Caring for a loved one with dementia can be difficult as you navigate emotional, relational and medical issues. When distance separates you from a loved one with dementia, those issues can become extremely difficult.
When caring for someone with dementia while living a distance away, the most critical thing is eyes and ears of local “boots on the ground” support systems. It should be a team of people, not just one person and, when you live far away, you need to keep in touch with all of them.
Coordinate visits with the care team. Discuss any appointments they feel you need to be present for and any potential issues that need to be addressed. Plan with the team a time when your visit will be a quality visit and won’t interrupt an established routine. Choose a quiet space and a time of day when your loved one has the most energy. Do simple things like review old photos, listen to music or enjoy a treat they may feel is “forbidden.”
With advancements in technology, it is much easier to stay connected when you are separated by miles. Create a shared online calendar so that everyone is aware of appointments and medications. There are also caregiving apps available that can take care of this. Purchase a simplified phone or tablet designed for seniors with big icons that allow them to initiate calls.
If your loved one still lives alone but has someone coming in periodically during the day to check on them, consider installing safety measures like automatic stove shutoffs, sensors on doors or smart lights in hallways. Wearables such as GPS bracelets and watches as well as medical alert devices can also provide peace of mind. It may be best to find a bracelet or device with fall detection as well. However, keep in mind that your loved one will need to know how to use them and be willing to wear them consistently.
Establish weekly or monthly check-ins with those who are providing you with day-to-day updates. Be sure to ask questions, request observations and decide on next steps with the team to ensure everyone is on the same page. After each call, post a brief written summary in the app or in a shared drive to boost coordination.
It is also important to remember your own relationships while caring for someone with dementia. Reduced leisure time, emotional stress and financial draws can strain marriages and partnerships. It is important to strive for balance and regularly discuss your shared values. Although you may know you love your partner, they need to hear it, so be sure to spend quality time together. Leave a love note on the counter or find a small, personal gift for them.
The most important thing to do to protect your own relationship during this time is to create a time for the relationship. It is not uncommon for one adult child to take on the caregiver role, so if that is you, make it clear to your siblings that you won’t sacrifice time with your partner or spouse. Ask siblings for respite, help with chores and financial assistance if necessary. If you are an only child, find a way to take a break from the caregiving aspect. If you live some distance away, you should already have a support system, so rely on that team when you need to focus on your own family.
These tips can help you manage the stress of caring for someone with dementia when you don’t live nearby. For more tips on caregiving, visit Delaware Hospice.
