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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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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