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

Watch this video blog: http://www.youtube.com/watch?v=uvSyldkV_cQ

I taught a class that I teach often this past week and heard from many participants in the class:  “I’ve been doing it all wrong”; “I wish I took this class 2 years ago”; “I struggle trying to make my mother understand what I am saying, for me and not her, and it always ended up in an argument that I didn’t win”!

If you have a family member with an illness such as Alzheimer’s Disease, Lewy Body Dementia or “Frontotemporal Dementia” – please, please take a class and get yourself to a support group.

Having to change the way you have communicated to someone you have had a 50+ year relationship with is a challenge.  It takes some new skills and the reinforcement from others in the same boat as you to make changes in your style of communicating.

A new way of communicating can reduce anxiety for you and your family member.  It can mean all the difference in the quality of your relationship and greatly affect the individual with memory loss’s sense of self-esteem.

Eldercare Services provides classes in our office monthly and either me or one of our Geriatric Care Managers are also teaching in the community – we are not alone – other professionals are giving these classes all over the country.  Do your homework – find a class and improve the quality of your life and the life of the person you love who has a memory loss illness.

Professional Geriatric Care Manager Supervisor Eileen Zagelow, BA, CMC

Yes, no, maybe?  This prospect dances out there in the breeze every so often.  We get glimpses of it occasionally then seemingly effortlessly the thought drifts to another day. This might be a decision you could be making for yourself or, even more dauntingly, for someone else.

The idea of giving up our home, whether it is a flat in the city or a sprawling abode in the country, can be an extremely emotional one.  It is a decision many people never make for themselves actually.  Philosophical as we may be about planning, “doing” often proves difficult!  There are so many factors that play into planning around “needing to move”.  Physical function, age, location, assets, desires, family and friends are all part of the mosaic!  And that doesn’t include the “where to move” or “should I move” pieces!

Working as a Geriatric Care Manager for many years has taught me that this is a decision that is best made with professional insight and advice. Intimate knowledge of facilities and the types of care appropriate for an individual’s need and style is critical.   Comparative costs can be overwhelming.  Moving or remaining at home is a question all its own! A Geriatric Care Manager can be most helpful in such a situation.

Consultations for immediate placement consideration usually involve a nominal fee, if any.  Consultation for the “what ifs” is very affordable and easily worth the cost of professional counsel.

I encourage anyone looking down the road, whether you are organizing your trust or sharing your desires with your children, to call a Geriatric Care Manager for advice.  For those in the throes of a crisis, whether it be for yourself or someone you care about, please consider this advice and consult with a professional before you make a move.  Your decision to do so could be extremely cost effective both financially and emotionally.

Being an informed consumer is always important and certainly that is the case here. There are many inviting options available, whether one stays at home or transitions to a new home, that can enhance the senior years and allow for the full life we each deserve. Guidance can only help!

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

Watch the video blog: http://www.youtube.com/watch?v=oltA6PVmEXo

Often families come to the conclusion that it’s a safety risk for their frail elder family member to stay at home yet 24/7 in-home care is not affordable.  The question arises: What is best for Mom or Dad?

Remember to think of future needs as you make a decision for the needs of today.  If your parent has a progressive illness, be certain that the retirement community you choose can meet the changing needs of your parent and know what the costs of that support might be.

It is helpful to have a skilled objective professional work with you and your family.  I highly recommend that you hire someone who will be your advocate in assessing Mom.  This will give you an environment that will enhance your senior family member’s life and give you all peace of mind.

This activity will usually be about 3 or 4 hours of professional geriatric care management time.  And many care managers will arrange for you to get a discount on your first months rent – so in the end you wind up getting more back than you paid for in advice and direction.  Be sure that the care manager you have hired is certified as a care manager and a member or part of a team that are members of the National Association of Professional Geriatric Care Managers.

A professional who does not receive a “kick back” for the referral is going to refer you to a home or community they are familiar with and help you look at all the variables before making this important decision.

]]> http://eldercareanswers.com/blog/2010/07/finding-senior-housing-for-aging-parents/feed/ 0 http://eldercareanswers.com/blog/2010/07/dementia-changes-in-abilities-grief/ http://eldercareanswers.com/blog/2010/07/dementia-changes-in-abilities-grief/#comments Tue, 20 Jul 2010 16:51:04 +0000 Linda Fodrini-Johnson http://eldercareanswers.com/blog/?p=396

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

View this video blog: Memory Loss and Aging Parents

When one parent is exhibiting signs of memory loss the other parent can often cover up for the spouse who is losing the ability to care for themselves.   Adult children are often surprised when they hear about a diagnosis they never saw, sometimes because of denial and at other times because the well parent was doing such a good job of making excuses or covering for the ill parent. 

Often this is because of the well parent’s denial and fear of facing the truth of the pending loss.  Other times both parents might be experiencing a dementia and they need each other to maintain their independence.  It is fascinating for me as a professional, to see how we humans struggle to stay independent for fear of losing control.  Are we not really all interdependent?  Don’t we depend on others to produce our food, manufacture our clothing, build structures, secure our financial resources etc?  Would it not be a better world if we were all much more comfortable with the phrase “inter-dependence” instead of struggling to hold onto “independence” even to our own detriment?

Often adult children have a difficult time seeing the dementia for some of the same fears around loss and grief.  It is not easy to experience the loss of a parent in a way that robs them of self and leaves an empty shell of what was a beloved, intelligent being.  Rest assured that love can be experienced and expressed into the later stages of dementia and we can all learn the importance of just being in the moment – because truly that is all there really is.

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

View the video blog: Guilt and Parent Caregiving

Recently in talking with a caregiver who takes care of her mother, father and mother-in-law, the ever present “guilt work” came into the conversation.

“Why”, said the daughter, “do I never feel like I do enough or do the right thing”?  Well, it is more complicated than this simple answer but, the answer is, you just can’t fix it! 

The majority of us have a tendency to want to make something or someone better, to make those who are hurting or suffering from progressive illness, like a dementia, fell better or be less anxious.  A parent can have an uncanny way of making us feel like we didn’t stay long enough or get just the right fix to whatever the problem was that engaged us in the interaction.  This is often not so much because you have a controlling parent but because of the parent’s anxiety, fear or loneliness.

It is hard to know what the pull is but, if you leave feeling guilty it is often because you can’t truly make the internal feeling that they have go away, no matter what your skills, education, experience or love are.  Those who are successful at balancing caregiving with self-care know they can’t fix all problems.  What you can do is be “present” when you are with your parent.  Express your love and admit you don’t have all the answers.  Do your best knowing you can’t fix everything!

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

A daughter I was working with called and asked how to get her mother to agree to go to a doctor appointment for a flu shot.  Her mom has dementia of the Alzheimer’s variety and is starting to become paranoid.   The daughter has spent the past 65 years reasoning with her mother, a retired attorney.   She was having difficulty not giving her mother all the details about upcoming events, as she had done her entire life. 

I had to tell her that the days of reasoning were over.  She need now only tell her mother a limited amount of information.  Over communication and details justifying an action only make those who are losing the ability to process information more paranoid or angry. 

Instead, I told her to just tell her mother she was coming to take her for an outing and lunch.   First, they “dropped in” at the doctor’s office. Her mother recognized it when she got there – but did not remember when the daughter tried to explain to her before. She successfully got her flu shot and a brief medical evaluation. 

Immediately after the visit the daughter took her mother to lunch with no mention of the medical stop.  Mom commented on what a wonderful time she had and the daughter called to thank me for the advice and the reduction of stress she was had been feeling.

View the video blog on this topic:  Dementia and Appointments

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!