1. Tell us about the onset and diagnosis of Parkinson’s disease for your mom-in-law

The first noticeable symptom of Parkinson’s was her tremendous weight loss despite eating well. My mom-in-law was a very active person. However, after her fall she’s been bedridden for the last four months. Until the onslaught of the pandemic, she used to go to the neighbourhood club to play number games [bingo] almost every day. The pandemic came as a jolt and her active life turned turtle and she was confined in the apartment 24×7 with no activities to engage in. Over the weeks she lost track of day, date and month. We thought it was the lockdown as most of us were feeling overwhelmed and trying to deal with this brain fog. However, eventually she started to forget things involving day-to-day activity like bathing, basic hygiene after using the washroom, taking off the dentures before bedtime, taking her regular medicines, operating television and mobile phone and so on. Often she wouldn’t remember that she has already eaten a meal. We noticed that she was forgetting things, events and people. Since I have preliminary knowledge about the symptoms, I suggested we opt for an online consultation with a neurologist. Subsequently she was diagnosed Dementia with Parkinsonism.

2. What have been the biggest challenges as caregivers to someone with Parkinson’s

The biggest challenge is to stay balanced and level-headed while dealing with a Dementia/Parkinson’s afflicted patient. They are bound to behave erratically, aggressively and sometimes even nasty which, at times, could be very hurtful. At such times it does take a toll on the caregivers physical as well as emotional wellbeing. We also had to deal with sleep deprivation, fatigue, anxiety and uncertainty of the future amongst many other challenges. Personally, I was coping with isolation too. The lockdowns, followed by her sudden diagnosis, cut me off from the outside world.

I missed out on family get-togethers or holidays— I did not even visit my maternal family, despite being in the same city. We had to say no to so many dinner invites and social gatherings, as we had no help even for those few hours to sincerely look after my mother in law. Emotionally, my mother in law is extremely dependent on my husband and me and after dementia she expects us to help her carry out her day-to-day requirements. It was challenging but we kept reminding ourselves that our mother is looking for support in us and all we can do is be by her side.

3. How do you keep your MIL mentally active?

I did a thorough research on dementia and Parkinson’s and also consulted doctors and other caregivers on how I can keep her motivated. I joined a few support groups/ caregiver groups. The encouragement from all these unknown people who were sailing in the same boat facing different storms is another kind of love and empathy.

Initial responses from the other caregivers were to spend a good amount of time with her, use effective communication and be her emotional support. They also emphasised on doing small tasks.

I started giving her simple brain taxing exercises. For example, I mixed different coloured grains and asked her to segregate them; I showed her family photographs and asked her to identify the members in it. Later I played bingo with her; I made her practise reading as well as writing her name and address, solved puzzles, involved her in organising her cupboards etc. Since she is religiously inclined, we made sure she prayed everyday. Apart from this we also had all our meals together which made her feel happy. Every month I give her a manicure/pedicure and paint her nails.

4. Do you feel like you’re burning out. If yes, how do you deal with it?

Of course! We feel helpless, frustrated and dejected so often. Burnout is natural as we were dealing with the double change of her illness and the lockdown. Trying to understand and adjust to the changes in her behaviour at a time when there absolutely no external help available was really exhausting. We yearned for a break for just a few hours in a week but it was impossible. Caregivers struggle with finding me-time. Nevertheless, we are really thankful to a few people who have been our sounding board. I am grateful to one of our close friends who has been accessible on phone 24*7, despite staying in a different city. Whenever we felt like venting we call him. He keeps us motivated, shares our pain and gives logical, spiritual and practical reasons to continue caregiving. Talking to someone you trust always helps. I also make sure to regularly stay in touch with my maternal family and my close friends over video calls/ messages — it helps to keep me going.

During some moments of boredom or burnout my husband and I would take time out and create a restaurant like setup at home, order good food and enjoy a delectable meal. I would mindfully indulge in some online shopping. I started practising gratitude and also conducted gratitude workshops month after month to keep myself occupied. To divert my mind from caregiving challenges, I utilised the time being at home to complete my Postgraduate Diploma in Counselling [online]. The idea was to sneak out some me-time/ we-time amidst caregiving when we were reaching the threshold.

5. Did you consider hiring professional help to take care of her?

My husband and I have always been her primary caregivers. Like I mentioned earlier, she is dependent on us emotionally and getting help for her would probably make her feel neglected leading her to feel more vulnerable and be more aggressive. Like a little child needs her parents, she needed us around in front of her eyes. We understood that such patients are required to be connected more on the emotional level than on the medical level.

We also had our inhibitions about hiring help from nursing agencies due to the ongoing pandemic.

6. What symptoms of Parkinson’s are most challenging for patients and caregivers.

There are many! For example, those with dementia/Parkinson’s tend to have disturbed sleep which leads to sleep deprivation in caregivers. Sometime, they may try to get out of the house in the middle of the night, like my mom-in-law once did. Since we stayed with her 24*7, we could notice every little change in her behavior and thus take the necessary action to prevent any hazards. We got a safety lock fixed from inside the house to make sure she’s safe while we slept at night.

There were days when she lost control of her bladder or bowels and those days were very challenging for her as she felt embarrassed and helpless. It was equally challenging for us to deal with her at such times as either she would cry inconsolably or behave obnoxiously. We were bound to feel tired and get upset. However my husband and I tried our level best to maintain our equilibrium and stayed focussed on helping her.

Most people are unaware that Dementia/Parkinson patients can sometimes use severe caustic language, which can hurt the caregiver deeply. My husband and I too had our share of such instances when we felt suffocated.

7. Tell us about your experience from the perspective of a daughter-in-law

It is a constant battle between practicality v/s morality. Practically, we feel we must focus on living our life, move on from caregiving, work towards our future or go on a good-long holiday. Yet, on moral grounds we feel the struggle my mother is going through is real. And, at such times all she needs is reassurance that we are here. We are truly glad we have been continuing to be there for her. Although caregiving is a seemingly never-ending roller-coaster ride, it has made us more selfless, compassionate, loving, caring and patient individuals.

The role reversal made everything smooth and easy going. My paradigm shift of taking up the role of a nurturing parent to my mother-in-law gave rise to tremendous compassion and humility in me. I started to address her by her name and in no time we became very good friends. My love manifested and encompassed her so well that, like a child, she surrendered to me and thereafter she couldn’t let me slip out of her sight, even for an hour.

8. What do you think is lacking in India for patients and families with Parkinson’s?

1. Lack of awareness about the condition
2. Not disclosing the diagnosis to friends and family considering it to be a taboo
3. Siblings not sharing the responsibility of care-giving, thereby causing burnouts
4. Not consulting the neurologist regularly
5. Forgetting to provide emotional support to our senior citizens.

One must realise that what patients of Parkinson’s disease feel lonely and isolated and most of the time they are unable to express it and hence make do with whatever they are getting. But, all they look for is emotional support which most of us either forget to offer or are too busy to give. The moment we realise and accept that emotional support system is important along with other paraphernalia, one can develop an excellent relationship with the patient.

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What are the symptoms of Alzheimer’s Disease?

Alzheimer’s Disease starts as simple forgetfulness, which is normal in the ageing process. It is when people repeatedly forget names, misplace things and forget recent incidences that it becomes a matter of concern.

Mild cognitive impairment

In the early stages the person is not able to learn new skills like a recipe. They may not be able to negotiate a new route while driving or perform a challenging task at work. There may also be a change in their personality. The person becomes depressed, apathetic or quite the opposite; they become excitable with irritability and agitation.

Mild AD

In this stage, a person is unable to handle bank affairs, shop independently or plan a dinner for friends. But they can carry out daily activities like bathe and dress. As AD progresses, the forgetfulness worsens. They may not get the right words for things, people or places. They may misplace things frequently and keep household items in odd places. They could, for example, keep shoes in the fridge instead of the shoe rack.

Moderate AD

The person forgets recent events, conversations and becomes irritable when this is pointed out. They may get lost in their usual surroundings or even in their own house. They may not be able to dress appropriately and may be unable to give out their correct address when asked. At this stage the person is unable to live independently.

Moderately-severe AD

The person is unable to carry out basic activities like brushing, bathing, dressing, using the toilet or having a meal independently. They get confused with people and may recall dead people as still being alive. They are not able to remember the names of their parents, children or grandchildren or hold  meaningful conversations.

Severe AD

The person needs assistance for all their daily activities. Speech is limited to a few words and there may be repetition of a particular word. Later, the person becomes speechless. The person cannot walk and is wheelchair bound. With further progression of AD, the person is unable to sit with their head held upright and is then confined to bed. They cannot swallow and need a feeding tube. Their control over urination and defecation is lost. The body becomes rigid and limbs get contractures and are in a fixed posture. The person involuntarily grasps objects with their hands and sucks on anything brought near the mouth due to primitive reflexes.

Is there a cure for Alzheimer’s Disease?

Currently there is no cure for AD. In the early stages, medications can improve memory to some extent and may even slow memory decline.

Educating caregivers of persons with Alzheimer’s Disease is important as they are prone to chronic stress and burnout is common. A good caregiver support programme improves the quality of life of AD patients and their families and delays placing AD patients in nursing homes.

Can we prevent Alzheimer’s Disease?

While there is no definite way to prevent AD, there are some precautions one can take. Eating dark green leafy vegetables, tomatoes, fish, walnuts, nuts, black berries and foods rich in omega-3 fatty acids helps to protect against AD. Dairy products, red meat and butter are high in saturated fats and are considered unhealthy for the brain. Learning to play an instrument or a speak a new language, doing crossword puzzles or other activities like solving Sudoku that require the brain to exercise may help reduce the risk of Alzheimer’s Disease. Remaining socially active and mentally engaged may delay cognitive decline.

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With Alzheimer’s, it becomes emotionally very difficult for family members who are involved in the daily care of the patient. Here are a few tips to help family members manage their dear ones with Alzheimer’s disease:

Avoid generalising the memory loss

Alzheimer’s patients tend to not remember most things, due to which family members or care givers may tend to assume that they remember nothing. Such assumptions can be detrimental in the care of the patient as it further alienates them from the people around them and may set back their treatment and worsen prognosis.

Support them in retrospection and recollection

The ability of Alzheimer’s patients to remember diminishes with age, therefore patients tend to forget recent events more readily. Though they tend to remember cherished memories which are deeply engraved in their minds, talking about the old times helps them in recollecting those memories. Going through family photos, videos or reminiscing about events may help them to jog their memory in a relaxed manner without them feeling pressurised to recall something that they may have forgotten. Allow them to take the lead in a conversation.

Address them by their name

Based on the patient-caregiver relationship, it is important to call the patients by their name. This helps in keeping the relation in perspective and they become more acceptable of the people around them.

Create eye contact and sit at the same level

It is important to make the patient feel that they are being cared for. Eye contact plays a very important role in comforting them and creating a sense of belonging. Maintain eye contact with them. Instead of standing over them, sit at their level, as this helps in reducing the feeling of skepticism they may feel about your actions.

Help them understand

While speaking, keep the pace slow and talk to them in short sentences so they can comprehend better. Alzheimer’s impacts their capability to understand many different things at a time. If introducing a new person, activity or a change in their routine, be extra patient with them as they may have many questions or may take time to comprehend you.

Be patient with them

Many a times Alzheimer’s patients ask questions that can irritate and frustrate family members or caregivers. Therefore, the situation needs to be handled with patience. Talking to them like they are children may not work either. Also, one should not force them to recall anything during conversations as they may feel embarrassed and insulted. From time to time you can have a discussion with them, and get them to agree that they can just ask for answers when they are unable to recall something.

Build involving and consistent experience

It is not easy to involve Alzheimer’s patients in social activities at home. But the patient can be involved with other family members by engaging them through pictures and music. It is advisable not to shift their rooms or living place frequently as they take more time to adjust to the surroundings.

Take safety measures

Use anti-slip mats at home which can be replaced for the safety of the patient. Leave the lights switched on at night as they might lose direction at home or trip while walking. Make sure that the doors are locked to avoid the patient from wandering out. Inform neighbours about the patient’s condition, so that help can be sought quickly in case of an emergency or when the patient is alone at home. Keep the home—or at least the patient’s room—clutter free and devoid of any sharp objects or plastic bags, in order to avoid risk of injury or suffocation.

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We’ve put together a list of benefits that coffee offers. And for non-coffee drinkers thinking this does not apply to them, think again. Energy drinks, tea [even green tea] and most chocolates too contain caffeine.

1. Coffee can boost your workout sessions

Caffeine may trigger release of adrenaline, a hormone that prepares you for physical exertion. It keeps you alert and also helps in performance. Drinking a cup of black coffee an hour before your workout will help increase your endurance and make you perform better. This can also reduce the soreness you feel after a strenuous workout. Coffee also helps to break down body fat and make it available as fuel.

2. Drinking coffee could reduce feelings of depression

Depression is a serious mental health disorder; we’re in no way suggesting you can cure it with a few cups of coffee. But coffee does have active ingredients that stimulate the nervous system and boost production of neurotransmitters like serotonin, dopamine and noradrenaline. These play a huge role in elevating your mood and keeping you happy. In a study carried out by Harvard school of Public Health it was observed that coffee had reduced the risk of suicide by 50 per cent.

3. It helps you stay attentive

People who consume 200 milligrams of ground coffee or, for instance, the 8oz cup of coffee in Starbucks, have a higher recall level. It improves various aspects of brain functioning such as memory, mood, vigilance, energy levels and your general cognitive function.

4. It may boost your weight loss efforts

As mentioned earlier, caffeine helps to burn fat and that’s the reason why it is a major ingredient in fat burning supplements. Black coffee without sugar is really effective. Of course, drinking coffee must be combined with a healthy diet and exercise. If you’re adding milk, cream or sugar to your coffee with a donut on the side, your weight loss will remain a pipe dream.

5. Coffee may safeguard you from Alzheimer’s and Dementia

A regular habit of drinking up to four cups of coffee a day from the age of 40 years can help reduce the risk of Alzheimer’s or dementia. Continuous caffeine consumption can help reduce cognitive decline in older adults.

6. The benefits of coffee for skin

Cosmetic companies have woken up to the benefits of coffee because it makes your skin look flawless and reduce cellulite. It is one of the popular ingredients in skin care products. The antioxidants that are present in coffee can help eliminate wrinkles and fine lines. It is also used in scrubs and soaps and has several benefits such as diminishing dark circles, skin softening and skin brightening.

7. Caffeine can reduce the risk of developing cancer

This Cup-of-Joe can help reduce the risk of various oral and throat cancers. Adults who consume about four cups of coffee daily are less likely to fall prey to this treacherous disease. Decaf may have a weaker or slower effect.

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The presentation of illnesses is very different at this age which makes a definite diagnosis difficult. Thus there are more chances that in spite of the best possible attention given by the caregiver, the early signals can be missed and very often attention is given only when there is a crisis. Visits to the doctor at this point become need-based and very often the preventive aspect, nutritional needs and drug review are not addressed due to the urgency of the situation and a lack of time.

The IMPACT of old age

The question arises—how can we attend to the needs of this important and ever increasing population within the framework of our country’s health care system? Let’s see what the parameters are and the challenges that need to be addressed at this age and whether we are doing them right.

To understand and remember this let’s remember the important points as an Acronym “ IMPACT”—Where I stands for Independence, M for Mood, Memory and Mobility, P for Prevention, A for Appetite, C for control over urine and T for treatment including on-going medications.

Independence

The independence of a person is the first thing that is impacted as one grows older. However, it is not necessary that just because you are older, all your faculties will be impacted. There would be some responsibilities such as grooming, washing, bathing and eating that the person would be able to manage but other tasks such as using phones, shopping, travelling, cooking and managing money could become an issue. Assessment of these aspects acts as a reference point for further evaluation and can tell a lot about the physical and mental ability of the individual.

Mood Memory Mobility

• Mood—The older population often experience a low or depressed mood due to loneliness, feelings of worthlessness, troubled relationships at home or some chronic medical condition and pain. Often these aspects are overlooked by the person and the family as well. A careful observation during a consultation can provide invaluable insights with regard to the person’s mood. A well accepted tool called the Geriatric Depression Scale [a questionnaire] helps the clinician to make a decision to offer treatment for depression.
• Memory loss—Dementia is one of the most common and challenging problems of the geriatric population the world over. It is a condition with impairment in cognitive function [memory, reasoning abilities, language skills, forgetting learnt skills like how to eat, dress etc]. This may be accompanied by behavioural changes, personality changes, hallucinations and delusions. The symptoms can be very subtle initially and so they are easily missed. During a visit to a geriatric clinic, clinicians often use a MMSE scale—a 30-point questionnaire which helps a clinician to objectively diagnose and assess the level of dementia.
• Mobility—One of the biggest challenges in the elderly is to prevent a fall. Like children, the elderly population is very prone to falls and since they are more likely to have weak bones, they are at a higher risk of fractures as well as head injuries due to smaller brain mass. Mobility is tested with simple bedside tests like the “Get up and go test”. If an individual suffers from problems related to balance, physiotherapy exercises may be recommended to resolve the problem. The home environment plays an important role in fall prevention. Employ simple measures such as the use of anti-slip flooring in bathrooms and toilets, provide support handles in areas that have steps or a slope, avoid the use of carpets and bathtubs and leave a night light on to minimise the risk of a fall.

Prevention

When you are over the age of 60, prevention is a much better bet. There are two aspects to prevention:

• Annual health check ups which are specific to old age such as blood tests thyroid, sugar, lipid, scan to know the bone strength, mammography and stool tests. These tests are more or less standardised the world over and are based on common geriatric health problems.
• Vaccinations for flu must be taken annually and for pneumonia every five years apart from other vaccinations.

Appetite

With age, appetite may decline but a very rapid weight loss of 5 per cent in 6 months or 10 per cent in 12 months should always be investigated for the presence of an illness.

Control over urine

Often, the control over urine is a common problem with the elderly. In men, this can be due to prostate problems; in women it is due to stress incontinence. It can also occur as a symptom of an illness like pneumonia. A quick discussion during the doctor’s visit regarding this is very important to prevent medical emergencies such as the acute retention of urine.

Treatment

All the drugs that the individual is taking for various illnesses should be reviewed periodically for any possible side effects and  drug-to-drug interaction. Chances of drug side effects are higher at this age even with a normal or low dose, so a careful drug review is of the utmost importance.

To really have a positive IMPACT on the health of the Geriatric population, the most important tool required is time. Sometimes more than one visit to the doctor becomes necessary to address all issues at least in the initial stages. A clinic specially dedicated for the care of the elderly is doubtless as important as any other speciality.

Sir Richard Steele, the great writer, says, “There are so few who can grow old with a good grace”. I strongly feel that modern medicine should help every person to grow old and live with a good grace—that is the challenge awaiting the doctors in India today.

This was first published in the March 2015 issue of Complete Wellbeing.

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My mother is angry about her diagnosis. More than anything it’s that she’s caught something my father has not. “Don’t come into my MRI appointment with me,” she sneers in my dad’s direction. “They may figure out that you have it too.”

My father has never been a patient man. He ignores her and heads towards the garage.

“I may outlive all of you,” she says as he closes the back door. She flips through a pamphlet on dementia from her doctor. She says to me, “Sometimes it’s better for old people not to know all this stuff.” She recently turned 73. After a year of mom’s absent mindedness, my dad made an appointment for her with their family doctor.

Now I look over her shoulder at the description of ’cognitive decline’. She pronounces the words slowly: cog-NITE-ive. I read moderate dementia, a label I suspect may anger her the most. Like saying ‘half pregnant’—you know what’s coming.

After a week on Alzheimer’s medication, her disposition seems to improve. “Dad even cuddled me,” she tells me one day. “And I get two kisses: morning and night.”

One day I show up at my parents’ house when they’re in the middle of an argument. I take a spot at the dining room table. Lately my mom is angry at my dad much of the time. “You shut up,” she yells at him. “You don’t know.”

When we were kids none of us was allowed to say “shut up.” I’m still shocked every time I hear it come out of my mother’s mouth. Until recently, I’d never heard her yell.

My dad clears his throat the way he does before he cries.

She says to me, “People keep saying I have something, but I don’t. What is it called again?” Part of me wants to burst out laughing: the Alzheimer’s patient can’t remember the name of her disease. “Mom,” I say gently. “You have Alzheimer’s.” It’s the first time I’ve used that word with her.

“No, I don’t,” she says. “My doctor said I have memory loss. Not Alzheimer’s. Dad forgets things too, you know.” How happy she’d be if he was also afflicted, and she wasn’t alone.

“He does forget some things, but you’re the one on Alzheimer’s medication.” I’m not sure where this is going. My mother has never been reasonable.

“For memory loss,” she says. “And I’m going to start to take more pills.”

“And why do you want to take more?” “To stop the memory loss.”

“Because it’s getting worse?” I ask. I want her to admit what she’s said to my sisters and forgotten: that she thinks she can actually feel the blood vessels in her head bursting and she can’t remember anything anymore.

I know she uses 20 dollar bills for book marks and that my dad doesn’t leave her alone when they go to a grocery store or the casino. I know her arms are often covered in burns from the oven. I suspect that by tonight she’ll forget I was here today.

She says, “Because if I take one pill, then two would be much better.”

This was first published in the July 2014 issue of Complete Wellbeing.

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My father had always been 90 per cent great, but his temper was a doozy. He’d never turned it on me before, but then again I’d never gone against his wishes either. When my mother nearly died from an infection caused by his inability to continue to care for her, I flew from southern California to San Francisco to try to save her life—having no idea that in the process it would nearly cost me my own.

Playing Jekyll and Hyde

I spent three months nursing my mother back to health; while my father said he loved me one minute, he’d get furious over some trivial little thing, call me nasty names and throw me out of the house the next. I was shocked to see him get so upset, even running the washing machine could cause a tizzy, and there was no way to reason with him. It was so heart-wrenching to have my once-adoring father turn so much against me.

Choked!

I immediately took my father to his doctor and was flabbergasted that he could act so darling and sane when he needed to. I could not believe it when the doctor looked at me as if I was the crazy one. Then things got serious. My father had never laid a hand on me my whole life, but one day he nearly choked me to death for adding HBO to his television, even though he had eagerly consented to it just a few days before. Terrified, I called the police and asked them to take my father to the hospital for evaluation. I was so stunned when they released him right away, saying they couldn’t find anything wrong with him.

A year-long ordeal

I was trapped. I couldn’t fly home and leave my mother alone with my father—she’d surely die from his inability to care for her. I couldn’t get healthcare professionals to believe me—my father was always so normal in front of them. I couldn’t get medication to calm him; he refused to take it or flushed it down the toilet. I couldn’t get my father to accept a caregiver. I couldn’t place my mother in a nursing home; he’d just take her out. They both refused Assisted Living and legally I couldn’t force them. I became a prisoner in my parents’ home for nearly a year trying to solve crisis after crisis, crying rivers daily, and infuriated with an unsympathetic medical system that wasn’t helping me appropriately.

What the heck!

You don’t need a doctorate degree to know something is wrong, but you do need the right doctor who can diagnose and treat dementia properly. Finally, I stumbled upon a neurologist who specialised in dementia and performed a battery of blood, neurological, memory tests and scans on my parents. He also reviewed my parents’ medications and ruled out reversible dementias such as a B12 and thyroid deficiency. And then, you should have seen my face drop when he diagnosed Stage One Alzheimer’s in both of my parents—something all other doctors had missed entirely.

Polar opposites

So, what I’d been coping with all these days was the beginning of Alzheimer’s, which begins intermittently and appears to come and go. I didn’t understand that my father was addicted and trapped in his own bad behaviour of a lifetime and his habit of yelling to get his way was coming out over things that were illogical… at times. I also didn’t understand that demented does not mean dumb and that he was still socially adjusted never to show his ‘Hyde’ side to anyone outside the family. Even with the onset of dementia, it was just amazing how he could still be so manipulative and crafty. On the other hand, my mother was as sweet and lovely as she’d always been.

Balancing brain chemistry

I learned that Alzheimer’s makes up 65 per cent of all dementias and there’s no stopping the progression nor is there a cure. However, if identified early there are four FDA approved medications that in most people can slow the symptoms of the disease, keeping a person in the early independent stage longer, delaying full-time supervision and care. More medications are still in clinical trials.

After the neurologist treated the dementia and the depression [often present with dementia] in both parents, he prescribed a small dose of anti-aggression medication for my father, which helped smooth his temper without making him sleep all day. It wasn’t easy to get the dosages right, but at least we didn’t need police intervention any longer. Once my parents’ brain chemistries were better balanced, I was able to optimise nutrition, fluid intake and their medicines with much less resistance.

Finding creative solutions

Finally, I was also able to implement techniques to cope with my parents’ bizarre behaviours. Instead of logic and reason, I used distraction, redirection and reminiscence. Instead of arguing, I agreed, validated frustrated feelings and lived in their realities of the moment. I learned to go with the flow and let the nasty comments roll off. If nothing else, the bribe of ice-cream worked the best to get my father in the shower, even as he swore at me that he’d taken one yesterday.

Then finally, I was able to get my father to accept a caregiver. And with the tremendous benefit of Adult Day Care five days a week for them and a support group for me, everything started to fall into place. It was so wonderful to hear my father say once again, “We love you so much, sweetheart.”

Infuriation to passion

No one discussed with me the possibility of the beginning of dementia in my parents that first year. One out of eight elderly people by the age of 65, and nearly half by the age of 85 get Alzheimer’s. Healthcare professionals need to know the warning signs of Alzheimer’s [see box] and share them with patients to save everyone so much time, money and heartache.

What I had endured, compelled me to give up my career as a television executive to become an advocate for eldercare awareness and reform. Passion to save others from a similar experience [or from getting so frustrated that they commit elder abuse] somehow resulted in my first book, Elder Rage, or Take My Father. Please: How to Survive Caring for Aging Parents. I also launched the ‘Coping with Caregiving’ radio programme to help caregivers.

Now I am grateful for the experience that took me to my knees and nearly destroyed me, as it was also the catalyst that compelled me to a higher purpose, passion and reward than I could have ever imagined.

This was first published in the February 2010 issue of Complete Wellbeing.

Reprinted with permission of the Alzheimer’s Association

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