“I Can’t Do This!”

Caregiver Stress

Caregiver Stress

By Theresa Bayman, Program Director Coastal Region

Recently, a member of one of my support groups (with whom I have become very close),  reached her caregiver “breaking point.” Most, if not all caregivers, find themselves at this point at least once throughout their experience. This particular caregiver is a retired nurse – which you might think would give her a leg-up when it comes to care-giving for a loved one at home – but you’d be wrong about that.

When it comes to caring for someone we love, especially a parent or a spouse, the playing field is leveled.  Dementia care-giving is unlike most other care-giving experiences because of the ever-changing needs and limitations of the person receiving care.  With many illnesses, a caregiver can ask the patient “Are you in pain?; Are you hungry?; Would you like some company?”  With a dementia diagnosis, caregivers do not always have the benefit of verbal answers and cues. Instead, they learn to read body language and anticipate needs based on other clues and symptoms. Caregivers are part nurse, part detective, part cook, scheduler, transporter, husband/wife/daughter/son, etc. In short – mostly superhero!

Meeting the ever-changing needs of a loved one with dementia requires continuous evolution of the caregiver(s) themselves. Often times family dynamics/roles must shift in addition to changing perspectives, reactions, the way we make decisions and spend our time – just to name a few. It’s a huge adjustment – even for people like my dear friend who has been a professional caregiver for many years. She came to me asking for help, saying “I can’t do this” but the truth of the matter is just that you can’t do it aloneRecognizing the need for help and support is the first step to becoming a truly successful caregiver. Help can come in many forms – church members, nurses, home health agencies, adult day care, hospice, facility settings, good friends who know how to listen, family that is willing to step up to the plate and take on new roles, friends who can bring meals or keep you in their prayers, support group meetings, Alzheimer’s Association counselors and staff and many, many other ways. These options are out there waiting for you because care-giving just isn’t a one-person job. You can do it – and you don’t have to do it alone! Counselors are standing by on our helpline 24/7 – 800-272-3900

Can a Person with Dementia Live or Stay Alone?

 

There are many things to consider when thinking about whether or not a loved one needs to move or have in-home care, etc. Most of us want our loved ones to experience the most independence possible for as long as possible – but safely. It can be difficult at times to balance independence and safety and a careful evaluation is appropriate (and perhaps frequent re-evaluations as time progresses) to help make these types of difficult decisions.

The below questions can assist with identifying some safety concerns. Some of these items may only apply to individuals who are currently living by themselves rather than those who may be left alone for a short period of time while a caregiver is out. These questions are only a guide but if there are one or more problems noted in each category, then that could be an indicator that more supervision or a change in living arrangements is needed. For more information on home safety or our Medic-Alert/Safe Return program or for any other questions, call 800-272-3900 to speak with a counselor. More information on home safety is also available online at: http://alz.org/care/alzheimers-dementia-home-safety.asp

 

Safety Concerns

Does Your loved one: 

  • Have driving accidents, even minor ones?
  • Get lost driving or walking?
  • Burn pots on the stove or forget to turn off the burners or oven?
  • Forget to extinguish cigarettes?
  • Let strangers into the house or lock him/herself out of the house?
  • Forget to secure the house at night/when going out?
  • Demonstrate mood swings and suspicious/paranoid behaviors?
  • Know there are firearms or dangerous tools in the house and how to use them safely?
  • Know how to operate the thermostat and judge temperature correctly?
  • Have a recent history of being a victim of scams or crimes or any nature?

Personal Care

Is your loved one able to: 

  • Eat well-balanced meals and drink plenty of fluids?
  • Dress appropriately for the weather?
  • Safely bathe and use the toilet independently?

Other Tasks

Is your loved on able to: 

  • Keep up with the housekeeping duties and home repairs?
  • Pay bills on time, balance checkbook and use credit cards appropriately?
  • Shop for, store and cook food safely and correctly?
  • Use the phone and remember important phone numbers or where to find them?
  • Take medication on time and in the correct doses?
  • Recite their current address and phone number?

 

20th Anniversary J. Paul Austin Golf Tournament a Success!

On Monday June 23rd, Sam Austin hosted the 20th Anniversary J. Paul Austin Golf Tournament at Peachtree Golf Club in Atlanta. The event, which is named in honor of his father who suffered from Alzheimer’s Disease, has been a wonderful success through the years in both raising funds and awareness for the Alzheimer’s Association. This year was no exception, raising $185,550 (see bottom photo) for the Alzheimer’s Association. Though it threatened to storm on several occasions, the golfers waited it out and finished up their rounds in time to enjoy a prize ceremony and the presentation of the giant check! We are so grateful to all who came out to support this effort – golfers, volunteers and sponsors alike. THANK YOU for making this event possible!

20th Anniversary Program

20th Anniversary Program

Staff & Volunteers help with registration

Staff & Volunteers help with registration

 

Shirts for the golfers and 1st, 2nd and 3rd place prizes.

Shirts for the golfers and 1st, 2nd and 3rd place prizes.

 

Sponsors

Sponsors

 

Carts lined up ready to go!

Carts lined up ready to go!

 

Golfers get warmed up

Golfers get warmed up

 

Sam Austin welcomes the golfers to the tournament

Sam Austin welcomes the golfers to the tournament

 

And they're off!!

And they’re off!!

 

Peachtree course

A beautiful day on a beautiful course for a great cause!

A beautiful day on a beautiful course for a great cause!

 

The money raised!!

The money raised!!

Getting a Grip on Anger

Grrrrr!

 

It is natural for caregivers of people with dementia to become frustrated, even angry with the person that they love and are caring for. Therapists and veteran caregivers offer the following tips for dealing with those feelings:

  • Be Honest. Admit to yourself and to others that you are angry.
  • Remember that anger is not permanent. This too will pass. 
  • Try to identify specifically what bothers you.
  • Find a time and place to be alone. Scream, exercise, cry or meditate until you feel some release. 
  • Realize that no one is perfect.
  • When you feel you are about to explode, leave the scene until you feel calmer or have found a safe and healthy way to release your anger.
  • Try not to blame yourself or your loved one for the present situation – it is not what anyone wanted to have happen.
  • Let relatives or friends help with caregiving responsibilities – EVERY caregiver needs breaks.
  • Strive to live each day to the best of your ability.
  • Continue learning about how to deal with difficult behaviors and how to improve your communication. 

There are lots of resources available to help you deal with stress and anger:  Take our Caregiver Stress Check to check your stress level. Give us a call to find out about respite options in your area and support groups in your area – OR, call us if you think it would help just to talk. Call 24/7 at 800-272-3900. 

How to Have a Successful Family Meeting

Family Meetings

It takes a family to care for someone with Alzheimer’s, which is why it is important for everyone in the family to be on the same page. Here are a few tips for effective communication through family meetings:

  • Invite everyone who is going to be expected to help make and implement decisions. This includes the person with dementia if he/she can participate. Meet at a time and place convenient for everyone.
  • Meet before a crisis arises.  Diagnosis is a good time for planning.
  • Have Clear Goals.  Some questions to help formulate your goals might include: How can we provide our loved one with the needed care? What plans do we need to make for the future? How can we support the primary caregiver(s)?
  • Prepare. Have members gather needed information ahead of time: the doctor’s recommendations for care, information on financial resources, existing legal documents or a list of needed legal documents.
  • Agree to ground rules: 
  1. Appoint a leader to keep the discussion on track and someone to record decisions.
  2. Set a clear beginning and ending time for the discussion.
  3. Build in some “fun.” Serve snacks/food after business is completed.
  4. Avoid getting bogged down – you may need to make a list of questions to be addressed at a later date.
  5. Keep personal differences off of the table. Use a professional facilitator if you think it may help to avoid conflict.
  6. Allow time for difficult emotions; if family members are angry or distressed, take a break before making decisions.
  7. Encourage everyone to express his/her thoughts and feelings and be respectful of each other.
  • Decide who will do what by when. Make sure everyone has a role – set up clear lines of communication.

Remember – we are here to help however we can! Call us 24/7 at 800-272-3900.

Have You Had THE Conversation?

Difficult Conversations

If asked, most of us would say that it’s very important for our loved ones to know our end-of-life wishes.  However, many of us have not expressed our own wishes or had that conversation with those we love about theirs.

Pulitzer Prize winning journalist Ellen Goodman found herself in that situation at the end of her mother’s life.  “We talked about everything except one thing: how she wanted to live at the end of her life . . .  Once or twice when we heard about a relative or friend who was comatose or on a feeding tube, she would say, ‘If I’m like that, pull the plug.’ But, of course, when the time came there was no plug. In my mom’s last years of life, she was no longer able to decide what she wanted for dinner, let alone what she wanted for medical treatment. So the decisions fell to me. Another bone marrow biopsy? A spinal tap? Pain treatment? Antibiotics? I was faced with cascading decisions for which I was wholly unprepared. After all the years I had written about these issues, I was still blindsided by the inevitable.”

After her experience with her mom, Goodman co-founded The Conversation Project, a national campaign with this goal: “to make it easier to initiate conversations about dying, and to encourage people to talk now and as often as necessary so that their wishes are known when the time comes.”

All adults are encouraged to have these conversations.  And, it’s important to remember that persons with dementia are often still able to express their wishes when offered the opportunity.

Beginning these conversations can make the difference between a good death and a hard death.  We can also do much to unburden those we love from having to guess about our wishes.  Have you begun the conversation with those you love?

For some help beginning your conversations, see more at The Conversation Project website: www.http://theconversationproject.org.

For more information on Late Stage Care, please visit: http://alz.org/care/alzheimers-late-end-stage-caregiving.asp

Helping Children and Teens Understand Alzheimer’s Disease

K

When a member of the family has Alzheimer’s disease, everyone- including children and teens, are greatly affected. The impact depends on the relationship and closeness to the person with the disease.  It is extremely important to talk with children and teens about Alzheimer’s disease and to help them understand the disease process so that they can better cope.

Children and teens could be feeling any of the following emotions related to the diagnosis of a loved one with dementia: 

  • Sad about the changes in their loved one
  • Confused about the disease
  • Afraid of the behaviors
  • Embarrassed of the person
  • Jealous of the attention their loved one receives
  • Worried that they or their parents may develop the disease
  • Angry and frustrated
  • Guilty for getting angry with their loved ones

Common reaction from children and teens may include: 

  • Withdrawing from the loved one
  • Becoming Inpatient with the person with dementia
  • Performing poorly in school
  • Complaining of headaches or stomachaches
  • Verbalizing vague physical complaints
  • Spending time away from home
  • Not inviting friends to the home

Educating kids/teens about he disease is one of the best first steps to take. Encourage them to ask questions and communicate openly about their feelings. Offer comfort and support by letting them know their feelings are normal. Next, try offering kids ideas about ways they can interact with the person with dementia so that they can have purposeful and meaningful interactions and feel like they are helping. Some examples of activities kids can do with a loved one with dementia may include folding laundry, washing dishes, gardening, looking at old photographs, listening to music, dancing, reading a favorite book or doing an art activity.

There are many resources available to assist kids/teens in understanding dementia. The Alzheimer’s Association website has a whole section just for kids and teens with information and videos to help them understand the process. Find out more here: http://www.alz.org/living_with_alzheimers_just_for_kids_and_teens.asp

For additional resources on books, check out these reading lists from our Book Series on this blog:

Books for Children 

Books for Teens/Youth 

And of course, please call us anytime for more information/support on helping your family cope with dementia. 800-272-3900