A Caregiver’s Cry for Help

For almost 10 years now, my father has been living with a mixed dementia that is similar to Alzheimer’s. Recently, following a nine-week hospitalization, my father finally returned home. However, ever since his return, I have become irritable and I often lose my patience.

I became my father’s caregiver 5 years ago. We could even say 9 years now if we count the years when he was still autonomous and I would take him to his medical appointments. Obviously, I stay by his side because I love him and because for me, it just goes without saying. It’s not like I made a thought-out decision. It just came naturally. Often, people tell me, “You really do so much! You should think of yourself. You are carrying such a heavy responsibility!” But honestly, up until recently, I didn’t see this responsibility as a burden or like something that was imposed on me. I am merely my father’s caregiver because I love him.

Losing It!

For some time now, I’ve been starting to find it rough. Last week, when it was time to go to the day centre that he attends twice a week, he did not want to exit the door. We really needed to get going since we were tight on time, and I needed to get to work right after. But he just stood there, frozen in front of the doorway. He did not want to take a step forward. He stiffened his body and refused to move. I insisted that he move forward by speaking to him, by holding him by the hand, by begging God to give him a push on the back. There was nothing to be done; he would not budge. I then lost my patience. I slammed the front door and tried to pull him towards the living room armchair for him to sit down while I called my brother to come to the rescue. Alas, in my agitation, we both fell backwards on the floor of the living room. He had fallen on his back, and I had collapsed onto his stomach. Fortunately, he did not injure himself and neither did I. But my mind started imagining a more disastrous outcome. I realized that it would not have taken much for my father to knock his head on the coffee table for the fall to be fatal. Just like in the movies, I imagined a scene where a heated argument gets out of hand and one of the characters loses balance and smacks their head on the ground or on a blunt object, falling to their death. We would then see a pool of blood spreading on the ground as if to attest to the actual death of the character. I was f-r-e-a-k-i-n-g out! After calming down a little, I called my brother who quickly arrived and convinced our father to get into the car. When I thought that it couldn’t get any worse, I found out that the back of my skirt had ripped during the fall, revealing my underwear*! It was actually my brother who pointed it out to me when we were all outside! Yes, yes, you read right. I had made a fool of myself, exposing my behind right outside on the street in front of my home… How embarrassing!

*Note to self : Thankful for my parents who taught us to always wear nice and clean undergarments at all times!

Questioning Myself

On our way to the day centre, I reflected on my behaviour and on the recent turn of events. I started talking to God:

“What is happening to me, Lord? Why have I become so impatient? Why do I have so much anger in me at this moment? Why did I lose my temper? What will become of me?”

I quickly realized that other factors unrelated to my father’s illness had aggravated my emotions: the fatigue, the stress, the change in pace, the instability of the CLSC home-care services. In short, I took it out on my poor dad. So I asked God for forgiveness…

Asking for Forgiveness

I knew that I also needed to ask my father for forgiveness for the way that I had treated him unfairly… But I told myself:

“Yes, but… he’s already forgotten about the incident… And anyway, he won’t even understand what I am talking about.”

Any excuse that would have invalidated the need apologize to my father sounded good to me, but in truth, it was my pride that was getting in the way.

Ever since the beginning of my father’s illness, I had always made it a point to continue seeing my father as my paternal figure. Whether in sickness or in health, I was still his daughter, and he was still an adult even though he often acted like a child of two years. Nevertheless, I chose to address him like an adult whenever possible, and I would do my best not to infantilize him. For it is written:

 Honour your father and mother. This is the first commandment with a promise:  If you honour your father and mother, things will go well for you, and you will have a long life on the earth.

Eph 6:2-3 NLT

It is with this realization that I applied this principle towards my father even though his cognitive abilities were diminished. Therefore, I swallowed my pride and opened my mouth to say:

“Papy, please forgive me for losing my patience with you earlier today. I should not have acted out in that way.”

He replied:

“Yes, that’s quite true, isn’t it, Thalie? You just lost your temper!”

This comment was followed by confused gibberish. After that, I clenched my teeth and told myself that he had pushed me over my limit and that it was normal for me to have lost my temper. In any case, I had already apologized, and he seemed to have appreciated the gesture.

The Pressure That Weighs Down on Caregivers

Even today, on this very morning, he did not want to go to the day centre. This time, I left the house. On my way to work, I called my mother and my sister to inform them that he was home alone and that he did not want to go. I told them that I was at my wits’ end and that I did not want to fight with him. So they took the lead.

All this to say that being the caregiver of someone we love is not easy whatsoever. Apparently, 67 % of caregivers suffer from depression symptoms (I was unfortunately a part of these statistics). Taking care of a sick person requires a lot of love, a lot of patience, a lot of composure and organization. In a society where seniors are devalued and where marginalized people are often pushed aside or forgotten, it takes a lot of courage to swim against the current and to take care of aging parents or children with severe disabilities. There are caregivers for whom this represents a real sacrifice. Others do it with constant hostility or violence towards the patient. Seen from the outside, it may be easy to judge them, but in reality, it takes great self-control to be able to keep calm when difficult situations arise, such as when a disabled person refuses to cooperate.

When it does not come from the sick person, it is the system that adds stress to the caregiver’s duties: the creditors’ relentless harassment, the auxiliaries who do not cooperate, the health system that does not provide enough services. In short, there is pressure that comes from everywhere.

God: My Refuge, My Strength, My Anchor

But God is our refuge and gives us rest:

Come to me, all you who are weary and burdened, and I will give you rest.

Matt 11:28 NIV

And He gives us His strength:

The Lord is my strength and my shield; my heart trusts in him, and he helps me.

Ps 28:7a NIV

Also, God promises us that if we walk by the Spirit, He will sow in us love, patience, goodness and self-control that will help us face our trials:

So I say, walk by the Spirit, and you will not gratify the desires of the flesh.

But the fruit of the Spirit is love, joy, peace, forbearance, kindness, goodness, faithfulness, gentleness and self-control. Against such things there is no law.

Gal 5:16, 22-23 NIV

“Papa, I now pray for the person reading this text that is looking after a sick person. I pray that by your Holy Spirit you would sow in them love, patience, goodness, self-control and all the other strengths that would make them a caregiver that can deal with whatever they are faced with. I pray for you to forgive them for all of the times when they were irritated and lost patience with the person they are in charge of. Papa, strengthen them, comfort them, and stay by their side every single day. I also pray for the person that they are taking care of: heal them according to Your Will and relieve them from all pain. In Jesus’ name I pray. Amen!”