have a care team in place—whether that includes home care aides, therapists, or family members. It’s also crucial to have care management support to help oversee and coordinate the day-to-day details of your mother’s care.
Accepting Change and Embracing Support
One of the most frustrating parts of this journey is when plans change unexpectedly—or when there is no plan at all, leaving you feeling lost. The absence of structure can lead to feelings of guilt and sadness, particularly if you’re struggling to help your mother stay in her forever home. Allow yourself time to grieve for the changes, but try to also focus on what remains, and what adjustments can be made to improve the situation.
It’s okay to be angry at dementia or Parkinson’s. Many people feel deep frustration with the disease itself. But it’s important to remember that your anger is directed at the illness, not at your loved one.
Learning to accept the kindness and support of others is key to moving forward. This might come from friends, family, or our Home Care Partners who are dedicated to helping your mother remain safe and comfortable at home. It’s okay to lean on those who are offering help, and to allow others to be part of this journey.
Moving Forward with Hope
Though a diagnosis of dementia or Parkinson’s brings many challenges, there is also hope. With the right support, care management and perspective, you and your mother can face these changes together. By focusing on what you can control, accepting help from our care team, and staying present in each day, you can guide her through this chapter of life with love and resilience.
Remember, while uncertainty is part of the process, so is growth. With time, you will find ways to adapt, and you will discover that with our Home Care Team care services you will find more peace than you ever thought possible.
If your loved one is in need of hospital to home transition care in Lincoln, NE, please contact Home Care Partners today at (402) 780-1211. If your loved one’s wish is to continue living in their forever home, we can make that possible. Reach out to us today, our consults and cognitive assessments are FREE.
Home Care Partners is a top provider of care management services in Lincoln, NE and Lancaster County. We Bring Assisted Living Home.
Our Caregiving team provides personal one-on-one attention for your loved one. When you are ready to begin your care journey, we are the experts that will answer your questions and help you implement a plan.
Home Care Partners is locally owned and committed to providing Thoughtful, Quality, and Dedicated Care.
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