Guest article: Dealing with dementia: What caregivers need to know

By Jesse Waugh from Daughterly Care

Have you been given the rewarding yet challenging task of caring for a loved one with dementia?

Undoubtedly, caring for someone with the affliction can be very demanding both emotionally and physically.

An overall term to describe a dramatic decline in one’s mental ability, dementia can be severe enough to interfere with the patient’s day to day existence.

The following tips will help you care for a patient with dementia effectively, while helping them transition into another phase of their lives with less difficulty.

elderly_woman

Communication
In most cases, people with dementia will find communicating utterly demanding.

Chances are, they will find it difficult to verbalize, write and express their emotions in general.

In some instances, they have the tendency to also lose sight of conversation basics and might end up ignoring or interrupting you in the process.

Bridge the ‘communication gap’ by keeping in mind the following basics.

• Keep calm at all times and give them sufficient time to comprehend what you are trying to say and wait for them to respond to you.
• Make use of touch and other positive body language when communicating and make it a point to remain consistent in your approach.
• Always opt for simple and short sentences when trying to get your message across. Also, try not to argue and be condescending. Keep in mind that they still have emotions and feelings even if they might have difficulties understanding you.

Nutrition

Part and parcel of fitting elderly home care should involve carefully monitoring the patient’s drinking and eating habits.

There is a possibility for people with dementia to forget to eat and drink so keeping an eye on this key element should be considered vital.

Effectively manage their eating and other nutrition needs by taking the following pointers to heart.

• Ensure snacks and meals are offered on a regular basis. While not everyone has the same needs, 5-6 small meals a day is considered ideal.
• When possible, serve foods they are familiar with and patiently demonstrate chewing if the need calls for it.
• In most cases, patients tend to lose a lot of weight especially in the later stages of the disease. With this in mind, consider giving nutritional supplements. Consult a doctor or a dietitian so you will be given appropriate advice as to the supplements that might be helpful.

Aggression
While not true for all, there are instances when patients with dementia will exhibit some aggression tendencies.

Be on top of any possible outburst by practicing the following essentials.

• Inform friends, family and relevant health professionals if the patient displays any form of aggression.
• If fits happen repeatedly, try to observe so you can figure out what the triggers are. Once you identify what provokes the outbursts, it will be a lot easier for you to steer clear of those triggers.
• If the outbursts become frequent and unbearable, ask for professional advice so you will know how to manage it effectively.

While physically challenging and emotionally devastating, you can do much to help make dementia a bit more bearable for the patient. Equip yourself with all there is to know, seek the help and guidance of the right professionals, and you are on your way to managing dementia with ease.

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Guest article: Preparing for at-home care for a loved one with dementia

By Helen White, freelance writer

The decision to try at-home care for a parent or other close relative with dementia isn’t one that’s made lightly. It’s exhausting work, both mentally and physically, and it can be heart-rending for children of parents with dementia to see the changes that the disease brings. If you’ve made the decision, there’s a lot of preparation to be done, both in the home, to create a safe environment, and in the heart, to help you stay strong and able to cope with your new role as care-giver.

Simplifying the Home and Improving Safety

For someone with dementia, even the simplest everyday tasks and items can become fraught with difficulty. Simplifying the home, reducing clutter, and making spaces more accessible is hugely important to prevent over-stimulation and agitation, as well as accidents that may lead to physical harm.

  • Create “walking paths” so that there’s a direct and easy-to-follow path between each room. Remove or tack down any rugs on the floor.
  • Reduce household clutter, both to prevent accidents and to reduce the likelihood of over-stimulation caused by information overload.
  • Improve lighting to reduce dark spots and shadows, which can cause confusion and distress.
  • It may be helpful to label certain areas and items; for example a “bathroom” sign, and labels for kitchen drawers.
  • Add grab bars where applicable in bathrooms (e.g. for the bath, shower, or toilet) and add non-slip flooring or mats.
  • Consider child-proof locks for electrical devices and wall outlets.
  • Secure any rooms or items that are potentially dangerous or breakable—for example, the garage, basement, attic, or swimming pool, computer equipment, and machinery.
  • Add safety locks to any doors that lead outdoors, and install window devices to limit how far they can open.

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Preparing the home is sometimes a matter of trial and error: you don’t know how your loved one will react to certain things until they’re with you on a daily basis. Initially at least, focus your efforts on safety, and over time you may find there are additional changes you can make to the home to make things more comfortable and calming.

Setting Up a Routine

For someone with dementia, routine is incredibly important. Having a routine helps them make better sense of a world that is increasingly confusing, and it’s important that your loved one knows there are certain things they can rely on, like a mid-morning snack at the same time every day, or a favorite television program each evening. In situations where their loved one has become agitated, having an established routine can also help a care-giver get things back on track and help their loved one calm down.

  • A routine doesn’t need to be strictly regimented and fill up an entire day; it should just provide the day with structure. For example, it might include:
  • Opening bedroom curtains at the same time every morning to signal the start of a new day
  • Meals and snacks, and medications, at scheduled times.
  • Daily activity time, visitors, outings.
  • Shower or bath time before bed.
  • Playing a relaxing piece of music at bedtime.

Don’t Neglect Your Own Self-Care

Caring for a person with dementia is both physically and mentally demanding, particularly for non-professional care-givers taking care of family members. It’s a situation that can lead to exhaustion, burn-out, and even depression on the part of the carer, so it’s vital that you’re able to take breaks on a regular basis, including days and evenings off. So, as part of preparing to bring your loved one home, try and set up a schedule of some kind, to make sure each person who is acting as carer has sufficient time off.

Having a good support system in place from the start is also very helpful. For example, joining a support group for care-giving families can provide a means of expressing emotions in a safe and non-judgmental environment. This is hugely important, because it’s natural for care-givers to feel negatively-perceived emotions like frustration, fear, and sadness, and they need a safe outlet in which to express them.

References
A Place for Mom (March 2013). “Maintaining Dignity for Dementia Patients.” Accessed January 12, 2015. Caring with kindness.

Carol B. Larkin (May 2012). “A Guide to Safe-Guarding Your Home for Alzheimer’s Patients.” Accessed January 12, 2015. Simplifying home and routine.

Aging Care. “Senior Care Products.” Accessed January 12, 2015. Products for at-home senior care.

Help Guide. “Dementia and Alzheimer’s Care: Planning and Preparing for the Road Ahead.” Accessed January 12, 2015. Preparing the home.

Phillips Lifeline (May 2014). “Proper Dementia Care Can Help Patients Remain at Home Longer.” Accessed January 12, 2015. Benefits of at-home care.

Psych Guides. “Living With: A Family Member With Dementia.” Accessed January 12, 2105. At-home care.

Visiting Angels. “Preparing the Home for Senior Care with Dementia or Alzheimer’s. Accessed January 12, 2015. Home preparation.

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Book review: ‘Slow Dancing with a Stranger’

You know you are a caregiver or an Alzheimer’s awareness advocate when books like this appear on your Christmas wish list.

I had read positive reviews of the book, “Slow Dancing with a Stranger” by Meryl Comer, a former television journalist.

Courtesy: MerylComer.com

Courtesy: MerylComer.com

In this raw and honest memoir, Comer attempts to illustrate the “unvarnished reality” of Alzheimer’s while describing her life as the primary caregiver for her husband, a former esteemed NIH scientist who was diagnosed with early-onset Alzheimer’s in his late 50’s. He is still alive, 20 years later. Comer’s mother, who she’s always had a difficult relationship with, also has dementia and is still alive at age 94. The three live together, and a small group of dedicated caregivers work daily shifts to help with the care.

Comer tries placing her loved ones in facilities, but it is important for people to understand that not all Alzheimer’s patients are suitable for facility care, and that in fact, can be essentially “thrown out” if they are deemed a risk to themselves, staff, or other residents. Yet home care brings its own set of challenges, and neither road is an easy one to navigate.

I also think Comer does a good job of demonstrating that some people with Alzheimer’s don’t respond to the more positive therapy methods that are popular nowadays, such as music therapy, exercise, etc. Comer tries everything imaginable to reduce her husband’s anger and anxiety, but nothing seems to work. Comer’s husband has a form of Alzheimer’s that causes violent, physical outbursts, and both Comer’s husband and her mother were extremely manipulative, with her mother calling the police to claim she had been abandoned by her daughter.

I found beauty and awe in Comer’s resilience to take care of her loved ones in spite of all of the setbacks they faced together. Comer has given up her career and essentially her life to take care of her husband and mother. It’s a sacrifice that not everyone could make. To say this is a depressing book would be an understatement, but I hope it will help raise awareness of the debilitating emotional, physical and financial impact of this disease.

100 percent of the proceeds of the book will go towards Alzheimer’s research.

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What’s important is what was in the middle

I stumbled across this blog via a Facebook post. I’m not a religious person, but this blog post by Rev. Katie Norris is particularly relevant to those of us long-distance caregivers who struggle with guilt.

We should focus on happier times with our loved ones, not the final moments.

We should focus on happier times with our loved ones, not the final moments.

Norris has had to make the decision whether to return home for her mother’s last days multiple times. Dying of course is not a nice and neat affair, and one can be slowly dying for years. Most of us would like to be there when our loved one passes, but Norris points out that we have to accept our lack of control in this situation and that our ideal ending may not happen.

Ultimately, we must focus not on the ending, but the middle, on that time spent with our loved ones during the bulk of our lives.

I thought this was such a simple but profound philosophy. It’s a lesson that really hits home with me, because I have struggled so much with not being there when my father died.

I wanted to pass along the message to those of you who may be struggling with guilt or regret.

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The beautiful and ugly world of Alzheimer’s

I read a lot of personal essays written by those who have been impacted by Alzheimer’s, but this one really moved me emotionally. It was published on Huffington Post and titled, “I Never Expected My Mother to Be Diagnosed with Alzheimer’s When I was 26.” Not only does the essay give us a glimpse into how the younger generations are being touched by this disease, it is beautifully written.

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In the essay, Rebecca Emily Darling discusses some of the upsides of her mother’s Alzheimer’s, such as a greater appreciation of ordinary things, and a nicer demeanor. Yet even these “benefits” are tinged with sadness, because they only illuminate how much the disease has changed the personality of her flawed but beloved mother.

The essay by Darling sums up the good and the bad of this disease so eloquently. If you have a chance to read it, let me know what you think.

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A sweet and simple connection

I watched a video that has been making the rounds on Facebook lately, and I thought it illustrated how we can still reach those in the latter stages of Alzheimer’s, we just have to be flexible in our approach.

Musician Joe Fraley’s mother has Alzheimer’s, and back in October, before she was moved to assisted living, Fraley recorded a video of him and his Mom sitting on the porch while he strummed a guitar and sang.

Clearly, the woman is confused and asks poignant questions like “Who are we?” Fraley’s approach is refreshing because he keeps things light and conversational, while still addressing her concerns and not being dismissive. The woman responds to the music, and you can see how it lights up her face, even if it is just temporarily.

Not only is it important for those with Alzheimer’s to still connect with their family members in small but meaningful ways like this, I believe it is equally important for the family caregivers. While the recorded moment is still tinged with sadness, Fraley was able to reach his mother through the cloud of dementia by their mutual love of music, and that is a memory to cherish.

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Hopes for a new year

It’s that time of year where we analyze the current year ending, and create new goals for the next year.

I’ve never been big on making resolutions but the start of a new year does give us all a good opportunity to introduce new goals. Of course, as caregivers there are many things beyond our control, so those fall into the hoping and wishing category.

2014 has not been a bad year for me. I finally was able to reestablish full-time employment and I’m very happy with my job. The ability to work remotely from wherever I want is a huge burden off of me, in case I do need to leave my home city for an extended period to take care of Mom again.

mom-joy-nov2014

I had a story published in “Chicken Soup for the Soul: Living with Alzheimer’s and Other Dementias.” That was an exciting accomplishment.

I was able to begin chipping away the debt I accrued while taking care of Mom. While I haven’t reduced my debt to nearly the point I want to, I know it can’t happen overnight, and am thankful that my job allows me to pay off significant chunks each month. Slowly but surely on this goal is the only way I will succeed. (Or winning the lottery, haha.)

Mom’s health has been a bit of a roller coaster ride this year, especially the last half of the year. Today she is supposed to finally meet with the surgeon, but there is a snowstorm in her area and I don’t know if she will make the appointment. The delays in securing a diagnosis is frustrating. I can only hope that we figure out what is wrong and get her the treatment she needs soon. I’ve helped stabilize her financial situation by picking up most of her bills to pay myself, but I hope she can continue to live independently so we can avoid another financial crisis.

I’m taking a writing class in January, a weekend workshop kind of thing. I’m finally starting to pull together a plan for a book idea. We’ll see what comes of it, but it is definitely a goal of mine this year to continue writing, and that includes blogging!

Thanks to all of you who read my posts and take the time to comment, it is greatly appreciated. I hope 2015 is good to you and your family.

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