Archive for September 2012

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A Resource for You: The Alzheimer’s Association Website

Friday, September 28th, 2012

The Alzheimer’s Association, the leading voluntary health organization in Alzheimer’s care, support and research, has a wealth of helpful information for you on its web site (www.Alz.org). Check out the following parts of the web site that are relevant to caregiver stress:

1. Caregiver Stress Checklist and Resources (www.alz.org/stresscheck/): This is an 8-question quiz to help you evaluate your stress level. For each symptom you answer “yes” to, the site directs you to helpful resources tailored specifically to that symptom.

Just a few of the 19 resources are: a Respite Care Guide, Ways to Be a Healthier Caregiver, Talking to Kids and Teens about Alzheimer’s, Grief and Loss, and Telling Others about an Alzheimer’s Diagnosis.

2. Coping (www.alz.org/living_with_alzheimers_coping.asp): This section explains some common physical and emotional changes experienced by Alzheimer’s caregivers and ways to cope. It also has brief articles about managing the holidays and caregiver depression.

3. Online Community (www.alz.org/living_with_alzheimers_message_boards_lwa.asp): The Online Community has more than a dozen Message Board Forums with over 14,000 registered members. One of the forums’ most important benefits is simply letting caregivers share their experiences with others in the same situation.

A few of the Forum topics of particular relevance for caregivers are: Caregiver’s Forum, Spouse/Partner Caregiver Forum, Caregivers Who Have Lost Their Loved Ones, and Success Stories.

 

Come Back Early Today Wins a Fourth Award!

Tuesday, September 25th, 2012

Come Back Early Today has just won a fourth award. It is a finalist in the Indie Excellence Awards, for independently published books. This award is added to the list of three other awards: The Santa Fe Writers Project Literary Awards, The Eric Hoffer Awards (for first-time authors), and the Peoples Choice awards.

When I wrote the book I didn’t expect to win anything, so this is very gratifying!

 

Hospice Care for People With Dementia

Saturday, September 22nd, 2012

It’s Not Just for Cancer Patients: When we think of hospice care we often associate it with cancer patients, but it’s also valuable for advanced stage Alzheimer’s patients. In that stage the person is unable to walk, dress or bathe without help; has trouble controlling urine and/or bowel functions; and only rarely speaks meaningful sentences.

More Specific Signs that You Should Consider Hospice Care: According to Gregg Warshaw, MD, Director of Geriatric Medicine at the University of Cincinnati and Past President of the American Geriatric Society, if your loved one with advanced Alzheimer’s is exhibiting any of the following symptoms, it’s time to talk to his or her doctor about considering hospice care:

1. Two or more episodes of pneumonia or other serious infections during the past 6-months

2. Difficulty eating and swallowing, even with feeding help, that results in weight loss of 10% or more over the preceding 6 months

3. One or more skin pressure ulcers that are not healing

Although starting hospice care for a loved one is a somber and painful experience, just remember it will help both you and your loved one have the highest possible quality of life during the precious time that is left.

Where to Find Additional Information: The Hospice Foundation of America is an excellent source for more information on this topic.

 

 

Overcoming Family Strife When You’re the Primary Caregiver

Wednesday, September 19th, 2012

Having a loved one with Alzheimer’s can create tremendous stress in families. In families where there is generally good will, conflicts can typically be worked through for the common good. However, in families where people didn’t get along well before the diagnosis, it can create nightmares, especially for the primary caregiver.

The situation can become worse if some family members live out of town and only see the loved one for short, infrequent visits. They just don’t have the opportunity to witness the severity and frequency of demented behaviors you deal with every day.

You may find you’re being criticized unfairly for the care you’re providing even though you’re doing a heroic job and making major sacrifices in your personal life to do so. This can lead to bitterness and create extreme disharmony in the family.

Here are a few things you can try to reduce the friction:

1) Be Patient and Understand Where They’re Coming from: Try to put yourself in the other person’s shoes and understand why they lack knowledge of the situation. If you can stay calm you’ll have a better chance of decreasing stressful interactions.

2) Educate Others about the Patient’s Condition: Make very detailed lists of the patient’s dementia behaviors and share them with family members. Remember, they’ve never seen many of the things you see on a daily basis. Update these lists and share them frequently.

3) Have Others Care for the Patient for a While: The best way to let other family members understand the loved one’s condition is to have them take care of the patient for a while. Afterwards you may find you’re being criticized less and appreciated more.

 

 

The Caregivers Bill of Rights

Sunday, September 16th, 2012

I have the right:

1. To take care of myself. Caregiving is not an act of selfishness. It will give me the capability of taking better care of my loved one.

2. To seek help from others even though my loved ones may object. Only I can recognize the limits of my endurance and strength.

3. To maintain facets of my life that do not include the person I care for, just as I would if he or she were healthy. I know that I do everything that I reasonably can for this person, and I have the right to do some things just for myself.

4. To get angry, be depressed, and express other difficult feelings occasionally.

5. To reject any attempts by my loved one (either conscious or unconscious) to manipulate me through guilt, and/or depression.

6. To receive consideration, affection, forgiveness, and acceptance for what I do, from my loved ones, for as long as I offer these qualities in return.

7. To take pride in what I am accomplishing and to applaud the courage it has sometimes taken to meet the needs of my loved one.

8. To protect my individuality and my right to make a life for myself that will sustain me in the time when my loved one no longer needs my full-time help.

9. To expect and demand that as new strides are made in finding resources to aid physically- and mentally-impaired persons in our country, similar strides will be made towards aiding and supporting caregivers.

This Bill of Rights has been circulating on the internet for some time and is attributed to various persons on different sites. This version is taken from www.caregivers/utah.gov, where it is attributed to Jo Horne.

10 Ways to Be a Healthier Caregiver

Wednesday, September 12th, 2012

In my last post I listed ten signs of caregiver stress. Today I’m listing ten ways to address this stress and be a healthier caregiver, taken from the Alzheimer’s Association Website – www.Alz.org.

Please visit this site for a PDF brochure that contains far more detailed information about each of the ten items below. It also has a wallet card with the symptoms of stress so you can do a daily stress checkup. The other side of the card has the Alzheimer’s Association phone number to call for reliable information and support. (1-800-272-3900)

Ten Ways to Be a Healthier Caregiver

1. Understand what’s going on as soon as possible.

2. Know what community resources are available to you.

3. Become an educated caregiver.

4. Get help.

5. Take care of yourself.

6. Manage your level of stress.

7. Accept changes as they occur.

8. Make legal and financial plans.

9. Give yourself credit, not guilt.

10. Visit your doctor regularly.

Getting a person with Alzheimer’s to stop driving

Sunday, September 9th, 2012

Getting a loved one with Alzheimer’s disease to stop driving is one of the most difficult tasks you will ever have to accomplish.

Clear Signs that the Person Should Stop Driving: Although there are many signs that a person should stop driving, the Alzheimer’s Association lists five primary ones:

  1. Forgetting how to locate familiar places
  2. Failing to observe traffic signs
  3. Making slow or poor decisions in traffic
  4. Driving at an inappropriate speed
  5. Becoming angry or confused while driving

Six Tips for Getting the Person to Stop Driving:

  1. Have their primary care provider or attorney talk to them.
  2. Have another family member or friend they respect talk to them.
  3. Take away the car keys
  4. Mechanically disable the car.
  5. Park the car around the corner or elsewhere out of their site.
  6. Report them to the state Department (or Bureau) of Motor Vehicles, which in most states will make them take a driving test. If they fail, their license will be revoked.

When they stop driving you will, of course, need to arrange transportation for them. You can do this through a combination of driving them yourself, arranging for others to drive them, and having them use taxis, buses, senior transportation services, delivery services, etc.

Getting your loved one with Alzheimer’s to stop driving will not be a simple task, but remember – it’s your responsibility to get him or her out from behind the wheel before someone gets hurt.

 

Alzheimer’s Caregivers: How Friends and Family Can Help You

Tuesday, September 4th, 2012

How Family Members & Friends Can Help Reduce Our Stress

So often our family members and friends don’t know what they could do to help relieve our caregiver stress.  Sometimes even we don’t know. And even if we do have some concrete ideas, we’re often hesitant to ask for help.

Can you think of some things other people could do that would help relieve your stress? Would you be willing to ask for that help?

Here are just a few things others can do:

  •  Stay with your loved one for a few hours on a regular basis so you can have time to yourself to go to a movie, browse in a bookstore, or do whatever else relaxes you
  • Listen to you and try to understand
  • Ask you what they can do to help and then do it
  • Perform some routine household chores for you
  • Do some outside errands for you
  • Check in with you regularly and ask how you are
  • Take your loved one to doctor’s appointments
  • Take your loved one out for a long drive occasionally to give you some alone time
  • Visit local nursing homes and/or assisted living facilities and do research on them (if you’re looking for a facility for your loved one)

What else can you think of that others can do to help relieve your stress? Are there other strategies you personally have found helpful?

When Grandma Has Alzheimer’s: Helping Your Child Cope

Saturday, September 1st, 2012

Children with grandparents who have Alzheimer’s may become afraid, confused, sad, angry, frustrated, guilty, worried, and/or embarrassed.

Children typically fear:

1. The grandparent doesn’t love them anymore
2. It’s somehow their fault
3. They may catch the disease
4. Their parent(s) may get it

A child who is having a hard time might do one of the following:
1. Withdraw from or lose patience with the person
2. Do poorly in school
3. Express physical pain, like a stomachache or headache
4. Spend more time away from home
5. Stop inviting friends to the home

How You Can Help Your Child Cope:

1. Explain the disease in simple terms your child can understand.

2. Encourage your child to ask questions. Answer them honestly and simply.

3. Set aside time to be together when your child can feel safe to talk about the situation.

4. Have your child make a box filled with items that will remind them of special times spent with the grandparent in the past.

5. Read with your child books written especially for children on Alzheimer’s. The Alzheimer’s Association’s Web site has an annotated list of such books.

6. Encourage your child to spend time with the grandparent. The Alzheimer’s Association Web site has a list of 101 ways to spend time with a person with Alzheimer’s disease.

7. In the later stages of the disease if your child strongly resists spending time with the grandparent it’s probably wise not to force the issue.

Stressful Feelings We’ve Had

Saturday, September 1st, 2012

What was the single most stressful concrete problem you had to solve as a caregiver for your loved one with Alzheimer’s Disease?  Was it taking away the car keys? Was it convincing your loved one to move to an assisted living facility? Dealing with long-distance family members who weren’t around often enough to see the signs and understand how serious the situation actually was? Or was it engaging hospice services or making end-of-life care decisions?

For me it was finding a way to get Ed into a long-term care facility. This proud and fiercely independent man was adamantly opposed to moving to any institution. I begged, pleaded, cajoled, even threatened him – all to no avail. Then I made plans to admit him against his will, but found I didn’t have the courage to follow through. Finally, one day he was so confused he forgot about his opposition to moving, and I rushed him to the facility before he could change his mind. For me, this was the most stressful problem I faced during the entire seven-year period of caring for him.

Tell us about yours and how you solved it.