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Author Archive | Kathileen Wagner

Make the Holiday Season Stress Free

Tips for Celebrating the Holidays with the Person with Dementia

The Joy of the Holidays

Whether you grew up Jewish, like myself, Christian or Muslim, we all have one thing in common – family get-togethers during the holidays. Usually these get-togethers involve a lot of food and, at times, gift exchanges. But no matter what the holiday or the tradition is, the focal point is always on the ‘get-together’ part. This once or twice-a-year event is when family members, who may rarely see one another, put aside all family dynamics and come together to celebrate holiday traditions. The bigger the family, the bigger the event: a big table, kids running around, multiple loud conversations or, as it may feel to the person who lives with dementia,

“A lot of people I don’t know who say a lot of things I don’t understand”.

If you have a loved one who lives with dementia, especially if they still live at home with you or with another family member (spouse, adult child), I’m sure the dilemma every holiday is not new to you: Should I bring my mom to Rosh Hashanah dinner?, How can I help my husband enjoy himself at the Christmas dinner party?

When you have a loved one who lives with dementia, holidays can bring up many emotions and memories of times gone by: when grandma cooked our favorite food during Eid al-Fitr,  when grandpa lead the Passover Sadder, when mom made those beautiful stockings.  But while everyone else may enjoy the social event, grandma may become anxious and restless looking around the unfamiliar room full of unfamiliar faces.

Five Tips to Help the Person with Dementia Enjoy the Holiday Season
When the Person Lives at Home

1.Communicate with the family

You know your loved one best, but not everyone in the extended family may be aware that they have dementia or to what extent.

An email sent to everyone with the important information about your loved one can help prevent many potentially stressful situations. Important information to share may be:

  • How best to connect with the person with dementia: call them by their name, introduce yourself by name and your relationship to them (if you sense you look unfamiliar to them) and offer a warm hug.
  • How to have a conversation: don’t ask questions that start with “do you remember…?”. instead tell the person something about you or your life or make a nice comment about the person.
  • Keep the person involved: everyone should take turns spending a few minutes with the person to make sure they are included.
  • Keep it short and sweet: don’t overwhelm the person with too much information or too much commotion.
  • If a gift exchanged is planned: share gift ideas for that person.

2.Celebrate early in the day

As many older people get tired and sleepy later in the day, the person with dementia may get more confused and/or anxious in the late afternoon or early evening hours, especially as it gets darker. Start the celebration earlier in the day when there is still light outside.

3.Keep it small, simple and familiar

A familiar environment – familiar faces, familiar dishes, familiar smells – will make the event easier to handle. Invite a small group of close family members and have the celebration in the same house where the person lives to keep it familiar. Cook the same traditional dishes that you cook every year.
Keeping it the same as in the past will decrease the sense of confusion that is overwhelming for the person with dementia.

A small group of family member will help decrease feeling overwhelmed or anxious during the holidays

 

4. Attend to the important needs

Food and going to the bathroom are the most important things that need attention.
Make sure the person goes to the bathroom before everyone arrives and before leaving the event. Arrange to have the person sit where it is easy to get up from the table and go to the bathroom. Escort the person to the bathroom every two hours.
Arrange for a plate of food that is easy to self-feed: cutting anything that needs to be cut, avoiding food that may be challenging to eat with a fork, such as peas or rice (or provide a spoon) or that can spill, such as soup (or put it in a cup and let it cool a little).
If you need to arrange for an adult bib to avoid staining clothes, get one that is made from a festive holiday fabric (can easily get those online).

5. Be prepared to change your plans

If the person who lives with dementia gets restless or anxious earlier than expected, be prepared to either leave early if the celebration is not in their home, or to move them to the bedroom or another quiet room.

The Spirit of the Holiday is Everywhere

Be Attentive

Just because your loved one may live in a memory care facility, it doesn’t mean they cannot (or should not) enjoy the holiday with family. However, as their dementia progresses, you will need to be attentive to their ability to participate and enjoy the family get-together. They may be at a stage where bringing them to the family event, while using the above tips, will allow them to enjoy the celebration with everyone. But time may come when leaving the memory care community, their now familiar environment, will overwhelm them to the extent that they won’t be able to enjoy the celebration. Furthermore, it may mean that you’ll need to give them your full attention to the point that it will affect your ability to enjoy it, too. When this is the case, you can still enjoy the festivity of the holiday, just in a different way.

Living with memory loss doesn’t mean you lose your holiday spirit

 

Three Tips to Help the Person with Dementia Enjoy the Holiday Season
When the Person Lives in a Memory Care Community

1.Bring the spirit of the holiday to their home

Decorate their room with traditional holiday decorations that are familiar to them. Make it a joint activity, even if all they do is sit and watch you hanging the decorations around their room.

2.Keep the gift giving tradition

Help them think of gifts for the grandkids and wrap them together. Arrange for the grandkids to come for a visit and have them open gifts together. If the grandkids live far away, ask their parents to take pictures of them opening the gifts and share with the grandparent or, if possible, arrange for live video chat.

3.Take part in their celebration

The memory care community will have their own celebration around the holidays. Arrange for the closest family members to attend that celebration, whether it is a special dinner or holiday music sing-along.

Make this holiday season meaningful and enriching for both you and your loved one who lives with dementia. Keep the family tradition and help everyone feel part of the family.

 

Ronit Cohen is Senior Living Advisor and owner of A Home to Fit You.  Ronit is passionate about educating families on the best ways to support a loved one by advocating for seniors to identify their care needs and personal wishes while navigating the journey to find their best living solution as well as support her clients through the transition and beyond.

Caring For The Caregiver

Caring for the Caregiver

Take time to care for yourself!

Caring For The Caregiver – “How to Overcome Stressors”

Caregiving for a loved one is one of the highest stressors for any person. In order to ensure that one maintains a balance while caregiving, you need to know the signs of stress and learn ways to advocate for yourself. First, in order to have the “tools” to help you should become aware of the Caregiver Bill of Rights. The Caregiver Bill of Rights was designed by a group of professionals to help a person identify what needs they might have and become more aware of how to take care of themselves. Here is the Caregiver Bill of Rights-

As a caregiver, I have the right……

  • To take care of myself-to rest when I’m tired, to eat well, and to take breaks from caregiving when I need them.
  • To recognize the limits of my own endurance and strength.
  • To seek help from family, involved parties, and the community at large.
  • To socialize, maintain my interests, and to do the things I enjoy.
  • To acknowledge my feelings, whether positive or negative, including frustration, anger, and depression; and to express them constructively.
  • To take pride in the valuable work I do, and applaud the courage and inventiveness it takes to meet the needs of my care recipient.

The second “tool” a caregiver needs is to know about is how to advocate their own well-being and this is contained in the Principles of Caregiver Self-Advocacy. They include the following four principles:

 1.     Choose to take charge of your life.

2.     Honor, value, and love yourself.

3.     Seek, accept, and at times request assistance.

4.     Stand-up and be counted – “toot your own horn.”

 

After you are aware of the importance of helping yourself you need to understand caregiver stress and how it manifests itself in one’s life.

One of the biggest PROBLEMS for a caregiver is that of STRESS!  IT IS ALWAYS SEEMS TO BE CHASING YOU.

Wth stress there are both positive and negative types, knowing what they are can help a person understand their strengths and weaknesses. Here is a comparison of the two – 

Positive vs. Negative Stress

 

POSITIVE STRESS                                             Negative Stress

– Going on a Vacation                                               – Divorce

– New Job                                                                   – Job Loss

– New Marriage                                                         – Illness

– Meeting a deadline                                                -Trauma                                                   

– Winning the lottery                                                

– New baby

– Moving to a new home

So now that we have identified the good and the bad types of stress, we need to know what contributes to or causes stress. Stress is anything that puts an extra load on the body from things such as: 

  • Drugs (over-the-counter, legal or illegal), and alcohol abuse
  • Chemicals/Toxins
  • Infections
  • Allergies (food and environmental)
  • Surgery/Injury
  • Noise
  • Excessive fatigue/loss of sleep/insomnia
  • Psychological upsets/Resentments/Hate/Worry
  • Family Issues
  • Lack of enough time in the day
  • Loss of emotional support, income, job, housing, etc.
  • Burnout from job, or other issues like caregiving.

As caregivers, we sometimes experience physiological changes that manifest in our bodies to try to let us know we are stressed, and tell us to take care of ourselves. However, many people dismiss the signs until they become chronic and reach a critical point where they are no longer able to cope with the caregiving situation. Thus, knowing what some of the early symptoms of stress are can be very beneficial. Here is a list of just a few symptoms – rapid heartbeat, shortness of breath, sweating, headaches, irritability/mood swings, cravings for high sugar/high fat, and muscle tension. It is important to note that these can also be signs of other critical health conditions and one should be checked by a health care professional whenever you experience one or more of these occurrences.

 If you listen to a caregiver and their concerns you may hear caregiver stress in what they say. Here are just a few examples of caregiver stress expressed by family as well as paid caregivers: 

I can’t tell you how stressed I am caring for my parents, working at a job and caring for my family of three that I have sole support. I have no life outside of work and home – there just isn’t enough time in the day.” 

“ Caregiving of my hospice clients in the last two months has taken its toll on me. I lost four of them and I liked them so much. Where do I go to grieve, or who do I talk with?” 

“I love my clients so much that when I am called upon for more work I can’t say no. I wonder why I am getting sick all the time.”

 When one is overly stressed due to the multitude of caregiver demands they can often experience “burnout.” Burnout is defined as the intensive progression of your many caregiver stresses – physical, emotional, financial, psychological, and social – to the point that you feel totally “burned out.”

 So here is a list of some of the manifestations of caregiver burnout –

  • Feeling increased stress and anxiety over even minor things
  • Despairingly blaming yourself for your inability to meet unrealistic demands
  • Feeling everything is out of control, and you don’t see a way out
  • Loss of energy and constant feeling of exhaustion, emotionally and physically
  • Feeling helpless, hopeless, or on the verge of tears often
  • Overreacting to minor things and snapping much too quickly
  • Frequent indigestion, loss of appetite, more headaches and body aches
  • Significant weight gain or loss, or change in eating patterns
  • Loss of interest in your appearance and grooming
  • Change in sleep patterns or sleeplessness
  • Decreased productivity or lack of interest in work
  • Scattered thinking, inability to concentrate, or trapped in circular thinking
  • Feeling increasingly resentful, angry, bitter, or blaming yourself or others
  • Loss of interest in favorite activities and hobbies
  • Withdrawal from anything social, avoidance of friends and family
  • Feeling it takes too much energy to interact with others and do things
  • Inability to relax, feeling there is always something you must be doing
  • Engaging in nervous habits such as binging, chain smoking, drinking
  • Feeling you want to hurt yourself or your charge
  • Having increasing thoughts of death
  • Increasing use of medications for anxiety, depression, sleep, stomach
  • Feeling physically run down and getting sick much more often

 If you are experiencing any of these symptoms/issues here are some tips to help you deal with the burnout and stress.

  • Make sure you set realistic goals and don’t try to do too much.
  • Ask for help – Family, Friends, Pastor/Priest, Employee Assistance Program, and Counselor.
  • Set priorities for each day. Make a list
  • Do not become isolated. Stay connected with family and friends.
  • Incorporate exercise into your daily routine.
  • Maintain good nutrition.
  • Develop strategies for coping.
  • Join a support group.

Lastly, it is important to know that You Are Not Alone! According to the National Family Caregivers Association more than 65 million people, 29% of the U.S. population, provide care for a chronically ill, disabled or aged family member or friend during any given year and spend an average of 20 hours per week providing care for their loved one.

For more in-depth information on caregiver issues you can find information on the Caregiver Action Network.