Life at Home

When someone in the house has FTD it affects the physical environment as well as the emotional one. Things around the house will start to change… rooms will feel different and have different purposes than they did before. Adjustments in the home environment may become necessary to help manage symptoms or to insure the person’s safety.

You will find suggestions below for ways you and your family can adjust to help the person with FTD and help the house run more smoothly.

Create a predictable routine.  

You may have found that getting out to school in the morning is easier if you get up at the same time each day, grab a simple breakfast and keep your backpack in the same place. People with FTD like having a daily routine that is familiar and predictable. Knowing what to expect and not having to react quickly helps them to function at their best.

Your family can work together to create a calm, predictable routine at home. Make a list of things that need to be done and the person responsible for each task. Identify tasks that the person with FTD likes and is able to do. Post a schedule for each day with activities and chores as a visual reminder and way to help organize the person’s day. It is important for people to stay active and feel productive. Plan ahead so meals can be served at the same time each day. If not everyone can make it, the person with FTD may want to eat first.

There will be times when the plan doesn’t work perfectly, but staying flexible will help you and your family make adjustments when needed.

Protect your interests.

Think about how you can do things differently to fit what you need:

• Noise pollution – People with FTD may watch television non-stop and often the same programs again and again. If that is irritating to the family, set them up with a TV in another room so the noise is less noticeable. Maybe they can use headphones to listen to the show. The sound of the music you like to play may cause the affected person to be agitated. Keep your ear buds handy so you can keep the house peaceful for them but so you can still enjoy your tunes.

• Homework central – Are you used to doing your homework at the dining room table? The sick parent may be pacing around that part of the house and it’s distracting. You may have more privacy in your room or in the kitchen.

• Out of sight – out of mind – Like a child who touches everything, someone with FTD will respond to what they see. Don’t leave your school work or personal things out where they can be disturbed.

• Visiting hours – Having friends over can be challenging. If they are uncomfortable around your sick parent, it may help to talk to them beforehand and tell them what they can expect. You may need to hang out in parts of the house where your sick parent doesn’t go, or lock the door so your sick parent doesn’t bother you. Understand that some of your friends might be too uncomfortable to come over.  If this is the case, find other places to spend time with them.

Simplify the home for safety.  

Another focus for your family will be to make sure your household is a safe, supportive environment for everyone. The person with FTD may become careless while driving or cooking, or even while playing with younger siblings. Tell your well parent if you see anything alarming that could put you, your sick parent or another member of your family in danger. This is not “telling on” a parent, but rather protecting the safety of you and your family. Someone with FTD is probably not aware they are using poor judgment, which is why it is important to focus on creating a safe environment for everyone.

Celebrating – holidays happen

Holiday parties and special occasions with extended family can be challenging for both you (the family) and for the person with FTD.  The added stimulation can trigger more pressure around communicating for someone with primary progressive aphasia and more symptomatic behavior for those with behavioral variant FTD.

Many families find that they spend a great deal of effort “managing” social situations – by doing things like assigning seats at dinner or keeping the person with FTD contained to one room- so things go as smoothly as possible for everyone. Not only is this exhausting for you, but it may seem to others like you are being bossy, inflexible or “hard” on the person who is ill. It can feel like a no-win situation. At times like this it’s important to remember FTD is a rare disease most people don’t understand- which means it’s necessary to be patient with “outsiders” too!

Of course you’ll want to include the person with FTD in family celebrations for as long as possible. It may be too challenging to host a large gathering. It may become too difficult to bring the person with FTD to parties or big gatherings. If you and your family will enjoy yourselves more without them, or if it’s too much stimulation for the one who is sick, you can make the decision as a family not to include them.

Other holidays, such as Fathers’ Day or Mothers’ Day, can be particularly emotional because the person with FTD can no longer enjoy it in the same way or may no longer understand what the holiday is all about. The best way to approach a scenario like this is to keep it simple and focus on spending time together as a family.

When personal care is TOO personal

As the disease progresses, a person with FTD will need more hands-on help with dressing, bathing and going to the bathroom. This is difficult for a teen to see and even harder to help with. Nurses and health care aides have been trained in how to help someone with personal care. If you are asked to help, take the time to learn what is involved and let people know if you feel overwhelmed or uncomfortable.

When a parent moves

There comes a point in time when the person with FTD needs so much help that it is too hard to take care of them at home. They may be safer and more comfortable living in a group home, assisted living facility or nursing home.

Some teens feel confused or very sad that the person with FTD has to move. Others feel glad or relieved that things will be easier at home. When a parent moves away from home there is no “right” or “wrong” way to feel. It is normal to have many different feelings about your parent’s move and your feelings may change from day to day. In time even this change in your family will start to feel more normal.

It’s important to tell your well-parent how you feel about visiting at the care home, especially if you feel strongly that you do not want to go. Talking about it together will help you decide when the time is right to visit and what the visits will be like once you’re there. You may find it is easier to visit with your parent in their room and not in a common area where there are other residents around.

You may decide not to visit together every time or take some time off from visiting. It does not mean you love your mom or dad any less. Adjusting to a parent’s move will be different for every person, so take one day at a time and allow yourself time to get comfortable with the transition.