Forgive Me Please!

Question: How can I forgive myself for not being there for my mom 24/7?

When I was 5 years old, my Mom made me promise I would never put her in a nursing home. At that age, I couldn’t even imagine not being with my Mom the rest of my life, so it was okay with me. This promise was extracted because we would go every week to visit the nursing home down the street. Nursing homes were like “wards” back in the day, so it was understandable Mom didn’t want to be in one. I took my promise seriously. Fast forward. Mom developed Alzheimer’s and lived with us for a while. Eventually, I had to put her in a nursing home. The guilt and shame washed over me. It took me years to forgive myself because my Mom deserved the best life and I couldn’t give it to her.

Forgiveness is hard. Learning to forgive is an amazing feat, especially forgiving yourself. From my own experience, it takes accepting I did the best I could under the circumstances. Or did I? The doubt creeps in. Not to mention, learning how to be gentle and compassionate with self seems superficial at best. Furthermore, once your loved one dies, the grief is complicated as you work through the death of the person and your role as carepartner. Not to mention, others don’t seem to understand. You feel alone.

Where does this unforgiveness come from? According to George Jacinto, researcher and author of The Self-Forgiveness Process of Caregivers After the Death of Care-Receivers Diagnosed with Alzheimer’s Disease, a carepartner can experience helplessness and frustration throughout their care journey. These feelings are triggered from guilt and shame stemming from the current situation as well as past experiences with your loved one. As a carepartner, perhaps you weren’t able to be with your loved one at all times of the day. Or, perhaps you feel like you let them down and didn’t live up to their expectations. Essentially, you beat yourself up and unforgiveness sets in. It is important to recognize this is normal.

Carepartners experience a different type of grief called anticipatory grief. This means carepartners experience grief throughout the care journey with their person living with dementia. Most people grieve after the loss of a loved one. In their article, An Assessment of Anticipatory Grief as Experienced by Family Caregivers of Individuals With Dementia, Drs. Ross and Dagley explain anticipatory grief as a “grief process of individuals who are losing someone slowly, expectedly, and, many times, in stages.” The carepartner is continuously “anticipating” and living with unending anxiety and stress. Carepartners are so busy, we forget to care for self throughout the care journey. And, once your loved one dies, unforgiveness is front and center.

There are 4 points to embrace self-forgiveness according to Jacinto & Edward’s research article, Therapeutic Stages of Forgiveness and Self-Forgiveness:

• Recognition: Confront you are in a cycle of ruminating about an incident or unfinished business. For me, I had to acknowledge I felt guilty for putting Mom in a nursing home. Not recognizing it kept me cycling in the “what-if” alternatives.
• Responsibility: Take personal responsibility and recognize you (and everyone else) have imperfections. For me, I did put Mom in the nursing home, even though I had promised not to do it. I wasn’t perfect.
• Expression: Express feelings of self-blame with self or another person. Clarify the negative feelings and let go. For me, I blamed myself for not taking care of her the way she or I wanted. The reality is I couldn’t keep her safe because I needed hip surgery and couldn’t walk well. If she would have fallen on me, it would have been a disaster. The nursing home kept her physically safe.
• Re-creating: Recreate your life by accepting your imperfection in the world of other imperfect humans and incorporate your past. Live in the present. Find a new direction for your future. For me, I kept Mom safe. She even made friends and developed a social circle! It was a blessing.

You deserve to live your best life. Your mom would want you to.


I Have Something to Say…Please Listen!

Question: How do I know what my mom really feels about something?

Isn’t it frustrating when somebody keeps talking and talking and you can’t get a word in? We’ve all been there and, most likely, on both sides of the struggle. Sometimes you might talk to explain something or get a point across. Other times, you might talk to fill silence or to cover the feeling of uncomfortableness. The person on the receiving end might listen or they might get impatient. Regardless, they probably have something to say about the topic or have an opinion to express. They might interrupt or not. They might communicate back with facts or express their words with emotion if they feel passionate about the subject. When they do get the opportunity to participate in the conversation, they are most likely communicating with you in the same language, but not always. If you have ever traveled to another country, you probably experienced communicating with hand signals, pointing, or an attempt at native slang. No matter what, the attempt to communicate existed between you and the other person.

A person living with dementia has something to say too. They just might not communicate in your language or with specific content. They do communicate with feelings, sometimes using non-verbal communication.

My mom who was diagnosed with “most likely Alzheimer’s,” emphatically kept telling me she had given all of her property away. On the receiving end of this insistence, I tried to give her a dose of reality to get her off of this line of thought. I even went to the courthouse and printed out the records that she still owned her property. It didn’t work. My mom had always been an insightful person, so I knew “something” was wrong, but I couldn’t figure out what. I started listening to her more closely and the emotions she was expressing. She was very agitated, frustrated, and worried. She was tense in her body language. I decided it had to be something with her money and looked through her checkbook. I found a large check written to the neighbor next door. After speaking with my stepdad, I found out they had been “loaning” money to the neighbor, except there had been no repayments for some time. The last check was for $6000. My mom most definitely was communicating with me, but not in a language I understood….until I decided to. If I had not, my mom and stepdad would have continued to suffer elder abuse at the hands of this supposed neighbor.

Dr. Allen Power in his book, Dementia Beyond Disease, refers to communication as meaning or the messages within our words or actions. He explains people going through cognitive changes receive and process information differently, such as my mom not being able to communicate about the money. How frustrated my mom must have been as she struggled with the situation on so many levels. Not just because of the neighbor, but also her recognition that she couldn’t figure out what to say or do to remedy the situation. She was living in a state of perpetual confusion. She did not deserve to live there. She needed somebody to understand.

Power provides some key pointers for non-verbal communication and how to listen. They include:

  • Be present: actively listen and examine the environment, stop correcting word choices
  • Suspend judgment: Put your feet in their shoes and realize their cognitive skills may be declining, but their intuitive skills are heightened
  • Seek to understand: Many times the meaning is simpler than you might expect
  • Look beyond the words: Accept expressions, body language, and emotions have meaning, it all counts

People living with dementia deserve to have their voice heard, no matter how they communicate. Please listen.  

Take their hand and take care of their heart.