There comes a time in every family’s life where a formal meeting should be held to discuss the future of an ageing or ill parent. This progression of life is inevitable, and there will come a time where the future of those who once looked after you, needs to be made a priority to ensure they receive the care they deserve in return.
But one thing’s for certain: family dynamics can be complex. With a number of competing personalities, deep-seeded family history and the quality of existing or non-existent relationships, family meetings are not always easy, and sometimes a resolution cannot always be found.
If a family meeting is on the cards for a discussion about the future of an ageing, frail or ill parent, here’s how to approach things for the best possible resolve.
Usually the oldest sibling or primary caregiver of a parent is the one to host this meeting. It’s wise to call each family member beforehand and inform them of the purpose of the meeting, and why it’s important, they be there. Once the meeting takes place, here are a few essential steps to cover:
1. Identify family roles
Family roles are based on the past or present relationship a sibling or child has with a parent. Openly discuss who usually handles each aspect of a parent’s life and make suggestions on who should ‘step up’ in their time of need. Ensure that each family member is happy and 100% able to commit to this role with the time and other responsibilities they may already have.
2. Bring in a third-party if needed
If your family relationship is a particularly sensitive or volatile one, it may be worthwhile bringing in a neutral, third-party to help oversee the family meeting. Someone such as a close family friend, a clergyman, a social worker, a counsellor or even a family doctor can help bring in an objective stance and give some real perspective to the meeting.
3. Plan out the meeting agenda
This may sound a bit formal for a family meeting, but it helps to ensure all important topics are covered in one session, without having to meet back and forth across several months. This is especially helpful if family members have to travel from far for this meeting. The primary caregiver of your parent or the eldest sibling should draw up an agenda of topics to discuss, including:
- Emotional sharing: how does each family member feel about a parent’s illness, diagnosis and thoughts about their inevitable death?
- Up-to-date medical reports from a parent’s doctor and medical procedures recommended by them.
- The needs and wants of your ageing or ill parent and what they need most.
- Living arrangements of the parent and how they will be made, i.e. will they move in with a family member, an assisted living facility or remain in their own home perhaps with a live in carer?
- Financial costs: how much will an assisted living facility or live in carer cost, who will cover what cost, any other financial resources available.
- Who will continue to be the primary caregiver and what kind of support do they need i.e. shopping, cleaning, laundry, transportation, financial, respite.
- Amount of time required from each family member to be spent with an ageing or ill parent.
- Other sources of help and support available, i.e. friends, respite care, nursing home, church etc.
4. Make sure everyone gets a chance to talk
This is extremely important in allowing each family member to voice their emotions and opinions in order to avoid feelings of resentment or anger at a later stage. All feelings are appropriate and have the right to be expressed.
5. Recap on all decisions made
At the end of the meeting, do a quick run over on all the big, important decisions that were made so that everyone has a clear understanding of what their role is going forward. For some families, putting it all down in writing can be a helpful reminder for future reference.
One of the most important factors to keep in mind with family meetings is that a full resolution of all topics is not always possible. A mixture of family dynamics, commitments, responsibilities and personalities makes this difficult, that’s why compromise and flexibility are key. Significant change happens slowly, remember to keep this in mind!
Caregiver stress is real – don’t let anyone fool you into believing that you are over-reacting or shouldn’t be feeling the way you do. Full-time caregiving is demanding - physically, emotionally and mentally. Some days, you may even feel like your life isn’t your own.
Add to this concoction of stress the guilt of feeling like you’re not doing enough for your care receiver, the judgement of those who do not understand your situation and the resentment of a spouse. All of these emotions can add up over time, and all it takes is one snide remark or sarcastic comment to send you over the edge. This is especially potent if you are prone to suppressing your feelings or do not receive the caregiver respite you need.
The unlucky targets of your caregiver blowout are usually those who are closest to you, i.e. your care receiver, a spouse, a sibling or close friend. While caregiver blowouts are understandable from time-to-time, they may leave you feeling riddled with guilt and shame afterwards.
Here’s how to apologise in a genuinely heartfelt, meaningful manner:
In the heat of the moment, you may say something hurtful, spiteful or completely out-of-character. While a simple apology at the time may not seem like much, it will have to do for that moment. This is because a truly heartfelt apology takes introspection and an understanding of why you had a blowout in the first place.
First thing’s first, you could begin with saying: ‘’I am sorry. I didn’t mean what I said; it was in the heat of the moment. I think I need some time alone as I’m feeling overwhelmed.’’
But be aware that an excuse is not an apology, nor will it suffice as reason enough for your behaviour. Deep down, you will need to do some soul searching and think about how your caregiver blowout could have affected those close to you.
One of the main reasons why you direct your anger at those closest to you is because you feel ‘’safe’’ with them and know, deep down, they will forgive you. However, this is no excuse to treat them this way. If you are harbouring anger or resentment in any way, it’s important to talk about it with those concerned, instead of bottling it up. This is how caregiver blowouts happen, often directed at an undeserving target.
Once you have pinpointed the meaning behind your anger, it’s essential to approach your loved one or care receiver and apologise once again, in a sincere manner. Tell them about how you are struggling to manage your stress and need to make more time for respite care for yourself.
Ultimately, learning to talk about your emotions and find a healthy work-life balance with caregiving is utterly essential to your mental and physical health. At the end of the day, it makes you a better caregiver and makes for a better quality-of-life for all of those you care for – family, friends and spouse.
You may have heard of Hendri Terblanche in recent years- the businessman who rightfully and successfully campaigned for increased paternity leave rights for prospective fathers throughout South Africa.
Well, he is on a new mission and has petitioned parliament to extend similar rights to family caregivers looking after elderly loved ones through South Africa.
At present, most employees are offered a minimal amount of ‘family leave’ days which are most commonly reserved for emergencies. Other than that, employees are forced to take unpaid leave to care for family members in need. If the situation is dire enough, they may need to leave their jobs altogether.
To this end, it’s obvious to see why Hendri Terblanche is appealing to parliament for an extension of these leave days and the availability of unpaid leave offered under the labour law. He has since petitioned parliament to introduce an ‘Elder Care Leave’ clause, allowing for three days paid leave, or 6 weeks unpaid leave to care for an ageing or terminally ill loved one.
While it may not be a financial option to place elderly parents in the hands of professional care, is a mere six weeks of unpaid leave enough to ensure frail, ill or cognitively impaired loved ones receive the care they need?
This is where the costs of caregiving need to be carefully weighed
Becoming a primary caregiver for an elderly parent is a huge responsibility, and one that cannot be made lightly – especially if your career is a priority or you are a primary breadwinner.
Some of the most significant questions to ask yourself before taking on the responsibility of caregiving, versus placing an ageing parent in home care include:
- Do I have the space and facilities in my home to support them?
- If not, what amendments will need to be made and what cost?
- Do I have the time, resources, support and finances to take on the responsibility of becoming a primary caregiver?
- Will my company support this decision and what kind of leave allowances are offered to me?
- Is my spouse supportive of this decision and will they be able to help where needed?
- How will my children react to the presence of a frail or seriously ill loved one in their home?
While there is a myriad of things to consider when working a full-time job and considering primary caregiving, one thing must be made a priority- and that is your own peace-of-mind. Will the potential strain of full-time caregiving be worth saving money on professional care? Or will the cost of professional care outweigh the stresses of full-time caregiving, and potentially your career?
The decision is not an easy one; you will need to balance the pros and cons of both options and ultimately, weigh up the costs of personal caregiving versus professional caregiving.
While the day-in and day-out care of those with dementia and Alzheimer’s can be both repetitive and stressful, there are ways to lighten the mood and boost brain stimulation at the same time.
Research has shown that game playing works to engage the brain, memory retention, memory recall and overall health in those that suffer from neurodegenerative diseases.
Games don’t need to be long or overcomplicated, as long as they centre on participation – for both you and your care receiver.
Game playing also works to build on your relationship. By participating in a dual-player game, be it cards, a board game or consol gaming, this is a chance to reconnect with a friend or loved one.
What are the benefits of game playing?
Game playing results in a physical, cognitive and emotional response, stimulating all the senses.
It can boost cognitive recognition in those with memory loss, encouraging memories and building on processing skills – recognising numbers, shapes and colours etc.
- Being physical during game playing is healthy for ageing bodies – especially with games such as Wii bowling, ball games, dart throwing, golfing and more.
- Game playing increases socialisation between family members, friends and you, as the caregiver. This helps to fend off loneliness and depression.
- Connecting with others over game playing can boost a sense of purpose in seniors, especially if game playing becomes a regular activity.
- Game playing is good for the soul through laughing, interacting with others and feeding off positive energies.
- It can improve hand-eye co-ordination with specific card and board games.
- Video games centred on exercise, such as those on Wii Fit, work to improve balance, fitness and co-ordination.
The best games for memory and cognitive stimulation
Depending on the level of memory recall, cognition impairment and frailty, there are numerous games which offer the above benefits:
- Card games: Bridge, Gin Rummy, Cribbage, or Hearts are a little more complicated. For simpler games go for Uno, Old Maid, Solitaire, Go Fish, or Crazy Eights.
- Board games: for games focused on strategy opt for Chess, Clue, Backgammon, Scrabble, Risk, Yahtzee, or Trivial Pursuit. For something a little less difficult, go for Checkers, Candy Land, Trouble, Connect Four, Don’t Wake Daddy, or Kerplunk.
- Memory stimulating games: word games such as Name 5, crosswords, Sudoku, word search, jumble, and I Spy are excellent for this.
- Video or Computer Games: depending on cognitive ability, some of the best games include Smart Brain, Brain Age, Words with Friends, Sea Quest, Candy Crush, Tetris, Wordscapes and WordSearch
- Co-ordination games: focus on building games such as Jenga, Legos, Qwirkle, Jigsaw Puzzles, assembling simple nuts/bolts, folding laundry and working with playdough.
- Movement games – also known as ‘exergames’ using video platforms like dance party or Wii sports, darts, badminton, bowling, ring toss, horseshoes, parachute, volleyball, bean bag toss and more.
Depending on the progression of the disease, be it dementia or Alzheimer’s, a care receiver should be able to participate without frustration and full cognitive attention. Becoming frustrated, aggressive or irritable by following rules or remembering strategy can only result in a negative experience! So remember to choose your game wisely.
The reality is that many caregivers will eventually have to face the palliative care of a loved one as age or illness begins to take over. It’s never an easy conversation to have, but when is a move to hospice care the right decision? Most caregivers and doctors would recommend as early as possible after a loved one has been diagnosed as terminal.
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.
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