While the term ‘’role reversal’’ may be common terminology used throughout the caregiving world, what does it really mean for the status of your relationship with your parents and how does it affect your mind-set?
The truth is that if caregivers rely on these common catch phrases to describe the type of care they provide, it’s likely to colour their feelings and attitudes towards their role and their parents. The effects are not always positive and can, in turn, work to negatively affect a relationship between parent and child.
Yes, you may need to assert your authority in certain situations, block credit cards, hide the car keys, remind your parent to visit the bathroom and so on. But does this really take away from the fact that your parents were once young and have lived an entire life before they became reliant on you?
A concept that implies switching roles between a child and a parent, such as ‘’role reversal’’ can negatively affect your ability to preserve your parent’s dignity and sense of control as they deserve. It’s difficult enough to set boundaries and care for your parents without them feeling patronised or devalued in any way. The concept of role reversal can only work to compound these difficulties.
How should the idea of role reversal be treated?
The interpretation of this concept is largely left in the hands (and minds) of the caregiver. It’s important to remember that your parents are your parents, and no illness can ever change that
You are their child and they worked to care for and raise you as best they could for most of their adult lives. None of that important history can ever be wiped out just because you have taken over the role of caregiver.
The difference between caring for children and elderly parents
While this may seem obvious, it’s so important to remember as a caregiver that there is a stark difference between caring for elders and children. Children are just starting out in life, they are learning day-by-day and will eventually outgrow their dependency.
As a parent you make decisions based on the best interest of your child, hoping they will grow to be the decent, self-sufficient adults you’ve taught them to be. Once you have taught them what they need to know, children must be set free to make their own way in life - this is a natural part of being a parent.
Be so much more than a popularised phrase
On the other hand, caring for an elder may be similar in some respects, but the overall end-goal is vastly different. The reality is that elders suffer losses, day in and day out, as they age or become increasingly ill. They are aware of these losses and the life they had before. For a senior, there is no way of ‘’growing out of’’ of a situation or illness as their dependence on others only becomes increasingly necessary.
In order to maintain the parent and child dynamic throughout your caregiving journey, try not to hold onto popularised catch phrases which don’t actually do your job as a caregiver any justice.
Remember that your parents have lived – they have experiences and memories and stories to tell. As such, they may struggle with allowing you to take over control when needed. Be patient and respectful of this and both you and your parents can enjoy a loving relationship for as long as possible.
Not many people understand the kind of patience it takes to deal with the frustrating, unusual, stressful, repetitive and at times, hilarious, behaviours of those living with dementia.
Caregivers are faced with dealing with a rollercoaster of behaviours day in and day out, so it’s no wonder that this can sometimes catch up with you in the form of a blowout. As a caregiver you may lose your cool, not once, but many times, and it’s important to remember: it’s ok.
Losing your cool means that you’re only human and while you’re doing your best, this may just indicate that something is missing from your own life.
Have you ever thought about why you’re losing your cool? In the heat of the moment it’s obvious – you’re frustrated, impatient or just down right exhausted. But nine-times-out-of-ten, there’s an underlying reason behind a blowout.
Here are some of the potential reasons to consider:
- Exhaustion and lack of sleep
- Frustration over a lack of control in your own life
- Frustration over a lack of privacy
- Chronic stress
- Worry and uncertainty
- Financial stress
- Sadness or grief – a lack of processing emotion
- Depression and anxiety
While you may think you have your emotions 100% under control, what you may be experiencing is ‘displaced aggression’. As life coach Martha Beck explains, ‘stress rolls downhill’ which means our bottled up emotions or displaced aggression is dumped on the nearest target – your care receiver or loved ones.
Losing your cool could be a blessing in disguise as it may indicate that you simply need more in your life. Here are some of the most common ‘needs’ for hands-on caregivers and how to achieve them:
1. Personal time – caregiver respite is incredibly important. Whether it’s a couple of hours a day or a full weekend to yourself, this can do wonders for your own mental and emotional well-being.
2. An extra pair of hands – by this we mean more help. Don’t let your pride get in the way of this. Asking for help in the form of a hired aid, relatives or friends a couple times a week can take immense pressure off you.
3. A way to relieve stress – you may need to blow off some steam, and that is 100% healthy. Choose healthy ways of doing so: exercise, journaling, dancing, listening to music, cooking, baking or support groups.
4. Better sleep – stress negatively affects sleep cycles and this can really get the better of you. Sleep feeds a spring of good health, energy, mood and your levels of patience. If your caregiving duties are drastically affecting your sleep, you may need to reassess your routine and how this can be resolved. Remember not to postpone your own medical check-ups as disturbed sleep could indicate an underlying condition.
5. Be kind to yourself – this includes making time for the things your personally enjoy. Make your favourite meal every now and then, listen to the music you enjoy, watch your favourite show, engage in your favourite past-times. If your lifestyle is 100% governed by what your care receiver enjoys, you will end up completely losing yourself in it all.
At the end of the day, focusing on the disease and your caregiving duties to the point of complete exclusion could be your undoing. It may be easier said than done, but don’t forget about yourself in the bigger picture of your life!
Could the eye be a window into the development of neurodegenerative diseases such as Alzheimer’s and dementia? Researchers from Queen’s University in Belfast have found profound evidence that it indeed could be.
Research has shown that those suffering from Alzheimer’s disease experience impaired peripheral retinal circulation. The blood vessels closer to their optic nerve are wider, but begin to thin out drastically as they reach the retinal periphery. This means that blood flow is likely to become impaired, slowing nutrient and oxygen flow to the retinal periphery.
With these results recently published in the Journal of Ophthalmic Research, this study is the first of its kind which could be used to monitor Alzheimer’s disease and its progression. Team lead of the study, Dr Imre Lengyel, believes that through examining the eye we may able to surmise what’s taking place in the brain.
Research undertaken alongside health professionals and care providers
Based on observations throughout the study, the medical team believe that changes in the peripheral retina offer an association between the eye and the brain and how one can affect the other.
Through the use of ultra-wide field imaging, the team was able to determine distinct differences in the eyes of those with Alzheimer’s. Some of these eye changes include the development of ‘yellow spots’, also known as drusen, within the retinal images.
Drusen are small deposits of fat, protein and minerals which tend to form a layer underneath the retina as people age. Essentially, these deposits are harmless, but once they begin to accumulate and increase in size, this contributes to the degeneration of the retina and is a clear sign of neurodegenerative disease.
Imaging technology could indeed help determine the progression of the disease
Dr Lengyel believes that ultra-wide field imaging of the retina could help in the monitoring and progression of neurodegenerative diseases such as Alzheimer’s.
The medical study goes on to prove that eye imaging is a quick, simple and cost-effective way of monitoring Alzheimer’s when compared to costly and time-consuming brain scans. Although peripheral retinal imaging cannot be used as a diagnostic tool for determining Alzheimer’s, it can be used as a tool to closely monitor disease progression in the brain.
Essentially, this study has opened up a window into identifying high risk groups of people who could potentially develop neurodegenerative diseases, which makes prevention and development of these diseases far simpler and quicker.
Learning to love yourself first as a caregiver is a case of ‘easier said, than done’. But the saying ‘love yourself first before you can love others’ rings truer than ever in the world of caregiving. But why do caregivers find it so difficult to practice self-love? Is it a perpetual presence of guilt which limits this practice?
Some would argue that feelings of guilt and an unrealistic view of perfectionism is the primary cause behind constant self-criticism and a failure to truly put yourself first.
These unrealistic views and goals can leave you feeling constantly defeated, low and overly self-critical as a caregiver. If you’re looking to work on your self-love, here are a few simple steps to help you get there…
First things first, you will need to examine your attitude and thoughts towards yourself in order to let go of guilt and make room for loving yourself.
1. Avoid comparing yourself to others – comparison is the thief of all joy and can only lead to feelings of self-loathing, resentment and hurt. Try not to compare your life, your journey or path to other caregivers, friends, family members or even strangers.
2. Banish feelings of unearned guilt – as a caregiver, feeling guilty is probably a daily occurrence. You are prone to these feelings because of the vulnerability of your care receiver and circumstances which cannot be changed. Let go of these feelings as you, alone, cannot change the inevitable cycle of life and death and the journey your care receiver is on. You can only do your best to make their lives easier, happier and more comfortable.
3. Don’t let pessimism dictate your life – many caregivers struggle with feelings of pessimism and clinical depression. If you feel like you need to speak to someone about your feelings or unload heavy thoughts, then do so! Try and make a real effort to change your daily way of thinking and update your outlook on life. Time well spent on doing so can go a long way in changing your overall levels of happiness.
4. Accept that you are only human – yes, you’re a caregiver and that carries a lot of responsibility, but at the end of the day, you are still human and allowed to have flaws! The sooner you accept this, the easier you will become on yourself. Accept that you have flaws which may need to be worked on, but these flaws make you who you are, and plenty of people will still love you for that, regardless.
5. Exercise and nourish your body – this age-old nugget of advice never gets old. Looking after your body will help to look after your mind, it’s that simple. Exercising regularly and eating a well-balanced diet will give you more energy and help you to feel better about yourself, overall. This being said, avoid shaming yourself for missing a workout or indulging every now and then – remember, you’re only human (refer to point above!).
6. Forgive others, forgive yourself – holding onto grievances or feelings of resentment because you’ve been hurt by others in the past is just weighing you down. Let go of the transgressions of others and forgive them. The same goes for your relationship with yourself. This is so important – learn to let go of your past mistakes and forgive yourself for them. What you are holding onto probably isn’t half as terrible as you think it is. By forgiving yourself, you are letting go of feelings of guilt, regret and shame, while making room for self-love, acceptance and happiness. Learn from your mistakes, don’t hold onto them.
A final thought is to remember to choose a good support network and surround yourself with positive, uplifting people. Ultimately, this type of support system can help you on your journey to establishing a sense of self-love and they will only encourage you to do so. Absorbing their love and support can go a long way in establishing a love for yourself.
The accumulation of amino acids, known as amyloid beta in the brain has been dubbed one of the primary causes of Alzheimer’s disease.
Larger clusters of these amyloid beta are called beta-amyloid plaques, which eventually disrupt neuron signalling in the brain. This leads to the collapse of memory, personality and ‘normal’ everyday behaviour in an Alzheimer sufferer. Additionally, beta-amyloid plaques trigger the body’s inflammatory response, further encouraging the progression of Alzheimer’s.
Why a beetroot?
So where does the humble beetroot come in and how does it work to slow the progression of a disease such as Alzheimer’s? The answer lies in this root vegetable’s iconic pigmentation.
Researchers at the University of South Florida recently embarked on an experiment to test a particular compound found within beetroot pigmentation, known as betanin. This is the compound which gives beetroot its distinctive, dark red pigment.
During their experiment, researchers discovered that the betanin compound positively reacts with amyloid beta. Ultimately, this works to prevent the process of oxidation in the brain which is associated with the progression of Alzheimer’s.
Understanding the workings of betanin
Betanin as a compound is known as a forager of reactive oxygen, working to defend against oxidative stress. Basically, betanin works to protect against DNA damage, oxidation in the brain and body while simultaneously lowering blood pressure levels.
Beetroot’s betanin compounds not only help to lower blood pressure, but also help to increase blood flow to the brain and increase the body’s oxygen circulation. Based on this, researchers have begun working on a hypothesis that betanin helps to prevent the clustering of amyloid beta in the brain, which ultimately leads to the progression of Alzheimer’s.
During thorough experimentation, researchers noted that the addition of betanin to a chemical compound mix of zinc and copper worked to reduce oxidation in the brain by up to 90%. As such, researchers are now working to include beetroot-derived compounds into modern-day Alzheimer’s medication as an inhibitor of the progression of the disease.
What lies ahead?
Despite these positive findings, researchers have expressed that the development of these new medications is by no means a ‘cure’ for Alzheimer’s patients. However, they do offer hope in inhibiting the further progression of the disease.
They have surmised that the introduction of betanin to the diet of an Alzheimer’s patient, whether through nutrition, medication or a combination of both, holds the potential to stagnate the devastating effects of Alzheimer’s. A diet rich in beetroot can be amazingly colourful, tasty and healthy and this humble vegetable can be introduced in a number of exciting recipes.
Dementia related wandering is a common side-effect of this disease. Not all dementia patients are likely to end up as wanderers, but there may be an instance or few where wandering behaviour presents itself during your caregiving tenure.
What is dementia related wandering?
This is a very different form of wandering from merely exploring the neighbourhood or meandering about the city. Dementia patients with wandering habits are purpose driven, with wandering patterns often triggered by memories or changes in routine, lifestyle or life events.
It’s important to fully understand the driving force behind their wandering in order to a get a hold on their wandering habits. In this way you can take necessary measures to prevent wandering and decrease incidents of injury or getting lost.
Understanding wandering behaviour
In order to understand why a loved one with dementia has taken to wandering, you will need to understand what they’re trying to achieve or where they want to go. Sometimes, it’s as simple as asking the question. But more often than not, it’s not that easy and you’ll need to observe their behaviour closely.
Step 1: Analyse what you are seeing
Some of these questions and scenarios may be common in relation to wandering behaviour:
- Are they trying to ‘escape’ from somewhere?
- Are they moving from one place to another with seemingly no direction or final destination in mind?
- Are they actively searching something or someone i.e. walking with purpose?
- Are they waking and wandering in the middle of the night feeling disoriented?
- Are they anxiously pacing up and down in a certain area?
- Are they following or shadowing another person and their movements?
- Are they feeling paranoid and trying to escape ‘danger’?
Step 2: Take note of the time of day and frequency of wandering
Make a note of the time of day the wandering instances tend to occur as well as their frequency throughout the week. This way you can begin to decipher a pattern and a possible meaning behind their behaviour. You can also keep track of wandering patterns and learn to prepare yourself and prevent a wandering episode.
Step 3: Envision the underlying cause of wandering
Take all your observations and compile a rough understanding of why your loved one could be wandering. During this step, consider your loved one’s lifelong routines, how active they used to be, the onset of new dementia symptoms, changes in routine and lifestyle which could be triggering such behaviour. From your basic understanding you can work to try and reduce wandering episodes.
Management of wandering behaviour
If instances of wandering are becoming difficult to manage, it may be worth undergoing a thorough analysis from a dementia expert. There are some medications which can be prescribed to assist with sleep/wake cycles and reduce instances of wandering.
However, if medication is not an option, there are certain interventions you can employ to help reduce wandering episodes, such as:
- Keeping your loved one engaged around the general time of day they tend to wander. Include them in chores, make them a snack, watch a TV show together etc.
- Move locks and latches on doors to be out-of-reach of loved ones.
- Place bells on all exit doors as an extra alert system if they leave the house.
- Use wearable medical alert devices which signal when a loved one has left the vicinity of your / their home.
In instances where wandering is more of a regular rather than occasional occurrence, make sure to sew a name and phone number into coats or items of clothing. Place contact information in their pockets, a purse or wallet for simple identification. Lastly, notify neighbours and local authorities of their habits and where they should be returned to if found.
It’s important to note that dementia related wandering is not always a permanent habit and eventually the cycle of wandering can be broken. Dementia related behaviours evolve with the illness, so if your loved one has a habit of wandering, just keep in mind that it won’t last forever!
If you’re new to caregiving, first and foremost –welcome. Your journey through caregiving will be filled with a fair share of ups and downs, but most of all, it can turn out to be one of the most fulfilling commitments of your life.
More often than not, many care givers are thrust into the position of caring for an elderly parent, partner or loved one without fair warning. Maybe it was a bad fall, a sudden bout of illness or a turn for the worse for an Alzheimer’s patient. Either way, full-time care giving and the financial strain is just not something you had / have prepared for.
As a care giver you may feel frustrated, lost and overwhelmed due to the toll that Alzheimer’s and dementia can have on your loved ones.
Parkinson’s disease (PD) is a neurological condition affecting millions of people across South Africa. Typically characterised by shaky hands, an unsteady walk and rigid limbs, PD is a progressive disease which can worsen over time. Aside from the problems associated with movement, PD can produce lesser-known neurological issues, such as Parkinson’s disease psychosis.
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