Advocating for Mom and Dad
Being a caregiver or advocate for a parent with dementia is a heartbreaking and often very difficult situation. Muddling through the emotional strain while trying to ensure your parent has the best possible care can be exhausting, particularly if you feel you don’t have adequate information or support from your care team.
Upon diagnosis, it’s important to take a few critical first steps:
Make sure legal and financial affairs are in order. As a Foresters member, you have access to Legal Link and Everyday Money – two member benefits that can link you to professionals who can answer questions and give you advice on issues like wills, power of attorney and estate management. Visit MyForesters.com for more information or call 800 444 3043. Make sure to include your parent in as much of the decision-making process as possible to ensure that their wishes are heard.
Find out as much as you can about the disease. In order to be as prepared as possible, you need to know what the future is likely to hold for you and your parent. As you research, you’ll also be able to find valuable been-there-done-that stories from people who have walked this road before you.
Meet the team. In order to be a true advocate, you will need to take an active role in your parent’s health care. That means meeting his or her physicians and other health care professionals on the team, and forging a good working relationship with them. Make sure you have their names and contact numbers so you’re always able to reach them when needed.
Talk to your parents. Make sure you know how they want things handled when they are no longer able to care for themselves, and who they want looking after them. Would they prefer to be at home as long as possible? Are they more comfortable with the idea of going to a long-term care facility sooner rather than later? This is a difficult conversation to have, but it will help ease your mom or dad’s fears if they know you will ensure that they’ll have the kind of care they want and are comfortable with down the road.
Once a care and treatment plan has been laid out and you have all the financial and legal issues taken care of, turn your attention to day-to-day living with dementia.
Be gentle and understanding. A dementia diagnosis is an incredibly difficult thing for someone to receive. Try to understand what your mom or dad is going through by listening patiently. Making an effort to keep loving communication flowing between the two of you will help you continue to see them as a “parent” and not just a “patient.”
Enjoy each other. Plan outings and activities that you both enjoy that are within your parent’s current scope of ability. Doing fun things together can help ease the tension and keep your relationship healthy. Even a simple stroll in the park is precious time well spent.
Maintain a routine. This is particularly important as the disease progresses. A routine can be very comforting when you’re facing so many unexpected things. Make sure you allow your parent to be as independent as possible as long as it’s still safe. Self esteem is an important part of feeling as good and as comfortable as possible.
Take care of yourself
Remember that part of being a good caregiver is making sure you’re taking good care of yourself so that you have the mental and physical energy you need to continue helping others. Keep your own doctor’s appointments, get enough rest, eat healthy food, set aside some time each day to do something that nourishes your soul, and if you start to feel burned out ask for help from other family members or health care professionals. Check out our article on how to make self-care a priority.
Most of all, remember that you’re not alone. There are resources available to help you through this journey, and people who’ve been there and can offer incredible advice.
The following websites may be very helpful as you walk this new path:
- Dementia.com – practical advice and information for both caregivers and patients.
- A Place For Mom – dementia care dos and don’ts for dealing with dementia behavior.
- The Alzheimer’s Association
- Alz Connected – a forum with messages boards for those living with Alzheimers as well as those who are caring for them.
413187C CAN/US (01/16)