Backstory – The Beginnings

Introduction Dementia praecox (later schizophr...

My mother was officially diagnosed with dementia about four years ago when she was 85. Knowing what I know now about the disease, I can clearly see that her early symptoms started a number of years earlier – mostly forgetfulness and forgetting where she put things — but also the inability to remember new tasks like using Web TV.

Her longtime “boyfriend” of about 26 years – a remarkable man, T., who will be turning 97 in December and who is as sharp as a whip — mentioned some things to me that he was concerned about. I guess because I wasn’t in Florida to see what he was he was talking about, I took some of his comments as perhaps being a little over exaggerated. Perhaps I was in a modest state of denial but started talking to my mother about moving to Texas to be near me.

Following a fall shortly after her 85th birthday, she required hip surgery and spent a bit of time in a rehab hospital, followed by home health care. My brother was with her at the time of the fall and stayed with her through her surgery. I followed up, spending two weeks with her. At this time, I discussed with her about moving to Texas again and we decided that was the next logical step as T. had some physical limitations and he didn’t need to be worrying about my mother, which he already did.

We sold her condo and arranged for her to move into a progressive senior community near me that has 3 phases of housing — Independent Living (IL), Assisted Living (AL) and Nursing care.

I was also able to get her in as a new patient with the area’s top geriatrician. My mother went through a battery of cognitive tests, etc., and it was determined that she had mild dementia. That was three years ago.

Fast forward to now, and her condition this year has progressed to the moderate stage. I noticed subtle and not so subtle changes – more difficulty with word finding and even more difficulty in trying to express her thoughts, forgetting how to operate the microwave, difficulty in using the TV remote, forgetting at times the sequence of putting make-up on, and not eating enough (she has a full kitchen in her apartment and is on the dinner only plan).

From the very beginning here she started working with a speech therapist and a physical therapist to help work her hip and to just go through some general body strengthening exercises.

We’ve all talked on and off about making the move to AL, and that was the purpose of selecting this senior community — the ability to seamlessly move into it.

Prior to now, my mother has not been so receptive, rolling her eyes anytime AL was brought up to a flat out “no!” Her speech therapist refers to her as “the queen of cover-up!”

But, the time has now come. There have been recent incidents that scream “AL” at me. And while I’ve been wrestling with this, I know it’s the right thing to do. I think my own hang ups about AL had me considering other options like having an aide come in to make sure my mother eats a good meal and takes her morning and evening pills — my mom’s a late sleeper and her first meal of the day probably isn’t until 11:30 a.m.– but I believe she is needing more of the personalized attention one finds in an AL setting.

We have visited the AL premises, looked at floor plan options and about once or twice a month visit my friend’s mom who is there. Just last week a couple from IL moved into AL, so she will know some people.

Like all family caregivers, all I want is for my mom to be safe and happy. I am continually learning how to not get frustrated and lose patience when she’s unable to perform what appears to me to be an easy task or when she forgets to take her meds. She’s not doing this purposely. She just can’t help it.

In my web searches, I came upon some messages to caregivers from the Alzheimer’s Association. Two points struck a chord with me:

• One of the biggest challenges you face is to accept what is happening.

• You, not he or she, will have to change. Your loved one’s ability to change will become extremely limited and will diminish as the disease progresses. You will have to learn to alter your expectations and reactions.

I’m working on this.



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