Dementia is all around us – but not something we prepare or plan for. It may begin with a crisis or more likely an insidious yet subtle descent. The little deaths as I call them – the last time someone can drive, cook a meal, go out to dinner, live on their own or even remember their loved ones.
Dementia remains taboo, as our youth centric culture fears addressing issues of aging and dying head on. I have learned so much over the past twelve years, as my parents fell into the throws of Lewy body dementia and Alzheimers.
The first thing you learn is there is no guidebook, no 24-7 help desk and that nothing about this is going to be easy and at times it will bring you to your knees. But in my case it also gave me some of the most loving and tender moments of my life.
My mother’s onset of dementia was like flipping a light switch – July 3 she was mom and by July 5 her brain had clearly undergone a trauma for which there was no turning back. My Dad who was a saint and adored my mother – soldiered on as her caregiver – as he had been before her onset of dementia. He had sailed through open heart surgery just prior – with no pain – he said – and lovingly and devotedly took on this latest phase of caregiving. But as we learned over the next several months, Lewy body dementia is a fierce demon – causing hallucinations and bouts of anger during which someone can get hurt. When I arrived a month and half later, I could not believe how my father was surviving much less still sane. We needed help and we needed it yesterday. Half crazed at this point myself, as my mother was trying to sit on me, I tore out the yellow pages for assisted living facilities went out and sat on the side of the street and started dialing, crying and praying.
The choices are always limited and generally expensive but thankfully my parents were big savers and were able to self pay, so amazingly I found a place with an opening – and at that point you don’t ask a lot of questions. Now I know what to ask and can at least offer that to others. But at the time it was a safe place with a bed and caregivers whom we assumed knew what to do.
But mom’s dementia had other ideas. We had the most beautiful evening that night, as I was able to slip her an ativan in some applesauce which brought her temporarily back to us. We had a joyful night – mom was mom – but it would be her last night ever in that house and the last time she and my father would share a bed. The first death.
The next morning mom was unresponsive and her eyes were glazed. We called 911 and she was taken most unwillingly and painfully for all of us out of the house – and where do you take an elderly woman who is acting a bit crazy, probably has a UTI and an undiagnosed case of dementia? Well in this case it was to a psych unit in a hospital – really – and it was every bit one flew over the cuckoos nest and worse. The caregivers were heroic, the administration not. I invited the CEO to come down to the basement where the psych unit was and take a tour to see if this is where he would want his mother to be – he declined my invitation.
So began the next twelve years of learning the ways of doctors without answers, medicine with no cure, electro-convulsive therapy, anti-psychosis medications, assisted living facilities, foster homes, the blessings of Ativan and Exelon, a deep love for my mother and extraordinary bond with my father and moving them from Florida to Portland, Oregon to better manage the inevitable crises to come.
The numbers are startling. According to the World Health Organization there are 47.5 million people with dementia and 7.7 million new cases diagnosed every year. The most challenging part of this disease is that you don’t just go to a doctor for treatment – which doctor do you see? A primary care physician who is not specialized in geriatrics, a geriatrician of which there are few, a geriatric psychiatrist of which there are even fewer? And while you may get medicines to slow the progression and manage the bouts of extreme behavior – you still are facing the daunting issues of finding and most of all being able to afford the care you need. Treatment means a change in the way your parent will be living not just taking a pill. It requires hours and hours and hours of work to find day to day care, deal with the costs of care, arrange care coverage if your parent is not in a care facility, navigate family dynamics of who is and who is not able to deal with this, help care for your other parent if they are still living and living with the afflicted parent. And I can assure you insurance companies at this point are not your friend.
But while I certainly don’t have all the answers there are many lessons I learned which may help others. First, sit down literally or virtually as a family if you can and discuss the situation and start to implement a plan. Talk about finances, its hard but you need to understand what is and is not possible regarding caring for your parent in the home or outside the home. Find out what if any insurance policies exist, such as long term care. Understand what funds are available for care – either from your parents or you and your siblings. Put together a list of all important documents and where they are located. If your parents don’t have an Advance Directive – get one, they are available online and sit down with your parents and fill it out and make sure everyone knows what it says, so there are never any questions about the level of care your parent does or does not want. If your loved one is able, talk to them and the other parent about what they do and do not want should they need care outside the home, become incapacitated or unable to make decisions about their care needs. Get a Health Care Directive in place so that care decisions can be made by a responsible family member if your parents are unable to talk about their care. ER visits are dangerous and can inflict horrible pain on your parent so try to avoid them at all costs.
If you think your parent is ready for care outside of the home start visiting facilities and if you like one – get on the wait list. When you check out a facility the most important questions are about the staff – how long has the administrator been there, what are the qualifications of the nurse, what is their staff turnover rate, get the names of relatives of others who live there to talk with them about their experiences and the care of their loved one. Obviously the conditions of the facility matter but it doesn’t have the be the newest to be the best. Eat a meal – food matters – A LOT when you live in a facility. Walk around and talk to the staff and see how they interact with residents. All nursing homes, assisted living facilities and foster care homes are licensed by the state and you can look online to see if there have been any complaints filed against any facility you are interested in.
Every state is also required to have an elder care ombudsman program to answer questions about facilities, locate community services to stay in the home and provide education on residents’ rights. There are also individuals and organizations who you can hire to help you find the best facility for your parent. Their fees are generally paid by the facility not you. If you are trying to keep your parent in the home as long as possible there are services such as care.com. home instead and others that help you find private care givers for the specific tasks you need help with. All of this takes time and money and you need to have a family member in charge and able and willing to coordinate. Skype and FaceTime can be a godsend to check in from afar and you can make that a condition for anyone coming in to care for your parent that you will contact them anytime to check in. Technology is providing important advances but treatment is still hi-touch rather than hi-tech.
When my mom finally passed – 8 years into her dementia – my Dad had already been diagnosed with Alzheimers and was actually living in the same assisted living facility where my mom had been before we moved her to foster care. He was even assigned to same chair as her in the dining table by chance. Luckily he knew the facility well, as he spent 6-7 hours with her everyday when she was there and he was still able to drive to see her. The twelve years of life with one or both parents with dementia or Alzheimers was undeniably painful but also beautiful.
The best night of my life was my wedding because mom and dad were both there – physically, mentally and literally. Two weeks prior to my wedding, mom wandered out of her facility and fell down a steep embankment, smashing her eye, breaking her arm and ending up in ICU. I was ready to cancel the wedding but as she often did – mom recovered quickly and courageously.
The night of our wedding Mom, whose disease made her suspicious and delusional, was not at all certain where her nurse was taking her but when she saw me getting ready for my wedding she lit up and was truly with us that night. It was a perfect night. The most beautiful, magical and memorable moment was when my frail little mom and dashing father got up to dance – to a salsa tune no less— we all were silent at first, unsure where this might go and then everyon burst into a standing ovation. Applause for love, applause for life and applause for joy even in the face of dementia.