A Short Interview

It is the start of a new year and I thought I'd ask Mom a few questions about what 2011 brought to her and Lyn.  We decided to approach it as an interview.  Mom's got a lot on her plate so we did this via email.  That way, she could think about her answers and respond when it was most convenient to her.  Here is the exchange:

1.  It has been six months since Lyn was diagnosed with dementia.  After the initial shock of the diagnosis, how has it changed your daily life as Lyn's care giver?

I am still dealing with the shock.  I am now hyper-vigilant with her.  I try to wait till I see a change happen 3 times before I consider it part of the new norm.  I work very hard to be patient with her and hope she's not manipulating me.

2. Since the diagnosis, you've been through a series of physical as well as psychological tests with her.  Was there anything from all the diagnostics which provided you more insight into what is going on with Lyn?  What were the good things about the diagnostic process?  What were the frustrations with the process? 

I think the diagnostics were pretty much a waste of time.  The Ph.D (clinician) will not acknowledge dementia as a diagnosis but she agrees Lyn's not depressed.  I don't believe there were any good things in the process since no one other than the Physician's Assistant no one really listened to me.  The frustrations?  No one really listened to me other than the PA.  Because Lyn's never fit into an easy category, they don't know what to do with her.

3.  I remember the neurologist saying that he didn't believe in dementia at Lyn's age.  Why do you feel the neurologist and the clinician were hesitant to attribute the changes observed with Lyn to dementia?  Why, given the other cases of early on-set dementia, were they ruling it out?

I think the neurologist has never dealt with a special needs client.  Maybe he didn't like me being informed and suggesting anything to him.  I have dealt with that before.

The Ph.D said that most of her clients with dementia are first seen when they no longer verbally engage and since Lyn still does engage she was "reluctant" to label her at this time.  No, she didn't think she would improve so I "should just watch her."

4.  How has Lyn's diagnosis changed your interactions with her?

I am more patient.  I still try to have her do things she's always done but if I see she's having a problem or becoming frustrated I try to distract her or ask if she needs help.  I am very aware of her facial expressions and her eyes.

5. Looking forward to 2012, what are your hopes for Lyn?  For yourself?

I hope she continues doing as she's doing, maintains her social life.  I don't want this to progress too fast.  For me?  Doing what I've done for 40 yrs.

6.  Can we look into the long-term future for Lyn?  What do you anticipate in a year?  In two years?

We can look into long-term but we don't know how fast this will progress.  I learned a long time ago not to anticipate ahead a year or two.  Perhaps a month at a time.

7.  Do you have an action plan for Lyn's future needs?  What steps on those plan need to be put into place in 2012?

Sorry, I don't have a plan at this time.  I know eventually she will need constant care, someone awake for example.  I will need to put alarms on the inside of my door and possibly windows.  If we begin to see drastic changes her case manager will be able to get more care givers in place.  Perhaps she will have to go into a facility for more specialized care.

Thank you for the time and the responses you've given.  I appreciate them.


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