Caregiving During the Holidays


The holiday season is here!  And that's a good thing, right? 

When you're a caregiver, the holidays can be a time for cheer, but mostly it's a time for preparation.  So, what do the holiday's mean for the caregiver and the loved one that they are looking after?

There is potential for traveling either locally or out of town.  Of course, with travel comes the usual packing up of supplies along with transportation issues.  Included in this is wondering "Is our destination accessible?" and "Will someone there be willing to help with my loved one?".

There are people around us that don't know the true nature of our loved one's conditionon. They may feel uncomfortable which in turn may make others uncomfortable.

Is our loved one even aware of why there is a gathering of family and friends? 

Is there a chance that our loved one's habits or requirements will be?[G2] 

My experience

"Oh, please bring Diane!".  As you know, Diane is my wife.

So, I do all of the things necessary to bring her along with me to a small gathering of friends. She is enthused about going and seeing her friends again. However, when we get there, she is virtually ignored. The perception is that:

·        She has a brain injury.

·        She cannot recognize who we are.

·        She doesn't understand what we are saying.

·        She can't speak because of her Aphasia, so why speak to her?

·        Maybe she'll "act out" in an inappropriate way if we speak to her.

Since she is being ignored, I make the effort to inform the folks at the party about what's new in her life.  They are interested, but even though she is sitting a foot away from me, they don't talk to her.  They talk to me about her as if she was invisible.

I'm upset, Diane's disappointed and depressed.  WE make it an early evening and go home.

For most of us, the holidays are a wonderful time to share the joys of family life and friendship.  Unfortunately, for many older and disabled adults the holidays can be highly stressful, confusing, or even depressing if their mental, physical and emotional needs are not taken into account.

TRADITIONS

Many families have holiday traditions that they have practiced for years, or perhaps have suspended them due to a loved one's condition.  I think that it's important to realize that it many cases it is impossible for us to know for sure what our loved one is thinking.  It might be appropriate to re-awaken their memory by continuing traditions for the holidays.  Even if your loved one doesn't fully comprehend, try to make it a fun and rewarding experience for you, along with the family and friends around you.

Our family's ancestral homeland is Poland. As such, Christmas time is an important time for celebrating in accordance with long-held traditions. As a caregiver, I pick and choose the parts of our traditions that I feel I can manage without a large amount of difficulty.  You might not get to do everything that you used to, but you can do something!

COMPROMISE

Before my wife's stroke, if I even hinted that I wanted to get an artificial Christmas tree, World War 3 would erupt!  I had to slog out to one of those "cut it yourself" places or find a vendor nearby to get the tree.  Then bring it in, get melted snow and needles all over the house, set it up, decorate it...etc.  Needless to say, I am now the proud owner of a nice, moderately sized artificial tree that came with the lights already on it.  My wife even likes it!

DECORATING

If your loved one can't reach to decorate a holiday tree or doesn't have access to parts of the home that you usually decorate, I recommend setting out the decorations and letting your loved one see them, touch them and select them for the tree.  Your tree may not look like Martha Stewart was there, but you may be surprised what it means to your loved one.

TRAVEL FOR THE HOLIDAYS

Many people have friends and relatives out of town.  Even under "normal" circumstances, travel can be a hassle.  Travel with a special needs individual who you are looking after can be especially difficult depending on circumstances.

There can be a lot of pressure to visit those out of town.  In many cases, friends and relatives don't fully understand what it takes to get loved ones to an out of town destination.  In addition, there is the issue of where to stay.  Your family and friends may graciously invite you to stay with them. This might be difficult as most homes are not handicapped accessible.

Personally, we always stay in a hotel/motel. Other than the cost, there are definite advantages:

The advantages of staying in a motel are:

1.   You can stay as long as you wish

2.   You can kick back and relax back at the motel

3.   Privacy issues can be taken care of

4.   Go to sleep when you want to

5.   Bathe, as handicap room, have tub benches or roll in showers 

Note:  When booking a room be sure to let the booking agent and/or motel that you must have handicap accessible rooms.  I find that accessible rooms are usually available in reasonably priced motels such as Microtel's and Country Inn and Suites.

SHOPPING

Like all ventures out of the house, going out shopping to a mall or other retail outlets presents challenges.

As a caregiver, you'll have to do all of the heavy lifting (literally). It's best to assess your loved one's physical and cognitive capabilities before you decide to go out shopping.  What's the burden on YOU going to be?  If it's too much, consider online shopping with your loved one if you have computer access.  Most retail websites provide a very accurate depiction of the products that they offer.  In addition, you can usually sort products by price, as well as, review the ratings of the product.  One the plus side, there are infinitely more products online than in a typical mall!

Sites like Lands End allow you to create a replica of yourself where you can see how a piece of apparel might look on you.  Online shopping can be a very fun experienceand you can do it in your pajamas!

GENERAL TIPS

If you have older friends and family members with chronic or health issues, you can help them enjoy the holiday season more by following a few of these simple tips.

1.   Cautiously stroll down memory lane. Holidays provoke memories, which can be especially powerful in the later years of life. However, if a loved one became disabled as a result of a sudden event or chronic illness, bringing up "the good old days" may not be appropriate as it may serve to remind them of what may not be realistic in their current situation. Using picture albums, family videos and music, even theme songs from old radio or TV programs, can help stimulate memories and encourage your loved one to share their stories and experiences.

May I suggest that you try it out in small increments first.  Invoking recent memories, like just before the illness segued into disability may be too depressing. Go back further in time and see if that works.

"Holiday blues" are feelings of profound sadness that can be provoked by all the activities of the holiday season. Seasonal depression can have a particular impact in the lives of people with disabilities of any age. "In some people, the 'holiday blues' represent the exacerbation of an ongoing depressive illness.  Depression is a dangerous and life-threatening illness. Tragically, suicide rates increase with age and disability.  Depression should never be ignored or written off."

People whose memories are impaired or have other cognitive issues may have difficulty remembering recent events, but they are often able to recognize and share stories and observations from the past. These shared memories are important for the young as well—children enjoy hearing about how it was "back in the day". As a caregiver, you may have to interpret your loved one's reaction and translate it to others who might be present and interested. 

2.   Plan ahead. If your loved one tires easily or is vulnerable to over-stimulation and confusion, limit the number of people, activities they are involved in and the length of time they are included. The noise and confusion of a large family gathering can lead to irritability, exhaustion, and frustration for YOU.

Since you are the "usual" caregiver, you might want to try to assign another person to look after your loved one in order to give them a "fresh look" at what is taking place. This will give you a break, as well as, aid in getting another person to know the loved one better!

3.   Unfamiliar Surroundings. If the gathering is in a place unfamiliar to an older person or person with a cognitive impairment, be aware that they may feel lost and act out. If mobility is an issue, remove slippery throw rugs and other items that could present barriers to someone with balance problems or who has difficulty walking.

4.   Avoid embarrassing moments. Try to avoid making comments and warn others to not make comments that could inadvertently embarrass your loved one who may be experiencing short-term memory loss and other problems. If cognitive issues cause your loved one to forget a recent conversation, for example, don't make it worse by saying, "Don't you remember?"

5.   Create new memories.  Add something new to the holiday celebration, or volunteer for your family to help others. Enjoy activities that are free, such as taking a drive to look at holiday decorations, or window-shopping at the mall or along a festive downtown street.

6.   Be inclusive. Involve everyone in holiday meal preparation, breaking down tasks to include the youngest and oldest family members. Loved ones with physical limitations can still be included in kitchen activities by asking them to do a simple, helpful task, like greasing cooking pans, peeling vegetables, folding napkins or arranging flowers.

7.   Reach out. Social connectedness is especially important at holiday times. Loneliness is a difficult emotion for anyone. Recent research with older people and people with disabilities has documented that loneliness is associated with major depression and with suicidal thoughts and impulses.

8.   Keep on the sunny side. Seasonal affective disorder (SAD) or winter depression is an illness that can be provoked by reductions in sunlight during the short days of winter. It is important for people confined indoors, especially those at risk for winter depression, to make time for activities that will increase exposure to daylight.

9.   Monitor medications and alcohol. Be sure to help your loved one adhere to their regular schedule of medications during the frenzy of the holidays. Also, pay attention to their alcohol consumption (if allowed) during holiday parties and family gatherings. Alcohol can provoke inappropriate behavior or interfere with medications.

 

So, with all the hustle and bustle of the season, just remember to be sensitive, loving, and plan ahead."


HAPPY HOLIDAYS!!!!!!

-Ron