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

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

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

When a family member is diagnosed with a progressive dementia, it is challenging not only for the “patient” but even more so for the entire family system.  Diseases such as Alzheimer’s impact everyone in the family and sometimes in the community (if the person doesn’t have family).

Those who oversee the care of someone with a dementia, should schedule regular appointments with the primary care physician and bring to the attention of the doctor any changes in behavior, which can sometimes be a signal of illness.

Over ½ of the primary caregivers caring for someone with a dementia suffer themselves from untreated depression.  So, it is just as important that the family caregiver be seen by a primary physician regularly as well.  Untreated depression and stress can lead to cardiac events such as heart attacks or strokes.  Self-care becomes more important when you are a primary family caregiver.

Family caretakers should connect with a support group and enroll in educational courses that prepare them for the caregiving journey.   Those who participate in day care programs, support groups, and have a spiritual resource cope better.

Quality in life comes one day at a time and it is important for the caregiver, as well as for the person with a memory loss disorder, to find pleasure in every day.  Make this a goal, even if it is a short walk in a well cared for park or sitting watching children in the playground.   Caregivers should cultivate as well as keep interests in activities that have always given their life pleasure.

In working with family caregivers, I often tell them to try to budget dollars and time that they will spend each month on keeping pleasure in their lives, despite the journey of being a caretaker to someone with a dementia.  The budget of dollars allows them to spend money on day care, home care or respite stays so that they can renew themselves with quiet time or a personal interest such as travel, entertainment or one-on-one time with a grandchild.  Even though these dollars seem to be spent on them it actually allows one to care for someone a longer period of time because they are finding pleasure in life at the same time as providing 24/7 care for another.

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

When a parent dies you are often overwhelmed by either the tasks of putting a memorial service together or your own grief.  Some of the activities of putting the memorial service together can actually help you with your grief process and bring a smile to your heart even if the tears are in your eyes.

A client of mine recently lost her mother. The mother had been living in her home receiving caregiving for 15 years from this working full time single mom/daughter.  Mom was a stressor, but also a blessing – the absence of such a responsibility is another loss (a topic for another blog).

One of the healing gifts for this daughter was putting together a Memorial Service, and in doing so, she came up with a lovely idea that I would like to share with others. She put together a CD with all her mother’s favorite songs and gave this to everyone who came to the service.  These were songs her mother sang to her and her brother as they were growing up.  As I was listening to this music, I had a picture of this woman’s values and her pure joy in living – how lovely for everyone that had known the mother to get this same sense of her on a more intimate level – just by connecting to the lyrics that made her smile.

Grief is a very hard and trying process. Reaching into the positives of the life just ended and finding ways to share those positives with others is a way to say, “She lives in the hearts of all who knew her”.

May your grief be brief and may your memories always touch your heart with joy and love remembered.

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

Why does the spouse try to do it all without hiring help or allowing others to assist?  Is it the “for better or worse” vows of the marriage ceremony?  Is it that they are fearful they will be judged by others if they share the care?  Or, do they feel guilty if they self-care?

Spouses often end up with stress and other health related issues and may die before the person they are caring for. How might professionals or family members help?

Often the only time a spouse will finally give in is if someone in the same situation tells them their story and convinces them of the importance of self-care.  Sometimes a “caregiving inventory” will help them self diagnose the need for some self care.  Support groups are great places to get this type of advice and direction.

Geriatric Care Managers may be able to shine a light on the need for self-care that family members can’t.  It is often hard for a parent to take advice from an adult child.  Also, the family doctor can stress the importance of respite breaks for the caregiving spouse. Regardless of the source of the convincing, self-care is paramount for those who are acting as caregivers for others.

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.

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

Caring for another 24/7 and giving your all to one you love can be exhausting, frustrating and bring about “anger” in ways that surprise you, the family caregiver.

 Asking yourself, “Was that me?”, after hearing yourself shout at someone who doesn’t understand due to a cognitive loss or dementia.   Or, maybe you find yourself throwing something or being a little rough in dressing or caring for another.

 Losing your patience is normal.  Looking at that loss of patience as a “red flag” is helpful. It is a signal that you need a little “self-care” and it is time to bring in help or take a break.

 Some helpful hints in managing anger:

 1)         Be sure you can say at the end of each day that you did something just for yourself like a hot bath, reading for 30 minutes, a walk with the dog etc.

2)       Acknowledge that it is ok to lose your patience.  It is not ok to have this frustration transform into anger that could put you and the other in danger.

3)       Join a support group.  Get affirmation for your frustration from others in the same boat.

4)      Take an “anger management” class.

5)       Ask for help.  Be specific if asking family members to share the caring.  Say to your sister, “Could you sit with Dad on Tuesday from noon to five while I take a Yoga class”?  Don’t just say, “I need help.”

6)       Hire asisstance and use the time off for self-care even if this is only 2-4  hours once a week.

7)        Forgive yourself and make “balance” a part of each day by finding ways to give to yourself.

 Copyright:  Linda Fodrini-Johnson 2010

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

An individual with a dementia can be easily overwhelmed by all of the activities of holiday celebrations and become overly anxious, depressed or more confused.

 Most individuals with dementia do relatively well with set routines and naturally pull back from extra activities that might tax their memory or set them up for failure.  Sometimes a refusal of an invitation that was previously enjoyed can be an early “red flag” for families that something is changing in their elder family member’s cognition.

 A few tips to keep the holidays enjoyable:

 1) Set up one holiday decoration in your family member’s home as a family activity.  Don’t mention that you are doing it because he or she can’t.

2) Tell him or her not to worry about gifts, you will assist them in finding gift cards – give an excuse that the kids like to shop for themselves or it is so challenging to find the right sizes.   Help him or her sign cards and stuff the gift cards into them. Do some of your cards at the same time.

3) Family gatherings can overwhelm and loud noise can increase agitation and anxiety.   So, if you are bringing mom or dad over for a holiday meal – pick them up just before and return him or her right after dessert.  However, if he or she is enjoying the company of little ones, play it by observation – the key is be aware of their behavior.

4) Your holiday gifts might include a phone that is easy to use, sweatsuits that are easy to dress in, and maybe a “housekeeper” once a week that really is a caregiver that can expand her time to do more as mom or dad needs more help.

5) Reduce alcohol use or eliminate it from your celebrations – alcohol only complicates and endangers those with dementias.

6) Try to reduce the sugar laden treats as well – it is easy to be over expose to the treats of the season.  Have lots of fresh fruits available.

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

With the Baby Boomers aging what will the future hold?  Will they want what they want right now – instant gratification?  Some may choose more commune-like living – different from assisted living – more self-directed and self-governed living and create a new way to live.  They would have more control over menu planning and structured activities or entertainment.  And of course, all pets would be welcome, too!

 What would that look like for you?   I see four or five condos linked together with a common room or large family room for art projects, exercise and shared meals.  Each individual or couple having their own living quarters, maybe even their own patio or small raised gardens as well as a larger garden.  A shared housekeeper and maybe a few shared meals each week.  As individuals aged in place, they could share a caregiver to assist with personal care and, if couples needed respite from the care of an ill spouse, they could support one another with short respite care.

 I think that Professional Geriatric Care Management is a must for aging positively and pro-actively; I envision a Care Manager spending some time each of these pods of condos.  This professional could run community meetings, support those who need support and see that new candidates for each group were appropriate.  Also, the Care Manager would advocate for the residents when medical issues presented themselves.

 Individuals would “buy in” as is common now in other cooperatives and pay a monthly fee for the common area, housekeeper, garden upkeep and the Professional Geriatric Care Manager.   I realize I left out all the possible negative “what if’s”…but visioning is just visioning.  Aging in place my way!