Special Challenges

When your spouse is diagnosed with a terminal, degenerative illness, you suffer relentless, devastating loss with no apparent resolution long before that person’s physical death. You become a full-time caregiver. And when someone young, strong, and mobile suffers from dementia, you can add warden to those duties as well. You must interact with friends and family who don’t understand what you are going through, and they may unwittingly underestimate your pain by minimizing the situation (“Well, he seems fine to me!”). In an instant, you also become a single parent and the primary breadwinner, managing the family’s finances and nurturing children who may need more of your time and consideration than ever before. Nothing about this journey is simple or painless. But if you can focus on balance, some rewards may surprise you.

What You Need to Do for Your Kids

What you need to do for your children, more than anything, is take care of yourself so that you can remain balanced and patient. Children are highly sensitive to your mood, and almost universally, they say that your pain, on top of losing the other parent, can be one of toughest parts of the whole ordeal. Your stress negatively affects your own health, and deeply influences the well-being of your children.

Arranging for time away from your ill spouse to attend your kids’ sports and school events and share outings that nurture the relationship with your kids is paramount. Younger children may be more inclined to demand your attention, but adolescents and teens will drift away to “spare” you additional worry. It’s your responsibility to establish and maintain open communication and unspoken support. Children are losing one parent to dementia; help them feel confident they won’t lose both because of the additional strain consuming the home. But you can’t pass along those assurances with just words.

Kids’ Lives Outside the Home

Nearly all teens say that extracurricular activities help them more than anything else, so this is something to encourage — even if it means enlisting friends to help with driving duties. Sports such as soccer, swimming, basketball, baseball, and hockey provide are assuring team atmosphere, a healthy escape from the burdens at home, and a strong identity for the child. Others gravitate toward choir, music, theatre, or other pursuits. Some even found that volunteering helped change their perspective and appreciate the parts of their lives that are going right.

Why It’s Essential to Pace Yourself

By slowing down and taking quiet moments (note: they aren’t distributed by someone watching over your household; you seize them!) for yourself, making time to exercise, and by asking for help to accomplish these objectives, you set an essential example for your children. You show them —much more effectively than telling them — that it’s acceptable to spend time with friends or pursue activities you enjoy. If children sense your stress and irritability, they will not speak up and share their own pain, for fear of overwhelming someone they want to protect and help. Nor do they want to lose one parent and watch the other descend into martyrdom. How can you alleviate your child’s pain if you can’t manage your own? Do something each day to take care of yourself, even it’s just a 10-minute walk around the block by yourself to decompress and find a way to smile. Everyone will benefit.

Expressing Emotions to Your Children

This is tricky. Do you bottle your emotions in an effort to remain “positive” for your children? Is this healthy? Or should you allow your children to see and hear what you’re feeling? Not surprisingly, kids say they need a balance. It’s fine to break down once in a while and expose your frustration and grief — it’s authentic — but you should limit these episodes. They can scare children, because they look to you for stability and guidance. At the same time, it’s important for them to see (remember, what you do is far more powerful than what you say) that it’s acceptable to express emotions along the way. This gives them permission to do the same.

Finding Help Outside Your Family

Feeling alone at points along this journey is inevitable. But consider countering those feelings with the following ideas:

Ask the neurologist or other treating physician to direct you to the nurse or social worker at the clinic who organizes support groups. These professionals also understand every aspect of family trauma associated with dementia, and can serve as valuable resources on all levels.
Attend a support group in your area or online. Communicating with people who understand exactly what you are feeling can ease the isolation.
Ask for a reference to a family therapist/psychologist who understands dementia, and can assist you or your children.
Make exercise or your other tried-and-true stress reduction activities an unbreakable appointment on your calendar, and get help doing it. Ask friends to meet you each week for early morning walks, enroll in a dance or tai chi class at the community center, join a triathlon or running group. Ask other people to assist you by supervising your loved one during these times. Innovative friends will likely assemble a rotating schedule.
When people say, “Let me know if there’s anything I can do to help,” understand that they mean it, express your gratitude, and make it work for you by educating them. Rather than feeling frustrated at what may seem like an empty social nicety, ask for specific assistance in a way that empowers everyone. Ask a friend to meet you for an early morning walk, or take your ill spouse to lunch or a movie, or spend time with him at home so you finish chores. Suggest help picking up groceries, running errands, or providing dinner occasionally. You’ll see that people are thrilled when they know what to do to help.
Before social gatherings, you may want to guide family and friends. One husband sent the following suggestions about how best to interact with his wife:
- As her disease progresses we will see less communication initiated by her. She will appear to be distant and non-responsive to greetings and questions.
- However, she still seeks connection with her family and friends. You can help make that happen! She is not hard of hearing, just un-responsive, so speak in a clear, normal voice. She will not answer most questions with more than a “yes” or “no.”
- She likes to walk, but should always be with someone unless she’s in the house; even then, keep an eye on her, since she can be as elusive as a 2-year old.
- When she eats, make sure that she has small portions. If you are next to her, offer to cut up some pieces so she can eat without a knife.
- Sometimes she will take your hand, or lightly touch your arms or cheeks. Don’t be alarmed. She fondly remembers her connection with you, but she can’t tell you this in words, so this is her way of reaching out to you!

Written by Tiffany Chow, M.D. and Katherine Nichols, based on qualitative research.