Holidays and Alzheimer's Families – Part II

The holidays are a time when family and friends often come together. But for families living with Alzheimer's and other dementias, the holidays can be challenging. Take a deep breath. With some planning and adjusted expectations, your celebrations can still be happy, memorable occasions.

·   Involve the person with dementia

·   Adapt gift giving

·   When the person lives in a care facility

Involve the person with dementia

Build on past traditions and memories.

Focus on activities that are meaningful to the person with dementia. Your family member may find comfort in singing old holiday songs or looking through old photo albums.

Involve the person in holiday preparation.

As the person's abilities allow, invite him or her to help you prepare food, wrap packages, help decorate or set the table. This could be as simple as having the person measure an ingredient or hand decorations to you as you put them up. (Be careful with decoration choices. Blinking lights may confuse or scare a person with dementia, and decorations that look like food could be mistaken as edible.)

Maintain a normal routine.

Sticking to the person's normal routine will help keep the holidays from becoming disruptive or confusing. Plan time for breaks and rest.

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Adapt gift giving

Reduce post-holiday stress.

Arrange for respite care so you can enjoy a movie or lunch with a friend.

Encourage safe and useful gifts for the person with dementia.

Diminishing capacity may make some gifts unusable or even dangerous to a person with dementia. If someone asks for gift ideas, suggest items the person with dementia needs or can easily enjoy. Ideas include: an identification bracelet (available through MedicAlert® + Alzheimer's Association Safe Return®), comfortable clothing, audiotapes of favorite music, videos and photo albums.

Put respite care on your wish list.

If friends or family ask what you want for a gift, suggest a gift certificate or something that will help you take care of yourself as you care for your loved one. This could be a cleaning or household chore service, an offer to provide respite care, or something that provides you with a bit of rest and relaxation.

When the person lives in a care facility

A holiday is still a holiday whether it is celebrated at home or at a care facility. Here are some ways to celebrate together:

Consider joining your loved one in any facility-planned holiday activities

Bring a favorite holiday food to share

Sing holiday songs and ask if other residents can join in

Read a favorite holiday story or poem out loud

Copied from: http://www.alz.org/care/alzheimers-dementia-holidays.asp?s_oo=zGnEm5Dnou4aWIrvOQSsOQ

Holidays and Alzheimer's Families Part 1

The holidays are a time when family and friends often come together. But for families living with Alzheimer's and other dementias, the holidays can be challenging. Take a deep breath. With some planning and adjusted expectations, your celebrations can still be happy, memorable occasions.

·   Familiarize others with the situation

·   Adjust expectations

Familiarize others with the situation

The holidays are full of emotions, so it can help to let guests know what to expect before they arrive.

If the person is in the early stages of Alzheimer's, relatives and friends might not notice any changes. But the person with dementia may have trouble following conversation or tend to repeat him- or herself.  Family can help with communication by being patient, not interrupting or correcting, and giving the person time to finish his or her thoughts.

If the person is in the middle or late stages of Alzheimer's, there may be significant changes in cognitive abilities since the last time an out-of-town friend or relative has visited.  These changes can be hard to accept. Make sure visitors understand that changes in behavior and memory are caused by the disease and not the person.  

You may find this easier to share changes in a letter or email that can be sent to multiple recipients. Here are some examples:

 "I'm writing to let you know how things are going at our house. While we're looking forward to your visit, we thought it might be helpful if you understood our current situation before you arrive.

"You may notice that ___ has changed since you last saw him/her. Among the changes you may notice are ___.

"Because ___ sometimes has problems remembering and thinking clearly, his/her behavior is a little unpredictable.

"Please understand that ___ may not remember who you are and may confuse you with someone else. Please don't feel offended by this. He/she appreciates your being with us and so do I."

Adjust expectations

Call a meeting to discuss upcoming plans.

The stress of caregiving responsibilities layered with holiday traditions can take a toll. Invite family and friends to a face-to-face meeting, or if geography is an obstacle, set up a telephone conference call. Make sure everyone understands your caregiving situation and has realistic expectations about what you can do. Be honest about any limitations or needs, such as keeping a daily routine.

Be good to yourself.

Give yourself permission to do only what you can reasonably manage. If you've always invited 15 to 20 people to your home, consider paring it down to a few guests for a simple meal. Let others contribute. Have a potluck dinner or ask them to host at their home. You also may want to consider breaking large gatherings up into smaller visits of two or three people at a time to keep the person with Alzheimer's and yourself from getting overtired.

Do a variation on a theme.

If evening confusion and agitation are a problem, consider changing a holiday dinner into a holiday lunch or brunch. If you do keep the celebration at night, keep the room well-lit and try to avoid any known triggers.

Copied from: http://www.alz.org/care/alzheimers-dementia-holidays.asp?s_oo=zGnEm5Dnou4aWIrvOQSsOQ

10 tips for family caregivers:

1. Seek support from other caregivers. You are not alone!
   
2. Take care of your own health so you can be strong enough to take care of your loved one.
   
3. Accept offers of help and suggest specific things people can do to help you.
   
4. Learn how to communicate effectively with doctors.
   
5. Caregiving is hard work so take respite breaks often.
   
6. Watch out for signs of depression and don't delay in getting professional help when you need it.
   
7. Be open to new technologies to help you care for your loved one.
   
8. Organize medical information so it's up to date and easy to find.
   
9. Make sure legal documents are in order.
   
10. Give yourself credit for doing the best you can in one of the toughest jobs there is!

Considerations before changing your life to become a caregiver:

• Evidence shows caregivers experience considerable health issues as a result of their focus on caring for others
• Think twice about leaving your job to provide care as it will impact your lifetime wealth and future employment prospects.
• Check with your employer to determine what benefits are offered, and how you would replace them, should you curtail your employment.
• Take stock of what you have and your expenses for caregiving.
• Look into public benefits.
• Become knowledgeable about the government programs: Medicare and Medicaid.
• Calculate what it would cost to keep your loved one at home.
• Consider enlisting the services of a Geriatric Care Manager.
• Be aware of possible elder financial abuse and take precautions.
• Discuss your loved one’s legal, financial, and medical  wishes.
• Create a budget for yourself, for your future retirement expenses
• A good starting point: Consider what portion of your income you’ll need to maintain your current lifestyle after retirement — experts typically place it at about 80% of current income as a starting point. Factor in unexpected costs such as health care and inflation.

10 Statistics on Caregivers:

Did you know?

1. The proportion of adult children providing personal care and/or financial assistance to a parent has more than tripled over the past 15 years.
2. Almost 40% of all U.S. workers are more involved with caring for a parent than a child.
3. Studies estimate 2 out of 3 informal caregivers are women, many of whom are middle-aged mothers with children or adult children living in their households
4. Today, the average American woman can expect to spend 18 years caring for an older family member, compared to 17 for her children.
5. In 2014, the 15.7 million family and other unpaid caregivers of people with Alzheimer’s disease and other dementias provided an estimated 17.9 billion hours of unpaid care.
6. This number represents an average of:
   21.9 hours of care per caregiver per week, or
   1,139 hours of care per caregiver per year
7. 80% of care provided in the community is provided by unpaid caregivers (most often family members), while fewer than 10 percent of older adults receive all of their care from paid caregivers.
8. For women, the total cost impact of caregiving equals $324,044.
   For men, the average total impact equals $283,716.
9. These numbers reflect:
   Wages lost while not working — typically for about five years
   Lower wages after returning to the workforce with rusty skills.
10. When foregone pension and Social Security benefits are counted, the out-of-pocket losses roughly double

Joanne Foss is a Member of the Class of 2015 Champions for The Alzheimer's Association!

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