Debbie Selsavage – Coping with Dementia
We have spoken before in this column about the kind of environment that enables you to provide better care for someone with Alzheimer’s or dementia. You need a calm and quiet setting with low stimulation.
You need stability and predictability so you can establish and stick to a routine. You need familiarity; no
You will notice that we have just described an environment that is everything that the year-end holidays are NOT! The holidays break our routines; they introduce noise, lights, and loud music. They include parties, changes in diet, and social pressure to be in a jovial mood, whether we are or not. Friends and
relatives visit, or to meet our family obligations we must travel. All of this can be incredibly disruptive and even traumatic for someone with dementia.
Rethinking Holiday Traditions
As a caregiver approaching the holidays, you may need to resist or modify the “traditions” for the sake of your loved one and your own wellbeing. You need to confront the fact that — at least in this difficult time of your life — it is not your “job” to accommodate the demands of tradition and the expectations
of healthy friends and relatives.
You can find ways to honor the traditions, but you may need to modify them to keep your caregiver role as manageable as possible. You too deserve to have happy holidays, but you will need to plan, prepare, and make some changes to keep them as happy as possible, on your own terms. First and foremost, don’t think for a minute that immersing your loved one in all of the traditional activities is going to make them — or you — happy.
Avoid the hectic aspects of the season
Do not take your person with dementia shopping, or to parties, or to noisy and colorful events where there are crowds and music. If you have to do some of these things, get competent help to keep and care for your loved one at home for those hours you need to be away. If a neighbor, relative, or friend is not available, contact a professional companion service. These are not hard to find. They can provide an experienced elder person at a reasonable cost.
Some of these professional companions are retired nurses or caregivers who understand your situation. Let me suggest that you plan ahead and not just “spring” this on your loved one. Bring this person in for a couple of hours a time or two before you really need them. Let your loved one become familiar with them and allow them the opportunity to establish trust. They know how to do this; it is their job. It will cost you a little more, but it will be worth it when you return from a hectic day of shopping or visiting to find your loved one calm, happy, and comfortable in the care of their new “friend.”
Your loved one may respond quite joyfully to the symbols of the season. For example, Christmas decorations or the symbolism of other religious holidays may be calming and reassuring for them. But you may need to tone it down a bit. For example, instead of hanging flashing bright lights on a tree, perhaps this year you use just tiny white lights. Or perhaps you will want to play quieter music. Maybe you can have visitation from friends and relatives that your loved one is comfortable with, but these may need to be smaller, quieter, and for a shorter period of time.
Maybe there are some holiday activities that your loved one will enjoy and that will make them feel useful. Can they help put up decorations, with your supervision? Can they spend time making paper chains? They will appreciate the opportunity to help.
Be open and honest about your needs
You should not hesitate to prepare visitors, whether they are friends or family. Write to them or have a conversation with them about the situation. Explain the dos and don’ts of contact with your loved one. For example, advise them not to rush in shouting and give a big hug. Explain they should approach the dementia person gingerly with an outstretched hand and a lowered voice, allowing your loved one time to respond. Coach them that they should say something like, “Hello, Bill, it is so good to see you. I am your aunt Mary.” They should not announce, “Hey, it’s Mary. You remember me.” The word “remember” puts terrible pressure on someone with dementia. They are painfully aware that it is the core of their problem.
Prepping friends or relatives on how to behave can be a delicate situation, but you should not be embarrassed by it. If others can’t empathize with your situation enough to modify their behavior, you’re likely to not have a good outcome at any rate, so maybe they should not visit. Just remind yourself it is not your job to keep their holiday season “normal.” It is your job to make it as happy and stress-free as you can for you and your loved one.
Don’t force your loved one to ‘get into’ the season
Don’t force your loved one to dress up or change their eating habits for the occasion. Let them wear what they like and are comfortable in. If there is a dinner, don’t serve them big helpings on unfamiliar china. Keep the routine; use their favorite plate. Serve their customary small helpings in courses rather than pile a plate to overflowing with things they may not recognize.
Adjust celebration activities to coincide with your loved one’s best times of day. For example, don’t start a meal or gathering in the afternoon or evening when sun-downing may be setting in.
Don’t be a hero or do it along. Bring in a friend to help, or as we said before, even someone from a companion service.
Through all of this, keep your expectations low. Do not expect family dynamics to change to accommodate your situation. If they do, great! But in most cases your family and friends can’t begin to appreciate what you are dealing with. You can ask them to be patient with your dementia person, but you must be fully prepared to be patient with them.
Turn to your friends and those who understand
I suggested above there may be ways to observe but modify your traditions. So here’s an idea: Why not host a holiday gathering for the members of your dementia support group? Make it a pot-luck so you can reduce your preparatory time in the kitchen. Maybe some of them can bring their loved ones too. Or if not the whole group, limit it to those special people who mean the most to you. This could be a holiday gathering far more joyful and comfortable than any other.
The challenge of traveling
Traveling with your loved one should be avoided if possible, but in the real world you may feel that you have to. Taking your dementia person to a strange place can be especially stressful, and requires planning and preparation.
One of your first decisions may be whether you are driving or flying. Both will place you in environments that are constantly changing, unpredictable, and usually noisy.
Flying should be avoided
Flying is hectic and gives you less control than driving. Delays, noise, crowds, strange environments, and rushing to meet schedules will shatter any sense of routine. It is stressful enough for “normal” people, but it can be a frightening and confusing experience for your loved one, possibly leading to difficult or inappropriate behavior.
If you can take a non-stop flight — even at greater cost — you should do it. Most of the challenging circumstances take place in the terminals, so plane changes should be avoided.
Again, as with your friends and relatives, do not hesitate to explain your special circumstances. Ask for pre-boarding with adequate time to get your loved one settled in. Far forward may be preferable to sitting in the back watching all those strange people coming in, pushing and shoving and struggling with their luggage. Unless claustrophobia is an issue, place your loved one in the window seat where they won’t be bumped and jostled during boarding. Give them a head set with music they like to help shut out the noise and confusion of other people boarding the plane. Advise the crew of your situation and coach them on how they might help.
If your loved one has to use the toilet, ask to use the lavatory in first class. This will avoid the long trek to the back of the airplane past rows of strange people.
Driving also has its challenges
If you hope to drive somewhere, you may want to take a short trial trip including one overnight stay to see how your loved one will react. Be aware that taking your loved one out of their routine and environment may cause difficult behavior and wandering issues. Someone who needs assistance with bathing, dressing, and toileting, or who is prone to paranoia or delusions will likely have real difficulty with traveling. If they cannot tolerate the short trial trip, you will surely not be successful on a longer trip.
This test can determine whether you should stay home, or ask family to come visit you instead. But if you feel you must travel, you may want to discuss it with your physician who may provide an anti-anxiety medication. Again use music to your advantage. I was lucky enough that I could put a headset on my husband and he would sit quietly for hours, listing to music and watching the world go by.
Preparation can be the key
Being as prepared as possible will work in your favor, whatever mode of travel you choose. Here are some pointers:
Travel at your loved ones best time of day.
Choose comfortable clothes and shoes.
Allow time so you don’t have to rush.
At an airport, reserve a wheelchair or terminal taxi to limit the fatigue of walking.
If flying, try to get a non-stop flight and inform the airline staff of your situation.
If driving, stop frequently to hydrate, snack, and walk around. Stop early enough to have dinner and maintain the nightly routine.
Have a bag packed with: drinks; snacks; activities and favorite items; favorite music with headphones (to limit the noise and confusion); have emergency contact; information; have a list of current medications and dosages and allergies; take copies of legal papers; have a travel itinerary; use an identification bracelet on your loved one and carry a current picture; bring extra clothing; and bring incontinence products.
Try to maintain a sense of humor, and enjoy your time as much as possible. Recognize when your loved one is showing signs of fatigue and agitation, and try to provide enough rest and quiet time. Remember to breathe and watch your stress level. The person you are with is taking cues from you. Be as flexible as possible and go with the flow. Have a back-up plan when possible.
Do it the way it works for you
In conclusion, planning and attitude are the key to having a holiday that is more enjoyable, safe, and as stress-free as possible. Being prepared can help avoid or better handle any mishaps that you encounter. Stay calm and ask for help from family and friends.
Remember that you are at a very important time in your life and dealing with difficult and unusual circumstances.
Whenever you can, make things happen your way; which is not necessarily the way that traditions, family, and friends may expect of you.
You and your loved one come first, and remember that we all deserve the best.
Debbie Selsavage is a certified trainer in Positive Approach to Care, a licensed assisted living administrator, and President of Coping with Dementia LLC, an organization dedicated to education and training in higher and more compassionate standards of care. Contact her at 352-422-3663 or at www.coping.com