Caregiver Voices

My name is Denise.  I am a caregiver for my Mom who has Alzheimer’s dementia. 

I have been my mom’s sole caregiver for 3 ½ years.  I did not realize it had been that long until I counted the years/months for this article.  Mom and Dad told me that my Mom had Alzheimer’s, but I did not realize how much it affected my Mom until my Dad passed in 2017.  Before that time, she was eating properly and taking her medicine because she would cook for Daddy and take her medicine when he took him.  After Daddy passed, I thought she was still fine, and then she ended up in the hospital due to dehydration (and not taking her medicine).  I called her every day to remind her to take her medicine and she told me she did.  Do not believe them (smiles), investigate further.

The most difficult part of being a caregiver is seeing my mother lose more and more of her memory, cognitive function, and her ability to do daily activities.  My mother is a college graduate and retired librarian.  My mother still reads but she will read the same book again and again because she does not remember she already read it (I think).   When my Mom moved in with me after her hospitalization, the difficult part of being a caregiver was reorganizing my whole life.  She had nurses, physical therapists, occupational therapists, and aides coming to the house and I had to be here because she did not answer the door (too weak).  It is not a set time each week so you cannot make plans for yourself because there might be therapists, nurses, or aides coming by.  To top that off, in 2020, we had the COVID pandemic, so everything shut down.  Then Mom thought I was staying home because of her so I had to start going out so she would not feel like I gave up everything for her.  She could not understand that everything was closed or shut down.

The best part of being a caregiver is allowing my Mom to live in a home instead of a facility.  I love to see her happy and relaxed.  I try to think of fun things for her.  I might create a menu and she can select what she wants to eat.  I learned to give her two choices (anything more and she gets flustered).  She raised me and cared for me as a child, so it is my turn now.  I have also learned patience, understanding, and tolerance which I never had much to begin with.  I am also very lucky because my Mom is so sweet and kind.  She is never mean or short with me.

I wish I had known about UT Health – Nursing Division “Caring for the Caregiver” when I first became a caregiver.  I had no idea of where to start, who to contact or what to expect.  The “Caring for the Caregiver” gives you practical advice.  The classes are concise (about one hour) and in plain English.  They also explained how important it is for the caregiver to take care of themselves and it is normal to get frustrated, so you do not have to beat yourself up or think you are a horrible person.  Even searching the internet about Alzheimer’s and dementia was overwhelming.  I also wish I would have put my pride to the side and joined a support group earlier.  Friends and Family mean well but unless they are dealing with the day-to-day experience of being a caregiver, they have no clue.  All they can say is “just have patience” or “that is your Mother and she isn’t doing this to upset you”.   They do not understand what it is like answering the same question every 10 minutes for an hour.  In the support group, someone suggested a sticky note that has the answer, and I can give that to my Mom or put it in front of her in the car. 

As far as taking care of myself, I am very lucky that I can leave my Mom alone for a couple of hours at a time.  This allows me to take community classes such as those at OASIS or enjoy some “me” time to get my hair and nails done.  When I am at home and something annoys me, I go outside in the garden and take a break.  I have also found that turning off my phone for one hour and just relaxing is an excellent way to rejuvenate myself.

What I would tell a new caregiver.  If you are a new caregiver, do not try to do everything yourself.  See what really bothers you and seek a solution.  It could be to have someone come in and clean the house.  It could be having someone come in to bathe your loved one.  Also, do not let others make you second guess your decision.  If they have a solution, have them come in and do it.  Do not let others put more on your -plate.   Do not beat yourself up if you get frustrated.  Remember, you are not perfect, you are learning something new, and you are doing a great job by being a caregiver for your loved one.   Check out support groups and organizations that specialize in what condition your loved one has.  Be involved in their medical care.  Get legal documents in order.

Written by family caregiver Denise Swain

Article Categories: Newsletter