Tag Archives: caregiver

life lessons learned from dementia

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sunsetHard experiences often teach the best lessons. Helping care for my elderly dad triggers childhood memories and reactions, fears for the future, and all the worst of me at times. The positive result is time to reflect and apply what I learn to other areas of my life. I have a lot to learn(!), so here are my first three lessons from my recent visit:

Even when I can’t “fix” it, I can still serve.

I would like nothing better than to cure my dad’s Parkinson’s and dementia, but I can’t. Medications, therapy, visits, prayers – other than a miracle – will not “fix” my dad. However, I can serve him. True service is determined by the one being served. He needs simplification in language and task, and continual and creative adjustments as his abilities change. He also needs my patience when he would prefer to do something (slowly!) himself and my respect even when he is confused or forgetful. Those last two are much harder for me.

Besides my dad’s illness, there are many things I’d like to change in this world: peace in place of violence, an end to inequities and inequalities, reconciled injustices, healing for hurts, desperation to encounter hope. I can’t fix those things either… but I can serve. I can go where I am called, give my best in all I do, and think of others rather than myself first – one day at a time. I can consider what will best assist others rather than what I want to do or what is easiest for me to offer.

I don’t have to be right.

I learned quickly that I cannot win an argument with a dementia sufferer. To the person with dementia, his perception is the only thing that is true. My dad’s delusions, paranoia, and denial are his reality. I cannot reason, argue, convince, or win him over to my perspective. I can only help him with what he believes.

That is often true with other people also. Even if we see the same scenario play out in front of us, our individual personalities, backgrounds, and values give us different perspectives of that incident. I can discuss, persuade, or pressure for hours, but I will never be the one who is right. I am learning – slowly – that I don’t always need to be right. My truth is often not the one truth in a situation. I can only help people if I care about and work with what they believe.

Attitude is powerful.

You would think I would know this one by now. I cannot change my father’s attitude, but I can change mine. I can look at his disease as a glass half empty and focus on all he has lost and who he was, or I can view the glass as half full and concentrate on what we can still enjoy together – neighborhood walks, quiet rests on a park bench, joy at watching fat rabbits in the yard, a New Mexico sunset streaked across the sky. He can sense my attitude, and he reacts accordingly.

He is not the only one affected by my choice of attitude. My family, friends, and co-workers also react to my half-empty or half-full mood. My actions may be good, but my attitude has the most powerful influence on his response.

These are the three lessons I am working on this week. I will share others in the weeks ahead, but this is enough for me for now!

How about you… which of these three is hardest for you?

What have you learned about serving others, caring about what they believe, or choosing the right attitude? 

who will he be today?

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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.”

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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?

I don’t like being sick

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pillsI don’t like being sick.

I don’t like feeling weak or low energy or dependent on others. I don’t like to limit who I can see or where I can go or what I can do. I don’t like taking pills, and I avoid doctors and hospitals as much as possible. Most of my life I have been strong and healthy, so when I get sick, I usually try to just ignore it, or work through it, or get over it as fast as I can.

If I can’t do that, I tend to mope and complain, and generally act as a whiny, negative, grumpy patient.

I feel sorry for those who have to live around me or care for me.

(…and worse, I’m not much better caring for others. Let’s just say that mercy and compassion don’t come out very high on my strengths lists!) Ask my family!

However, as I thought about it this weekend, laying in bed, unable to do much else, I realized that over the years being sick has been useful in my life.

Being sick teaches me empathy for others who are ill, sometimes chronically or seriously. I have experienced – maybe just a little – of the pain, limitations, and frustrations that they have. I am less likely to criticize or judge because I can relate to what they are going through.

Being sick reminds me that rest is good occasionally – not lazy, coach potato, bring-me-a-beer-honey, all-the-time-rest, but  regular, reflective, restorative, away-from-the-routine, Sabbath-kind of rest… A few minutes a day, a day per week, a more extended time each month and each year does a person good.

Being sick helps me build healthy, reciprocal, interdependent, it’s-ok-to-ask-for-help kinds of relationships. I tend to be very independent and self-sufficient… And if I wasn’t weak now and then, I would lose out on the important character building elements of vulnerability, honesty, and need for others in my life.

I learn to better care for others by experiencing care from others. Since care isn’t my strong point, I’m not always confident about what to offer or what to do or what to say. As others do thoughtful things for me… run errands, bring food, or send a card, I get tips and ideas of how I can help others. When I am smart, I mentally file away those things to use later!

I have also grown to have a lot of respect and appreciation for those who are care-givers. I’ve been blessed a few times in my life by doctors, nurses, family and friends who did an incredible job when I, or someone I love, needed special care. Their work is so important and their willing, servant attitudes, add a ray of sunshine to a gloomy day.

So, honestly, I still don’t like being sick…. Who does? At least I can I handle it a little better when I can see some good in it… and that turns out better for everyone involved!

How do you handle being sick?