Yesterday I walked in Georgia’s Alzheimer’s Association’s Walk To End Alzheimer’s.  My family and the Jones family joined to form the Family Caregivers Team.  Pictured here is seven of our twelve team members.  Together we were able to raise $2,500 dollars for Alzheimer’s research.  Both of our families have lost loved ones to Alzheimer’s disease so we know first hand how important it is to raise money for Alzheimer’s research.

In the picture above and below, you see us holding flowers we were given at sign-in.  There were three categories of flowers:  yellow flowers if we were walking in support of someone with Alzheimer’s, purple flowers if we were walking in memory of someone who had died from Alzheimer’s and blue flowers if we had been diagnosed with Alzheimer’s.

During the Opening Ceremonies we were asked to raise our flowers if we had Alzheimer’s; raise our flowers if a loved one had died from Alzheimer’s; and raise our flower if we care for or had cared for someone with Alzheimer’s.  Almost every flower was raised for those who had taken care of someone with Alzheimer’s disease.  It was a very emotional and eye opening moment.  Thousands of purple and yellow flowers raised in the air.  YET, so many people in this country have no idea what it means to take care of someone with this dreadful disease.

People of all ages participated in the Walk -  babies in infant carriers and strollers and young children walking beside their parents;  tweens and teens, college sororities and fraternities, young adults and not so young adults.  Everyone had gathered for the Walk To End Alzheimer’s.  As I looked around at some of us (myself included) who were overweight, it was quite apparent to me that we did not walk regularly and would probably have to take an Epsom salt bath when we got home.  But the aches and pains didn’t matter, we wanted to support this very important cause.

This gentleman was quite an inspiration for me.  Can you see his walker in the picture?  By the time I took this picture we had walked about three quarters of a mile and we were on an uphill slope.  This man had a caregiver with him who is off to the side but close enough should he need assistance.  I don’t know if he walked the mile and a half track or the three mile track.  I was just impressed that he participated.

It has been almost a year since I blogged.  After Gladys passed, I just couldn’t seem to find the motivation to write any articles.  This Walk was just what I needed because it gave me something to want to write about.  If you’d like to see all of the pictures I took, you can find them here on our Facebook page.  If you would like to donate, you can do so here on our Alzheimer’s Association Walk To End Alzheimer’s page.

Next year we’re going to try to recruit a bigger team.  Why don’t you form a team where you live?  These walks are going on all around the country.

Dementia is mental disorder that causes memory loss, a decline in intellectual and language skills, difficulties with motor skills and judgement.  It can be caused by a variety of diseases or conditions.  In Gladys’ case, her dementia was the result of a massive stroke, heart attack and seizures that occurred in a very short time span.

Gladys has lived with us now for two years, over which my family and I have witnessed her steady decline.  At first her symptoms declined gradually but in the past four months it has been difficult to keep up with her mental and physical changes.

Why I Call Dementia a Sneaky Thief

I started calling dementia a sneaky thief about six months ago when Gladys could no longer go the the bathroom without assistance.  It was as though someone snuck into her room and stole a life skill that so many of us take for granted:  pull down pants, sit on commode, use toilet, stand up, pull up pants.  A simple life skill that disappeared like a thief in the night.

At that time, Gladys still remembered to go to the bathroom but she would sit on the commode with her pants still up.  She had no idea that she had not performed the necessary task of pulling her pants down.  Dementia stole her ability to reason.

Right now dementia is just waiting to snatch away a few more of Gladys’ life skills that are teetering on the cusp of disability:

• swallowing medicine
• standing and walking
• feeding herself
• use of her left arm and leg

A thief is someone who steals something from someone else with the intent of keeping it (or selling it).  Over time, dementia steals so many of our life skills.  Simple things that we take for granted – things we do without thinking.

These are just a few of the things that my family deals with.  If you are a caregiver, what has the sneaky thief stolen from your loved one?

Note:  Image of the brain from http://faculty.washington.edu

As I write this post my god-sister, Gladys, is listening to a CD – The Best of Nat King Cole.  She is sitting in her lounge chair just as satisfied as she can be.  I am amazed to hear her sing along.  She is smiling, she is happy and she is content.

In contrast, just yesterday, Gladys was extremely agitated.  She was crying, her eyes were tightly closed, her teeth were chattering and her hand was closed into a tight fist.  We didn’t know what was wrong with her and she couldn’t explain why she was agitated.

I bought the CD on eBay for $1.50.  Shortly after it arrived, I asked Fred to play it for Gladys.  Had I known the effect it would have on her, I would have done so sooner.  When I finish this post, I’m going to call my mother and ask what other music I should buy.

This past Monday our home health aid and the nurse arrived about the same time.  They were surprised that it took both of them to get Gladys out of her chair and stand her up to her walker.  Of course Gladys told the nurse that she felt fine and everything was going well.  They looked at me, surprised at the effort that it took for both of them to help her up.  I just looked at them and said “Welcome to My World.”

More change is in store because my husband, Fred, starts working next week.  It will be an adjustment because he helps me a lot with Gladys.  I have added another day for our sitter, so that will be some relief and allow me to run errands and do other things I need to do.

All we can do is take it one day at a time and do the best we can.  It gets a little frustrating but so far we’re managing.

Car Issues

We all know that car problems occur when we least expect them or are the least prepared to pay for them.  Over the past two months we had the key problem that I talked about in the previous post.  That problem was more frustrating than anything and unreasonably expensive.  Just before the key problem we had to replace the front struts.  Now it’s the catalytic converter.

Job Issues

A lot has been going on at the church.  Recent staff changes has caused all of us to pitch in more to make sure things don’t fall through the cracks.

Caregiver Issues

Last month Gladys’ adult day care told me that they didn’t think they would be able to accommodate Gladys much longer.  She was beginning to require too much care.

• she needs help sitting down and getting up
• she needs help going to the bathroom and adjusting her clothes
• she’s getting confused at mealtime and forgets how to use her utensils or thinks her banana is a fork
• she’s moving extremely slow
• she’s not participating in activities because she keeps falling asleep

Last week the day care called and said that April 30th would have to be Gladys’ last day.

When I got the first call, I began to explore our care options and possible funding assistance.  Unfortunately, her income just meets the cut off amount to qualify for assistance.

Hospice Help

About nine months ago I met a young lady from Hospice Advantage who told me to contact her if I ever needed any help.  Like so many other people, I thought hospice only took care of people who were dying.  Not So!  I contacted the young lady, told her my situation.  This is what happened:

• a nurse came out to evaluate Gladys (she qualified for services)
• a nurse visits twice a week to check Gladys’ vitals and her overall condition
• a home health aid comes by three times a week to bathe, dress and groom Gladys
• they supply her disposable briefs, disposable underpads, perineal wash, dry skin cream and some of her medications
• a social worker was assigned to assist us
• we have access to an on-call nurse 24 hours/day
• they provide 5 days of respite care per quarter
• gave us a list of recommended agencies and private caregivers

The services offered by hospice don’t resolve daily care issues but the services they provide are a big help and free up some finances.

Care options

• Quit my job and take care of Gladys full-time
• Hire an unemployed friend or church member to take care of Gladys
• Employ the services of an agency that provides CNA’s and trained caregivers
• Employ the services of an independent CNA or trained caregiver

Here’s where we are with care options:  1) I need my job; 2) hiring a friend or church member may not work out and potentially damage relationships; 3) agencies offer a good service but are too expensive (for us) for long term care.  That brings us to 4) employ an independent caregiver.

I went through the list provided by hospice and called for rates.  I contacted the agencies and the private sitters.  I was very impressed with one of the private sitters and contacted her references.  She is primarily a live-in hospice caregiver but I am only looking for 3 days per week.  Her previous clients gave her outstanding recommendations.

We will interview her this afternoon.  I’ll keep you posted.