I want you to be who you were! (ok, at least 90% of it anyway). I didn't realize this is the message my soul was screaming each time I got frustrated with my mother. She is 90 years old with Alzheimer's, she was diagnosed with it several years ago shortly after my dad, the love of her life and husband of 62 years, passed; no coincidence I'm sure. In the simplest of terms, the way I understand it, Alzheimer's is progressive mental decline due to deterioration of the brain. In short, the brain stops functioning like it used to.
Mom lives with me and my sweet husband of 30+ years, Joe. She came to live with us Mother's day three years ago. I am her full time 24/7 caregiver. Mom still has her independent spirit intact. However, her mind and body do not coordinate like they used to. Her mind is sure of what it wants, however, her body checked out on things a while back...it went rogue and pretty much just wants to rest a lot these days, which is tough on my "I can do it" mom.
Lately, life has been challenging. The big question for me has been how do I NOT drown and lose myself in caring for my mom as her needs increase rather than decrease each day? Knowing the process of age and Alzheimers is one thing, living it is another altogether.
There have been many aha! moments for me all along the way. Being mindful of the things I have learned as I have interacted with mom daily has been very helpful:
- Mom is not going to remember birthdays and anniversaries, including mine - and if she does, cherish it and celebrate that moment with her!
- You are going to have to speak up when you talk to her because she can't hear very well anymore
- You WILL have to repeat yourself - probably several times or more - because her mind literally cannot lock onto new information and you may very likely stop talking to her about anything current for that very reason
- She will take much longer to get ready for the day or ready to go out because she can no longer move as fast as she could before or process information, especially step by step information, like she used to
- You will have to knock on her door and check in with her while she's getting dressed and ready to go because something, anything, will distract her and she will do that thing instead (i.e. read a magazine, rummage through a drawer, etc) and forget she's going somewhere and needs to finish dressing
- She will need more hugs than ever, more kind words than ever, more patience from me than ever...and I have come to understand it's okay if that stretches me
- Our conversations will be shorter with less and less to talk about. The conversations we do have are about times long ago in her life, and very likely stories I have heard many times by now. Mother-daughter conversations as I have known them are gone.
One big learning tool for me in this situation, and one that I frequently share with my clients, has been realizing that if it is a tough day, it's okay. I had to learn to be kind to myself and realize life is about one moment at a time and each of those moments adds up to create an experience, so don't sweat that 'one moment' or the next one so much. This knowledge brings me great comfort to understand that this frustration I'm feeling is a moment - and it will pass - that it's okay...I'm human, not super woman.
One day not long ago as I was asking for guidance and direction; this was dropped into my heart:
Provide care, do not carry
There is a difference
That was such a big aha! for me at the moment!
Carrying people is what can wear us out so quickly. Caring for people is what comes naturally from the heart and can elevate us. Caring for our loved ones, our friends, our animals, our community, our country, our world is a core state of our being.
What is the difference?
What I came to realize is that to carry is to recognize that due to Alzheimer's and the frustration of limitations mom may have her moods, her agitation, her boredom, her confusion, her lack of physical agility, and even depression; to carry her means that I am trying to bring her out of her mood, help relieve her boredom, do everything for her even if she tries to do it herself, even anticipate her needs, as well as feel I am the one that needs to provide entertainment for her 24/7. However, I came to realize that is not the case at all, rather my part in providing care is:
- responding in a way that is kind
- infusing love into the care I give her
- get additional help if needed
- create a pleasant environment
- be sure her physical needs are met
- allowing her to do anything she is actually capable of doing (i.e. making her bed)
- greet her with love
- stop trying to make her who I want her to be; she is not who she was so give up that fantasy and accept her today in this moment for who she is right now
- provide opportunities for her to interact with others
- provide materials for something she has an interest in
Making this distinction each day has made a world of difference for me.
To provide care, not to carry
My mom is beautiful, kind and loving, however, she is not who I remember her to be, who I want her to be; this was a big aha! to me on this journey. "I want my mom back!" Recognizing and coming to terms with this has brought peace to my soul.
Allowing her to be who she is right now in this moment without judgment, without condemnation, without resentment is a gift of pure gold I can give to her and also to myself.
It is not always easy, but I have found that allowing mom to be who she is in each day has helped me to recognize the difference between caring for her and carrying her.
At 90 years old, she still gives the best mom-hugs and that's one thing that I appreciate that hasn't changed.