Caregiver Voices – Arturo and Mary Lou

An interview with family caregiver Arturo Rodriguez.

What is your Name/Nickname?  – Arturo (Honey or Darling)

Who do you care for and how long have you been a caregiver? – I am the primary caregiver for my wife, Mary Lou for about 5 years.  I started noticing the symptoms she was showing more than 5 years ago and they were very mild at first and then it started to get progressively worse.  Once she started asking questions repeatedly, I spoke to the family saying “we may have a problem”.  I let the family know that I had found a place to go and that I was referred to UT Health.  One of the biggest things that happen to loved ones is that they might excuse or ignore the signs and symptoms of dementia by attributing it to other things like fatigue, or their memory might not be as sharp, other factors, etc. They start with denial or not having enough information.  UT Health is getting the message out there for people to have the info to support people helping to avoid the denial process.  For example, I have family members who have shown denial when these symptoms arise.  Hey if you can’t remember things let’s do something about it!

What is the most difficult part of being a caregiver and why? As this disease progresses the person with dementia’s personality can change the way they react to certain situations and it may cause anxiety for them.  They might also experience mood swings and how you deal with a mood swing is to determine if there is a particular problem or issue that is causing it, and then you as the caregiver have to figure out how you are going to ease their anxiety and fear levels.  There are times that I may not react the way I should because I am a human being and my personal temperament comes into play.  Sometimes my reactions are not how I want them to be, so I often reflect on how I could have handled that situation differently. Or why did I react that way?  “She (my wife) is right here sitting beside me now as we talk.”

During the interview, Mary Lou, Arturo’s wife asked to share her thoughts and point of view on the topic.

Mary shared the following: Everything my husband is saying is so true – this is very important and I have been dealing with this for 5 years and it has come on very slowly for me and the important thing is that we also look at the patient’s perspective.  Most of the time I can talk, have conversations, and share my opinions but sometimes it is like l disappear.  People need to know what I am going through. It is a devasting disease, it robs you of everything that you have been and who you are.  I used to be a secretary for the city and I used to be able to write these beautiful proclamations that the mayor would then present to visiting dignitaries.  Now I have great conversations with people but the minute they know I have Alzheimer’s they put up a barrier and they talk to Arturo instead of asking me questions.  I know that in the later stages I won’t be able to care for myself or know where I’m going but it’s important people converse with me now while they can.  People with dementia need to be treated like the person they are and not treated as a non-entity.

As a follow-up to Mary Lou’s thoughts, Arturo concluded with the following:

I also want others to know that there are different stages of Alzheimer’s and depending on the stage they are in, their abilities may vary but the person can still participate as a member of their community.  Just because a person has Alzheimer’s doesn’t mean that their life is over.  It’s not over yet!  My wife can think, speak and act for herself.  There is nothing that I do without her, even the simple things like buying a new appliance. I still discuss with her the everyday matters of our life instead of not including her.  Just like I have always done.  My wife is still an active member of our family and deserves to be able to share her thoughts and experiences.  You should include your loved one for as long as possible.  They deserve to be treated with dignity, respect, and compassion.  Whenever you bypass any of those things it adds to their suffering.  Especially when they know what you’re doing.  I never ever lie.  Even if she asks me a question over and over I never lie to her.  It’s one thing that caregivers need to understand is that they are dealing with the same person they have known all these years.  But yet they just forget things.  Such as where things go in the kitchen, like they forget what drawer the spoons go in or what cabinet the cups/plates are stored, etc. Sometimes you find the cup in the plate drawer and vice versa.  There is no use in making them feel bad by saying that’s the wrong place because that only makes them feel worse.  It’s just the way the disease is and this will happen and will recur and you will need to just work around it.  Now we are starting to label things in our house and that has made it easier for both of us.

Arturo & Mary Lou met in high school and have been sweethearts ever since.  They have been married for 58 years.

What is the best part of being a caregiver and why?  The best part of being the caregiver for me is that as her spouse it helps me to know that she is being cared for in a manner that I would like to be cared for.  If someone else was doing the caregiving I would wonder if she is being treated the way I would like to be treated.  That’s the best part of my wife and myself’s situation is that I feel secure knowing that I am here to care for her.

What resources do you wish you would have had earlier on in your caregiving role? Booklets on “you can expect this and that” and those types of resources do not really explain the nitty-gritty day in and day out things that will happen.  For example, the issues I discussed early about putting the plates and cups in the wrong drawers.  What is really needed are support groups where a professional can start a conversation and people like myself (caregivers) can get together and share stories about what they are experiencing with their loved ones.  This allows us to discuss how we handle these situations, for example, using diversions.  We can talk about how to deal with someone who has had a brilliant mind all of their lives and how they are not going to just lose those concepts very easily.  Their instincts are going to remain intact and are very very sharp.  We as caregivers are having to learn on-the-job training, but no one is training us. You are training yourself.  We often wonder, am I doing the right thing?  I educate myself by listening to patients and what they say because it is difficult for a layman like me to understand what is being said by a professional in their medical terminology.  I would much rather learn from others and their experiences.

How do you care for/make time for yourself? I have been told that I need to care for myself but I have not really thought of how I can care for myself.  My efforts are focused on doing things for my wife.  I guess one thing is that right now I feel comfortable and confident leaving my wife to run errands.  I like going to the hardware store.

The Caring for the Caregiver would like to thank Arturo and Marylou for so generously sharing their story.  You are making a difference in the lives of others and we are grateful for you both.

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