Initially when my mother became unable to care for herself toiletry wise, she began contracting upper urinary tract infections.  This inflammation, besides being very painful,  seemed to increase her confusion from the ongoing dementia. 

Nursing homes are limited in what can be provided to patients in the way of toiletry hygiene.   When I asked about this for my mom, I was told they could use wet washcloths with some soap.     

When my mom began having the UTI’s, I decided to supply wet wipes such as are used for babies.  After I began keeping a generous supply within easy access for her care, the UTI’s became a thing of the past.  This I discovered early on in her nursing home care, and I was careful to maintain a ready supply of wipes at all times.  The supplier that I settled on was Family Dollar with a reclosable box of 60 or so  for $2.00. 

Also, I found the Family Dollar $1 boxes of tissue to be greatly superior to the ones supplied by the nursing home.

The one big thing that meant a lot for our mother was to be dressed early in the day.  Her day aide Linda actually came to work an hour earlier than her schedule demanded in order to bathe and dress her patients before breakfast.  Linda told me the day went much better when her patients were dressed early.

Another comfort for my mother was the oral hygiene maintained by her aide.  Even though she had lost her dentures more than a year and a half before her passing, her aide daily cleaned her gums and gave her a bit of mouthwash  diluted with water to rinse her mouth for freshness. 

Our mother, as you may remember, had to be placed on Medicaid a year before her passing.  I must say that her quality of care did not change.  Her aides on each shift maintained her hygiene and seemed to be even more vigilant after she entered the coma near the end.  We as her family are deeply grateful for the excellent care she received, especially when we were not around. 

Along with all of this I will say that we tried to express our appreciation to her caregivers as often as possible in ways that were acceptable.  One treat that the staff  particularly enjoyed was a basket of individually wrapped candies brought at various times.  Also, though done infrequently,  handwritten notes were appreciated.

When a loved one has a lengthy stay in full nursing care, the caregivers and other patients become a second family.  When possible I tried to be thoughtful of our mother’s roommate in little ways.  In a very small room our having a good rapport with the other family members also made life more pleasant for our mom.

Over our friendship I have long enjoyed hearing stories about her most interesting life.  A few weeks ago when the weather was inclement for a lunch ‘out’, I asked if she might show me a few photos from her childhood. 

As I arrived I was met at the door with an armload of pictures, many of them in very good condition.  We headed for the kitchen table.

I had a plan in mind!  I had brought my portable scanner and a small digital recorder.  We were going to have some fun!

To the pleasant tinkle of the windchimes outside her kitchen window my friend kept me mesmerized with her clear memory of people, places, and events from her early life.  I could hardly keep up! 

After three hours we were happily exhausted and I headed home to upload her photos and recorded photo stories onto a website with free storage for pictures,  stories, video, and photo stories.  Click here to view a short video that introduces Legacy Stories. 

I had all I needed to set up my friend’s free Shoebox site, which was an email and her birthdate.  I created a special password for her and was ready to go.  First I uploaded the photos and recorded audio stories into my computer. 

The equipment I used was a Flip Pal mobile scanner and an Olympus digital voice recorder (VN-8100PC).   The site accepts only MP-3 audio downloads. 

I did attach a small mike to the recorder, a Radio Shack 33-3041, for greater clarity.  Both the scanner and recorder are extremely simple to operate.

My friend’s free site on the Legacy Stories site is good for 100 photos, one video story, one album of stories, and five photo stories.  Eventually she will need upgraded to a full storage ‘vault’ to store unlimited photos, stories, videos, and photo stories.

Her site is restricted to family and friends through her own unique password, but you may click here to view a sample talking story – “My Sister Joan”.   

I returned a few days later after our initial visit to share a few pictures and photo stories, which I had downloaded into her free site, with my friend’s son.  He was amazed and my friend was bursting with pride as we viewed her unfolding legacy.   After viewing what we had begun, her son told me they definitely wanted to go forward with more.   

What I will be doing is returning once a week or so to continue recording my friend’s stories and scanning more photos,  assisting her in passing on the rich heritage of a lifetime to her family as long as she is able.

The uniqueness of Legacy Stories is the ease and pleasure that can be enjoyed in the process, one story at a time.  The approach is aided by weekly/monthly suggested story prompts.

For a loved one and caregivers experiencing the stressful period of early stage dementia, this kind of activity can offer purpose for your loved one to share his/her life lessons and values in a most enjoyable way.   

The program launched in 2011.  Please visit the site to find a personal legacy advisor who may be located in your area to help you get started saving your loved one’s legacy.

To Not Fade Away is a groundbreaking documentary that illustrates the effects of early onset Alzheimer disease from a patient’s perspective.  Narrated by Lea Thompson, To Not Fade Away continues the story of Marie Vitale and her decline due to the disease, as well as the challenges that impact both her and her family.  Click on the clips below to preview this upcoming documentary:

http://podcast.rl.tv/54816small.html

http://podcast.rl.tv/45669small.html

http://podcast.rl.tv/45668small.html

http://podcast.rl.tv/45666small.html

The following suggestions were sent to me by Roy Lamont to share with you.  

“Caregiving requires a level of attention unmatched by most endeavors. Add to that the inherent stress of the holiday season—with the travel, family visits, huge meals, and of course, gift-shopping and giving—and you may find yourself overwhelmed. That said, being a caregiver doesn’t mean you can’t get into the holiday spirit. As a caregiver it is important to be prepared. Here are some tips to be ready for the New Year:1)     Stay up to date on what’s current in healthcare, including laws (i.e. the Affordable Care Act), new medical devices, medicines, and treatment options.  Mayoclinic.com has a “Research” tab on its homepage dedicated entirely to advances in the health profession and Healthcare.gov is a great source for legal information. 2)     Be sure you have respite care, or at least understand how to access it in the case of an emergency. There are many resources at the local and regional level. Also check out the ARCH National Respite Network.3)     Develop an emergency plan (if you haven’t already done so) to ensure the safety of your patient if you are unable to provide care. A comprehensive Google search will uncover many resources, including the National Association’s for Home Care and Hospice emergency preparedness packet.4)     Arm yourself with the right “tools,” including appropriate medications, no-rinse pre-packaged cleansing cloths to making bathing easier, and essentials like one-step barrier cream cloths to cleanse and protect the skin.”

As a postscript I want to give you an update regarding The Daffodil Vase.  The gallery that has been representing the vase informed our family a few days ago that a museum in Ohio has purchased it for its appraised value.  We will now be able to visit from time to time, continuing to enjoy its beauty and memories!

To Not Fade Away features interviews with key researchers at the Blanchette Rockefeller Neurosciences Institute, Johns Hopkins University, and University of Pittsburgh Medical Center and discusses treatment options for Alzheimer’s, tips experts believe can slow down memory loss and factors that can increase risk, such as: diabetes, head trauma, high blood pressure, stroke and heart disease.

To Not Fade Away includes comments by two legends who recently announced their Alzheimer’s diagnosis: University of Tennessee Lady Volunteers head coach, Pat Summitt and country music icon, Glen Campbell.  Summitt, the winningest coach in NCAA basketball history, is facing her diagnosis with her signature ‘tough as nails’ persona intact, and country music singer Glen Campbell, talks about the challenges of his disease while performing on his farewell tour.  In addition, Maria Shriver and Jay Rockefeller recollect how the disease ravaged one of their parents and their determination to fight back.

This touching documentary tells a story about Alzheimer’s like it has not been told before- from the point of view of a patient, her family, experts and doctors. Please let me know if you think the show is something you would like to write about on your site. I would be happy to provide additional information, as well as clips from the show if that would be helpful.

There are certain of her recipes that I have used so often they are second nature to me now  and I don’t need to look up anymore.  Others I came upon last night that I have only tried maybe once or so, because they demand more time than I am willing to give, such as 12-day pickles, tomato juice from garden tomatos, fruitcake, and potato bread.  

Looking back on it, our mom really loved cooking.  It was one way she was able to transmit her caring of friends and family.

For me approaching cooking early in my marriage was a formidable task.  To begin with I had absolutely no confidence, as I had never done any except for a brief time sharing a house with fellow graduate students one summer.   I took the easy way out at home growing up.  My mother cooked and I washed the dishes and set the table.  I regarded cooking as a job I had to learn to do. 

I would first agonize about what I could actually make that people would eat, then make a copious list of every step involved up to setting the dishes on the table.  My husband had actually more experience in the kitchen than I did, coming into the marriage.  But in our day it was understood that the wife was in charge of household duties.  This was when TV dinners were pretty much the choice for prepared food, long before supermarkets had extensive delis and extensive selections of  foods ready to eat.   

To this day I still make my step-by-step to do list but am not afraid to buy from the deli and do experiment a bit, having gradually gained in confidence. 

The first ready made foods my mom would have encountered were TV dinners.  I never knew her to buy one herself.  The nearest she ever came to serving prepared food was fish sticks when they came out and Chef Boyardee pizza in a package.

One of the first signs we knew she was having memory difficulties was in her cooking.  I remember an autumn Sunday in 2005 when she had invited her family over and we were a bit late arriving from our trip, my aunt and cousin had arrived early to help her get the meal ready.  I remember thinking how strange that she should need help. 

 Then a few years later after she came to stay with us in Ohio she would want to help me in the kitchen.  The one thing she could still do was make potato salad.  We had potato salad often.  (My brother later told me that was what our mom would fix at his house.)   And then the day came when she couldn’t even fix the potato salad.  I now realize how hard that must have been for her, watching me do it all when she had been so good at it.

This project includes a documentary that is the story about his climb of  Mt. Kilimanjaro with his father-in-law an adventurer, the author himself as a father-to-be, and his own father suffering from Alzheimer’s.  To view a brief video on the project and how you may participate, go to:   http://www.kickstarter.com/projects/zachjordan/carpe-kilimanjaro-a-transmedia-project .

Four of us have lost our loved ones within the past year and a half, the most recent having been two weeks ago.  Following our support group tradition each person present had a turn to speak. 

Three spoke about how much participation in the support group had guided them in caring for their loved one.  One in particular said she might have been able to keep her mom at home longer had she joined the support group earlier in her mom’s illness.  Another mentioned how her approach to care of her loved one had helped her relax as she gained more knowledge through group attendance.

I was able to voice a concern I had had for my mother that I had never brought out to the open before.  The concern was that I never had a talk with my mother about what had really happened to her, perhaps helping her understand that it was not at all anything she had caused.  I remember early on her frustration about not being able to care for herself as she normally did.  She would say, “I just don’t know what to do!”  How I feel for what she had to go through. 

In the middle of caregiving there were many, many times that I voiced frustration with my mother when it was damaging emotionally for both of us.   Regular attendance at the support group allowed me to step back and, with the support of our medical specialist leader and group members, review what happened and brainstorm better ways of dealing with the situation in the future.

Over time the support group participation  has fostered a unique bond that is precious to each of us.  We have felt the freedom to express our thoughts and know that whatever we said was safe within our group.  There has been an empathy for what each of us has been going through.  That bond keeps me coming even though I am not still actively dealing with the caregiving of my mom. 

To our surprise there were two boxes labeled No. 109.  Somehow when our mom’s bank box ownership was transferred from her original bank to the present bank from a merger, she ended up with two boxes, one 3X5 and one 4X6.  My brother’s heart sank when the first box was opened and discovered to be empty.

He was walking out the door of the bank when the manager called him back.  Upon checking some records the manager discovered the second box.  It was opened.  And to my brother’s amazement there was the will and more.  The second item in the box was our mother’s living will.

We both were emotional about this discovery.  Our mom, true to her very nature, endeavored to manage her affairs to the best of her ability. 

However, the onset of dementia interferred.  When things began changing for her, she began moving stuff around in her home, I guess intending to ‘keep things straight’ in her perception. 

In the beginning one of the first areas where things began changing was her inability to pay bills on time and keep her checkbook in order.  She asked my brother Jim for help.  It was at this point that he may have been able to request her permission to locate certain key documents.  One of those would have been the key to the bank box.   

As you probably realize, if you have experienced a loved one suffering from dementia, the onset is most difficult to pinpoint.  Change for our mom was a gradual thing.

This past weekend when I was searching for the bank box key, I found receipts for trivial purchases as far back as the year 2000.  Whether she was beginning to have difficulty as early as then, we are not sure.

I took my mother to last year’s reunion.  I well remember that day for the mishap that occurred enroute — leaving my purse in a service station rest room.  Going this time without her was emotional for me.  I feel that so much of who I am comes from her.  I most certainly have traits from my dad too but never remember focusing on him as much as I have my mother.  Again, my drive to and from was a solitary pursuit flooded with memories. 

The second reason for the trip, as I mentioned, was to try to locate the key to her bank box where we believe the original copy of her will is.  Possession of the original is imperative in maneuvering legal hurdles. 

It was the funeral director who made us aware of the fact that at her death our powers of attorney ceased.  Little did we realize this fact had a direct bearing on our rights at the bank. 

The first thing the bank manager asked me upon my arrival on Monday morning was how is your mom–  I then replied she passed on August 17th.  He then said, oh, that makes a great difference in what we can do for you today.

I then asked whether he would try the keys I had managed to collect from her home to see if one of them might work to open her bank box.  I showed him what I had brought.  Sadly none of them were the proper shape. 

He then took me into the safe and showed me her bank box, No. 109, and took out the key that did fit to show me what it looked like!  And that was the end of it.

He told me that without me or my brother producing the key, bank rules dictate drilling a hole by a locksmith.   The cost of drilling the hole was $150. 

I was prepared for this bill.  Unable to sleep the night before, I went to work going through my mom’s bedroom drawers, item by item.  I found a gold chain that I had given her as a gift years ago.  Monday morning I took the chain to a jewelry store located a few doors down from the bank, and to my amazement was paid exactly $150 for it, enough to get in the bank box. 

However, I was made aware of another bank rule, that my presence as a daughter was not good enough; it had to be the administrator of the estate, my brother, who would need to be present when the box was forceably opened.  Even then, the manager said, we might need to get a court order to open the box. 

Our mother’s attorney tried to intercede for us to no avail.  The new manager was intent on following bank protocol to the letter. 

Throughout the day I was, of course, in contact with Jim my brother.  Our patience wore pretty thin at times. 

My question is in all my reading about caring for our mom and settling her affairs, why was this important information omitted?  Perhaps it is assumed that people like my brother and me know; but we didn’t, and we’re paying for it.