Having a parent or loved one with any form of dementia in never easy. It comes with a continual sadness over the loss of the person you once new. The holidays can be a particularly difficult time to deal with this reality, but that is nothing compared to the difficulty you may fear by having your loved one visit during this season. With that in mind, I’m posting the following quick guide to make these experiences easier on the both of you.
1. The General Rules Still Apply
There are some best-practices employed by elder care providers, and these should be continued while your loved one is in your care. This is particularly important when visiting you because the environment may seem foreign to your loved one, increasing anxiety as well as the risk of disorientation. These practices include:
- Sticking to your loved one’s regular routine as much as possible
- Being mindful of hygiene, but also respect your loved one’s privacy
- Allowing your loved one do the activities that they can ordinarily do with safety
- Avoiding being domineering or expressing frustration, where possible
2. Manage Expectations
Whether your loved one is visiting for weeks or days or just a meal, making sure they are safe and being taken care of will be a significant responsibility, and this will effect the time you have to devote to holiday festivities and other responsibilities. If you expect to host a loved one with dementia, it is essential up front that you make your peace with the fact that you won’t be able to do everything you like. If you plan on entertaining, you may have to buy desserts, or ask people to bring sides, and you may need have the kids spend a little more time talking to Grandma or helping out around the house than they might like. This exact dilemma will be faced by tens of millions of Americans this holiday season, and there is absolutely no shame in making the necessary adjustments. Trying to do it all will only lead to stress and frustration. Try not to forget: it’s your holiday, too.
3. Provide a Place to Decompress
Individuals with Alzheimer’s and other forms of dementia are easily disoriented by busyness in the sights and sounds around them, and this time of year your home may be filled with both. If your loved one is visiting, they may already be a little disturbed by the change in surroundings and routine, but even if they live with you year-round, the bustle of people going in and out with shopping bags, several cooking in the kitchen, loud gatherings, and the lights, presents and other decor all have the ability to trigger a wave of confusion, which can result in anxiety, mood changes, and even physical lashing-out in some cases.
To address this, it is best to have a place set aside where your loved one can sit in comfort with limited outside stimuli if the strain of holiday activity becomes too much. In some cases, rotating a chair to face the side of the room rather than the center may be sufficient, but for others you may need to set up a television or radio and comfortable space in a more remote area of the house, and be prepared for them to spend a significant amount of time there during business. Understand that you’re not excluding them and they do not feel excluded; you are just allowing them to enjoy things within their own tolerances.
4. Get Them Involved
Even if your loved one has moderate or moderate-severe dementia, they may still be able to perform some basic tasks to be of assistance during their time with you. While you may not think it necessary, it can establish a sense of normalcy for your loved one, and this in and of itself may take a bit of pressure off of you. If your loved one is staying with you, they may be able to help wrapping presents, light decorating, laying out lunch for the family, and the like. Even if they are just over for a family meal, they may be able to fold napkins or lay the silverware. What you are able to accommodate will depend on your loved one’s acuity as well as any physical limitations, but even small opportunities to participate can have a calming effect, and benefit both their lucidity and self-worth.
5. Kick Up the Nostalgia
One of the great pains of being a caregiver for a loved one with dementia is the awareness that you are losing the person you know, a frustration that they may also share. The holidays present an excellent opportunity to bring out old photo albums and scrapbooks, as well as for singing Christmas carols and religious songs. Aside from being appropriate for the occasion, these activities invoke multiple areas of long-term memory, and even individuals in the later stages of dementia can have very lucid, normal experiences while engaging in them. So be liberal with the reminiscing; it will make both of you happy.
6. Feasts and Alzheimer’s Don’t Mix
An often overlooked footnote to dealing with an elder loved one during the holidays is the difficulty posed by large meals. Holiday feasts tend to contain lots of food choices and lots of decorations and frills, and both can overwhelm individuals with advanced dementia, actually rendering them unable to eat the food in front of them. The following tips can help ensure that your loved one is able to enjoy the meal along with you:
- Decorations on the table itself should be modest, and the tablecloth should not be too “busy”.
- Your loved one’s place setting should only have the plate, silverware, and glass they will need for that course, and no placemat or charger.
- Always prepare a plate of food for your loved one. If you think they will enjoy many different dishes, give them half the choices to start and make a second plate later.
- If your loved one isn’t eating, give them a smaller plate and move the food to it one item at a time. Another option is to put their meal in a bowl, which gerontologists have noted makes dementia patients much more likely to eat the food in front of them.
- If your loved one starts eating with her hands, and a gentle reminder that they have utensils doesn’t correct it, don’t attempt to force them. It will not work, and trying will only agitate both of you. Instead, offer them what you can as finger food. Making a simple sandwich out of the meal cut into quarters is an easy solution. If you know this will be a problem in advance, try to have cold alternatives – baby carrots, celery sticks, grapes, apple wedges, cheese cubes, e.g. – available to meet their nutritional needs.