This is a place you did not want to go… You don’t want to accept that this is happening to somebody that you love… but it is.
It starts early morning, and you hear the faintest sounds of the bed next to your bedroom creak. She is awake.
You are still partially in sleep mode, because it’s 2:40 am, but your instincts are on alert, because you wonder if she is getting up now? Will she be attempting to find the bathroom, or is she thinking it’s time to start the day, and as you sense her feet hitting the foot in the next room, you are ready to give instructions.
This present role that you find yourself in is a paradox. You are the child/girl/woman, and this is your Mother. This person once cared for you, but at present you are caring for her…
The quiet shuffle of sock clad feet as they slide from my door, and into the kitchen close by, lead me to know that she is lost.. she can not locate the bathroom.
I lay in my bed motionless, breath held, as I anticipate when I should go and help guide her into the bathroom.
The wood floor creaks, and I can’t stand it any longer, the need to have her successfully find her destination is greater, then her annoyance at me for being told where to go to get there gets put on the back burner.
There is a shift in me, as I realize that there is no turning away from this. It is a necessity. She needs to find the toilet, and I’m the one with her to see that she gets to where she needs to is of paramount concern.
She is task oriented. She does not like to be embarrassed. She likes to fix things, and to be useful.. to be of help. She seeks purpose.
She knows what is happening to her. She is a nurse, she is aware. This is terrible, this awakening of awareness. It plagues her soul…. I see it.. I see her.. There is a vortex of the unknown, that crowds out rational thought.
To be lost, to not know your way is a terrifying thing. I hate being lost, more than anything, if I’m on a road, and I can’t get my bearings, and feel as if I’m spinning in circles, I lose my temper pretty rapidly. I begin to sweat, feel faint, and the feelings of instant anxiety are intoxicating. I become irrational… I need to know…I need to get found.
In these situations, I should pull over, and breathe, but generally I do not. I know the right and organized thing to do, but I will not do it.
Instead I continue on, wasting gas, and brain cells, trying to conjure up which way is north, and so forth.
Im trying to understand how terrifying, and bewildering it must be to be lost in your own house,or in your daughter’s house, where you have stayed for two weeks.
I call out to her, “ Mum, are you ok?”
Faintly, I hear back, “ I’m just here.”
This about sums it up.. she speaks the truth, so that it’s easy for me to reach out.
I slide open my door, and my snoring beagle is now at full alert, and shakes her head, making her collar jingle, as her identification tags clank together. So much for the covert approach. She yawns noisily, and this makes me grin, she will not let me leave this bedroom without her.
I find Mum in the front hall, and her hair is disheveled. Her eyes are wide and searching. I walk up to her, and gently open the bathroom door with the homemade sign that says “ Washroom” taped to it, and becken her forward.
She shakes her head from side to side, and says, “ thank you,” but I know she is frustrated at her situation.
I decide to climb back into my bed, and wait and see how she does when she emerges.
The other day she explained it to me like this.” It takes so much energy to do the things that used to be so straight forward, and required no thought. I now have to think through each thing, and make the effort to do them.”
No wonder she gets more tired now, and walks with a slower pace. Things are quieting down, and her thought processes, once so alert, and keen, are now in a “ neutral” mode… and maybe it’s even like trying to drive with the emergency brake on?
There is frustration, and anxiety, and a great sadness.
Emotions are ever at the surface, and there is angst in me, because I’m never sure how she will respond when I offer her instruction. There could be tears, or anger, or anything that is in between.
She is coming down the hall again, so I meet her half way, and ask if she is ready to go back to bed? She says ok. I tell her we can make coffee soon.. and by that I’m meaning, in about 4 hours.
The other night, I found her out upon my couch sleeping. I think she made her way to the bathroom, but could not make her way back to her room, and so she found a spot to crash on, to lay her head.
Her trusty Westie, Brody is so attentive to her. He is loyal, and faithful, and he loves her, and brings her comfort . It is hard for her to care for his needs now. She keeps saying he is getting fat.
I can’t get back to sleep. This is rather frustrating, because the thoughts of what comes next ravage my unquieted mind.
This time, 3 am, is not generally the time to do research on the internet, come to find out. Things seem far more dark and dismal in these early morning hours.
I know from what I’ve learned, and from what I am bearing witness to, that Mum is transitioning.. in many ways.
She is vulnerable, and she needs a lot of care and guidance. She enjoys the companionship, but she despises feeling needy, and not unlike a lot of aging parents, she states that she does not want to be a burden.
I find this fascinating when people say this. When did loving and caring for your loved one make them think they are a burden?.. Has society taught us this, or do we think we are only truly lovable when we have all of our faculties, and wits about us?
Must we present ourselves in our best forms, and only then are we lived unconditionally? Just by asking this question then, are we not saying that our love has conditions?
Maybe, in a few more hours , with hot coffee warming my insides, the way become more clear?
She is up…..again….. and it’s now 5 am, and even though she doesn’t say it, I know she wants to start the day, so I ask, “ do you want your coffee now?”
I know the answer, but I know she needs to choose it. We like choices, they make us feel free, like we still belong to ourselves, and our minds can reason.
She has been reading more. She is finding comfort in little books of faith that I’ve set in her bedside table. When she is agitated, I play hymns for her.. she begins singing, and this is quite wonderful.
She asks if she can have more family pictures to put up. She wants one of her Dad. She cries when she is folding up my apron collection, because some of them she remembers adorning her Mother, as she baked in her kitchen out on the farm.
Our memories are so precious to us. The people we have loved, and who have now passed away, we long for. We miss them like an open wound that will not heal.
I see this in her now. She longs for heaven.. to be reunited, to be whole.
Illness takes away so much that is dear to us. The ability to chart our own course , set our sails towards the wind, and live life on our terms is of vital importance… but then.. we become dependent, and this tries to take our dignity.. we fight back, but end our fighting with ourselves, and those who really care for us.
It is a slow moving train at first… just the little things, the memory lapses, the repetitiveness, but then it gathers speed, and it seems as if you see changes in this person’s demeanor on a daily basis.
They become irritable suddenly, and defensive, and you tread lightly, because their words sting. You get hurt, because this person is your Mother, and she is not supposed to hurt you. It is hard to separate truth from disease.. this sickness of the mind, this change in the brain.
You try to distance yourself from who this person is becoming, because this is self preservation, and it’s necessary.
You don’t want them to feel worse, but you admit, it really does take a village in this stage to come together and care for your Mother.
I was so fortunate and blessed to find some caregivers recommended by my friend Joyce. Amy has worked with her at my house for the last two weeks, and Melanie too. They have been terrific.
They have built a gingerbread house, glued a broken lamp, mended a bracelet that needed repair, swept and vacuumed the floor, and folded laundry.
My Mum gave instructions one evening about building a fire in my wood stove. She explained to Amy that the fire wasn’t getting enough draft, and assisted in setting the flames ablaze. She was proud of this, this is accomplishment.
Amy really enjoys Mum’s company, and they bundle up in coats, hats, and mittens, and take the two dogs for a cold winter stroll, at least 3 outings during the day.
I find that Mum is able to open up with her caregivers far more than she can to me. She tells of her anger, and frustration of not being able to do what she once did.
It is a time of acceptance… of just being, and realizing that what you get is what you have right now. There is no guarantee, or right to be given.
It is the gift of now, of just this second, this brief space in time, where we exist… it is fleeting.. it is precious.. it is what we have.. and I am grateful.
5 thoughts on “Wandering into the next phase….”
Jill, you are on the front line for your Mum with love, compassion, wisdom and grace – gifts from God to carry on through to her flight home to heaven – greeted by loved ones John, Nan, Pappa, Bianca and many others….
There is a book I think you would find helpful: New Every Day – Navigating Alzheimer’s by Dave Meurer – a Christian author written with love and humour. Amazon can quickly send the book
Thanx Auntie… for your gift of love and grace.. I will for sure seek out this book that you recommended. I really love this visual that you mentioned.. “ her flight home to Heaven.”.. beautifully and hopefully put.. sending lots of love your way, andvoraying for a wonderful Christmas out in Calgary with all of your loved ones.❤️🤶🎅
Oh wow Faye.. I did not know that.. I do know that Tom McCullough has had this similar journey too.. I believe in that too.. “ no regrets..” living life fully, and loving those that can hurt us is challenging.. trying to separate disease from fact… living without conditions, and letting each day unfold.. “ as our days, so shall our strength be.”… I lose my patience for sure… apparently the “ long suffering(patience,) is a constant work in practice… by God’s grace is the only way 🌼
This really brought back memories of my mom and her dementia.
For us mom more withdrew and didn’t say much , she still knew her way around the house it was more she couldn’t take care of herself get dressed go to the bathroom…
Even though your mom gets upset and you feel it is directed at you it isn’t and she might not say it but from my experience they do appreciate everything that we there children do for them.
You are a very special daughter to look after your mom and no matter what she says or does she loves you for what you are doing.
The one thing I say to you is this is draining so make sure you take time for you and for me after losing mom in August I have just started gentle yoga and it is making me whole again.
Thank you so much for your words Phoebe. I find such encouragement when you share your life experiences with your Mother. Even though no two journeys down this road are alike, there is such comfort in knowing others have walked this crooked path.
I really agree with you about how It affects us when we caregive. It is a consuming thing, and extremely tiring, and draining. I know it takes its toll on our health too.. It seems that finding a healthy balance is ever evolving..
Knowing that you are supported, is hugely helpful.😋