I’m Karen Witt, the Employer Program Manager at My Health Care Manager.  My sister and I recently turned to My Health Care Manager to provide our family with geriatric care management services for our 79 year old mother.  Being a caregiver for an aging parent can be both rewarding and challenging.  By sharing my story, I hope to help other adult children who are making this journey.

 

To learn more about my background, please visit About Us on our website.  

 

My Mother has lived in an Assisted Living facility for almost two years.  In many ways she has adapted well and I think she is comforted by the fact that I live nearby.  However, as her Alzheimer Disease progresses, I often hear “I want to go home.”  In talking with others, I’ve learned that this is quite common... yet hearing it tears at the heart of every caregiver I know. 

Following are some tips you may find helpful when the senior in your life tells you repeatedly:    “I want to go home.”

• Remember that it is very common for a senior to repeat this request often.  Usually they mean the home from 60 or 70 years ago, not the one they left most recently.
• “Home” means different things to different people – love, security, belonging, safety.  When a senior asks to “go home,” try to determine if there is an “unmet” need (i.e. need to feel safe, need to belong) and try to fill that as best you can.
• Don’t refer to the senior’s current location as home.  Point out that they are staying there for “awhile.”  When they say “I want to go home” tell them you will talk about it and name some future date.
• Find a good reason for them to stay where they are – i.e. people are nice, good food, close to family, nice apartment, fun activities and try to get them to “buy into it.”

As a caregiver, the responsibility for decisions regarding your parent’s care falls to you.  Often you wish you could discuss the options, choices and next steps with your parent, just as you discussed so many choices in the past…where to go to college, where to have your wedding reception, which neighborhood to select.  But parents with Alzheimer’s cannot help with current decisions as their ability to reason, compare and choose has been ravaged by the disease.  Sadly, dementia robs them of their ability to chart their own course.

So, what should caregivers do when faced with a variety of paths – how do you know how to choose what is best for your parent? How do you know when a parent’s living environment is no longer safe? How do you know when a parent needs more assistance? 

Here are a few suggestions:

• Pay attention to your parent – they may be confused, but they will give you clues when things aren’t going well.  They may seem more agitated, confused or disoriented.  Their routine may change and a situation that has worked well in the past, now poses problems.  For example, they may no longer want to eat dinner because they either can’t remember where the Assisted Living Dining Room is located, or they are afraid to leave their apartment.  
• Check in with their caregivers – have other family members, a companion, assisted living staff or adult day care workers noticed a change in your parent?  Are they concerned? 
• Take your parent in for a check-up – have the Doctor evaluate your parent and review their medications and mental and physical health. 
• Review your parent’s ability to complete Activities of Daily Living – things like bathing, dressing, continence, mobility, feeding.  Has there been a change in their ability to do these things?
• Engage a Geriatric Care Manager – have them conduct an independent assessment to provide an unbiased view of the situation.

Once you have gathered the above information, spend time thinking and talking to others you trust about the findings.  Choose the next step based on what you think is best for your parent at this moment in time.   For instance, if you determine that they need more assistance, think about the pros and cons of providing additional assistance in their current environment vs. moving them to a new environment such as a Memory Care Unit.   There is no “right” decision.  Take comfort in the fact that you have been both thorough and thoughtful when you made the decision.  Always remember that your parent is better off when you address concerns as they arise vs. postponing decisions until a crisis arises.

My Mother has declined precipitously during the past six weeks.  We’ve watched helplessly as her confusion increased, her mobility worsened and her sense of time and place evaporated.  Yet, a routine Doctor’s  appointment and lab work did not reveal any treatable physical changes.
Yet, everyone around her noticed the decline – my sister, the companion, her Health Care Manager (a geriatric care manager from My Health Care Manager) and the nurses at the Assisted Living facility.  We were saddened to see my Mother struggle with this new stage of life and worked together to offer additional support.  We all ASSUMED that this was the natural progression of the dementia.

Our Health Care Manager was puzzled by what my Mother was experiencing.  She had worked with many, many seniors and felt that my Mother’s cognitive decline did not fit the typical pattern.   She felt that the changes my Mother started to experience happened overnight vs. being a gradual process.  It bothered her, so she sent a letter to my Mother’s physician and explained her concerns.  This led to a conversation between my Mother’s Doctor and the Health Care Manager.  As they reviewed my Mother’s case, a light bulb went off.  My Mother had a medication change in December….was it possible that the med change was negatively affecting her current physical and mental state?   Was it possible that the changes we’d noticed were not necessarily caused by the next stage of the dementia, but a medicine interaction? 

Thanks to the Health Care Manager’s detective work and follow up with the health care provider, we’ve stopped the new medicine that was added to my Mother’s care plan in December.  We have our fingers crossed that we will see a difference and that some of the decline will be reversed.  It is possible that there are other causes – a series of small strokes, for example.  But for now, we are addressing what the Doctor thinks is the most likely cause.

We’ve learned a good lesson.  Never assume that even small changes are “normal” …question everything!  And seek professional help whenever necessary. 

 

Remember Hillary Clinton’s book It Takes a Village which was written to address caring for children?  I find this same approach applies to the senior population.  It really does take a group of people, making a concerted and coordinated effort, to assist seniors as they age.  It takes time and careful thought to build a “village” for your parent.  Following are a few ideas to help you get started:

• Family – Primary:  spouse (if living), brothers and sisters, children, grandchildren, great grandchildren
• Family – Secondary:  nieces, nephews, cousins
• Friends: lifelong friends, new acquaintances, neighbors, club associates, church members
• Health Care Providers:  Primary Care Physician, Specialty Physicians, Physical Therapists
• Geriatric Care Manager:  Professional (typically nurse or social worker) to provides care advisory/advocacy  service addressing  specific needs of senior
• Companion:  Paid caregiver to provide services as needed:  cooking, transportation, companionship, assistance with activities of daily living
• Skilled Care:  Paid clinical care provided by licensed practitioners
  Independent Living or Assisted Living Facility Staff:  Nurses, administrators, social workers, certified nurse assistants

Care assistance and expertise is available from many sources.  Plan your village now - don’t overlook the many ways a support system can be built for your parent.   
 

This week I was pleased to learn of a new on-line resource on the AARP site dedicated to caregiving (click here for the press release).  The site is named for Gail Sheehy – the author of Passages which was first printed in 1976. I encourage you to visit the site.  It is packed with good information and inspiration – two items caregivers need in abundance!

The irony is that I remember my Mother reading Passages when I was in high school…probably about the time my Grandmother came to live with my parents.  A quick look on Amazon revealed that the Passages book was written over three decades ago.  It has been re-released as a 30 Anniversary Edition with an updated introduction.  A quick review of the Table of Contents revealed its relevance.  The chapter titles resonant with my life of 50-odd years and I plan to read the book.  I think it is about time I learn more about Passages – Predictable Crisis of Adult Life, as I feel I’ve experienced a few already!

I can’t help but wonder what my Mother was thinking and feeling when she read the book in the late 70’s.  At the time she was a fulltime caregiver for her Mother who lived with my family.  She was also facing an empty nest as my sister and I prepared to leave for college.   Did the book bring her solace and solutions?  Did the book bring her hope?  Did the book cause her to rethink her future?  Did the book prepare her for the path she now travels?

These thoughts help me remember my Mother as she once was – a vibrant, intellectually curious woman.   It is amazing that a mere book, published in a 30 year interval, can bring me closer to my Mother.  I only wish we could discuss it now and I realize what I missed by not discussing it when it was first published.  As a self centered teenager, I didn’t realize exactly what my Mother was going through….because she handled caregiving so well.  This knowledge has improved my caregiving momentum.  Great news in the middle of a cold, snowy January when responsibilities can seem daunting.

My Mother turned 80 about two months ago.  When we celebrated her birthday, she kept repeating the fact that she couldn’t be 80, as she didn’t look or feel 80 years old.  She is right – she doesn’t look 80 and I am glad she does not feel 80.  But the fact remains that at 80, my Mother is not quite the same woman she was a decade ago.    Thankfully, she is still kind, warm-hearted, gracious and funny.  Yet, her cognition is not what it once was and due to memory loss, the memories she recalls are an odd jumble of past events, friendships and family ties.  Lately, she tells me she wants to “visit” her Mother and speaks of my Father in the present tense.  Unfortunately, they have not been with us for over twenty years.

While I have gotten used to my Mother’s forgetfulness and oft repeated questions, her recent conversations which include a description of an outing with my Dad are unsettling.  We all miss him terribly and it is hard to know what to do when my Mother speaks of him as if he just left the room a moment before.  Sometimes, I try to gently remind her that Dad has passed on.  But most of the time, I just let it go and let her enjoy a past recollection ….as if it happened yesterday.   I’ve decided this is the kindest approach and I’m hopeful that the scattered memories bring her comfort and joy. 

My Mother’s  sixteen month stay at an Assisted Living facility has been tremendously impacted by staff turnover.  Every time a “new” Assisted Living Director starts we schedule a care conference to ensure that the plans for my mother are well understood and will be implemented.  However, we have found that it is not that simple… for things don’t seem to go as planned.  A recent change in Assisted Living Directors has resulted in a scarce nursing staff, laundry that does not get done, lunch that doesn’t get delivered and dishes that remain in the sink. 

The bottom line is that my Mother suffers each time staff turns over.  Caregivers suffer too, as they are concerned about lapses in care and frustrated by dealing with the same issues over and over.  It doesn’t  seem that it should be that difficult to get the laundry done….esp. when the facility is charging $5K a month. 

Turnover is a problem for everyone.   Number one – it impacts care.  Number two – it is time consuming to constantly readdress the same issues.  Number three – it can’t help but influence staff morale which can affect actions and attitudes during daily resident interactions.

Based on our experience, I would definitely ask questions about management and staff turnover when touring  Assisted Living Facilities or other senior residences.  If the number seems high, think seriously about how this will affect your parent’s care and well-being.  The most beautiful building in the world won’t make up for a breakdown in staff communication, training and service delivery.

For the past year, I have been doing my Mother’s laundry.  In the beginning I did everything – sheets, towels and personal laundry.  Soon that became too much – and I made arrangements for the Assisted Living facility to wash the sheets and towels.  But, I still did my Mother’s personal laundry because she did not want other people “touching” her things.

This plan worked at first, but proved to be very time consuming.  It seemed that I was always behind on laundry. I tried putting loads in before work and drying them when I got home at night.  I tried doing multiple loads on a Saturday AM.  I tried picking it up from my Mother more frequently and doing smaller loads at a time.  I tried multi-tasking by doing laundry and paying bills in the same evening.  But the laundry was ever present and the pile seemed to grow each day, despite my best efforts to take control of a seemingly easy task.  My frustration piled up too. 

I finally accepted the fact that “doing the laundry” was a task that could easily be done by someone else.  All I had to do was convince my Mother that someone else could do it too.  First, I talked with the administrator at the Assisted Living facility.  I learned that they could do the laundry and that they did each resident’s laundry separately.   They also used the detergent provided by the family, so that the laundry did not come out with an industrial smell and feel.  Finally, I had a frank discussion with my Mother and told her that I was having a difficult time finding the time to do her laundry and tote it back and forth.  I suggested that we “try” having her clothes washed on site.

Thankfully, she agreed and so far so good.  I have been “laundry-free” for two weeks.  I cannot begin to describe how getting rid of this chore has improved my caregiving outlook.  My Mother has adjusted very well to the new arrangement.

My advice to all caregivers is to evaluate the many tasks on your plate and try to find ones that can be done by others.  Whether it is laundry, grocery shopping or driving a parent to a weekly physical therapy appointment – enlist or hire someone else to assist with these tasks.  You will be so glad you did.  You will be better able to face the next caregiving challenge because your reserve of time and patience has not been depleted by routine tasks.

In most practices, doctors are busy, the front offices are short staffed and the nurses are swamped.  Is it any wonder that calls don’t get returned promptly or orders don’t get faxed in a timely manner?  While there is an easy explanation for these delays, it can be frustrating to a family that is anxiously awaiting test results or a prescription change for their parent. 

I hear it all the time from everyone I know. “I can’t get through to a nurse…I left a message on voicemail and haven’t heard back from anyone…I am tired of pressing 1 for this and 3 for that and never getting any real information or a live person.”

These experiences are especially troublesome when you are worried about your parent and want information as soon as possible.  It can also be difficult to find times to talk privately during the work day, except for a lunch hour or during a short break, so waiting for a call can be very hard to manage.

So what do you do? 

• Make sure the medical provider knows to call your cell phone.  There is nothing more frustrating than to wait for a call and find out when you arrive home at 6:00 PM that the Dr. left a message on your home voice mail at 10:00 AM.
• Make a list of your questions and have it available when you receive the call from the Dr’s office.  Getting back in touch with the same person quickly may be difficult, so try to minimize the need to call back with additional questions.
• Be respectful of office protocols and policies, but be persistent.  If you don’t receive a return call in a reasonable period of time – call back and try to reach a “live” person.  Restate your concerns and/or questions and tell them you are willing to stay on the line while they find someone to help you.
• Send a fax addressed to the appropriate party.  It might get routed more quickly than a phone message.  Also, it lets the Dr’s office know that you are really serious about your need for information.
• Always remain polite and respectful. Becoming angry or obnoxious certainly won’t help your case and could brand you forever as “difficult.” 

These suggestions are based on my own personal experience and I hope you find them helpful.  They are meant to help facilitate communication between a physician’s office and a senior’s family when a voicemail culture seems to be impeding communication.

Asking for help is difficult.  Accepting help can be difficult too.  For some of us, asking for help feels like failure – i.e. if we can’t do it - we must not be smart enough, capable enough or care enough.  However, nothing is further from the truth.  Asking for help is sometimes the absolutely best thing caregivers can do….not just for themselves, but for their parents. 

It is impossible for any one person to be an expert on everything.  It is impossible for any one person to manage a huge number of caregiving tasks, in addition to managing work and family responsibilities.  Sometimes going it alone is not feasible or practical. 

Finding help is not difficult.  Tap into all the resources you can think of – use your informal network of friends, neighbors, and co-workers.  Consider developing a formal network with case workers, companion services, home health agencies and geriatric care managers.  This week, I estimate that the Geriatric Case Manager I work with here at My Health Care Manager saved me about 8 hours – by making phone calls to share concerns about my Mother’s declining health with the doctor and the assisted living facility. Then she followed up to make sure the doctor’s recommendations were followed and the tests he recommended took place.  This represented hours of work that would have been very difficult for me to accomplish in the midst of a very busy work day. 

The bottom line is that my Mother’s care is better when I utilize help.  Problems are more quickly identified and addressed.  Our Health Care Manager always keeps my sister and me informed, so we don’t feel disconnected from the issues surrounding my Mother’s health or care.  Additionally, our Health Care Manager offers suggestions and insight based on years of geriatric experience that help us provide the best care possible for our Mother. 

Don’t be a hero by trying to go it alone.  Caregivers don’t look good in capes.

Ask for help!

Since I don’t have a healthcare background, I had a very limited understanding of physical therapy.  I thought it was only “prescribed” after an injury or surgery to help with rehabilitation.  I didn’t realize it could be “prescribed” to treat on-going issues often faced by seniors, such as loss of mobility or  balance deficiencies.

We became concerned when my Mother became increasingly unsteady on her feet and had difficulty getting up from a chair.  We thought these symptoms were signs of progressing disease or advancing age and “came with the territory.”  When we shareed these concerns with my Mother’s gerontologist, he ordered a physical therapy evaluation and three physical therapy sessions a week to increase her mobility.  My sister and I were thrilled to learn that exercises could help and that my Mother could be taught techniques to help her get in and out of the car and move around more safely and easily.

Mother has been attending her “exercise class” for about two weeks.  She told me she likes it and that they do most of their exercises while sitting in a chair… so it is not too difficult.  We are thrilled she is paying attention and participating.  Earlier this week, I took my Mother out to dinner.  We were seated in a long, low booth.  As we went to leave, I offered my hand to my Mother to help her up. She looked at me and shook her head and said “No, I need to use my legs.”  And I watched in amazement as she positioned her feet and pushed up with her legs and got out of the booth.  We both reacted with big smiles – because she had “done it herself.”

Years ago when I went away to college, I gave my Mother a small plaque with the following saying:

“Children hold their Mother’s hands for awhile and their hearts forever.”

This plaque has been carefully hung in 4-5 residences, following my Mother as she moved and downsized during the last 30 years.  Today, it has “pride of place” in her bedroom and hangs near the door. 

Yesterday, I was visiting and helping my Mother get dressed and ready for the day.  She noticed the plaque and said it should be revised to read “Mothers hold their children’s hands” and insisted that she would not know what to do if I wasn’t there to help her. Sadly, she recognizes that she is “slipping” and wonders aloud what is wrong with her.  She asks me why she can’t remember the day or date and why she can’t decide what to wear and why she can’t find her purse.  I reassure her that she is doing fine.  I tell her it is common to forget a few things when you get older and explain that the Doctor recently adjusted her medicines which could be causing some confusion and memory loss. 

Later, I can’t stop thinking about our conversation and realize that “role reversal” just doesn’t begin to describe the life of an adult caregiver.  Role reversal sounds so sensible and orderly….yet there is nothing sensible or orderly about caring for an aging parent.  This isn’t the natural order of things…or is it?  Many of my friends are caregivers for their parents too and we all agree that from our perspective…..role reversal is uncomfortable and difficult.   Some of our parents readily accept role reversal, yet others fight the switch at all costs fearing a loss of independence and control.  Role reversal doesn’t occur overnight, but creeps into our consciousness.  Until one day we realize that…. we are holding the hands of our parents and their hearts as well.

We all plan – it is how we bring order to our lives and make sure the important things get done.  But when you are caring for a senior, even the most well crafted plans can’t solve all the problems.  Planning cannot stop a mental or physical decline.  Planning can’t stop a senior from having a bad day and upsetting the plans already in place.  Planning can’t ensure that what you think will happen …..will actually take place.  Planning can’t buffer your emotions when faced with a progressive disease such as Alzheimer’s.

So, why plan?  Why spend time and energy on something that won’t help?  Should we instead just take each day as it comes, with no thought to the future? 

My experience is that planning can help.  It can help a caregiver bring a little structure to a very challenging situation.  Planning can save time too.   And being proactive can ensure that potential solutions are explored ahead of time thereby reducing stress during a time of crisis.

Following are a few planning suggestions for caregivers:

• Create a list of all the important people in your parent’s life and include their phone numbers. For example:  all children and close relatives, neighbors, Doctors and health care providers, Assisted Living personnel, health insurance contact (and policy #’s), attorney, financial planner, minister, etc.  Carry this with you in your wallet.  Then when you need to call someone, you don’t lose time hunting for phone numbers. 
• Take the time you think it will do something and multiply by 2 or 3, depending on your parent’s physical and mental condition.  While it could take you a ½ hour to zip through the grocery store….it can take 3 times longer if accompanied by a senior who moves slowly or is confused about what to buy.
• Build good relationships with the people that care for your parent.  Take the time to meet the new Executive Director of the Assisted Living facility and introduce yourself to new staff members.  Be interested, engaged and respectful when dealing with your parent’s Doctor and their staff.
• Stay attuned to eldercare issues addressed in your local paper.  Is there a new Memory Care facility opening soon?  Have additional programs been added to the Senior Center?  Has the city added transportation options for seniors? 

My sister got married last weekend.  It was a beautiful outdoor ceremony, despite an impending rain storm.  It thundered as they repeated their vows, which made me think of the “The Ten Commandments” movie. Thankfully, the only thing that caught on fire was the Unity Candle and no bushes blazed. 

My Mother was beautiful and enjoyed her role as Mother of the Bride.  With her hair professionally done, a pretty lavender jacket dress and pearls – she looked 15 years younger.  Ever the hostess, my Mother was concerned about the guests and did her best to make sure that those around her were having a nice time.  It was wonderful to see her looking so happy and composed.  It reminded me of other family occasions when she was more engaged and aware than she typically is now. 

My sister and I were overjoyed that my Mother could be present and enjoy the day.  We didn’t care that she wasn’t quite sure where we were or what day it was.  We just cared that she could celebrate with us.  WE LIVED IN THE MOMENT.  It is one we will cherish and remember forever. 

Last week, I traveled from Indianapolis, IN to Litchfield, CT with my Mother to attend my sister’s wedding.  It was a long trip as we got to the airport early to deal with security, took a 2 hour flight to Newark and then rented a car and drove 3 hours to a Bed and Breakfast in Connecticut.  Along the way, we had to take our shoes off, give up our purses for a security inspection, and take escalators, elevators and a train in pursuit of a National rental car.  Everyone knows that traveling today is an exercise in both patience and logistics…b ut when you are accompanying a senior who is not steady on her feet and tends to be confused….. the patience/logistics requirements increase ten-fold.

Planning and advance preparation can help ease the journey.  In our case, I found it helpful to:

• Keep my Mother’s ticket and ID with mine, rather than risk her misplacing the paperwork.
• Consolidate all carry-on items in one bag (meds, jewelry, reading material), so there was less to keep track of during the trip.
• Dress for the security line….slip on shoes, no heavy jewelry, easy to remove jacket.
• Bring an extra sweater, as most airports are freezing.
• Pack snacks in case of airline delays, missed meals and long wait times.  The food court can be a long way from the assigned gate – a walk a senior is not up to.  If a senior has diabetes or a loss of mobility, packing snacks is essential to avoiding missed meals or long walks to the food court.
• Request a wheelchair or flag down a motorized cart to assist with transportation from gate to gate, if necessary.
• Stop when the senior gets tired and sit for a few minutes.  The airport pace is very difficult for a senior to keep up with.  This is especially true if your loved one has a loss of mobility.
• Limit information and do not provide it all at once – just focus on the next step and explain to the senior.  Discussing the entire itinerary i.e. we are catching a plane, then renting a car, then driving to Connecticut... is too overwhelming.
• Remember that the crowds, noise and fast pace of the airport can contribute to a senior’s confusion and anxiety.  Try to buffer them as much as possible by walking so that they are close to the wall and you are on the outside to take the bumps as people push past you.
• Be sensitive to their fears – dementia may cause even seasoned flyers to feel nervous about flying.
• Enlist help – ask someone else to accompany you to help with luggage, logistics and provide moral support.
• Enjoy the senior’s sense of wonder along the way – for them, a plane trip is a rare and exciting event. 

In summary, traveling with a senior should not be taken lightly.  Advance planning is key to ensuring a safe and stress-free trip for both caregivers and seniors alike. Be prepared, be patient and always remember that seniors will need extra special care and attention during the trip.

My mother moved to Indianapolis last August.  The move was difficult, as she moved away from her friends and an area where she had lived for almost 30 years.  Her move into an Assisted Living Facility in Carmel, IN meant she would receive the care she needed, but it impacted her independence when she gave up driving, downsized to a smaller apartment and lost her social network.

The past ten months haven’t been easy for either of us.  My Mother has struggled to adapt to a new place and make new friends.  I have struggled to balance work and caregiving, while maintaining time for myself and the things I enjoy.  We have both struggled to adjust to the dynamics of a shifting Mother-Daughter relationship.

Throughout it all, my Mother has conceded that she likes it here….yet has repeatedly asked me if she can move back to where she used to live.  We’ve discussed this and I’ve explain that her home in Pennsylvania is 11 hours away and that it is probably better if she stayed here, so we can see each other more often and I can help her with things.  She has reluctantly agreed that this is the best plan, but we have both felt sad that she can no longer live as she used to and that her cognitive decline has changed her life in ways neither of us imagined.

That’s why yesterday was a wonderful day and a blessing to be appreciated for a long time.  It started out innocently enough.  I took my Mother shoe shopping.  She needed some sturdy, comfortable flats for summer.  The shoe store clerk was exceptionally nice to my Mother and found a pair of stylish, yet practical shoes.  My Mother selected a summer purse she liked too – so was quite happy with our shopping expedition.  She commented as she left that she liked the shoe store quite a lot and was glad it was nearby.

Later at dinner, she looked at me and said “Can I stay here?”  I responded by saying of course she could stay here, that she lived here now…in Carmel….about five miles from my house.  She responded by saying “Good, I like it here and I like having dinner with you and going shopping.”  Her comments were sincere and something I’ve longed to hear for ten months.  I quietly thanked God for helping her become comfortable in a new place.

Everyone needs a place to belong and a place to call home.  I believe my Mother has finally come to think of Carmel, Indiana as home and I am grateful and thankful that she is happy to be here. 

Recently, a colleague made me aware of a free, on-line publication about Alzheimer’s, The Alzheimer’s Daily News - http://alznews.org.  I signed up for the daily e-mails with some trepidation.  I wasn’t sure just how much I wanted to know – given my family’s history.  However, I finally decided that knowledge is power and signed up for the newsletter.  Some days the articles make me sad, some days they make me afraid, some days they give me hope and, thankfully, most days they help me cope. 

Yesterday’s edition contained a story about a keynote address presented by Jolene Brackey, the author of Creating Moments of Joy for the Person with Alzheimer's or Dementia.  I thought the advice she offered was some of the best I’ve read and plan to order her book.  Her talk focused on everyday situations and realistic approaches.  One of the best bits was her comment about body language.  Her point is that a person with dementia or Alzheimer’s may not be able to communicate as they have in the past…but that they can still read body language.  Therefore,  it is important for caregivers to convey a relaxed and open posture and positive mood.  What a great idea and something caregivers should try to achieve, although it may take some practice!

To link to the complete article, please click here.

To view the book on Amazon, click here.

We thought we were organized.  We thought the file in my mother’s desk labeled “HLK will” actually contained her will.  We thought all we needed to do was to have the will reviewed by a local attorney, once my mother moved to a senior residence in Indiana from Pennsylvania. 

That was until we looked in the file and realized that “the will” was not there.  We looked in the adjacent files, we looked in the safe deposit box, we looked everywhere.  NO WILL.  To this day, my sister and I have no idea what happened to it.  We knew it was reviewed and updated by a Pennsylvania attorney a decade ago.  We always assumed it was in the file.

The problem was we assumed.  We assumed the will had been efficiently filed, labeled and housed in a place that made sense.  What we discovered was exactly the opposite – nothing made sense about its disappearance.  To this day, we don’t know where it is.  There is a chance my Mother “hid” it in a safe place and forgot to tell us.  For all we know it is taped to the bottom of the dining room hutch that we sold at auction.  Or perhaps it was inadvertently thrown away with the junk mail 

Thankfully, I remembered the name of the law firm in Philadelphia that my parents had used many, many years ago.  However, the paper chase did not end there.   The suburban branch office my parents used had closed.  So, I contacted the downtown office and learned that they had transferred my mother’s file to a different law firm at my mother’s request about five years ago.  Several phone calls and an hour later, I located the will with the help of a sympathetic paralegal.  Copies were quickly dispatched via e-mail to the Indiana attorney for review.

But what would have happened if I hadn’t known the name of my parents’ first law firm?    What would have happened if we couldn’t find the will?  The sad fact is that my Mother’s wishes would have been unfulfilled and a probate court would have made the decisions. 

My advice to everyone is to look now for important documents and review them to make sure they are up to date.  Then file them appropriately and make sure family members know where they can be found in case of an emergency.  

When I became a stepmother to my then 7 year old stepson, it was easy to find people to turn to for advice.  For I lived in the midst of a community of  mothers……in my neighborhood, at work and at church.  These built-in communities provided support and guidance as I assumed the joyous role of being a Mom to a precious little boy named Michael.  That was 20 years ago and the friendships I made with those other Moms still exist. Today,  we continue to share stories about our “children,” but have excitedly expanded the conversation to include “grandchildren” and the happiness we experience as we watch our children become parents. 

As a caregiver for a parent, I find this type of community missing in my life.  There is not a natural group of people, who are caring for their parents, as readily available to talk with and exchange experiences.  Some organizations, such as the Alzheimer’s Association, offer support groups that do wonderful work.  But it is not the same as simply walking out the front door anymore.  The fact is that caring for children is much more common than caring for parents…..or at the very least…..more frequently discussed.   

I’ve found that I need to actively seek out support and this has come from many different sources.  I frequently browse the eldercare section at my local Barnes and Noble.  I talk to my RN friends and co-workers.  I subscribe to the Alzheimer’s e-newsletter.   But the outpouring of support that comes so naturally when caring for children at the beginning of life is rather hard to find when caring for parents at the end of life.

Recognizing that a lack of community and support is a common occurrence among senior caregivers, my company recently established an on-line complimentary “Caregiving Community” to provide answers to difficult caregiving questions.  The goal is to provide assistance and support to adult children who are worried or concerned about their parents.   Each month, My Health Care Manager will send members of the “Caregiving Community” an e-mail update which will focus on common caregiving concerns and practical solutions in a quick, easy to read, question and answer format.   The first issue tackled the following:  “Dad’s car has new scratches and dents.  Is it time to take the keys away?” 

I’d like to personally invite you to join the “Caregiving Community.”  Its goal is to help you….help your parents.  Please click here to join the “Caregiving Community”.  I also encourage you to e-mail your questions to CaregivingCommunity@MyHealthCareManager.com.  These will be addressed in a future issue.  Rest assured, your e-mail address will not be shared with any other organization.