Minding Our Elders®

Acceptance of Change Important in Alzheimer’s Caregiving

My dad went into surgery with a smile and hope. He came out with severe dementia. Something unexplainable at the time had happened and Dad became a statistic – one of those “poor outcomes” we hear about. My head knew this tragedy was permanent, but my heart wanted my “real” dad back. The kind, loving, intelligent man whose love for me was steadfast. I wanted him back. Unfortunately, my family and I had to learn to accept the fact that Dad would never be the same.

Read more about accepting change so we can help our loved ones:

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Emotionally Descriptive Words Lost to Those With Semantic Dementia

Personality change is the hallmark of frontotemporal dementia (FTD), but a small percentage of people with FTD experience an additional problem. They lose the ability to understand the meaning conveyed by words that describe emotion.

People who love someone with this variant of FTD, which is called semantic dementia have to live with increased heartache knowing that their loved one is now unable to understand emotionally expressive phrases such as "I'm sad" or "I love you."

Read more about the lost meaning of emotionally descriptive words:

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It's Spring: Time to Refresh Our Caregiving Routines

...Making pro and con lists of what is working and what is not working is an effective method of examining anything from budgets to weight loss. It can be just as effective for caregiving. Below I've provided a template for a hypothetical caregiver we'll call Ann. If you're up for a little self-reflection, Ann's list could help you jumpstart your own self-improvement project.

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Valentines Day, Anniversaries Can Be Painful for Caregivers

Dad always got Mom roses for Valentines Day. Yellow roses. They were her favorite. After Dad's brain surgery resulted in dementia and he needed nursing care, I took over ordering the flowers for Mom. I have ordered a lot of yellow roses through the years. Pain was always connected with it because the whole process was one of keeping up tradition while the meaning of the tradition was not clear to the receivers.

My parents' wedding anniversary was the day after Christmas. That day, December 26, became a dreaded day for me. I always needed to go through anniversary routine because for Mom it was important, at least when she realized the day had gone by. I needed to be honest if she forgot and then was then asked if they'd "celebrated."

Read more about Valentine's Day and celebrating when someone has dementia:

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Elders’ Loss of Appetite Complicated

Adult children often worry about their aging parents’ eating habits. Sometimes the elders live alone and don’t feel like cooking or even going out to buy groceries. They may have pain issues that keep them from enjoying food, or dentures that make chewing uncomfortable. Depression can be a factor for some people, as can medication side effects. Loneliness, especially for people who have lost a spouse to a nursing home or death, can make eating seem unimportant or unattractive.

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Dementia and the Holidays: Still Liking Our Loved Ones When It's Over

It’s not news that most of us are busy, even stressed, during the holiday season. However, when we are caregivers our stress level can soar. Being flexible and forgiving may be the key to getting through the season with some sanity intact. Flexibility is important because our loved one, especially if he or she has dementia, will likely be unpredictable. What we planned with great care could suddenly be the wrong approach when the special day arrives and we’ll need to adjust to reality.

The ability to forgive is important because we may find ourselves the brunt of criticism from well meaning people, related or not, who don’t agree with how much or how little we include the person with dementia. It’s also important to forgive ourselves if we make a decision that backfires. We are human.

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Rebuilding Life After Your Care Receiver Dies

Many of us start our caregiving career by assisting an elder in his or her home, or we have a spouse who declines and we become the default caregiver in our own home. This care expands to a point where we need some type of respite, often in the form of in-home care agency help. Eventually, the move to assisted living or even a nursing home may become necessary for everyone's health and wellbeing. Whatever happens, we remain caregivers. Many of us continue to see our care receiver daily. Most of us continue to be involved as advocates and support throughout the time of need. When our loving attention and care is no longer needed, we can, indeed, feel lost.

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Dementia and the Holidays: A Challenging Combination

It’s not news that most of us are busy, even stressed, during the holiday season. However, when we are caregivers our stress level can soar. Being flexible and forgiving may be the key to getting through the season with some sanity intact.

Flexibility is important because our loved one, especially if he or she has dementia, will likely be unpredictable. What we planned with great care could suddenly be the wrong approach when the special day arrives and we’ll need to adjust to reality.

Read more about enjoying the holiday while caring for someone with dementia:

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Caregiving Works Best As a Team Effort

...Joe had taken off on one of his impulsive walks to an old downtown tavern without considering the lack of sure footing. On a good day, with dry cement under his feet, Joe shuffled with an occasional sideways wobble. Put ice and snow underfoot and his walk was an invitation for disaster. Miraculously, Joe was cold but unharmed, except that he couldn't get back on his feet. Julie helped him up and took him home, then came looking for me, since she knew I was his primary caregiver.

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Humor Provides Armor Against Caregivers’ Deepest Sorrows

One of the positive parts of being a family caregiver is the opportunity for emotional growth. We can develop increased compassion, patience and tolerance, as well as humor. Yes, we often shed tears over our loved one’s illness and often over our feelings of powerlessness.  But humor may be the saving grace that keeps us from drowning in sorrow.

Some situations, of course, leave no room for laughter. But some tough times can offer moments of levity if we choose to recognize them. My sister, Beth, and I experienced what to some people may be a rather macabre situation during the three days our mother was going through the death process. If we hadn’t maintained our senses of humor, I’m not sure how we would have handled those sad, seemingly endless days.

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Internet Series “Ruth and Erica” Focuses on Family Dynamics and Alzheimer’s

 “Ruth & Erica” launched this week on the YouTube Internet channel WIGS, which, according to the press release, is now the most popular channel for scripted drama on YouTube. The show portrays the dynamics of a family facing the challenges that often accompany aging and ill health.

When I asked author and director Amy Lippman (Party of Five) what prompted her to write a drama about aging, she told me, “Over the past few years, I've become increasingly aware that my conversations with my friends were veering away from our usual talk about our kids to talk of our parents, how they were aging, and how their aging was affecting us. We were constantly seeking advice from each other: what were our responsibilities toward our parents?

Read more about "Ruth and Erica" and the drama of aging and Alzheimer's:

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Daughter Worries About Dad’s Sexual Aggression

Dear Carol: My father is in a nursing home because of Alzheimer’s disease. He’s become sexually aggressive and often grabs at the aides’ bodies. I get so embarrassed when I see that. The nurses say it’s his dementia and that he’s not unusual, but I wish there was something we could do to stop this embarrassing behavior. He was never out of line before he got sick. When we confront him about his behavior, he denies doing anything wrong. - Karie

Dear Karie: While sexual aggression is hard for the family of a loved one with dementia to witness, it’s only one manifestation of the lack of inhibition that is common with some dementias. Please believe the staff when they tell you that this is not uncommon behavior with dementia. They’ve been trained to handle these situations, so mainly it’s your own embarrassment you need to cope with. Your dad’s hormones are still active, but his brain can’t send him the message to restrain himself. 

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Alzheimer’s Awareness Campaign Goes Global

September marks World Alzheimer’s Awareness Month. Friday, September 21, 2012, is the day when Alzheimer’s organizations around the world, as well as caregivers and families with people who have the disease, will concentrate their efforts on raising awareness of Alzheimer's.

Alzheimer's disease is the most common form of dementia, a group of disorders that impairs mental functioning. Families are looking for answers to cope with their own or a loved one’s illness. While most of these people are aware that for now Alzheimer's disease is progressive and irreversible, they continue to hope that something will soon come along to help them or their loved one. 

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Coping With Your Parents' Negative Behavior

...Much depends on the parents' personalities throughout life. If your parents were the bickering type and were always negative, this complaining may be the only way they know how to communicate. They may not even be aware how their attitude affects others. Since you grew up in their household you can ask yourself, "Is this how they always acted?"

I'm not suggesting that their continued negative take on life, especially the things you go out of your way to do for them, is okay. However, realistically, you aren't likely to change their personalities. The physical and mental frustrations that go with aging are likely to intensify an already negative personality, so you already know what you are in for.

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New Caregivers Need to Know What Resources Are Available

Dear Carol: My parents are in their late 70s and had been doing really well, or so it seemed. Then, about three months ago, my dad had a heart attack from which he’s now recovered. However, during the time he was ill my siblings and I realized that our mother has been mentally declining. It seems Dad had been covering for her for a long time. She has now been diagnosed with early stage Alzheimer’s disease. We are feeling overwhelmed with decisions and don’t know where to turn for help. Elaine

Dear Elaine: When caregiving comes at people suddenly it’s normal to feel overwhelmed. Sometimes people don’t even know where to start looking for help, and when they do see options the whole range of choices can confuse and overtake them.

Read more about how to find available resources to help your loved one:

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Alzheimer’s Development Predicted Through Changes in Gait

When you are stuck behind an older woman at the supermarket, do you get impatient at her slow pace? Maybe she simply has all the time in the world and no longer must rush through each day as though she needs to put out a fire. Or maybe she has arthritis or another physical illness that is slowing her down. There’s nothing wrong with being more cautious about movements and slowing a bit as we age. However, for some people, a slow gait, particularly an uneven gait, could be a sign of brain disease such as Alzheimer’s.

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Caregiving: What Would You Do Differently if You Were to Start Over?

As a seasoned caregiver of multiple elders, I can choose to torture myself with my perceived failures at being a perfect caregiver, or I can choose to forgive myself for being imperfect, and recognize that I did the best I could at the time. You have the same choice.

Much like an adult who realizes that he or she has a "wounded child" living inside – a child who suffers from unearned self-blame or low self-esteem because of life events – many adult caregivers carry the guilt from their "infant" caregiving years to their grave. They spend precious time thinking about how they should have understood someone's needs better, could have been more patient, would have done any number of things better, if only they knew then what they know now.

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When the Caregiver Shows Symptoms of Dementia

...If you find yourself exhibiting disturbing symptoms that you notice yourself, or friends and family gently bring up to you, don't immediately decide that you, too, have dementia. Other issues that can make you feel as though you are having dementia symptoms are medication reactions or interactions, infections and lack of sleep.

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Companies That Can Help Elders Move

...Understandably, people tend to groan when they think about the difficulty of these moves. First, of course, the elder must part with years - perhaps decades - of belongings. Many of our parents were great "savers." They grew up in the depression and they have a strong feeling that they may need, um, that cracked mixing bowl, one day. And why wouldn't they feel this way? Many lived close to the edge of starvation during the Dirty Thirties. These experiences colored their whole life.

Read more about companies that can help your parents with the moving experience:

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AFA Report Focuses on Alzheimer’s Wandering and What Caregivers Can Do About It

According to an Alzheimer’s Foundation of America (AFA) report, most people with Alzheimer’s disease who wander are found in close proximity of their home. That being said, it’s essential that people who wander be found quickly, since confusion or poor judgment could cause them to walk into traffic, enter a dangerous construction site, or simply become increasingly disoriented, confused and frightened.

The AFA report titled “Lost and…Found: A Review of Available Methods and Technologies to Aid Law Enforcement in Locating Missing Adults with Dementia,” was funded by Project Lifesaver International, a nonprofit organization based in Chesapeake, VA, through a grant from the United States Department of Justice’s Bureau of Justice Assistance.

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