Founder and Executive Director Linda Fodrini-Johnson, MA, MFT, CMC

When a parent or spouse can no longer do what they did yesterday, it becomes another transition for the primary caregiver and for the extended family.

These transitions catch us off guard and an overwhelming sense of loss and grief is experienced by the primary care provider.  The caregiver often does not label this as a grief process, but it is about loss – however slow – it still has the power to stop us in our tracks.

If you are caring for someone with a progressive dementia, such as Alzheimer’s Disease, you probably have had a similar experience.  I think of a story of a spouse who called me one day in tears and said, “Linda, I thought I had accepted this disease and today my wife could not remember how to get toothpaste out of the tube.   I could not even help her.  I just had to go into the other room and cry.”

And that is what we need to do with this type of pain – express it, find someone with whom to discuss it and move on.   What this gentleman said to me a few weeks later is, “I just put the tooth paste on the brush and then she knows what to do and soon I’ll probably have to help her brush as well.  And when that happens I’ll probably have those same feelings all over again.  But, today we are enjoying our backyard and watching the birds at the feeders with great pleasure.”

If you can learn to let go of your feelings, express them, find a coping mechanism, so as to preserve the dignity of the person with the dementia it will be easier to move on to what you can enjoy together and make this a less painful journey.

Being in  the moment is all each of us has.  However, we feel pain at little losses as well as big ones and it is important to do the grief work and not let it eat at your inner soul.

Founder and Executive Director Linda Fodrini-Johnson, MA, MFT, CMC

Watch this video blog: Research Shows Family Caregivers Want More Education on Caregiving

The National Alliance for Caregiving in collaboration with AARP did an extensive report on “Caregiving in the U.S. 2009”.  The report shows that the increase for information and formal caregiver training has increased over the past 5 years. 

What family caregivers want is more information and education on, is care recipient safety at home, easy activities to do with the person they are caring for, as well as how to choose a home care agency, assisted living facility or nursing home.  A large portion wanted information on one subject and since the report showed an increase in those caring for someone with Alzheimer’s disease – that is one of those areas we just can’t give families enough information and guidance.

It was interesting to me that families looked to the doctor for ideas on education and in our area very few physicians are aware of what is available in the community unless they were connected to a senior service of a local hospital.  They also looked to their caregiving provider for information – however, not all home care agencies have skilled professionals to provide caregiver specific education.

Another surprising finding is caregivers expressed less desire for information about finding time for themselves.  I am not sure how to interpret this – I would like to say that they all find time for self-care or at least more know of the importance of caring for oneself while caring for another.  I hope it isn’t that they are overly focused on caregiving and have not thought about their own needed self-care.

See our website for the classes and support groups we have scheduled in our offices and in the community.  We believe information is empowering.

Founder and Executive Director Linda Fodrini-Johnson, MA, MFT, CMC

When a family member is diagnosed with Alzheimer’s, often little is given to the patient or the family as they all are entering a very long journey of feelings of anger, disbelief, grief, depression, fear and concern.

It would be my ideal that each family who must experience this disease is given a coach to help them find joy and peace on this path that can be filled with potholes.  The professional could help families review and update legal tools that will be needed for decisions in the future, help them look at all the options for the future and help them plan for the costs as well – enlightening them to entitlements and benefits.

The coach would get to know the family on an intimate level and know what types of interventions would work well for the patient and each family member.  How we approach a challenge will vary from person to person and from family to family – we are all unique.

When the families have the trust in one single person or a small group of people to guide them on this journey, they truly can be freed to live and find joy in the moment.

Often professional Geriatric Care Managers are experienced at Alzheimer’s family coaching and, with just one visit a month, can give families the life line then need to find peace of mind and quality of life despite having to traverse a disease that steals minds.  At Eldercare Services, we have been guiding families in this manner for many years.

Founder and Executive Director Linda Fodrini-Johnson, MA, MFT, CMC

There are so many websites leading in different directions, each touting they are the premier, largest, biggest, best option for aging parent home care, assisted living or even financial planning and legal advice.

Where does a family turn?  How do families know they are getting someone who is working on behalf of them, with the central goal being quality of life based on client values?

The best way is to ask questions.  The venture capital company that has just hit on baby boomer aging might be able to gather some health and human service experts – but do they know mom’s community or your community?   It isn’t just expertise that you want guiding your choices, it is knowledge on ALL the local resources, knowledge of benefits, aging, care choices and most of all understanding the emotional toll this can bring to everyone in a family.

So, what questions do you ask?  I think these are the most important ones:

1)      How long has this company been in my community?  Are they local or do they just have a national database?

2)      How long have their “experts” been with the company?

3)      Are these experts credentialed and certified by a creditable process (not a 30 hour course)?  Do they have a license – if so, do they have years in the field doing aging or elder care work?

4)      Do they take referral fees from outside agencies, facilities or professionals?   If it is a “free” service you can assume so, if it’s not a non-profit or government agency, someone pays.

5)      Is this person going to help you make a decision and help you see the pro and cons of each decision as it affects your family members?

6)      If you are looking for an Elder Law Attorney, Financial Planner or Geriatric Care Manager, do they belong to a National Association that has standards for membership and certification?

Asking questions will lead you to where you will get the best guidance.

Anne Rosenthal, Ph.D., MFT, CMC

We all want to live life fully for as long as possible.  Those who live to be 100 years and beyond—centenarians– are an interesting segment of the population to study since they may provide clues as to how this may be achieved.

One of the common character traits of centenarians is the ability to remain connected to meaningful relationships.  Here are some tips to help you create and sustain positive connections in your life:

¨      Be kind. You do not need to know what burdens others are carrying to know that they are heavy.

¨      No matter how great the faults of another person, strive to be aware also of his or her good qualities.  Know that there is something worthy of commendation in almost everyone, even though it may lie dormant and as yet undiscovered.

¨      Make time for hearing your loved ones’ struggles and challenges. When a friend speaks, listen with your heart rather than your judgment.  You may not be able to take away another’s pain, but you can hear it.  Afterward, write them a card or bring them a flower to acknowledge and thank them for entrusting you with their vulnerability as well as their strength.

¨      If you are dealing with an illness or personal struggle that may be shared by others, join a support group where you can meet regularly to talk about your challenges, fears, hopes and dreams among others who will understand.

¨      Recall someone who helped you when you needed it.  Write or tell him/her of your appreciation.  Recognize someone in your extended family or community who has provided outstanding service.  Make a certificate or plaque they can put on their wall, or send a note with flowers or food.

¨      For emotionally significant communications, don’t use e-mail.  Meet in person, talk on the phone, or write letters that you can mail or hand-deliver.  People love getting letters.  It can be rare to get anything special in the mail anymore.

¨      Read selections from your favorite books to your family and friends.  Give away copies of your favorite books.  Tell others what these books have meant to you.

¨      If you want to change the way you feel about someone, change the way you treat them.

¨      Step back every now and then and take an objective look at your own behavior.  If someone important to you is being defensive, ask whether you are doing anything to make them so.

¨      Nurture the friendships with which you feel at ease.  Move on from those that take enormous energy and stress to maintain.

¨      Read a story to an elder who can no longer see fine print.  Record your reading on tape so they can play it back and listen whenever they wish. 

¨      Learn from people who are different from you.  Greet them with true curiosity, knowing that you can stay true to yourself no matter what the difference.  Do not let differences of opinion become causes of estrangement.

Remember that love is necessary for great relationships, but it is not sufficient.  Great relationships don’t just happen because you’re in love.  They take work, and lots of it.

Founder and Executive Director Linda Fodrini-Johnson, MA, MFT, CMC

Often individuals with dementia are in denial to something as evident as incontinence, deny they have a problem and make excuses for the wetness on their clothing or furniture.  This is embarrassing to family members and presents a hygiene issue to the family member with dementia.  This could be the sign of a urinary tract infection (UTI) or other physical dysfunction and should always be brought to the attention to the medical provider.  Incontinence not cared for properly can lead to a UTI which frequently leads to more confusion and disorientation.

Families call us frequently thinking this must mark the time they need professional help or help in finding a retirement living setting that can accommodate their parent or spouse.  But, before such a drastic action is taken seek a consultation with an expert, a certified, Professional Geriatric Care Manager.

This is often the time when a Geriatric Care Manager can intercede and help with individualized plans of care that respect the dignity of the elder with dementia and reduce the stress on the family care providers.

Care Managers find ways, that meet with approval, for the person with dementia to use protection – but, this is usually with very creative ideas.  Each person will have a slightly different approach. Sometimes the only way is with the outside help of a professional caregiver that is prescribed by the family doctor for health reasons.  Care Managers often get the physician to team with them to reach the same goals – reduced stress for the family and good hygiene for the person with dementia.

Founder and Executive Director Linda Fodrini-Johnson, MA, MFT, CMC

It is important in communicating with someone who has Alzheimer’s or a related dementia, to know the words they have always used for a room like the toilet – did they say “powder room”, “bathroom”, ”can” or another? 

If your family member is going into a care center, retirement community or dementia care facility and they spoke a language other than English as a child – be sure to communicate this information to caretakers because, as the disease progresses, also do language skills.  The word they used in English might be gone, but the word they learned for “bathroom” as a child remains.  Language loss will affect both the receptive and expressive language skills.  

So, if their most recent language is their second language, give the caretakers a list of important words in the language of origin and a way to pronounce each for communication that is important like: bathroom, bedtime, mealtime, come, stop, go, yes, no.

Loving comes without language and it is our hope that all who care for those who have lost the ability to communicate with language will continue to care with love.

Watch Linda’s Video Blog Dementia and Communication!

Founder and Executive Director Linda Fodrini-Johnson, MA, MFT, CMC

Do you allow Mom to smoke, despite her dementia and living alone in a senior apartment complex?   Do you respect your Dad’s right and autonomy despite his 90+ years of life?  With poor vision and beginning forgetfulness, do you allow him to drive across the state to see an old friend who is ill?

Adult children of aging parents face many challenges when concerns of safety conflict with the elder’s choices that relate to independence. At other times, adult children face “resistance” to their well meaning rationalization to the elder family member on why a different choice should be made.

In the first story above, the daughter decided, after attending a support group for adults of aging parents, to tell the property manager who then gave the mother an eviction notice.  Daughter colluded with mother and helped her find an assisted living facility that would manage the smoking and the cigarettes as part of the “rules or laws” of that new community.  Mother adjusted and daughter wasn’t the bad guy; the apartment manager was.  Mom didn’t know it was her daughter who brought this danger to the attention of the manager.

In the second story the son decided to take some time off work and told Dad he would love to drive with him and in fact they could take the son’s newer car (knowing Dad would not want to drive it).

In both stories, dignity and respect were honored and the bad choice was made manageable and without unnecessary drama.

These are examples of some creative family problem solving that respected the elder’s desires and kept them out of harms way.  It is not always easy to do this.  If you are facing one such dilemma, you might want to attend a support group for adults concerned about aging parents or schedule a consultation to talk with a professional Geriatric Care Manager who can help you with specific, creative interventions.

Founder and Executive Director Linda Fodrini-Johnson, MA, MFT, CMC

We have a tendency to lump age groups together.  We name groups “toddlers” or “teens”, which make common sense. Some individuals in our society who are over the age of 55 are annoyed if you call them senior or elder.

I remember leaving a shopping trip at a local store thinking that they didn’t charge me the tax on what I purchased.  Once I got home, I looked at my receipt and realized they had given me a senior discount (which started at 55 years of age). I was offended because, number one, I was 54 and two, the 20-something clerk didn’t even ask me if I was a senior – he just assumed I was “old” enough.  You would think I should be happy I got the discount but I was taken aback by this person thinking I was a “senior” and that I looked “old”! 

In looking back on this episode, I realized that it was more the vanity than the title “senior” that offended me.  But, I know many people who are beautiful at 80 or 90 or 100 – so what was it?   Perhaps just a passage that I was not quite prepared for at that moment in time.  It might have been a bad hair day as well – if you know what I mean!

We named our business “Eldercare” because I like the word “elder”.  I think of the esteem that elders hold in native cultures around the world.  I am reminded of the statesmen that have reached the highest level in their tenure.  The church I belong to addresses the leaders on the board as “Elders”.   So to me, this is a term of respect and earned leadership – even if only by age.

Will the baby boomers coin another term for their later years?  Are they going to welcome the discounts that can come with a certain age or will they deny them in vanity?   What do you want to be called: a senior, an older adult or an elder?

Founder and Executive Director Linda Fodrini-Johnson, MA, MFT, CMC

Elder abuse is rising. Even though my mother is bright and doing well living alone, which she prefers, she is a target just because of her age!    Mom is almost 88 and out and about going to clubs and driving friends around.  She lives in a major urban city and has since her birth.  The only help I provide for her is a personal assistant who acts as her personal secretary making appointments, reviewing mail and helping her with phone calls – because of her hearing loss she can’t understand accents or phone tree instructions.

 A week ago, she had a knock at the door. A woman asked to use a portable phone because she said she was locked out of her home.  Mom gave her the phone but of course the number was busy.  Then she asked for water and when my mother went to give her a cup the woman followed her inside making comments on how my Mom’s home reminded her of her Grandmother’s.  My mother became suspicious at this point and told her she needed to leave. However, the woman saw the candy dish and asked for candy.  Again, Mom says, “Take some and get out of my house.”, not knowing Mom’s purse was now under the woman’s coat!

 Mom of course had her keys, checkbook and credit cards in that purse.  She changed her locks with the help of a grandson, notified all the credit card accounts and the bank.  She has received two calls, one to cash a check for under $200 and another to charge $4,000 at an appliance store.  Mom stopped those transactions. 

 This is a lot of stress on an elder.  Thank God she has her personal assistant to help with all the paperwork that this event brought to her.

 The bottom line is, tell the elders in your life not to open the door for strangers – especially if they live alone.  The police officers told my Mom this and I hope she listens.  It is hard for her not to always be kind.