November is National Family Caregivers Month and National Alzheimer’s Disease Awareness Month. To mark these events, the Alzheimer’s Association Michigan Chapter is recognizing a few of the more than 518,000 Michigan family members and friends serving as Alzheimer’s and dementia caregivers with a Caregiver Q&A.
Was your loved one diagnosed with Alzheimer's or another form of dementia?
Caregiver name: Kanu (KC) Mehta
Loved one living with dementia: Sumitra (Sumi) Mehta
Relationship to one another: Husband and wife
In what year was she diagnosed?
Can you tell us a little bit about your journey with the disease?
In 2013, at the age of 59, my wife Sumi was diagnosed with Alzheimer’s disease.
Prior to Sumi’s diagnosis in 2013, she was exhibiting some symptoms like getting lost while driving, being forgetful, difficulties in expressing herself. But I thought these may be related to aging process or as some people have poor navigation skills. Her diagnosis was a surprise because she was diagnosed at a very young age of 59. Initially, I hoped for a misdiagnosis as a case of Mild Cognitive Impairment vs. Alzheimer’s. Over the last seven years, Sumi has migrated from being in the early stage of the Alzheimer’s disease to the late stage (in a three-stage process defined by the Alzheimer’s Association). Sumi exhibits behaviors, such as:
- Trouble controlling her bladder and bowls (incontinency).
- Needing round-the-clock assistance with daily activities.
- Lost awareness of recent experiences as well as her surroundings.
- Not able to communicate verbally her needs, discomfort and pain.
However, Sumi is physically fit without any other ailments or needing any medications. She eats well, sleeps well has regular bowl movements. In a typical 24-hour day, she is in bed (sleeping awake cycles) for 12 hours, she sits for about six hours and she is on her feet (slowly pacing in the house) for six hours, including walking on her own for an hour in our basement every day.
What are some of the biggest challenges you face as a caregiver?
Do you work outside the home? If so, where? If not, has dementia impacted your ability to do so? Up until two years after her diagnosis, Sumi was functioning well and I worked during that time until end of 2015. After 2015, I stopped working to be a full-time care partner for her.
Maintaining emotional equanimity and mindfulness under everchanging circumstances is the biggest challenge. Initially, I went through various phases of shock, anger, denial, grief, guilt, fear, etc., followed by a lot of research and reading on Alzheimer’s disease. This enabled me to enter the phases of soul-searching, self-analysis, reflection and acceptance. Acceptance brought changes in me.
The hardest part of caregiving is that it is a lonely journey in spite of getting tremendous support from family and friends. Many times, I feel I don’t have an ‘adult’ in the house to converse with. It can feel that all dreams and hopes are on pause. Sometimes, I feel as though I am on a cliff’s edge. But with steadfastness, I amaze myself that I have scaled a new height in caregiving. What I thought was a cliff is just another plateau — a new normal.
Has COVID changed things for you and your loved one? If so, how?
With Covid-19, we live in uncharted and trying times and are all hunkered down in our houses. No matter what part of the world you live in, the story of Covid-19 is same....social isolation, social distancing or societal lockdown. It occurred to me that by circumstances, Sumi and I (and millions of other persons with Alzheimer’s and their caregivers), have been practicing social isolation and to some extent social distancing on an ongoing basis. Sumi and I have for the last three years. Ours is a lonely journey, in spite of getting tremendous support from family and friends. I have limited social interaction compared to what we used to have, and Sumi is in daily contact with only three people.... me, and her two part-time caregivers. Our limited social interaction is good news with regard to the risk of getting coronavirus. However, the fickle mind conjures up various scenarios in which either Sumi, or me, or we both get this virus. In one scenario, I could get it when I go out to buy the essential food items and then pass it on to Sumi. In the other scenario, one of Sumi’s two caregivers gets it and they pass it on to Sumi and then we all get it. In any scenario, it is very likely that we all are at very high risk if any one of us gets it. Another scary part is coronavirus can be asymptomatic. While taking care of Sumi, I cannot keep a safe distance from her. When she gets agitated, I hold her one hand, put my other hand behind her neck and caress it and pull her head upward to give her a kiss on the forehead or cheeks. This calms her down. For her it is a Kiss of Love. For me it could be the Kiss of Coronavirus (from me)!
Like an Orchid
If Sumi and I are infected simultaneously, what would happen if we get quarantined separately? Would we be quarantined at home or taken to the hospital? If quarantined at home, I may not be in a position to take care of her, so who will take care of Sumi? As is the case with many persons with Alzheimer’s disease, Sumi has forgotten her learned language (English), hence she needs to be communicated in her first language, Gujarati (one of India’s languages). She gets a special diet, high in fruits and vegetables and no meat. She gets a three-berries fruit smoothie every day.
How will she get all that? We shampoo and wash her hair every day and apply hair oil and either braid her hair or do a ponytail, or a bun. She finds it very reassuring and thoroughly enjoys it. Sumi gets one-on-one, person-centered care at home. Sumi is like an orchid plant. Orchids need to be watered very carefully with one ice cube a week. The ice cube melts slowly and gives the orchid a slow drip of hydration, so that it doesn't drown in it. This finely calibrated and cultivated daily routine of Sumi’s engagement and enjoyment would be totally disrupted.
I am fortunate that I have Power of Attorney and the Guardianship for Sumi. But if we are quarantined separately, how would these legal documents be verified as Sumi cannot give consent for any medical procedure on her own?
At home we observe her every moment. We have become super detectives in deciphering her body language, her needs and her requirements before they arise. She is calm and congenial most of the time. But in the new surrounding in the hospital she may get agitated, non-cooperative and combative. In that case, would they sedate her, give her psychotic drugs? In the past, I have heard stories from other caregivers that when their loved ones with the disease were taken to the hospital for an extended period, they got totally messed up when they returned home. Some even declined faster and could not survive the trauma of such an experience. With all this weighing on my mind, I wonder if our medical system is equipped to take care of a person with Alzheimer’s like Sumi. Who would give “one ice cube” to my Sumi and not drown her in medications? Who would play the role of super detective in Sumi’s life at the hospital?
I am like a single tent pole of care for my wife along with other caregivers. It is scary to think what would happen if this pole crumbles.
What would you tell a family or future caregivers who are new to this journey? Any misconceptions you'd like to point out or advice you'd like to give?
Misconception: Person with the disease does not remember
- Have all legal and financial documents in order (Power of Attorney for Healthcare, Living Trust, Will, etc.)
- For caregivers, it is natural to go through various phases of shock, anger, denial, grief, guilt, fear and depression. Alzheimer’s Association runs support groups consisting of caregivers traveling a similar journey. Joining the support group was very valuable to me as I learned about what others are going through and also helped me process my emotions.
- Educate yourself about Alzheimer’s disease by reading many books and attending classes and seminars on caregiving to reach some level of emotional acceptance. I recognized that Sumi is not a problem to be solved but a person to be loved and cared for deeply with compassion, patience and mindfulness. As Sumi was changing, it became incumbent upon me to change my perspective as well.
- One of the common lamenting themes among many caregivers is that some of their old friends and relatives have become disengaged from their lives after the onset of Alzheimer’s disease in our loved ones. I am fortunate that many of my old friends and relatives are still involved. As I consider Sumi's caregivers, I think of mountaineers attempting to scale the summit of Mount Everest. They leave their family and friends back home. They prepare assiduously for their expedition, yet no two days are the same and surprises like wind gusts, snow storms and avalanches can crop up all within the same day. The Sherpas (local Nepalese) become the most significant people in their lives during the climb, more important than their family and friends. The Sherpas prepare the route to follow, fix ropes in place and carry the necessary climbing kit up the mountain so the mountaineers can safely follow. Sherpas normally weigh 100-140 lbs. and carry loads almost equal to their own weight. As I climb this mountain of caregiving, Sumi’s caregivers are my Sherpas! Build your own support team and reach out for help from family, friends, doctors, organizations (such as the Alzheimer’s Association, Area Agency on Aging, your local religious place and so on).
- Make time for yourself for self-care. The grim statistics from the Stanford University’s study says 40 percent of caregivers die before the person with the disease they are caring for. It is very easy to fall in a rut of caregiving. Please make a point to take care of yourself as well. As they say before a flight takes off, "in case of an emergency, first put the oxygen mask on yourself before helping others."
- One thing which has profoundly changed for me is — for a long time, I could not muster the courage to watch Sumi’s old photos. Reliving the old memories were painful and sometimes I would cry in solitude. Living in two worlds of the same person — My First Sumi (Sumi 1.0) and My Second Sumi (Sumi 2.0) — is extremely painful. The reality is that both these worlds co-exist simultaneously, like two banks of the same river. I can’t lock up the former world, the world with My First Sumi, in the deep recesses of my mind and forget about it. At the same time, I can’t ignore the current and real world with My Second Sumi. After a long struggle, I have figured out my well-being depends on alternating between these two worlds with a turbulent river when I’m not even sure I want to get to the other side to visit Sumi 1.0. But with a determined resolve, I do cross it and navigate between the two banks of the river all while maintaining my equanimity!
- Write a journal, fight stigma and raise awareness of Alzheimer’s.For over three years, I have been writing an online journal called, "My Journey with Sumi (MJWS)," on WhatsApp to channel my feelings and share with close family and friends to keep them updated by offering a glimpse into our lives. I write “in the Moment” without much dwelling on it or fine tuning. It helps me process my emotions and I find it therapeutic.
Many times, people ask me if your wife (Sumi) remembers who you are. Invariably, my pet answer is “I am not sure, (and besides), it does not matter as I know that she is my wife.” I also add examples that when Sumi is in a good mood, she differentiates in showing her affection by knowing whom to kiss where.... me on the lips, her caregiver on the cheeks and male visitors (a close friend comes to mind) on the forehead.
Recently, Sumi’s morning caregiver had stopped coming dur to Covid-19. She stopped by to say Hi after the absence of 71 days. When the caregiver came, wearing a mask, Sumi was sitting in the den chair and looked at her for few seconds to process who she was looking at. As soon as caregiver extended her hand to Sumi, she got up from the chair.
It was remarkable to see the interaction between Sumi and the caregiver. Somewhere along, caregiver’s mask came down, as they were hugging each other. There were more emotional moments, which I could not capture in my camera as I was observing them and soaking in the moment when Sumi was actually crying (sobbing) as if she had found a long-lost friend!
I have read that the part of the brain that perceives, receives and gives love does not diminish significantly by the disease. I witnessed that with emotions on full display.
Now, when asked, if Sumi remembers me, I can cite the re-bonding between Sumi and her caregiver.
When and why did you first connect with the Alzheimer's Association?
I connected with the Alzheimer’s Association in 2015 to educate myself about the disease.
How has the Alzheimer's Association helped?
Through Alzheimer’s Association, I came to know about the support groups. Part of reaching out for help is receiving and giving support. I attend support group which provides an outlet to openly share my feelings and learn from others. I share my experience with others who are beginning their journey. Fellow caregivers tell me they find comfort and inspiration from my experiences/writings.
Anything else you'd like to add?
For me, being an effective care-partner, has two aspects: creative problem solving and emotional acceptance. For the former, drawing from my career as a problem-solving engineer, I have invented, designed and rigged up solutions to aid in Sumi’s safety and well-being. The problem-solving aspect of caregiving gives me small victories. As I test my solutions, it creates a safer and more comfortable environment. Some of my solutions are:
- Installing cameras in the house to monitor Sumi’s movements.
- Installing a motion sensor alarm in the bedroom so when Sumi tries to get out of bed I am alerted or awaken to tend to her needs.
- Building a ramp from the foyer to our sunken family room to avoid the potential tripping hazard.
- Covering all the mirrors and reflective surfaces to avoid the confusion that comes when Sumi looks into them.
- Changing the bedroom carpet to hardwood floor so toilet accidents are easier to clean and lessens my anger and frustrations.
- Putting soft foam pads on any surfaces Sumi could bump into.
- Building a ramp from the garage to the house.
- Rigging up a shroud to go over the shower temperature knobs to prevent accidentally getting splashed with cold or scalding water while showering Sumi.
Changes in Sumi have precipitated changes in me and opened up new internal vistas. Sumi gives purpose, clarity and focus to my life. I strive to become a better person and husband by being more loving, caring, compassionate and patient by maintaining emotional equanimity and mindfulness. I am able to recognize the important things and let go of the trivial. I try to control the controllable and manage the uncontrollable. My anxiety, stress and the blood pressure have been reduced thereby improving my well-being. I find that I am compassionate, self-healed, little wiser and at peace with myself.
I am grateful to the Alzheimer’s Association for providing this opportunity to share my journey.
The Alzheimer's Association leads the way to end Alzheimer's and all other dementia — by accelerating global research, driving risk reduction and early detection, and maximizing quality care and support. Our vision is a world without Alzheimer's and all other dementia.™ For more information, visit www.alz.org or call the 24/7 Helpline at 800.272.3900.