Loving Someone Through Alzheimer's: The Grief, The Care And The Choices Nobody Prepares You For
There is a version of caregiving that sounds almost beautiful when we talk about it from a distance.
You take care of someone you love. You make sure they eat. You help them bathe. You keep them safe. You sit with them. You remind them of the things they have forgotten. You become their hands when their hands struggle and their memory when their memory fails. Love carries you through.
Except sometimes love is exhausted. Sometimes love is frustrated. Sometimes love has been awake since 2:17 in the morning because someone is trying to leave the house. Sometimes love is cleaning a bathroom floor. Sometimes love is being accused of stealing the purse you spent forty minutes helping to find yesterday. Sometimes love misses the person who is sitting three feet away. And sometimes love quietly wonders:
How long can I keep doing this?
Caring for someone with Alzheimer's can contain extraordinary tenderness. It can also involve grief, anger, guilt, exhaustion, financial strain, fear and decisions for which nobody feels prepared.
The World Health Organization recognises that dementia affects not only the person living with it but caregivers, families and society, with physical, psychological, social and economic consequences.
We need to talk about that part too.
Seeing your person living with Alzheimer's means preserving their dignity. But we cannot preserve their dignity by destroying the person caring for them.
You Can Grieve Someone Who Is Still Alive
There is a particular kind of grief that can accompany Alzheimer's.
The person you love is alive. You can touch them. Sit beside them. Make them tea. Hear their voice. And still find yourself grieving…
Maybe your mother no longer remembers the stories you used to laugh about together. Maybe your husband looks at you differently. Maybe the person you called whenever something happened is no longer able to understand what you are telling them. Maybe the relationship has slowly changed from spouse to caregiver, daughter to caregiver, son to caregiver, sibling to caregiver. There is a name for some of this: ambiguous loss, sometimes called living grief.
Alzheimer's Society describes it as the sense of loss that can occur while the person with dementia is still alive, particularly as the relationship or aspects of the person's personality change.
That grief can be confusing because there may be no single moment when something was lost. Instead, there can be hundreds of little losses.
The first time they forget something important.
The first time they cannot do something they have always done.
The first time they do not recognise someone.
The first time you realise you can no longer safely leave them alone.
Grief does not mean you have stopped loving them. It means something you loved is changing.
Some Days You Will Get Frustrated
Let's say this without pretending caregivers are saints.
You may become irritated.
You may answer sharply.
You may hear the same question for the twenty-third time and think, I cannot answer this again.
You may spend an hour trying to get someone bathed, dressed and fed only for them to insist that they have not eaten.
You may be accused of taking money you never touched.
You may cancel plans because you cannot leave them alone.
You may resent siblings who tell you what you “should” be doing from the comfort of their own homes.
And then you may feel terrible for thinking any of it.
Caregiver stress can show up as anger, irritability, anxiety, exhaustion, sleeplessness, depression, withdrawal and difficulty concentrating. Trinidad and Tobago's Dementia Awareness and Research Group identifies these among signs of caregiver burden.
Having difficult feelings does not mean you do not love the person, but those feelings can be information.
Sometimes irritation is telling you that you need rest. Sometimes resentment is telling you that the distribution of care is unfair. Sometimes anger is telling you that you have been carrying too much for too long. And sometimes “I can't do this anymore” does not mean I don't love you anymore. It means exactly what it says.
The Care Can Become Intense
Alzheimer's is progressive.
Over time, a person may need increasing help with everyday activities and personal care. Some people experience changes including agitation, anxiety, suspiciousness, sleep difficulties, hallucinations, repetitive behaviour, aggression or walking away from home and becoming lost.
There may eventually be help needed with eating, bathing, dressing, medication, toileting, incontinence, getting in and out of bed, keeping someone from falling, keeping doors secure at night, attending appointments, managing money and supervising someone who may no longer understand why they need supervision.
This is work. Physical work. Mental work. Emotional work. Often invisible work. And unlike many other forms of work, you may never truly clock out.
Sleep can become particularly difficult. A person with dementia may wake repeatedly, become disoriented at night or develop disrupted sleep patterns, which can also severely affect the person caring for them.
It is difficult to be endlessly patient when your body has not properly rested in months.
“We Take Care Of Our Own”
In Caribbean families, this sentence can carry tremendous love.
We take care of our own. We don't put Mummy away. Daddy staying home. Granny raised all of us; somebody must take care of Granny. There can be something deeply beautiful about generations caring for one another.
But there is a question we do not always ask: Who exactly is “we”?
Because sometimes “we” turns out to mean one person.
One daughter.
One wife.
One husband.
One son.
One sibling.
One relative whose job is considered more flexible.
One person who happens to live closest.
Everyone loves Mummy. But one person bathes her.
Everyone wants Daddy kept at home. But one person is getting up with him at 3 a.m.
Everyone has an opinion about what should happen. But one person has rearranged their work, finances, relationships and entire life around providing the care.
Research conducted among dementia caregivers in Trinidad has documented substantial caregiver burden, including physical, emotional and financial pressures. Local research has also found that much dementia care takes place at home through family and other informal caregivers, often with limited preparation for what the role will eventually require.
Family care should not mean one family member disappearing underneath everybody else's expectations. If we really believe “we take care of our own”, then we needs to mean more than one exhausted person.
Help Has To Be More Than “Call Me If You Need Anything”
People often mean well when they say this: “Anything you need, call me.”
The problem is that an overwhelmed caregiver now has another job:
Figuring out what they need.
Deciding who can do it.
Calling.
Explaining.
Coordinating.
Sometimes feeling as though they are begging for help.
Practical support sounds different.
“I'll stay with Dad Saturday morning. Go sleep, shop, lime, sit in the car and stare at the sea. I don't care. Those three hours are yours.”
“I'll handle the pharmacy this month.”
“I'll take Mummy to Tuesday's appointment.”
“I'll bring dinner on Thursday.”
“I'll do the laundry.”
“I can cover the night shift tonight.”
Specific help removes something from the caregiver's hands. Vague help gives them another thing to organise. And family members who cannot provide hands-on care may still be able to contribute financially, handle paperwork, organise appointments, buy supplies, prepare meals or pay for occasional professional assistance.
Caregiving does not have to look identical to be shared.
Sometimes caring for the caregiver means changing the circumstances that are exhausting them, not teaching them how to endure those circumstances better.
Sometimes Love Means Admitting Home Is No Longer Enough
This may be one of THE hardest decisions a family ever makes.
There may come a point when caring for someone safely at home becomes extraordinarily difficult.
Perhaps they are leaving the house and becoming lost.
Perhaps they need supervision throughout the night.
Perhaps they are falling.
Perhaps transferring them physically has become unsafe.
Perhaps their behaviour has become impossible for one caregiver to manage safely.
Perhaps the caregiver's own health is deteriorating.
And then somebody raises the possibility of professional residential care. Immediately, guilt can arrive.
We don't do that.
People will say we abandoned her.
Daddy would never forgive us.
After everything she did for us, how could we put her in a home?
But the question cannot simply be: Can we keep this person at home?
It also has to be: Can we provide the level of care they now need safely, consistently and humanely at home?
Those are not always the same question.
There is no universal answer. Some families can provide extensive care at home with enough support. Some cannot. Some people living with Alzheimer's strongly prefer to remain at home, while others may eventually need a level of supervision or nursing care that their family cannot realistically provide.
Choosing additional care is not automatically abandonment.
Sometimes it is recognising that love and capacity are not the same thing. You can love someone profoundly and still reach the limits of what you can safely do.
And What Did They Want?
This is where the conversations we spoke about in the first article matter. Before Alzheimer's progresses to the point where someone can no longer communicate their wishes, ask.
What do you want?
What do you not want?
What frightens you?
If home eventually becomes unsafe, what would matter to you about where you lived?
Who do you trust?
What makes you comfortable?
What parts of your daily life would you desperately want preserved?
Because when difficult decisions eventually arrive, knowing the person's wishes can help move the conversation away from: What will people think of us?
Towards: What would they want us to do?
You may still have impossible choices. But at least their voice is somewhere in the room.
Caregivers Need Care Before They Collapse
We often tell caregivers to practise self-care.
Sometimes that advice is almost insulting. A bubble bath is not going to solve the fact that someone cannot safely be left alone. A cup of tea will not create eight hours of uninterrupted sleep. Deep breathing will not make a sibling suddenly contribute. And telling someone to “make time for yourself” without helping create that time simply gives an exhausted person another thing they are apparently failing to do.
Caregiver care has to be practical.
Respite.
Shared responsibility.
Medical support.
Community services.
Financial help where possible.
Someone else taking a shift.
Someone noticing that the caregiver is no longer coping before they have to beg.
Alzheimer's Society warns that caregivers can reach crisis point before recognising how badly they themselves are struggling, with signs including hopelessness, anxiety, anger, sleep difficulties and declining wellbeing.
Asking for help should not be treated as evidence that someone cannot cope. Sometimes asking for help is exactly what makes continuing to cope possible.
You Are Still A Person Too
This matters.
You may be someone's daughter. Their husband. Their sister. Their son. Their caregiver. But you are still a person outside of what they need from you.
You are allowed to be tired.
You are allowed to miss your old relationship.
You are allowed to laugh.
You are allowed to leave the house.
You are allowed to want an afternoon that does not revolve around medication, meals, appointments or whether someone has wandered through the gate.
You are allowed to need help.
And you are allowed to admit that there are parts of caregiving you hate without believing that means you hate the person.
Two things can be true at once.
I love you.
And:
This is incredibly hard.
One of the kindest things we can do for families living with Alzheimer's is stop forcing them to choose between those truths.
Because loving someone through Alzheimer's is not measured by how completely you exhaust yourself. It is measured, in part, by how we continue finding ways to protect the dignity and wellbeing of the person living with the disease without forgetting the dignity and wellbeing of the person walking beside them.
Whisper To Your Heart
If you are caring for someone living with Alzheimer's, you do not have to pretend that every moment is precious. Some moments are precious. Some are painful. Some are exhausting. Some will make you laugh. Some may leave you crying in a room by yourself because you don't want them to see. You can grieve what has changed and still love who is here. You can need space and still be devoted. You can ask for help and still be a good caregiver. And if one day the care they need becomes more than you can safely provide, recognising that truth does not erase everything you have given. Love does not require you to disappear. — Nadia Renata | Audacious Evolution
Affirmation
I can love deeply without carrying everything alone. My needs, health and humanity matter too. Asking for help, sharing the care and acknowledging my limits do not diminish my love. — Nadia Renata | Audacious Evolution
If you’d like to sit with this a little longer, you can find more affirmations like this in my YouTube playlist; a quiet space to return to whenever you need grounding.
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