Supportive Care Bulletin
Helpful tips for family caregivers
Our first article covers logistics for a family meeting. When siblings work together well, it’s a marvelous way to share the responsibilities of caring for mom and dad. A few family meetings may be all you need to get in sync. The second article is designed to help spouses of persons with early-onset Alzheimer’s develop a support system for meeting the challenges of middle age with a partner who cannot participate as they did before. Last, we offer a list of questions to consider when choosing a meal delivery service for your loved one.
Calling a family meeting
Family meetings won’t cure old hurts or solve every current problem. But if they nurture teamwork, they can provide a solid foundation for the continued well-being of the person in need of care.
Creative solutions often emerge at family meetings, and the burdens of caregiving get redistributed in a more balanced fashion.
Tips for successful meetings
- Decide who should attend. Anyone with a stake in the situation should be invited, but keep it to fewer than ten people. Use technology as needed so that location is not a barrier and everyone can “attend.” Ideally, include the older adult. Consider a premeeting without them, though, to air feelings and establish roles (timekeeper, note-taker …). If the elder has dementia, family meetings may be too overwhelming.
- Create a safe space. Agree upon ground rules so everyone understands that all points of view are important and to be respected.
- Consider a facilitator. A social worker, therapist, or care manager is trained in family dynamics and keeping group meetings courteous and productive.
- Agree upon overall goals. This is not about the past, but about the future. The point is to find a way to work together to do what’s wisest for your relative so their elderhood is as close to their desires as possible, given the circumstances.
- Set an agenda. Be realistic about what you can cover in an hour and a half. Determine who will be the timekeeper so everyone gets a fair share of time and the meeting ends when planned. You might begin by hearing each other’s assessment of the situation and any concerns. This may bring up a lot of feelings.
- Take notes. Ask someone other than the facilitator or timekeeper to take notes. The notes should identify concerns and the different tasks each participant has agreed to take on. Notes should be sent to everyone soon after the meeting.
- Understand there will be hiccups. When emotions are running high, many of us drop into childhood patterns of interacting. Acknowledge this challenge at the outset and ask that everyone aim to remain in their adult self. Also, forecast that no one is likely to get 100% of what they want. Try to be flexible and open to new ideas.
- Expect further meetings. If Meeting 1 focuses on concerns, Meeting 2 may explore solutions and Meeting 3, implementation. Consider touching base regularly after that.
If your spouse is younger than 65 and has received an Alzheimer’s diagnosis, you may feel in a world all your own. You probably don’t know anyone else in this situation and may sense a social stigma. It can be scary. Lonely. And feel just not fair!
We Look for a support group. You are not alone. In a support group, you’ll find others who understand, as well as valuable tips and strategies. Check out the Alzheimer’s Association to find in-person, virtual, and hybrid groups. Try to find early-onset gatherings. (This is very different from “early stage.”) You might also check out WellSpouse.org specifically for caregiving partners.
Involve your friends. You need them now—more than ever. And yet they may feel uncertain of what to say or do. Let them know specifically what you need. Perhaps just someone to listen, let you cry when you want. Or maybe you need them to continue including you and your partner in get-togethers. Offer them guidance on best strategies for interacting with your spouse so they can feel more confident about what to expect and how to respond.
Find professionals to help. There are some big issues to tackle, and the time is now to work on them with your partner. A Care Manager can help you understand what to expect and guide you as the disease unfolds. Consider the assistance of a therapist to get through sensitive topics with your spouse: Finances, sex, household chores, when to tell others, driving, end-stage care. Finally, work with an attorney to create legal documents for when your partner becomes unable to make personal decisions.
Early-onset Alzheimer’s is challenging and moves quickly. There’s no denying it. But you will experience less stress if you reach out early and often to get the support you need.Return to top
Choosing a meal service
Perhaps your loved one has just gotten out of the hospital and needs some meals for a few weeks while recuperating. Or maybe Mom has dementia and it’s become too much for Dad to have to cook on top of caring for her.
Meals on Wheels America serves communities most everywhere in the country, but there are requirements for eligibility. And the choices are limited to what is being served that day.
If you decide to look into private meal services, consider the following:
- Special diets. If your loved one requires it, can the service accommodate low-sodium, diabetic, or other special diets?
- Frozen or fresh. If frozen, is there room in your loved one’s freezer for the minimum order? If fresh, what is the shelf life?
- Preparation. Are heating instructions within your relative’s capabilities?
- Payment. Most services are private pay, but some may participate in a Medicaid waiver program. Or does your loved one’s insurance cover meals for special diets?
- Shipping fee. What is the shipping or delivery charge? Flat rate or per meal? Shipping is expensive, thus larger orders are more efficient.
- Minimum orders. Some services require bulk orders of five, ten, fifteen, or twenty meals at a time.
- Weight of the package. Large orders may be difficult for your relative to lift and carry into the house.
- Scheduling. Can you determine delivery days and times, or do they have a fixed schedule? What if your loved one is out when the meals arrive?
If you are looking for a long-term solution, it is wise to try a few services. Perhaps order for yourself first to get a sense of the process and the quality of the food from each vendor. Also, look for discounts. Many regularly offer coupons for 10%–20% off. They add up!Return to top