Alzheimer's Care

1. Keep or adapt family traditions that are important to you. Include the person with Alzheimer’s Disease as much as possible
2. Recognize that things will be different, and have realistic expectations about what you can do
3. Encourage friends and family to visit. Limit the number of visitors at one time, and try to schedule visits during the time of day when the person is at his or her best
4. Avoid crowds, changes in routine, and strange surroundings that may cause confusion or agitation.

Most current research suggests that caregivers should interact with older adults with Alzheimer’s in “their” world to minimize anxiety and frustration.  This means not correcting them when they tell you they went to work today, drove to the store or had a conversation with their Mother.    It does no good to remind them that they haven’t worked in 40 years, driven a car in 5 years or spoken to their Mother in 20 years.  For these events are still very real to them, as the past has become their reality.

My Mother’s retreat into the past affects everything about her life.  She is appalled that a BLT is $6.95 on a lunch menu.  She doesn’t understand why my Father hasn’t come back from a business trip.  She tells medical personnel she is 45.  When I am with her, I feel like I have stepped through the door of a time machine that has set the clock back by decades.
Stepping back in time helps me connect with my Mother.  We have lively conversations about her job and shopping trips and she glows with pride when I compliment her new hairstyle.   I don’t overload her with too much information or share plans in advance.  I respond from my place within the time machine, where my Mother is much younger and I am much older. 

My Mother’s birthday is coming up.  My sister and I have planned a celebration with her friends from her memory care neighborhood.  We will have a cake with her name written in sugary icing, balloons, party plates, favors and presents.  It will be reminiscent of birthday parties from within the time machine, when the joy of turning a year older with family and friends was all that mattered.  
 

I just returned from a wonderful weekend spent with four friends from college.  We have been friends ever since we pledged Kappa Kappa Gamma in the mid seventies, some 30 years ago.   We live in four different states and cherish our yearly “girl’s” weekend.  Throughout the year, we keep in touch by cell phone and e-mail.  However, there is nothing like being together, sipping wine and sharing family news, career challenges, and our love of new shoes.  Discussing the pros and cons of reaching the half century mark always comes up too.  Among us you will find wives and widows, mothers and stepmothers, and daughters of aging mothers and fathers. 

In years past, our conversation revolved around our children.  We looked to each other for advice and support as we coped with the terrible twos, middle school independence and aggravating adolescents.   Something different happened this year.  Caregiving was still a topic of conversation, but centered on our parents, rather than our children.    We are all caregivers, with a parent or parents that are facing issues common among older adults:  chronic illness, medication management, cognitive decline, financial concerns, fall risk, and driving conflicts.   

Each one of us expressed concern and a willingness to help.  We wanted to help our parents remain independent and honor their wishes.  Yet, we had so many questions!!!  All weekend long, we discussed and debated how best to help our parents.  Without realizing it, we became a caregiver support group and were comforted by sharing our concerns, ideas and strategies with dear friends.  We have continued the support by raising issues, asking questions, and providing updates via group e-mails.   We haven’t yet joined the facebook revolution, but have formed our own informal eldercare exchange network to help us cope with our aging parents. 

I feel incredibly fortunate to have such a caring group of friends.  Their support has helped me through all stages of life and continues to prop me up when I’m concerned about my Mother and how best to help her.  I encourage every caregiver to find either an informal or formal support group.  Talk to your friends , neighbors and colleagues about caregiving.  My guess is you will find someone else who is an active caregiver.  Also, explore formal support group opportunities offered by organizations such as the Alzheimer’s Association, local hospitals and/or assisted living and long-term care facilities.

• Medicare overview
• Medicare Part D information

In my blog on Nov 9th, I discussed the end-stage dementia issues and raised the question ‘Is dementia a terminal illness?’  When faced with terminal illness, seniors and their caregivers often choose palliative care.  Today, I’ll discuss that further.

What is a terminal condition?

In most states, a terminal condition is a status that is incurable or irreversible, and in which death will occur within a short time.  There is not a precise, universally accepted definition of “a short time,” but in general it is considered to be less than one year.  When looking at the hospice benefit, it will define “short term” as six months or less.

What is palliative care?

Palliative care is a comprehensive approach to treating serious illness that focuses on the physical, psychological, spiritual, and existential needs of the patient.  Its goal is to achieve the best quality of life available to the patient by relieving suffering, by controlling pain and symptoms, and by enabling the patient to achieve maximum functional capacity.  Respect for the patient’s culture, beliefs, and values are essential components.  Palliative care is sometimes called comfort care or hospice type care.

For more information: go to Caring Connections which is a program of the National Hospice and Palliative Care Organization (NHPCO), is a national consumer and community engagement initiative to improve care at the end of life, supported by a grant from The Robert Wood Johnson Foundation. Caregivers and seniors can find them online at www.caringinfo.org.

Caregivers and seniors can also visit the National Hospice and Palliative Care Organization (NHPCO) home page at http://www.nhpco.org/templates/1/homepage.cfm.
 

• Avoid having a rushed schedule.  This only increases anxiety.
• If traveling by plane, minimize stops and long layovers in the airport
• Travel at a time when the person is most alert
• Rely on familiar and comfortable destinations
• Carry identification such as the Safe Return/Medic Alert bracelet, which can be purchased through the Alzheimer's Association.

Hoarding is a common behavior exhibited by older adults with later stage Alzheimer’s Disease, and many caregivers will see this behavior in their loved ones.  Some seniors hide belongings, some won’t throw anything away and some spend lots of time rummaging through drawers, closets, even refrigerators.  In many cases, seniors with Alzheimer’s engage in all of these activities.

Experts have suggested that seniors with Alzheimer's engage in these behaviors because they:

• were impacted by the Great Depression and “save” things just as their families did in the past
• come across an item, don’t recognize it, don’t know why they have it, and don’t know what to do with it and because they don’t want to ask someone about it, they hide it to get rid of it
• are fearful they are going to run out of something, for example -  money, food, clothes – so hide these items from others.
   

Many adults question their memory as they get older and wonder if losing their keys is a part of normal or healthy aging.  Recently, the Alzheimer’s Association came out with a list of 10 signs to help distinguish between what is normal and what is not with your memory as you age. 
So, what is normal and what isn’t?

Typical/Normal
1. Sometimes forgetting names or appointments but remembering them later
2. Making small errors sometimes when balancing a checkbook
3. Sometimes needing help with recording a TV show or help with microwave settings
4. Getting confused what day of the week it is but later figuring out what day it is
5. Visual changes due to cataracts or other eye problems
6. Sometimes having a difficult time coming up with a word while in conversations
7. Misplacing things once in a while such as the remote control or eyeglasses
8. Sometimes making a bad decision
9. Sometimes feeling of weary of family, work or other obligations
10. Developing a routine of how to do certain things and getting irritable when the routine is done a different way

What could be signs of Alzheimer’s?
1. Memory changes that disrupt life – Asking information repeatedly
2. Challenges in planning or solving problems – May have difficulty following a familiar recipe 3. Difficulty completing tasks at home or work – May have trouble finding the location of a     place or remembering the rules of a favorite game
4. Confusion with time or place – Sometimes they forget where they are or how they got there
5. Trouble understanding visual images and spatial relationships – They may have trouble reading or judging distances
6. New problems with words with speaking or writing – May have trouble following or joining a conversation
7. Misplacing things and losing the ability to retrace steps – A person with Alzheimer’s may put things in unusual places and not remember where they put it
8. Decreased or poor judgment – They may use poor judgment when dealing with money such as giving large amounts of money to telemarketers
9. Withdrawal from work or social activities – They may have trouble remembering how to do their favorite hobby
10. Changes in mood and personality – They may become confused, suspicious, depressed, etc.

For more information on differences between normal and healthy aging vs. dementia, please visit the Alzheimer’s Association at www.alz.org or call their 24 hour helpline at 800-272-3900.

For caregivers of aging parents, insurance coverage is an important topic, especially if your loved one suffers from Alzheimer’s, congestive heart failure, or other common conditions.  My last post covered the eligibility requirements for Medicare.  Once you determine eligibility, you’ll need to decide which policy or policies to choose.


1. Original Medicare Plan – If you are eligible, you will be automatically enrolled in Medicare A and then you have the option of adding Medicare Part B and Medicare Part D.  The federal government manages the Original Medicare Plan.  It operates on a fee-for-service plan. Most people pay a deductible and then a co-pay or co-insurance.  Original Medicare Plans do not cover everything. Costs that you may incur include co-insurance, co-pays, deductibles, etc.  These costs are called gaps. To help cover these costs, you might want to buy a Medigap policy.

2. Medicare Advantage Plan (Plan C) -  Seniors much choose to join.  The Medicare Advantage Plan or Plan C combines your Part A and B coverage. You have the option of adding Part D if coverage is not already included.  Medicare Advantage Plans include HMO, PPO, private fee-for-service plans, and Medicare special needs plans. The main difference in Part C is that it is provided through private insurance companies approved by Medicare. With this program, you may have lower costs and receive extra benefits. With this plan you do not need to buy a Medigap policy. 

3. Medicare Part D  - Part D is stand-alone prescription drug coverage insurance.  Most people do have to pay a premium for this coverage.  Plans vary and cover different drugs, but all medically necessary drugs are covered.  You can choose what drug plan will be best suited to your needs.

For more information regarding Medicare, contact your Medicare representative or visit www.medicare.gov and click on “Medicare and You 2009” for more information to help you meet your individual needs (or those of your aging loved one).  Also, the Medicare Options Compare website (http://www.medicare.gov/MPPF/Include/DataSection/Questions/Welcome.asp) will direct you through the various types of policies and explain what is covered under your policy.  Information is categorized on the home page by the type of plan that you have questions about.

My next blog will explain Medigap policies and Medicaid.

• Medicare Summary
• Medicare A Information
• Medicare B
• Insurance Resource
• SHIP
• Medigap
• Medicare C and Advantage Plans
• Earwax
• Visual Impairment Websites
• Hearing Impairment Websites
• Visual Impairment Devices
• Optometrist vs. Ophthalmologist
• Bladder Training
• Foley Catheter Care
• Urinary Continence Education
• Incontinence Supplies
• Catheter Education and Support
• Brain vs. Bladder
• Incontinence – Foods to Avoid
• Tips to manage Incontinence with dementia
• Continence Bladder Diary
• Modify Environment to Assist with Continence

• medication lists
• current diagnosis
• current allergies
• discharge summaries
• diagnostic test results
• and even educational materials

• First, not all emergencies will allow time for medical staff to leave the patient in order to find a PC with a CD drive and review a set of unfamiliar computer documents.   
• Second, in order for this information to be easily read in an emergency situation, it is also easily read by anyone who steals or even simply has access to a person's wallet.  Because it's a CD, it's also not clear exactly what data is on the record; leaving seniors and families caring for aging parents to wonder what information is potentially disclosed.
• Additionally, the currency of the data may be questionable.  Frequent health and medication changes are common in older adults and this approach requires notification back to the provider, payment of an update fee, and the reissuing of the wallet CD.  Allowing reasonable times for such activity, it could be very difficult to keep this up to date.
• Even small scratches from "wallet wear" on the CD can render it unreadable.  Something that wouldn't be readily apparent until the CD was checked in a computer drive.  Often, I fear, at the time the information is most needed. 
• Lastly, the completeness of the data may be in question as it relies on the patient, often a senior with depression or memory loss, to report the activities of the disjoint senior health care system.