My grandmother is 94 years old and still the most elegant woman I know. In the 45 years we have known each other, we have had innumerable, memorable conversations, some of which I have documented and hope to share with my own grandchildren someday.
A few years ago, I entered her room as I would daily and sat on her bed next to her feet. She didn’t give me her usual greeting, so I stayed quiet, and we both just looked at each other and took in each other’s faces and moods.
A question came to mind, so I asked her, “Vovo, who do I look like?”
Without skipping a beat, she said: “Mother Mary.”
I laughed out loud and clarified,” I look like Mother Mary??!!”
“Yes”, she answered.
“Ok….how do you know what Mother Mary looks like?”
Again, without skipping a beat, “Oh, I’ve been to her house!”
Me: (laughing again and loving this crazy conversation)
“So, what did she serve you when you went to her house: cold drink, tea, or water?”
Vovo: (with a big smile on her face) CHOCOLATE!!!
And then all three of us (Vovo, her caregiver, who doesn’t understand much English, and me) burst out laughing.
Seven years ago, having a conversation like this with my Vovo would have filled me with anxiety about what was going on in her head. But after 7+ years of living with and loving each other through our many adventures in dementia land, I have learned to connect with her and enjoy her presence, irrespective of how many words she can actually speak and whether they make any sense or not.
If you haven’t been to dementia land yet, be warned- it is a wild, lawless place- one where you can lose your sanity, your health, your money, your relationships, and maybe, your very soul too. Yet, as it has been for my husband and me, each stint in dementia land (this is our third one) can also teach us new lessons in humility and complete dependence on God.
You really do not know how much you need God until God is all you can count on.
None of our loved ones could understand what was happening to them once the dementia began. To understand what’s wrong with your knee, you need your brain. And to understand what’s wrong with your brain, you also need your brain; only if your brain isn’t working well, there’s no way to understand it. Having cared for 6 of our elders in all, 3 of whom have had dementia- I know that for our elders themselves, it was more painful to have a functioning mind that understands that their body is giving up than having dementia and having no clue what’s happening. But for us, watching our loved ones unravel with dementia has been absolutely gutting.
And since my elders who have had dementia cannot advocate for themselves, it is my desire to advocate for them – to speak up for those who cannot speak for themselves (Proverbs 31:8) and to draw others closer to understand what’s happening to those who have dementia.
Dementia is the 7th leading cause of death worldwide, with a new case being detected every 3-4 seconds. The U.S.A alone has close to 5 million people living with dementia. Even if it hasn’t reached your family yet, it has surely reached your church, and you have an important role to play in it.
Very broadly, you can understand your role in helping a loved one with dementia in 3 ways: as an ally, an advocate, and an aide.
In the beginning, all that our LOWDs (loved ones with dementia) would need is an ALLY. The beginning of dementia does feel like the beginning of a war: tensions run high as inexplicable behavior becomes more and more disruptive, and relationships are fraught with misunderstandings. While everyone may seem to be the enemy because they are telling your LOWD that something is wrong with them, they really need their allies to step forward- the ones who are willing to stand shoulder to shoulder and face this war with dementia, staying true to them no matter what the cost.
In Isaiah 49:15, God promises us that even if a mother were to forget the child she is nursing or the baby within her womb, He would never forget us. When a person who has been fully functional all their lives begins to lose their abilities to think, reason, plan, organize, care for themselves, and remember what they were doing a few minutes ago, due to dementia, they lose the very essence of who they are. After watching 3 of my beloved elders experience this, I would say losing oneself to dementia is far worse than being forgotten by your mother- and yet God’s promise holds true- He does not forget them.
As their ALLY in this stage, you can stand by them as God stands by them, staying unwavering in the face of confusion, resistance to the diagnosis, and inability to cooperate with medical advice or legal requirements. For me, it was a minute-by-minute reliance on what the Holy Spirit was saying to do that got my grandmother safely out of the very dangerous situation she was in – living alone and unable to care for herself- into my home where my experienced husband and myself could gather a team of caregivers to care for her as we raised our own children to be her allies too.
It was a lifetime of building a relationship based on trust (not on legal or monetary obligations) that helped us care for our elders, because even the dementia could not steal the trust they had in us, which helped them depend on us in the midst of the terrifying process of losing themselves. A lawyer clarified for me that even the most foolproof legal safeguards require a trusted person to execute them. Can those in your life who may get dementia trust you enough to put their lives into your hands?
After it is obvious to all who matter that the medical diagnosis is dementia and the prognosis is bleak, what your LOWD will need is for you to be their ADVOCATE. Labels stick hard when they are negative ones, and when everyone finds out that there is no cure for dementia, and this progressive neurodegenerative condition will progress more slowly in older people, unfortunately, this can bring out the worst in people. Irrespective of which country or faith background people come from, it is an all too familiar story to see a person with dementia being robbed of their dignity, their basic rights and their property simply because they are unable to advocate for themselves. There may be provisions in the law to protect against such abuse, but there are ways to get around them, too.
God Himself is the defender of widows (Psalm 68:5) and will condemn those who devour widows’ houses (Luke 20:47), so as His people, we are called to ADVOCATE for the inherent dignity and worth of each individual from the beginning to the natural end of their lives. Such advocacy requires not just a trusting relationship between the LOWD and the advocate, but also a legal provision that this person be the official advocate, over other possible contenders. One might think that this legal provision makes one’s role as an advocate easier, but it actually increases one’s emotional, moral, and legal responsibility to learn everything one can about dementia in order to adequately represent one’s unique LOWD’s best interests. Additionally, it may earn you the role of the most mistrusted person in your family- obliged to answer everyone but be helped by no one.
As my grandmother’s advocate, I have wrestled with God for years about her inability to work out her own salvation anymore or even to be conscious of receiving Him in the sacraments. God, in turn, has challenged me to act on the Church’s teaching that every human being, created in His image and likeness, has an inherent dignity that cannot be tarnished by the fading of their abilities or productivity. I advocate with God for her best interests – to live free of dementia, with Him in heaven- and He advocates for her with me- to bring His kingdom rule and reign into her bedroom for as long as He wills she is to live on earth.
As dementia progresses, and your LOWD, you and your family ecosystem are deep in the jungle of dementia land, you may find increasingly that your role changes to just being an AIDE. While the roles of being an ally and an advocate do not cease, what they need most at this stage is an aide.
There is very little that my grandmother can do for herself- she cannot even stop her own hand from flapping uncontrollably against her own face. It is virtually impossible for any one person to be the full-time aide of a LOWD- because even the last stage of dementia could take years to unfold- it requires a trained and supervised team of caregivers who will perform different roles.
It has been 7+ years since my brain has been doing all the thinking for my grandmother- from searching every morning for the new, secret location of her hidden toothbrush when she was mobile to thinking now about what could be the source of the pain that is so evident on her face but she cannot point to with her fingers nor describe with her words. An infant can provide you with continuous feedback on their needs and your effectiveness in meeting them. But a person in the last stages of dementia cannot even be aware of what their needs are, much less communicate them. What they need is an aide who will do everything for them as well as they would have done it for themselves.
Is there anyone who can be a better ally, advocate and aide than our Lord Himself? While our caregiving team is human, complex and fragile- it is completely dependent on God – for every next curve in this long winding road through the wilderness of dementia.
While this road is narrow, thank God, it does have other travelers- those who have gone before us, those traveling with us, and those following far behind in the very beginning of their journey.
St. Louis Martin, the father of St. Thérèse of Lisieux, is the most prominent saint known to have suffered from dementia and paranoia in his later life, requiring confinement in an asylum.
St. Dymphna is the patron saint of dementia, although she never had dementia herself. The place where young St. Dymphna began her ministry – a hospice for the poor and sick- became, after her martyrdom, a town that took into their homes and cared for multitudes of psychiatric patients who came there for treatment. St. Dymphna became the catalyst for the town of Geel in Belgium to become the model of de-institutionalised care for psychiatric patients. This practice began in the 7th century in Geel, but it took the world another 1300 years, i.e., the early 20th century, to consider adopting de-institutionalisation more widely.
Today, Geel still has a modern psychiatric centre in place of the old infirmary, and close to 500 patients are still placed with inhabitants, even though the population of Geel is only around 40,000. The fact that psychiatric patients are living with former strangers and not their own kin is one of the factors cited as a possible explanation for the success of this model, because it gives the ‘patients’ a family to care for them, without having the strain fall on their actual family members for whom it would be immeasurably harder because of their life long familiarity with each other.
Since my city has terrible options for institutional care and no options for de-institutionalised care other than family care, I make this exhausting journey with an online community of caregivers who live out the fellowship of carrying each other’s burdens, celebrating each other’s wins and mourning each other’s losses without ever needing to remember each other’s surnames.
Inspired by the de-institutionalised model of Geel and having experienced the lived benefit of the secular, online fellowship of my fellow caregivers, I dare to hope that one day the Church itself -present in villages, towns and cities across the world- will open up our hearts and homes to supporting families who care for their LOWDs.
Imagine a society where people with dementia will always be safe even if they wander out of home, because their community is always right there to look out for them. Imagine a society where no caregiver is burnt out or needs to fear dying before their LOWD because their community is willing to learn about this disease and accompany caregivers in it. Imagine a society where families with LOWD do not have to rely on bureaucracy to access and afford the best technology to care for their loved ones- trackers to find them when they have wandered, tools that assist with hygiene and nutrition, beds and alarm systems that keep them safe at night.
We, the church, are called to build that society.
“4And the king will answer them, ‘Truly I tell you, just as you did it to one of the least of these who are members of my family, you did it to me.” Matthew 25:40
As the body of Christ, we are called to love the lost and the least as He does.
Can you look at our LOWDs with Jesus’ compassionate gaze and see the person behind the disease?
Can you talk to them in a way that upholds their dignity, even if they are talking gibberish?
Can you acknowledge their presence and attend to our unique needs in social settings without gossiping or belittling us?
Can you serve them with Christ’s hands and feet by giving us caregivers a listening heart or your presence so we can get some respite?
Can you involve our LOWDs and us in ways that make it possible for our LOWDs to still connect to the community while they still have the ability to do so?
Can you accompany us along the very long journey of this very long goodbye?
Is this all too much to ask?
Or can we count on you?
