The Sad Side of Caregiving for Family Members with Dementia

If you are a family caregiver, you know the difficulties of taking care of an aging person with any form dementia.  They forget so many things that you remember and may feel are important.  Eventually, they may forget your name and who you are.

If you’ve been reading this blog, you know that I take care of my god-sister.  She is a widow with no children, siblings or close family members – except me and my family.   During the the first ten years of my life, I was primarily raised by my god-mother.  Even though Gladys is old enough to be my mother, she and I were raised as sisters.

The Gladys that I grew up with was a strong, confident, self-sufficient woman.  Today, she is just a shell of her former self – she is the exact antithesis of what she used to be.  Granted, she has flash backs and threatens to knock the sh## out of one of the other clients at the adult day care center; but that’s rare.  Her body is weak, she is totally reliant on me and Fred (my husband) and her memory fades more each day.

Gladys knows who I am but she doesn’t know my name.  She often confuses me with my oldest daughter, Nichole and as a result she calls me Nichole.  My husband, Fred and daughter, Anita don’t have names.  Gladys manages to call them without using a name.

It’s very difficult for me to come to grips with this Gladys because I still see the strong, confident woman I knew in the past.  Yet, I realize that the past is exactly that – the past.

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Family Caregivers Workshop

We are in the midst of planning a workshop for family caregivers.  The location has been reserved and deposits paid.  The date is August 15.

So far I have two speakers committed:  one is the program director at an adult day center and the other is a registered nurse at an adult day center.

To insure that the workshop is relevant and what family caregivers need, I would appreciate your feedback.  We are looking at a four hour workshop, from 10 AM until 2 PM.  What do you think of the following format:

• four speakers, 35-40 minutes each
• 10 minutes for questions after each speaker
• last 30 minutes for open sharing
• workshop fee, $30 per person

Also, what topics would you suggest?  If you were to attend a workshop for family caregivers, what are your three most pressing issues that you would want addressed?

We are excited about this workshop.  I look forward to hearing your suggestions.  Also, if you are in the Atlanta area on August 15th, I’d like to see you at the workshop.  More specifics later.

UPDATE:  Register here

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Update on Gladys’ Dementia and Other Issues

Dementia

I took Gladys to see the doctor on Monday.  Other than her dementia and severe arthritis, her overall health is pretty good; but as I suspected, because of the dementia she is declining.  I talked with the doctor and he ruled out her meds and explained it is just the nature of the dementia.

I explained how over the past two weeks her memory is a lot worse, night time incontinence has become daily instead of occasional and her increased difficulty with simple tasks.  I asked him why the changes were so sudden.  His reply was that though the changes seemed sudden to me, that they were probably gradual because at first she was able to compensate but has gotten to the point where she can’t compensate any longer.

So we move on to what needs to be done.

The Doctor’s Staff

A few months ago I mentioned that I was not happy with the staff at the doctor’s office.  They were not good at making appointments they said they would make for referrals.  I had to call back several times to check on prescriptions and other issues.  They would tell me they were working on it and I didn’t hear from them until I called to follow-up.  In essence, their follow-up was atrocious.

Anyway, during Gladys’ last appointment in February, I had a talk with the doctor and told him how I was frustrated with his staff.  I also told him that I thought they were inefficient and incompetent.  When he told me that the nurse would make an appointment with a dermatologist for the mystery rash on Gladys’ leg, I said “Give me the number, I’ll make the appointment myself.  If I wait for your staff, the rash will be gone or evolved into something else.”

What I did not tell him was that I was going to look for another doctor for Gladys.  I probably didn’t need to tell him because I’ve been told that when I am perturbed or annoyed that is shows all over my face.  When we went to the office on Monday, the entire staff (with the exception of two people) had been replaced.  The two people who remain are the only ones I thought were competent.  Obviously, I was not the only person who had complained.

The moral of this story is speak up and let doctors know when you have a problem with them or their staff.

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