Archive for December 2012

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Three Myths About Alzheimer’s Disease

Monday, December 31st, 2012

Myth 1: Memory loss is a natural part of aging. Reality: In the past people believed memory loss was a normal part of aging, often regarding even Alzheimer’s as natural age-related decline. Experts now recognize severe memory loss as a symptom of serious illness. Whether memory naturally declines to some extent is a research challenge still being addressed.

Myth 2: Alzheimer’s disease is not fatal. Reality: Alzheimer’s disease has no survivors. It destroys brain cells and causes memory changes, erratic behaviors and loss of body functions, and eventually leads to death.

Myth 3: Only older people can get Alzheimer’s. Reality: Alzheimer’s can strike people in their 50s, 40s or even 30s. This is called younger-onset Alzheimer’s. It’s estimated that there are as many as 200,000 people with Alzheimer’s in the US who are under age 65.

Does anybody out there have any other myths to debunk?

Adapted from: www.alz.org/alzheimers_disease_myths_about_alzheimers.asp

How I Accidentally Wrote a Caregiving Book

Saturday, December 29th, 2012

When I wrote Come Back Early Today, I wrote it mainly as a love story. However, most people who have reviewed the book have focused on its value to caregivers. The following review by Ann McHugh of Overland Park, KS, illustrates that point.

This book is a must read for caregivers of dementia patients! It provides great insight into the difficult path that Alzheimer’s patients and their caregivers must face, and it is intertwined with a beautiful love story. It made me laugh and it made me cry, all at the same time! I watched my mother descend into a similar journey with dementia, and I wish my family and I had read it while she was alive. It gave me a deeper understanding of my feelings, and the frustrations that my mother faced daily, as her mind simply deteriorated, seemingly before our eyes. It also put my mind at ease, in some
ways. I realized that, although these patients fret and worry a great deal, they are also capable of feeling joy. Marie Marley found a way to celebrate the joys of life, at any level of coherence, and capitalize on those moments. She found a way to improve the quality of her loved one’s life through those moments.

This book is informative and very supportive for caregivers. It put things in a new perspective for me. It still makes me sad to think of all the patients, caregivers and families who must cope with this cruel disease. It is difficult to watch the mind of our loved ones deteriorate, no matter how you look at it. But I feel more at peace after reading this book. I realize that many of the struggles we face as caregiver’s of patients with Alzheimer’s are OUR struggles. The patient truly lives moment to moment. I can’t recommend this book enough.

Alzheimer’s Caregivers: The Staggering Financial Value of Your Services

Wednesday, December 26th, 2012

Caregivers Everywhere: The financial value of your service has been estimated, and the numbers are shocking.

All Caregivers: In 2009, family caregivers for loved ones (with all medical conditions) provided care valued at $450 billion. That’s more than the total sales of some of the world’s largest companies, including Wal-Mart’s $408 billion. It’s also more than the $439 billion in combined sales of Toyota, Ford and Daimler. (www.thefamilycaregiver.org.)

Alzheimer’s Caregivers:
In 2010, 14.9 million family members and friends provided 17 billion hours of unpaid care to the 5.4 million Americans living with Alzheimer’s and other dementias. The total economic value of these dedicated caregivers’ services exceeded $200 billion. (www.alz.org.)

Despite these numbers, however, the emotional, social and societal value of your work is inestimable by any measure.

Nursing Home Placement Can Be the Most Loving Choice

Saturday, December 22nd, 2012

No one wants to live or place a loved one in a long-term care facility, but sometimes it’s the most loving choice. This is especially true for Alzheimer’s patients in the mid- to late-stages of the disease. They need so much more care than any one person can provide at home, even with people coming in to help.

Does anyone want to share their experiences with placing a loved one in a nursing facility? What was it like for you?

For more on this topic see my Huffington Post with the same title.

Parenting Your Parent

Wednesday, December 19th, 2012

When your mother’s or father’s mind begins to decline you are suddenly cast in the role of being the parent. This role reversal feels uncomfortable at first, but it’s something you will need to get used to.

The Ten Most Important Parenting Duties

There are numerous tasks and responsibilities you will have to assume when parenting your mother or father as their Alzheimer’s advances, and in the early to middle stages, the 10 most important responsibilities include:

  1. Ensuring that their basic needs are met, such as shelter, food, and clothing
  2. Reassuring them that they are safe
  3. Getting them to stop driving when it’s no longer  safe for them to do so
  4. Helping out with simple day-to-day activities such as shopping, cooking, cleaning, doing laundry, or reminding them to take their medications
  5. Determining where they should live (i.e., in their home, with you or another relative, or in an assisted living or long-term care facility)
  6. Arranging for social stimulation by having them spend time around other people
  7. Providing entertainment and engaging them in activities that  are appropriate for their stage of the disease
  8. Handling their legal affairs
  9. Managing their financial affairs
  10. Making their health care decisions

The last three are especially needed for people in the mid – late stages of the disease.

How many of you had to essentially parent your parent? What was your experience like?

Another Resource for Caregivers – Caregiver.com

Sunday, December 16th, 2012

I have mentioned many resources for caregivers on this blog, including AARP’s sections on caregiving and The Alzheimers Reading Room, just to mention two. I recently discovered a new website dedicated exclusively to supporting caregivers. Although not limited exclusively to Alzheimer’s caregiving, Caregiver.com has many articles and tips about caring for people with Alzheimer’s. It also publishes a helpful magazine, “Today’s Caregiver.” Check it out.

Overcoming Denial When a Loved One Shows Signs of Alzheimer’s

Wednesday, December 12th, 2012

Alzheimer’s is, above all, an insidious disease. Its symptoms often begin so mildly and progress so slowly that it’s easy for friends and loved ones to deny them until one day there’s a ‘defining incident;’ an incident so bizarre that not even the spouse, child or other loved one can ignore it or explain it away.

Yet the disease typically starts with things of little or no significance. Not being able to come up with a common word. Mixing up someone’s name. Forgetting to turn off the stove. Things we all do from time to time. But for the person just entering the fringes of Alzheimer’s these things may begin to happen more and more often.

Years may pass between the earliest occasional confusion and the ‘defining incident.’ And during those years, the person may annoy or even anger friends and family members by being late, forgetting important appointments, being short-tempered, being unable to perform routine tasks, and exhibiting a whole variety of other troublesome behaviors.

But people noticing consistent signs of confusion and forgetfulness in a loved one should not wait for the ‘defining incident.’ One early action to take is to review the Alzheimer’s Association 10 Signs of Dementia and ask yourself whether your loved one is showing one or more of them:

  1. Memory loss that disrupts daily life
  2. Challenges in planning or solving problems
  3. Difficulty completing familiar tasks at home, at work and at leisure
  4. Confusion with time or place
  5. Difficulty understanding visual images and spatial relationships
  6. New problems with words in speaking or writing
  7. Losing things and the inability to retrace steps
  8. Decreased or poor judgment
  9. Withdrawal from work or social activities
  10. Changes in mood and personality

The Alzheimer’s Association web site has additional information about each of these items and explains how they differ from things ‘normal people’ do from time to time.

It’s easy to ignore these signs or fail to connect the dots, but when a loved one is showing them it’s essential to dig down deep into your soul and find the emotional strength to get a medical evaluation. No one wants to be evaluated, or have a loved one evaluated, for Alzheimer’s disease, but sometimes it has to be done – and the sooner the better.

Would you like to share your own experiences with denial? How long were you in denial about your loved one’s condition? What happened that finally made you face the truth?

A Resource for You: The Alzheimer’s Reading Room

Sunday, December 9th, 2012

The Alzheimer’s Reading Room is the largest blog of its type and the number one source of life news for the entire Alzheimer’s community, with more than 3,500 articles in its knowledge base.  It has more than 7,600 subscribers and averages over 50,000 unique visitors per month. This site is a “must follow” for Alzheimer’s caregivers. Its goal is: to Educate, sometimes Entertain, and Empower Alzheimer’s caregivers, their families, and the entire Alzheimer’s community.

Founded by Bob DeMarco, who cared for his mother with Alzheimer’s for eight years, the articles on the site discuss issues that are important to Alzheimer’s caregivers. They provide specific insight, advice, and solutions based on real life experience. To review the articles I have published there go to the site and type my name in the search box half way down on the home page.

 

 

Connecting with Early to Mid Stage Alzheimer’s Patients

Tuesday, December 4th, 2012

At the early stage you can often share in whatever fun activities the person enjoyed before developing Alzheimer’s. Some games may need to be adjusted, however, to accommodate your loved one’s diminishing mental capacity. For example, you may need to play a child’s card game instead of bridge; checkers instead of chess. Or, if the person previously enjoyed jigsaw puzzles, you may need to find ones with fewer and larger pieces.

At the mid stage of the disease, people with Alzheimer’s may have more or less the mental and social skills of a toddler. While it’s excellent to do the standbys – things like looking at old pictures or watching movies together, those are somewhat passive.

With a little thought you can find more active ways to spend time together, such as giving your loved one toys or other “props” that the two of you play with together. The key words here are “play” and “together.”  If you find some item the person really likes, you can use your imagination to invent simple games to play together with it.

Some people with Alzheimer’s cannot be reached by any means, but try experimenting with the ideas mentioned here. You may be amazed to find your loved one can suddenly function at a higher level and become happier when involved in these types of activities. And that can bring joy to both of you.

Has anyone tried these strategies? Have you tried other things that worked? If so, please share so we can all learn from your experiences.

People With Alzheimer’s Live Only in the Present

Saturday, December 1st, 2012

There is a helpful tip that can help you reduce your emotional distress when your loved one becomes distressed over some event. You just have to be aware that people with dementia live only in the present.

 This means that people with Alzheimer’s have several traits:

People with Alzheimer’s disease usually don’t stew about bad things that happen to them. They don’t fret over things that happen simply because they don’t remember them.

Yet caregivers who experience their loved one’s distress over some issue tend to become quite upset. They suffer long after the person with Alzheimer’s has completely forgotten the issue and moved on.

In addition, people with dementia often adjust to change more easily than their loved ones do because they don’t remember how things were before the change. Thus, they are not aware any change has taken place.

Finally, people with dementia typically don’t worry about tomorrow. They don’t experience the kind of anxiety about the future that we may because they don’t have the mental capacity to do so.

So one secret to reducing your emotional stress is to remain aware that your loved one lives only in the present. That way you can be more at peace when your loved one gets upset about something. You will be able to end your own suffering as quickly as your loved one does and then you can move on to something pleasant.

Can anyone add any examples of this?