First of all, keep it as simple as possible. For instance, this year I chose to decline invitations to join others for Thanksgiving. Even though they were willing to either come here and help or have us go there, I was feeling overwhelmed by either choice. So, for once, I listened to my gut. We are staying home. It will be just my husband and me and a very pared down menu. I will roast the turkey and make stuffing. There will be no fancy casseroles or multiple choices. I will serve heat and eat vegetables, open a can of cranberry sauce and (horrors of all horrors) instant mashed potatoes. Even worse, I will serve up a store bought pumpkin pie. I figure with enough whipped cream, it will taste close enough to homemade. I have promised myself that, after dinner, I will go to my quiet room while my husband cleans up. This was a difficult decision to get comfortable with. Cooking and baking has always been "my thing." Admitting that I can't do it was tough, but I realized my husband would probably not even notice the difference! The back up plan is, if I wake up that day and it is not a good day, I will send him to Bob Evans to get two turkey dinners to go. Flexibility is what works best for me.
Whether you have the holiday at your house or go elsewhere, crowds can quickly overwhelm someone with FTD. It doesn't matter if it is family, really close friends or strangers. Too many people means too much confusion. Add in having on the TV for football games, the frenetic energy of kids and pets, six conversations going on at once and it becomes unbearable very quickly. Even having too many choices of food can become an overwhelming task. So, what can we do?
If you are going to someone else's home and the one with FTD is able to stay home alone, ask them if they want to join you. If they don't, accept that and offer to bring some dinner home for them. I'm sure the host/hostess won't mind. The same scenario applies if you are planning to go to a restaurant. If they don't want to go, don't force it as that will only make it worse.
If they agree to go, or are unable to stay home alone, there are steps you can take to ease the stress. First of all, ask the host/hostess if there is a quiet place in their home where the person with FTD can retreat if they feel overwhelmed or over-stressed. Then show the person where it is and assure them it is fine to go there if they need to.
When in someone else's home or anywhere else, try to find an out of the way place for the person to sit. I like to sit where no one can come up behind me. Many with FTD are like me and have limited peripheral vision and it can be frightening when people come up from the side or the back. I like to find a seat up against a wall. I find chairs are better than sofas when there is a crowd so that I don't feel trapped next to someone. It also helps to be near an exit as well. I avoid seating in the path of children or pets. I try to not be too near the TV if it is on. Yes, those are a lot of requirements, but you don't have to meet them all. I try to find the seat that meets as many of them as possible.
The same applies for a dinner table, in a home or in a restaurant. Sitting in between two people can cause me to panic or become over stressed. I feel trapped and not in control of my own space. The actual ends of the table or the spot by the end works best. Perhaps having a back up plan in place would be a good idea. Watch for signs of stress, if it looks like it is going to be too much, perhaps the person could take his plate to another room to eat. Another option could be to suggest going to the quiet spot and keep a plate warm for them to eat after everyone else is done. While not ideal, it is better than risking making everyone uncomfortable.
Keeping the outing short is the best idea, if possible. More than a couple hours can often be too much. Many with FTD need frequent naps. These are needed to rest the brain and "recharge." It's not always easy to nap in places other than home. Not enough rest is never a good thing.
At Christmas time, opening gifts can be very over-stimulating. In some homes, everyone is tearing into their gifts at the same time. I have been in homes where the paper and boxes literally go flying. So now, you have colored lights (please do not have them blinking if you can control that), people talking over each other and sometimes just general mayhem. This is a definite time bomb for someone with FTD. In our family, we have always taken turns opening gifts and letting everyone see what the gift is. My dad would always laugh when our daughter was young. She would still be opening gifts at 2:00 in the afternoon. He would insist she must have too many gifts. That wasn't the case, she just liked to open one, show it off and enjoy it for a while. Obviously, this was a lot easier when it was just our daughter, my dad, my husband and I. This is not very practical in most cases, but it gets the point across that you should attempt as much quiet and calm as possible.
The other options, of course, would be for the person with FTD to stay in another room until it is over. If they don't want to be excluded, or you don't wish for them to, perhaps they can sit as far from the tree as possible, or in an adjacent room where they can still see.
Noise canceling headphones can be of benefit in many situations. If the person needs some solitude, but there is no where else to go, putting these on can be a big help. Closing their eyes for a while can help as well.
Travelling long distances when it involves someone with FTD can be an extremely difficult challenge. If traveling by vehicle, frequent rest stops and bathroom breaks are a good idea. It can help to pack some of their favorite snacks and drinks. This is a really good time to try the noise canceling headphones. You might want to check with their doctor to see if a sedative can be used during the trip. I can remember one time when travelling that the traffic was heavy and erratic. I actually tried to open the door and get out of the car... at 65 mph! Fortunately, the locks were set to the child lock system so that the door could not be opened. I now always take a sedative before a car trip longer than half an hour.
Traveling by air has its own recipe for disaster. The first thing you should do is visit www.tsa.gov/travel/passenger-support or call 855-787-2227. They will take down all the relevant information and work out what support you need. Then they contact the TSA agents at all the airports you are using to arrange assistance. There is a "card" (really a sheet of paper) that you print out that identifies you as needing assistance. Most of the time, for me, they have a wheelchair and attendant or tsa agent at the door closest to the airline I need. They take me to the tsa screening area and assist me through the procedure. Most often, I do not have to remove my shoes and just have to walk through the scanner rather than standing there with my legs and arms spread. They help me recover my bags and then take me to the gate. Some have even offered to stay with me until my flight boards. At some airports, I need to give the agent or wheelchair attendant the "card" I printed off from the tsa. The best part is that you don't have to wait in line, they take you right to the head of the line. Also, they are not as restrictive as to the amount of medications and such for your carry on bag. One time, the attendant took me, along with my daughter, to a restaurant so we could have a bite, then came back and took us on to our gate. I always tip the attendants well, especially when they go the extra mile like this. Do not try to tip the tsa agent though.
Of course, once you arrive to your gate, check in with the gate agent and let them know you will need early boarding.
When you make your seat choice, keep the one with FTD in mind. Some prefer an aisle seat so they don't feel trapped. I prefer a window seat so that no one can come up to me or bump into me. I don't travel without someone with me, so that person gets stuck being in a middle seat. We love planes that only have two seats on at least one side of the plane. Bring things to keep the person with FTD occupied, depending on what will keep their attention such as books to look at and music to listen to. Those noise cancelling headphones may save the day. Maybe even a stuffed animal or small pillow to clutch onto. Be sure to pick up a drink and a couple snacks in the terminal area in case they get hungry and keeping them hydrated is always a good idea.
If you are staying overnight at someone's home, be sure to explain FTD to the host or hostess. Explain what will be needed such as the quiet space to go to, what foods are preferred or restricted. Although difficult, if the person has continence issues, do inform them of this and suggest a waterproof mattress pad and ask where you can deposit soiled diapers and garments. It might also be beneficial to ask if you can use their laundry to wash those dirty garments. If their home is going to be crowded and constantly active, it might be best to stay in a hotel.
This sounds like a lot, but summing everything up, the goal is to keep things as calm and as close to the normal routine as possible. The cIoser to normal, the better. Try to limit things that can lead to over-stimulation such as lights, noise and commotion. It might be a good idea to ask their doctor for a temporary medication or sedative to have on hand if needed.
And... please, tell people to refrain from asking things like "Do you remember me?" "Do you remember this?" "Oh, surely, you remember when?" and refrain from saying things like "Oh, you look perfectly fine!" or "I forget things too."
One final thing. Keep in mind that it is normal for someone with FTD to be "up" in front of others, then to crash when they are back with you. I swear it is adrenaline that allows me to act almost normally when around others but have no scientific evidence to back it up. Unfortunately, once we are back with the people we are most comfortable with, that is when we break down, get irritable and nasty. When this happens, a good thing to keep in mind is trying to get them to rest and recharge. I shouldn't admit it, but it's times like this that a small glass of wine or beer helps me calm down. This is not advisable, though, if drinking is an issue for them and remember I said a "small" glass.
The calmer you can keep things and as close to their normal routine as possible will, hopefully, allow you to enjoy the holidays. If they blow up or lash out at you, remember they are most likely not trying to hurt you, their brain just has them out of control. Try to walk away and not argue back. Trying to reason isn't going to work. Please try to not take it personally, they really cannot help it. Don't give a lot of choices, just tell them it's time to do whatever it is you want them to do. Remember to choose your battles if they smell a little funky because they are too stressed to cooperate and bathe, it won't reflect on you. If they sneak too many cookies or pie, it's not going to hurt anything. The calmer you are, the calmer they will be and vice versa.
Happy Holidays! They can be, honestly!
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