Tag Archives: parenting the parent

Hope for the Future

IT HAS BEEN almost five years since I first began my study of dementia after my mother passed away from the effects of dementia and what was probably the beginning stages of true Alzheimer’s. I wanted to know its causes as well as what is being done to find a cure. Though I have found answers to my many questions, it still holds my interest and continues to be a major concern of mine.

When I first began my quest, my focus was on my parents’ generation and the toll it was taking on them, but I am now starting to see the advent of dementia and Alzheimer’s in my generation. Two acquaintances of mine appear to be in the beginning stages and a close relative has died from Lewy Body disease. This is why I believe it crucial that we stay informed about it even if it does not directly affect our immediate families. It is, and will be, until a cure is found, society’s problem. As more of our population moves into their elderly years, solutions must be found to help them. These involve not only problems with insurance and the high cost of drugs, but with safe housing and need for more caregivers that are paid a decent wage.

I have studied many scientific books and articles in my search over the years, but have found the internet to be a key source of information; in fact it is probably better able to offer the latest findings about dementia from scientific studies or advice from experts on caregiving. After years spent searching and reading through innumerable sites, I have come to rely on several that offer reliable, professional, scientifically based facts or guidance. Rather than my trying to keep you up-to-date on the latest research or finding articles that address problems a caregiver of a dementia or Alzheimer’s patient may have, I will share these sites with you in hopes that you  save them as a Bookmark or Favorite and go back to them if you want to find the latest research news or have a caregiver question.

nia.nih.gov   National Institute on aging/National Institute on Health is a a governmental agency under the Department of Health and Welfare. There are 31 funded laboratories around the country studying the problems associated with aging, most at Medical schools or Universities. (The knowledge that so many institutions and dedicated individuals are working on this is heartening.) They also have a wealth of information on caregiving.

alz.org  The Alzheimer’s Association is a good resource for information on support groups. They also offer research and caregiver guidance.

aarp.org American Association of Retired Persons is an excellent source for help with decisions that need to be made like what to look for in a caregiving facility or home,  weighing in-home care with  placement in a facility, finding an elder law attorney, etc. It also gives support and advice for caregivers.

agingcare.com is a private site but has articles on caregiver topics as well as a forum where questions can be answered by others who have had similar experiences. 

And don’t forget the two downloadable booklets I have listed under the Resources tab at the top of the page!

Of Interest: Researchers at the University of California Davis and San Francisco have developed a program using a computer with the ability to learn and improve, known as machine learning, that can help analyze amyloid plaques in human brain tissue. This technique automates the process of measuring plaques and their different characteristics which, inevitably could enable larger-scale analysis of brain tissue to help accelerate research on the possible causes of Alzheimer’s and how the disease progresses. I’m sure we will see more instances of the pairing of science and the learning computer in the coming years. 

Preparation for Eldercare

What would you do if your parent became incapacitated and/or was unable to make decisions on their own?

We don’t like to think about the time our parents will no longer be with us and we will need to handle their affairs. However, as people continue to live longer the need to first help an aging parent is a more likely scenario.

Here is the hard part and one which most of us put off: Having a frank discussion about the future with your parent. Talking about it may sound callous or uncaring, but preparing for the eventuality is actually quite the opposite. If you explain to them that they would be helping you they’d feel they were still in control and be more amenable to sharing. They should realize working with you and getting all their legal information together now will make it easier when the time comes when they need your help.

This advice I am giving is through hindsight. I did not sit down with my mother and discuss the possibility of the need for me to make decisions on her behalf. Once Mom began having memory problems I gradually began making many decisions for her. Would it have been easier if we had discussed it before-hand? I don’t know. She still might have resisted but been in a more reasonable state of mind.

I encountered a few problems trying to help my mother during her dementia, which I will share, then I will give my recommendations based on what I learned along the way.

What I did do that made the transition less complicated was that I already had Power of Attorney. A few years before, after my father died, I took Mom  to her attorney and she had a new will written and a trust  created  which named me as a trustee and gave me POA.

A major symptom of dementia is difficulty working with numbers. So it became for my mother. The first task I had to undertake was paying her bills. It did require some convincing, but she eventually realized she needed help.

What did not go as smoothly was when tried to have my mother’s funds consolidated and moved to one bank. It made more sense to combine her savings and there was no need for two checking accounts. At the bank we were shown to the desk of a customer service representative where I explained that we wanted to close my mother’s account, whereupon the representative looked at my mother and asked “Is this what you want to do?”  Even though I had already explained the justification to her and thought she understood, Mom answered, “No.” It took several times of my trying to reason with my mother and her saying, “No.” to ultimately convince her. I can understand the bank was trying to protect her, not knowing if I were trying to coerce her into giving me her money. I also encountered this privacy problem many times over the phone talking to different agencies; they always wanted to obtain permission from Mom first and it was hard for them to understand it would be confusing for her.

One of the more important documents I regret not having is the directive for access to her health information. When my mother was given several tests after I had taken her to the emergency room, I went to the hospital the next day to find out the results. I was denied. What I needed was a paper signed by my mother giving me permission to see her health information and/or speak with her doctors. Another option I could have used was to be appointed to be her health proxy which is a more formal authorization and requires notarization. At this time, my mother was often defensive and contrary, and the chance of getting her to sign such a paper were slim. 

Another advantage I had in overseeing my mother’s legal effects is that she was very organized, as was my father, who left written notes for my mother, so all of their legal documents and papers were easily accessible. I can imagine how difficult it could be if a parent was both disorganized and confused.

Essential Documents Needed for Eldercare

       A will and trust listing who will be acting trustee(s) in their stead 

      Power of Attorney to make financial decisions 

       A list of all bank accounts  Tip: Have your name put on the account so it                     will be an easy transition. If possible, combine checking and/or savings so they’re all at one bank. 

     Tax return

     Deeds to property or loans outstanding

     Pension documents, annuity contracts

     Vehicle title

     Utility bills or other bills that are paid on a regular basis Tip: When you take        responsibility for payment, call and have them put on auto-pay.

     Medicare and supplemental insurance card information Tip:The cards should be available for the parent to have access to the original, so make copies  

     Health care proxy and/or Hipaa agreement to authorize release of medical information  

     Medical patient history

     List of all medications Tip: This is extremely important because of the affect they may have on your parent; some drugs cause serious side effects on the elderly. 

I have found two excellent, free websites that offer resources to help:

theconversationproject.org  has downloadable Starter Kits, one which is specifically designed for the loved ones of someone with dementia

eforms.com   has forms authorization for someone to receive health information about a patient which are listed by state. It also explains how to obtain health information

A Reason For Hope

In this time of increased political divisiveness and lack of confidence in our congressional representatives to work together and make effective decisions to run the country, finding evidence of compromise on an issue brings hope.

On September 28, 2018 a bill was signed into law that allocated $2.3 billion dollars to be included in the 2019 budget for Alzheimer’s and dementia research under the auspices of the National Institutes of health (NIH) . The congressional members who sponsored the bill included four Republicans, and four Democrats.

Alzheimer’s is indeed the most expensive disease in the country, costing an estimated $277 billion–including $186 billion in direct costs to medicare and medicaid–in 2018. As the number of those afflicted increases, so will the cost. There are 5 million Americans living with Alzheimer’s today; it is predicted this number will rise to 14 million by 2050. With the increase in funding, scientist are able to work at a faster pace to explore ways to reduce risks, develop drugs or other potential treatments to stop or slow the disease. 

In 2011 the National Alzheimer’s Project Act (NAPA) was passed which focused on the need for resources for research and the needs of family caregivers with a goal to find effective treatment of Alzheimers/dementia by 2025. Since that time, the federal government has continued to be supportive. The monies allocated to NIH from 2011 to the present have quadrupled, and continue to be spent on research and programs to help caregivers.

Among the many groups that keep congress aware of the need for funding for Alzheimer’s and dementia, one group stands out. Alzheimer’s Impact Movement (AIM), the advocacy arm of the Alzheimer’s Association. The group is very active in keeping our representatives aware of what is needed to help those afflicted with Alzheimer’s and those who care for them, as well and working with government agencies that oversee the research and programs that impact dementia and Alzheimer’s.
AIM federal goals are:

Increase the Commitment to Alzheimer’s Research

Build an Alzheimer’s Public Health Infrastructure

Educate Providers on Palliative and Hospice Care

State policy is also vital to the work that the Alzheimer’s Association is doing to meet the needs of individuals living with Alzheimer’s and their families. State officials determine regulatory and statutory standards for dementia training, control spending on state respite care dollars, designate spending for state long-term care services, and control Medicaid spending which can affect eligibility and scope of benefits – all of which can have a direct effect on families impacted by Alzheimer’s disease.
AIM state goals are:

Implement and update state Alzheimer’s disease plans

Improve dementia training

Increase early detection and diagnosis of Alzheimer’s

Educate the public about risk reduction

Preserve Medicaid

Aim was very active in the last election and seeks volunteers on a continuous basis to meet with local representatives, engage on social media, coordinate events, draft ‘letters to the editor’ or assist in other ways to bring awareness to the effects of Alzheimer’s.

To find out more about AIM or learn how you can volunteer go to alzimpact.org


Screening for Dementia

Say, you are worried about your mother who seems to not remember what you had just told her.
Perhaps your husband has taken the wrong turn a few times on the way to a favorite restaurant.
Maybe in conversation you have searched for a word to explain something. You know it is there, but it’s just out of reach. 

Is this dementia? Alzheimer’s?  You are familiar with the signs, but how do you know for sure?

Let’s put your own mind at ease, first, by looking at what is considered normal aging and what is abnormal. Distinguishing between normal memory loss and dementia symptoms is not an exact science but there are some clues to look for:

Are memory changes typical aging or symptoms of dementia?
Typical aging: Symptoms of dementia:
You or a loved one complain about memory loss but are able to provide detailed examples of forgetfulness Complain of memory loss only if asked; unable to recall specific instances
Occasionally search for words Frequent word-finding pauses, substitutions
May have to pause to remember directions, but don’t get lost in familiar places Get lost in familiar places and takes excessive time to return home
Remember recent important events; conversations are not impaired Notable decline in memory for recent events and ability to converse
Interpersonal social skills are at the same level as they’ve always been Loss of interest in social activities; may behave in socially inappropriate ways
Adapted from: The American Medical Association

It is reassuring to know that three-fourths of people over 50 report that their memory is not as good as it once was, and of those who complain about memory problems only 10% have Alzheimer’s or dementia.

If you have definite concerns there are a few tests or questionnaires that can be helpful in clarifying whether a person may have dementia.
Be aware that these cannot be used as diagnostic tools except by a professional. If, after administering the tests you see a problem, you should take the test and the person to a doctor who is able to give you some insight and direction.

The Clock Drawing Test

Have the person draw a clock by hand on a large piece of paper.
Have the person draw the face of a clock and put the numbers in the correct positions.
Then have them draw the hands to indicate the time like 3:40 – one hand of the clock on 3 and the other on the 8.

 Scoring:  assign the following points for each part of the drawing
1 point for a closed circle
1 point for properly placed numbers
1 point for including all twelve numbers
1 point for properly placed hands

If the person cannot draw the clock or if it looks abnormal they would fall into the category of “probably” suffering from mild cognitive impairment or dementia. Many people that cannot pass this test might be suffering from some other illness. This is why it is necessary to consult your doctor.

MIni-Cog Test for Dementia and Alzheimer’s

First, name three objects and then ask the person being tested to repeat them back to you (for example, chair, house, apple). If the person cannot repeat the three objects after a few tries (cannot learn them), please consult a physician immediately.
If the person is successful give them another task for about ten minutes or the clock drawing test.
Next, ask the person to repeat the words/objects from the first part of the test.
If the person is unable to repeat any of the words, they might be categorized as mildly cognitively impaired or suffering from dementia.

The Sage Test
This is a more comprehensive test that you can download developed by Wexler Medical Clinic at Ohio State University.  SAGE

MCI/Alzheimer’s Questionnaire QUESTIONNAIRE 

NEXT: The diagnostic tools doctors use.

Defining Dementia

Since my main focus of this blog will be on dementia we first need a clear definition of what it means. According to the New World Dictionary the psychiatric definition is “the loss or impairment of mental powers due to organic causes.” People with dementia have significantly impaired intellectual functioning that interferes with normal activities and relationships.

When I told people my mother was suffering from Dementia, they often said, “Oh Alzheimer’s.”, however, the two words are not synonymous. Dementia is a term used for a collection of symptoms which are caused by injury or disease to the brain. Alzheimer’s is a disease.

While it is true that the great majority of those with the symptoms of dementia may develop Alzheimers disease, it is only one kind. Other diseases that exhibit its symptoms are vascular dementia, Lewy body dementia, frontotemporal dementia, Hunington’s disease, and Creutzfelt-Jacob disease. Dementia symptoms also can occur in those whose brain has been affected by injury or drugs.

In the beginning my mother had what is called Mild Cognitive Impairment (MCI) which is early dementia. She had trouble with tasks that required reasoning, and could not remember what was said in conversations. She was able to live independently at first, but gradually her symptoms worsened. It is at this juncture that conflicts occur. Though the family realizes their loved one needs help, the person with dementia is usually not ready to give up his/her independence. And so, the caregiver challenge begins!

Here are some signs common to dementia
Impaired judgement
Faulty reasoning
Inappropriate behavior
Loss of communication skills
Disorientation to time and place
Gait, motor, and balance problems
Hallucinations, paranoia, agitation

Someone with dementia symptoms may
repeatedly ask the same questions
become lost or disoriented in familiar places
be unable to follow directions
be disoriented about the date or time of day
not recognize or be confused about familiar people
have difficulty with routine tasks such as paying the bills
neglect personal safety, hygiene, and nutrition

 According to the US National Institutes of Health:National Institute of Neurological Disorders and Stroke  Although it is commom in very elderly individuals, dementia is not a normal part of the aging process.


A Forum on Dementia


Welcome to my new, redesigned blog space. Some of you might have followed my original blog about my mother and her journey through dementia. Others of you may have just discovered my site.

Since my mother’s death, and inspired by her, I have been working toward two goals. The first, at the urging of many, I have taken my blog writings and expanded them into a book. My purpose remains the same: to share my mother’s experience in the hope that it will help others. During the course of writing my blog, I spoke with others and received messages from people from all over the United States and even a few from other countries. Universally they had the same reaction “That sounds just like my mother(or whomever). I know what it’s like.” By offering my book on Amazon I hope to reach more people.

My second goal was to learn as much as I could about dementia and Alzheimer’s Disease. Public awareness of dementia has grown by leaps and bounds and medical researchers and other scientists are discovering more about it each day. Though I have gained much knowledge about it, my goal has become never ending.

My purpose for this site is to share some of what I have learned and information I have gathered from my study of dementia. There is a phethora of information out there on the web, and sifting through it all can be daunting. I don’t claim to be a medical professional or psychologist; I will leave the technical explanations up to them. What I will do is refer you to articles or web pages for more in depth knowledge. My plan is to write every two weeks about some aspect about dementia. In addition, I would like to see this web page as a place to share information and serve as a community forum for those whose lives are or have been touched by dementia. I will share names of organizations that are advocates for dementia or Alzheimers, as well as sites to go to for up-to-date information about the disease and help for caregivers. Anyone else who wishes to contribute something that others would find helpful will be encouraged to do so.