Life Interrupted

Dealing with dementia

Holidays With A Loved One With Alzheimer's

How to manage traditions and expectations to experience the joy.

It's official. The holiday season is now in full swing. No matter which way you turn, you are confronted-no make that bombarded-by the happy holidays. Decorations are everywhere:  in offices, in stores, and even on city sidewalks. It's hard not to acknowledge that the holidays are here. Trees are going up and are lighted; electric menorahs are in the windows. Piped-in holiday music is playing everywhere, from offices to malls to elevators. There is not a commercial on television, radio, or the internet that isn't geared to the holidays. No matter how much you may want to avoid this time of year, it's hard to escape the holiday cheer.

And for many caregivers, escape is what we crave. When your loved one is going through any of the different symptoms or stages of dementia, it's normal to feel some mixture of depression, anxiety, and loss. A diagnosis of dementia will change and interrupt your life. As a caregiver, you now have new responsibilities, and caring for your loved one-whether wanted or not-will change the way you view and deal with the holidays.

Know that your emotions are going to take a hit and that you may find yourself feeling uncharacteristically stressed and upset.

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The reality is that when someone you know and love is diagnosed with dementia, the "new normal" can be difficult to understand, accept, and deal with, especially around the holiday season. Whether this is your first holiday dealing with dementia or your twentieth, in order to get through this time successfully you will need to adjust your expectations. For many of us caregivers this will mean lowering the bar on our holiday expectations and doing less instead of more.

This may sound easy in theory, but the reality is that we all have a mental image of the perfect holiday and a need to recreate it. As a caregiver, you will now need to keep in mind that your loved one's stage of dementia will determine what will work for you and for them for this holiday season.

It's unrealistic to be merry when it seems like your whole world is falling apart.

You need to know that as a caregiver, it all comes back to you. Whether your loved one is a spouse, parent, grandparent, other relative, or family friend, you're probably wondering what to expect during your time together. This may bring on additional stress and anxiety. Know that the presence of Alzheimer's or dementia will change the way the holidays "have always been." In spite of the diagnosis of dementia, there are concrete steps that you can take to create a more enjoyable holiday experience. The next five strategies will help guide you and help you handle this holiday season in a calmer and more sensible way. 

Understand and acknowledge why you feel the way you do. There's nothing joyous or merry about the fact that someone you love has a degenerative and irreversible progressive disease. So even though this is supposed to be "the most wonderful time of the year," it's completely normal for you to feel sad, confused, worried, or even frustrated by the prospect of coming holiday gatherings. Don't feel that you need to put on a smiley face-especially if this is new to you. If you feel comfortable, be honest and tell friends and family how you feel. Whether they accept your feelings or not, at least you can make them known. On the other hand, you will also need to take other people's feelings into account and respect the fact that this is their holiday too. 

Set real holiday expectations. We live in a society that's inundated by Hallmark holiday images: families gathered happily around the menorah or Christmas tree, laughing around the dinner table, or singing favorite holiday songs. Even if you've somehow managed to achieve this type of complete holiday bliss in the past (which is unlikely), you need to know that this year will not be the same. Alzheimer's and other types of dementia will dramatically and permanently change aspects of your loved one and their behavior. Trying to force them-and your family as a whole-into a pre-disease holiday template is like trying to fit the proverbial square peg into a round hole. This may seem Grinch-like, but it's wise to hope for the best while preparing yourself for the worst. 

Acknowledge the elephant in the room. Depending on the person's symptoms or stage of dementia, the 800-pound elephant in the room is the possibility of death around the holidays-and with good reason. Studies have shown that many people expire around major events like the holidays and birthdays. Anticipated grief is what many caregivers go through on a daily basis. If this is your concern, try not to feel morbid or guilty. To reduce stress it might be helpful to discuss your feelings with a few close friends or loved ones. You might be surprised when they admit that they've been considering the same possibility. 

Family dynamics don't change. We all know the definition of insanity...doing the same thing over and over and expecting a different result. Well, it's the same thing with families. We do the same things over and over again and expect new results. The reality is that family dynamics and roles are deeply ingrained. They do not easily change. Going home for the holidays often opens and exposes old wounds. You would think that when a loved one has dementia the family would come together and bury the proverbial hatchet-a nice thought for some families, but not very realistic. As "children," holiday gatherings are the perfect time to bring up and rehash all of the wrongs that we feel we have suffered. And why not? We are with our families, and this is the perfect time to right our wrong...or so we think. 

A person who is now caring for a loved one with dementia is vulnerable. Know that caring for a person with dementia is going to reduce a caregiver's ability to make good decisions. Lack of sleep, increased stress, poor nutrition, and depression, which affects many caregivers, will all have an effect on how responses are formed. 

Be sensitive to the needs of the patient and the caregiver. Unless you are living with-and even if you are living daily with-a person who has dementia, you might not be aware of just how much the patient's daily life and needs have changed. This is where denial and/or getting used to behavior comes in. The reality is that as close caregivers we often don't see the changes that our loved ones are going through because we normalize them. Family members may want to keep the family fantasy alive (i.e., Mom or Dad is fine; therefore all is well and "you" are wrong). No matter what your belief is, before visiting or hosting during this holiday season, check with the caregiver to make sure that you understand the "new normal." It may not be what you want it to be, but it is what it is. Dealing with this new reality is going to be a challenge for everyone. 

It's not going to be easy, but if you take some extra care to think through how you do things and make decisions based on reality, this holiday might not be so bad after all.

 

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Nataly Rubinstein, M.S.W., L.C.S.W., C.A.S.W.C.M., is a professionally licensed clinical social worker and a geriatric care manager specializing in dementia care.

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