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.

About two weeks ago, my husband and I were leaving church but his car key wouldn’t unlock the door.  Thinking his key battery was dead, I tried my key and it wouldn’t unlock the door either.  After a few minutes, it finally worked.  Thinking it was a fluke, we forgot about it until a few days later, the car wouldn’t start.  I called my mechanic who told me that after about six years, the car can begin to forget the key.  My car is 10 years old, so supposedly it is overdue.

I put an update on my Facebook page that said:

My car and key have become estranged. The car doesn’t recognize the key – gotta order new ones so I’ll be out of commission for a while until new key arrives. Almost got stranded at Walgreens yesterday when the car would not start.

What I wanted to say is – my car has Alzheimer’s; but Facebook isn’t the place to put a politically incorrect statement without an appropriate explanation.

I looked at the key to my car and thought about how it reminded me of the brain and dementia.  They key has two batteries in it that power locking and unlocking the doors and the trunk.  But it also has a little computer chip in it that is kind of the brains of the car that tells the key which doors and trunks to unlock.  In addition to starting the car, the key aids in programing driver preferences.  For instance, when I start the car with my key after my husband has used the car; it also adjusts the seat, lumbar support, side view mirror and steering wheel position to my preferences.  My husbands key does the same.

To rectify this problem, we had to take the keys back to the dealership.  They ordered the keys from Houston to be programmed based on the VIN number for the car.  Of course, I’ll have to reset my preferences, but when I get my keys back, they should recognize my car so it will do what it is supposed to do. Right now I am waiting for the dealership to send me new keys.

Wouldn’t it be wonderful if our brains could be re-programmed like car keys.  What if someplace there was a blueprint of our brains that could be reprogrammed when parts of our brains forget what they are supposed to do?  Wouldn’t it be great if it was just that simple?

Note:  My new key came in after I finished this post.  We had to let it sit in the ignition for about an hour to download information from the car.  Amazing!

Don’t you think it would be great if we could do this with people?

Of course by the time they decided they needed to keep Gladys overnight, we had been at the hospital for five hours.  We were taken to  a room where a nurse came to input Gladys’ information into their records.  Everything was computerized and it was the nurses first day on the job.  It took another hour to put in the same information that I had given the emergency room personnel.  I really didn’t understand why it had to be done again.

She’s So Sweet

After getting Gladys settled in, both the nurse and the doctor on duty came by to get acquainted with me and Gladys.  When they were leaving both of them looked at me and remarked, “She’s so sweet, she’s precious.”  I just looked at them and smiled.  I knew there would be trouble.

Gladys was scheduled for an MRI and when they came to get her she wanted me to go with her but I told her I couldn’t.  I could see the fear in her eyes because she didn’t understand what was going on.  I tried to explain that she was going to get a test done and that they would take good care of her.  After she left, I told the nurse that they would need to raise the rails on the bed and watch Gladys because she would try to get out of the bed, even though she can’t walk without her walker.  I went home while she was having the MRI.

Restrained and Sedated

When I came in the next morning Gladys’ roommate told me that the nurses had to restrain Gladys, the nurse told me they had to sedate her.  I had a real problem with her being sedated because I know the sedative causes her brain to malfunction.  Gladys did not know who I was.  I could see it before I even talked to her.  I asked them not to sedate her again.  If she became combative, I wanted them to call me and I would come back to the hospital.  We only live 10 minutes away.

What the hospital didn’t understand is that Gladys did not become combative because of the dementia.  She became combative because she couldn’t have her way.  That was her MO, when she couldn’t have her way she either had a tantrum or she would fight.  Fortunately, there were no more problems.

All Is Well

After three days were were able to take Gladys home.  There were some issues that were the result of massive doses of antibiotics, but they eventually cleared up.  All is well but Gladys is a little slower and her cognitive abilities have diminished a little more.