What I’ll Say to my Children if I’m Diagnosed With Alzheimer’s

These last months have been very heavy for me – first my mom’s death and now helping with care-giving for my dad with Parkinson’s. This post speaks my heart so well. So grateful for this woman’s ability to express words my pen has not been able to write.

God's Grace and Mom's Alzheimer's

I was skimming some other dementia blogs lately and a reader had written in saying, that though she felt guilty about it, she wished her mother would die in her sleep and not have to continue living through the pain and indignity of dementia.  I’ve heard others say things like, “I’ve told my kids if I ever get Alzheimer’s just shoot me.”

I understand where these comments are coming from, but they make my heart heavy.  I feel like these attitudes devalue my Mom’s life right now. Even though they are not specifically referencing her, they are in effect saying that people like her are better off dead. It is hard to see Mom changing and confused and upset. But she still has sweet times of love and joy, too.  And God still has a purpose for her life.

He is growing our patience as we care for her.  He…

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who will he be today?

Old Man 14037671409_bbb2f90095_cOne day he seems almost normal – making jokes, telling stories, expressing gratitude, communicating lucidly.

The next day he feeds animals that don’t exist; is irrationally paranoid and fearful, freezes in the middle of thoughts and sentences, and cannot remember how to accomplish basic life tasks, how old he is, or even his daughters’ names.

I do not know which father I will greet each morning.

That is dementia.

I have decided it reminds me of living with a teenager – one moment “almost” mature and grown up: making wise decisions, communicating with confidence and respect, interacting as an adult peer. The next moment acting like a child again: thoughtless of action consequences, emotional or surly, insecure and overly dependent. A roller coaster of crisis and climax.

That is dementia.

I am learning again how to help. Stay calm and do not escalate the situation by attempting to reason or argue. Use a quiet, clear, slow voice, respect, and a gentle touch. Do not let his response trigger my past father/daughter issues; do not react defensively, with anger, or with impatience. Do not surprise him with a change of plans or expect him to learn something new or hope for consistency from day-to-day.

I long for a standardized to-do list that I can follow faithfully each day. A defined cause and effect that I can rely on. A “2 + 2 = 4” dependability.

Dementia does not offer that.

Instead I need to face each day with grace, flexibility, prayer, and love-motivated sacrifice of my wishes and desires.

Unlike rasing a teenage, there is no chance that this situation will improve, that he will grow out of this stage, that he will get better. I can only anticipate more of the same or something worse. He is not making progress; he is declining towards the end.

That is dementia.

Who will I greet in the morning? An elderly man. A child of God. A test of my character. My father.

How do you face the challenges in your life that will not get any easier? 

_____

**If you are a person of prayer, please pray for my father and my family… wisdom for future decisions, strength for daily choices of love and sacrifice. Thank you.

“Ok, my dear. Thank you.”

terry and dadMy dad has never before called me “dear”.

That word brought tears to my eyes. Such a little thing, and yet a such big emotional impact.

We are spending a few weeks living with my dad – helping him with daily care, giving my sister a few moments of respite from her herculean job of care giving.

I was initially nervous about staying here with him. I was not sure about his abilities to function and interact. I worried that he might not want my help or that I would not know what to do. I haven’t lived close to my elderly grandparents or parents, so am not very comfortable with their lifestyle and needs.

My dad suffers from Parkinson’s disease, dementia, and alcoholism. My dad who was always the extreme self-made-man, strong character and body, intelligent, and absent of affection has become a very dependent, weak, forgetful… sweet and appreciative old man.

He certainly has his moments of confusion, frustration, and stubbornness, but in general, he is not the rough, tough, intimidating father he was before.

Caring for my dad is not easy. It requires patience, flexibility, research, and a lot of new perspective. It means different standards, norms, and routines that would have been unheard of in earlier years. Lucid conversations mixed with confused anxiety. Time, worry, initiative, firmness, creativity, and continual second-guessing and questioning decisions and choices.

Dad’s care is the epitome of living with tension – giving respect and still enforcing new restrictions, allowing for independence and restricting freedoms, offering choices while simplifying options, providing quality of life and ensuring safety, protecting privacy and dignity while also hovering with care.

I do not have any official training for the role of elder care-giver, but care giving is training me. I am learning to slow down… lowering my accomplishment expectations for each day, choosing my words carefully and enunciating as I speak, walking protectively at his side, moving with tenderness and intentionality. None of that is easy for me.

The most important lessons are a repeat of earlier experiences – living fully with the realities of each life-stage and finding contentment there. Just as I learned to overcome fears, serve others, and treasure special moments with infants, toddlers, teenagers, and adult children, I can do the same with my dad.

Every person is important. Every life is valuable. I consider it a privilege and a joy to care for him. I am willing to help my dad without expectation of getting anything in return, but every now and then, I receive a special gift – a “thank you” or a “dear” – from a special person who has nothing more to offer. It is enough.

What has been your experience is caring for elderly loved ones? Do you have any tips for me?

What was it I needed to do?

Photo credit: pni / Source / CC BY-NC-SA

Photo credit: pni / Source / CC BY-NC-SA

Have you ever gone into a room and forgotten what you went in there to find? Ever forget someone’s name? Ever spend time looking for something because you couldn’t remember where you put it?

These are normal events for most people. At my age, however, they are becoming more worrisome. Some days I worry about losing my memory.

My dad has Parkinson’s and dementia and it saddens me to watch him struggle. I am reading books about dementia and memory loss diseases to learn how to help him, support those who do his care-giving, and understand some of his challenges.

I am also learning how to prevent or at least diminish the potential for my own memory loss. This past week, I read a great biography about a daughter caring for her dementia-affected mom: Inside the Dementia Epidemic: A Daughter’s Memoir. Besides communicating honesty, empathy and encouragement, the author, Martha Stettinius, offers great appendices of resources – one contains suggested antidotes for dementia.

This is a summary of what she writes:

Exercise

Studies show that thirty minutes of daily physical activity (housework, walking, weight training, etc) may be our strongest weapon against Alzheimer’s and other memory loss diseases. Aerobic exercise increases blood flow to the brain and stimulates growth of new brain cells.

Mental Stimulation

Add social community and mental stimulation to exercise and you have a great combination. Work, join a club, volunteer, travel, play games – especially crosswords or puzzles, learn to speak another language or play an instrument. Do these things in relationship with others and your brain continues to make connections too.

Eat Right

Nothing new here right? A good diet helps with a lot of things! Eating dark veggies and fruits, cold water fish (salmon, tuna, mackerel) and nuts (almonds, pecans, walnuts) also decreases the risk for memory loss. Vitamins E, C, and B12 may also help. Cut back on sugars and carbs wherever you can.

In addition, Stettinius suggests that you get checked if you have vision problems, sleep apnea or an infection that damages neurons. Researchers consider each of these as possible catalysts for dementia and Alzheimer’s.

This all seems pretty basic and these are health tips I have heard before. I am just a bit more motivated to take them seriously each time I hear about someone else caring for a loved one who suffers memory loss… and that is often. There are 35.6 million people with dementia worldwide today and analysts expect that amount to almost double by 2030 to around 66 million and double again by 2050 to approximately 115 million.

I am going to do what I can so that I do not add to that number.

How about you? Do you need to change some habits? Or did I already ask you that?

¿Qué es lo que iba a hacer?

Photo credit: pni / Source / CC BY-NC-SA

Photo credit: pni / Source / CC BY-NC-SA

¿Alguna vez has entrado a un cuarto y olvidado de lo que fuiste allí para encontrar? ¿Has olvidado el nombre de alguien? ¿Talvez perdiste tiempo buscando algo porque no podías recordar dónde lo dejaste?

Estos son eventos normales para la mayoría de la gente. A mi edad, sin embargo, son cada vez más preocupante. Hay días cuando me preocupa la posibilidad de que voy a perder mi memoria.

Mi papá tiene la enfermedad de Parkinson y demencia y me entristece verle sufrir como resultado. Estoy leyendo libros sobre enfermedades de demencia y la pérdida de la memoria para aprender cómo ayudarle, apoyar a mi familia que lo cuida y comprender algunos de sus desafíos.

También estoy aprendiendo cómo prevenir o al menos disminuir el potencial de mi propia pérdida de la memoria. La semana pasada, leí una gran biografía, Inside the Dementia Epidemic: A Daughter’s Memoir (Dentro de la Epidemia de la Demencia: Memoria de una Hija), sobre una mujer que cuidaba de su madre quien estaba afectada por la demencia. Además de la comunicarse con honestidad, empatía y estímulo, la autora Martha Stettinius ofrece grandes apéndices de recursos – uno contiene antídotos sugeridos para la demencia.

Este es un resumen de lo que escribe:

El ejercicio

Los estudios muestran que treinta minutos de actividad física diaria (tareas domésticas, caminar, pesas, etc) pueden ser nuestra arma más fuerte contra el Alzheimer y otras enfermedades de pérdida de memoria. El ejercicio aeróbico aumenta el flujo de sangre al cerebro y estimula el crecimiento de nuevas células cerebrales.

La estimulación mental

Añadir comunidad social y la estimulación mental con hacer ejercicio y tienes una gran combinación. Trabaja, unirte a un club, ofrece servir como voluntario, viaja, entretenerte con juegos – especialmente crucigramas o rompecabezas, aprende a hablar otro idioma o tocar un instrumento. Haz estas cosas en relación con otra personas y tu cerebro sigue haciendo conexiones también.

Comer Bien

No hay nada nuevo aquí ¿verdad? Una buena dieta ayuda con un montón de cosas! Comer verduras y frutas, peces de agua fría (salmón, atún, caballa) y nueces (almendras, nueces china y de Castilla) también disminuye el riesgo de pérdida de la memoria. Las vitaminas E, C y B12 también pueden ayudar. Reduce el consumo de azúcares y carbohidratos donde puedes.

Además, Stettinius sugiere que vayas con un doctor si tienes problemas de visión, la apnea del sueño o una infección que daña las neuronas. Los investigadores consideran cada uno de estos como posibles catalizadores para la demencia y el Alzheimer’s.

Todo esto suena como básico y estos son consejos de salud que he escuchado antes. Yo estoy un poco más motivada para tomarlos en serio cada vez que oigo de alguien cuidando a un ser querido que sufre pérdida de memoria… y eso es a menudo. Hay 35.6 millones de personas con demencia en el mundo hoy en día y los analistas esperan que equivale a casi el doble en 2030 – alrededor de 66 millones y que duplique de nuevo en 2050 a aproximadamente 115 millones.

Yo voy a hacer lo que puedo para no añadirme a ese número.

¿Y tú? ¿Necesitas cambiarte algunos hábitos? ¿O ya te pregunté eso?