Caregiving Is, In And Of Itself, A Difficult Path But Caregiving For An Alzheimer’s Patient May Be The Toughest Road Ever
Many people who have a loved one with newly diagnosed Alzheimer’s are in the dark about what exactly that diagnosis means now and, even more importantly, how the diagnosis will affect their lives in the future.
Prospective caregivers must arm themselves with all the knowledge they can get about this devastating disease and how it will impact their lives in the future.
Knowledge is power, especially when it comes with dealing with the unpredictable behaviors that the disease presents.
Alzheimer’s Or Dementia? Which Is It?
The first step to learning how to deal with this cruel diagnosis is understanding what this beast called ‘Alzheimer’s’ is; the second step is learning how to help and keep safe a love one with the diagnosis.
A lot of people think that the word ‘Alzheimer’s’ is synonymous with dementia, but, that’s not exactly true.
The easiest way to think of Alzheimer’s and dementia is to remember that dementia is an umbrella term – there are a lot of rain drops falling over that umbrella! Each ‘rain drop’ is another type of dementia and Alzheimer’s is the most common rain drop found. An estimated 80% of all dementia patients will be diagnosed with Alzheimer’s.
Put another way, everyone with Alzheimer’s has dementia but not everyone with dementia has Alzheimer’s – they could have a host of other diagnoses.
Other diagnoses that fall under the term of ‘dementia’ include Lewy Body Disease, Parkinson’s, Huntington’s, frontotemporal dementia and a host of others. Alzheimer’s is only one type of dementia.
When Do Alzheimer’s Symptoms Start?
Caregivers may notice dementia symptoms before the disease is formally diagnosed by a Neurologist. A loved one may suddenly forget how to get to the store or may leave the oven on. These could be normal aging symptoms but, they could also point to an Alzheimer’s diagnosis in the future.
Alzheimer’s is a very personal disease in that it doesn’t present with the same symptoms in any two patients – it is, in fact, as individual as people are.
What does present the same is that, in all Alzheimer’s patients, short-term memory starts to wane. Short-term memories are things that happen to us on a daily basis; the memories are just there for a moment and, if the brain deems them not important, off they go.
Long-term memories are not affected in quite the same way. In fact, long-term memories live on, ostensibly, forever.
For example, your aging grandmother might be able to tell you about her bedroom growing up (all the way down to the color comforter…) but can’t remember if she ate lunch today.
And, Alzheimer’s does not discriminate only against aging people – there is also a childhood Alzheimer’s which strikes children as young as toddlers.
Care Giving Challenges
As an aging population, more and more people will not only be afflicted with this cruel disease, but the village needed to support them will have to grow.
A person’s village is not only their immediate family but, instead, extends to caregivers, doctors, and other support staff who support the patient and the family. Even a grocery clerk who takes time out to try and engage with an Alzheimer’s patient is part of the village.
Caregivers who have to deal with a changing disease in an always changing patient have their own physical and mental challenges. A lot of caregivers will admit to having some sort of depression. And, physical ailments can appear (such as lifting or assisting patients).
More than one caregivers has wondered if they are getting the disease due to their own loss of memory – it’s hard to keep everything straight when the world is crooked!
The below table offers some common symptoms of this disease and some possible solutions.
| Symptom | Possible Solution |
|---|---|
| Hallucinations | Ask questions and draw out information about the hallucinations. Have a conversation. Remember, any connection you can make to their brain is a win Step into their world. It’s easier Ask questions and draw out information about the hallucinations. Have a conversation. Remember, any connection you can make to their brain is a winexpecting them to come back to ours. |
| Wandering | Install alarms such as bed alarms that will ring when either the patient leaves the bed or steps on the floor |
| Refusing to bathe | Introduce red accessories into the bathroom. For some reason, the color red does not fade in one’s memory. To an Alzheimer’s patient, white and black represent dead space, such as holes. They might be unwilling to walk on a white bathroom floor. |
| Mood swings | This is a difficult one as that sweet Mom you remember may turn into a raging bull when her brain is ravaged by Alzheimer’s. Try to remember the it’s the disease talking, not your loved one. |
| Difficulty swallowing | As the disease progresses, some patients may actually forget how to chew or swallow. Serve finger foods. For some reasons, Alzheimer’s patients may be able to eat small finger foods. Experts suggest eating small pieces of food taps into an automatic motor rhythm we’ve used all our lives. Used thickened liquids and pureed foods. Use verbal encouragement to cheer them on. |
Where To Go From Here
As I mentioned earlier, arming yourself with the most information you can find is a good start. The below books are excellent reads and all are available on Amazon.com:
The 36-Hour Day, sixth edition: The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer Disease, Other Dementias, and Memory Loss (A Johns Hopkins Press Health Book)
When Someone You Know Is Living in a Dementia Care Community: Words to Say and Things to Do (A 36-Hour Day Book)The Comfort of Home: A Complete Guide for Caregivers
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