When Dementia is in the House: Advice for Parents

For You, the Parent

Parenting represents one of life’s most challenging endeavors. If  you manage this while fulfilling the myriad demands of a caregiver  to a severely ill spouse, you need support. It’s possible to let the  emotional needs of your children, who may present themselves as quite  independent, slip away in favor of fundamental safety, financial survival,  or life and death decisions. But your children require even more of  your attention and affection during this time. So this site, drawing on  comments from children who care for loved ones with Frontotemporal  Dementia (FTD), offers tips to help you navigate unfamiliar territory  when everyone is relying on you.

Special Challenges for Parents  

Who Are Primary FTD Caregivers

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! Isn’t that  encouraging?”). 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  tend to yourself once in a while, 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 the 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 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. So it’s your responsibility to establish and maintain  open communication and unspoken support. In many cases, children  are losing one parent; they need to feel confident they will not lose  both. But you can’t pass along that assurance 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 other people to help with driving duties. Sports such as soccer,  swimming, basketball, baseball, and hockey provide a reassuring team  atmosphere, a healthy escape from the burdens at home, and a strong  identity for the child. Others gravitate toward choir, music, theatre, or  similar pursuits. Some even find that volunteering helps 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; 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 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, who look to you for  stability and guidance. At the same time, it’s important for them to  see (again, 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 these ideas:

• Ask the neurologist 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  critical appointments 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. Rather than feeling frustrated at what may seem  like an empty social nicety, ask for specific assistance in a way that  empowers everyone. See above example regarding exercise, or  ask them to take your ill spouse to lunch or a movie, or spend time  at home. Suggest help picking up groceries, running errands, or  providing dinner occasionally. You’ll see that people are thrilled when  they know what will make a difference.
• 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 indifferent to greetings  and questions.  However, she still wants to connect with her family and friends.  You have to help make that happen! She is not hard of hearing, just  unresponsive, 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 is  in the house; even then, keep an eye on her, since she can be elusive. » 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!

Discussing Dementia With Your Kids

Teens yearn for interactions that diminish frustration,  embarrassment, and anger, and want specific guidance from  doctors, therapists, or relatives about how to engage their loved  one. Pressuring kids “to spend time” with the family member  suffering from dementia may add stress to each encounter. Instead,  parents and friends should encourage adolescents to find mutually  satisfactory activities without forcing exchanges. Suggestions include  movies (which can help ease the burden of communication), chess  games, walks, or family photo album/ home movie viewing to revive  good memories.  

They want to understand the illness, but not in great detail, so energy  spent obsessing about specific and often elusive diagnoses is better  directed elsewhere. The more children want to learn, the more they  will ask. Often, this evolves with their age, with older teenagers  expressing a desire for more knowledge. Mostly, they want to feel  secure that you will be able to manage, that you are getting help, and  that despite this tragedy in your family, you will find happiness.  

How and When to Tell Them?  

Essentially, kids want to feel informed sooner rather than later, so don’t  wait in an effort to protect them. It doesn’t work, because they will know  something is wrong. Share the news in a conversation that allows them  to express emotions and ask questions. The depth of details depends  on the age of the child (kids 11 and older want more), but they have a  very good sense of how much they can handle, and they can guide you. Adolescents quickly grasp the actual or possible symptoms, because  by the time the diagnosis rolls around, they’ve probably experienced a  lot of odd behavior. They usually feel enormously sad — yet relieved —  to learn that an illness has caused the changes in their loved one. But  some are surprised and reassured to hear how much those behaviors  can vary from one patient to another. Adults need to remind kids that  no two patients are exactly alike, and no single patient exhibits all  symptoms. Unpredictability is the only constant. When children know  this, they can attribute all unpleasant interactions with their beloved  family member to the illness, which can ease their anguish.

Checking in with Your Kids

This may seem obvious, but finding time to sit down and check in  with your children is difficult — even when you don’t have an ill family  member to worry about. Adolescents tell us that they are extremely  reluctant to approach parents under stress, for fear of adding to the  problems. Therefore, the responsibility lies with you to set up regular  check-in sessions. This may entail setting a specific day of the week  when everyone sits down to dinner, or it may fall in those few minutes  before you go to bed (because if you have teenagers, they often  outlast you at night). Driving to and from school or practice is not ideal,  but if that’s all you can get, use it wisely. Have a hard time initiating  conversation with your teen? Ask him to load some music onto your  iPod (or burn a CD), then play it in the car. It’s a fantastic way to bridge  the gap.

Helpful Messages to Reinforce

• Everyone feels the same emotions.  
• Not only are they normal, they are completely acceptable.  
• There is no wrong way to react to such a heartbreaking loss, and  children need to hear this repeatedly.  

It might be helpful to admit that while you must remain strong for the  family, these sentiments affect you, too. Typically, they include:

• Sadness
• Guilt
• Anger
• Shame
• Resentment
• Confusion
• Fear
• Frustration, frustration, frustration

Make sure you know of a psychologist/family therapist who is ready  to help, if necessary.  

Most often, teens just need you to hear them and hug them.  

Empowering Kids to Help You — and the Patient!  

Again, modeling life balance and an openness to managing as a team  is most important. When friends say, “If there’s anything I can do to  help, just let me know,” follow through. Let your kids hear you say, “My  husband would love to listen to stories about the time you spent together.  Would you be willing to pick up sandwiches and have lunch at home with  him?” or “Next time you run to Costco, could you pick these items for us,  and I’ll pay you back?”  

Also tell your kids how you need their help. If it’s not related to  caregiving, it may revolve around household chores that relieve you and  make them feel like an essential part of the family — emotionally and logistically. “Why doesn’t anybody help around here?” does not sound  the same as, “Can we talk about who will be in charge of the trash in the  house? And the dishes? And the dog? Can we brainstorm a system that  works for all of us?” Taking on every detail because you feel terrible that  your children are suffering sends you marching down the martyrdom  trail. And nobody wants to follow you there.  

How Much Caregiving Should Kids Do?  

Caring for a loved one can be meaningful and positive— but only to a  point. Adolescents reveal that caregiving does not connect them to the  ill family member (besides the good feelings that arise from helping  their parents), and can become enormously stressful if required too  much. They must have time to live their own lives.  

Physical demands, such as feeding and suctioning for a loved one  who can’t eat or swallow, are difficult but sometimes less taxing  than encounters that devolve into emotionally draining and negative  memories. Caregiving at all levels can make children feel awkward,  uncomfortable, and frustrated. Frequently, kids rely on you, the  healthy parent, to act as a buffer. Despite the stress endured by  all family members, however, helping to care for the person with  dementia draws the children much closer to you. While not much  changes with the patient, all agree that their relationship with the  healthy parent evolves significantly.