My beautiful white-haired Mother stood by her bed and froze ever so slightly. My arm was around her, gently steadying her and guiding her towards bed, so I felt her body tense against mine before I saw her stiffen – just a little – it was a subtle motion but detectable to me. Only a few seconds earlier, as I eased her weak and weary frame off the chair from the stair lift by the bedroom door, I had sensed her hesitation to pass through the doorway. My husband discreetly stood by – my rock – my hero – giving us space, but right there if needed. My Dad downstairs awaiting his turn to ascend in the stair lift. I knew what was coming next. It happened the night before, the night before that and every other night for the previous 20 days I’d cared for my Mum.  “Where have I to go Anthea?”

Mum had been eager to get to bed. She was tired, even though she had cat-napped a lot of the day. For a good half hour before bed, she had constantly whispered to me “Is it time to go to bed?” Soon Mum – soon. I had responded to her 20 times or more in 30 minutes. I didn’t mind the repetition. God provided the patience. He gave me understanding. I knew if I was 95 and confused, I’d be grateful for kindness and understanding….and patience from my loved ones.  

But now as we stand together by the bed, something is different from the other nights. The other bedtimes, we walked together toward the bed with Mum saying “where have I to go?” – “what should I be doing?” and she accepted my responses of “we’re going to get you into your nice warm bed.” She heard me this time too, but it didn’t register – she was preoccupied in her own head. Yes, I could see tonight would be different. 

As I said, my Mum froze standing beside the bed. I unfastened the soft, warm crimson dressing gown she’d received from us one Christmas, and gently slipped it off and folded it at the end of her bed. She remained frozen in place, just staring at the bed. “What’s wrong Mum?” She slowly gazed at me with those beautiful blue eyes that have shown their love for me from the day I was born. She had this look of despair and puzzlement as she touched her lips with her shaking fingers. I knew at a glance there was no need for words. I know how greatly she loves me. Those expressive eyes revealed all.

But there was more than love staring at me. It was confusion and fear. I could see it. I could feel it. I didn’t have to ask, but I sensed she wanted to express what was bothering her. I encouraged her again “What’s wrong Mum?” I put my arms around her, reassuring her. I love you Mum no matter what. I wanted her to feel my unconditional love, my acceptance and my understanding as she struggled to make sense of what she was feeling and then somehow translate it into words. I could feel her trembling and she let out a faint little “wail” followed by “Oh dear, Anthea. I want to get into bed and I don’t know how! I’m sorry!”  So there it was. She had expressed the inexpressible. 

The words reached in and grabbed my heart like a vice. Not only is she confused, but sadly she is fully aware she is confused.  She knows there’s something wrong and she doesn’t know what to do about it, what to call it, how to make it go away. And of course, deep down inside she must know, as we do, that it’s not going to go away. It must be terrifying for her at times like this. I can’t bear it! Oh God please help us all get through this.

Damn dastardly dementia! You have my beautiful mother in your grip. I hate you. It’s at times like these that I want to change places with her. Seeing a loved one suffer is brutal. And I’m sure it is this way with all families where dementia or Alzheimers has descended to invade the mind of a loved one. 

I want you to know that I struggled with this blog post. I’ve started similar ones before and never finished them. It’s not easy to express the breadth and depth of the effects of dementia and besides there are plenty of articles out there that address it, more articulately and certainly more accurately than I can. So why write another?

Because this time it is for ME – for MY family, for my mother and my father, but mostly I need to get these thoughts and emotions out of my head and onto paper.  I need to express it, define it, and declare it for what it is. I feel compelled to share my personal experience and in doing so perhaps it will not only help me but in some small way bless someone else.

Back to Mum. “I’m here Mum, just sit on the side of the bed”. I helped steady her on the bed and removed one slipper at a time.  Mum said “now what do I do?” Just lie down Mum. Put your head on the pillow. I snuggled the soft warm duvet around her – she struggled to get on her side. She lifted her head off the pillow. ”Now what have I to do Anthea? I don’t have to go anywhere tomorrow do I?” No Mum, don’t you worry about a thing, you’re not going anywhere tomorrow. “What now Anthea?” Dad’s on his way up to join you Mum. Just close your eyes. It’s time to go to sleep. Say your prayers and sweet dreams Mum. God bless you and I’ll see you in the morning. I love you Mum.

She responds to love – it’s the language she understands.  “Oh thank you”, tears of gratitude welling up, “I love you too darling!” 

We wake up in the morning feeling refreshed – Mum awakens to confusion. It seems to be the most muddled time of day…first thing in the morning.

It’s the same scene every day as I serve Mum her medication, followed by a cup of tea in bed. It’s déjà vu. What happened yesterday morning – the same routine for years – is all forgotten – non-existent for Mum.  “What have I to do? Is it time to get up? Not yet Mum, just sit up and enjoy your tea in bed. It’s a lovely hot cup of tea just the way you like it. “But what have I to do Anthea?” she insists.  

And with pleading eyes, piercing mine for reassurance, “I don’t have to go anywhere today, do I?”  No Mum, you’re staying at home, not going anywhere. I glance over at her bedside table to the handwritten words on a card that reads NOT GOING ANYWHERE.

It’s my Dad’s desperate attempt to answer Mum’s question before she asks it. After 7 years of dealing with the dementia, I can understand how he would try everything to help Mum, his soul mate of 71 years. It must be hard to answer the same question over and over. Cards like these are scattered around the house in various rooms, some drawn with Dad’s artistic flair or a humorous character smiling back. 

It’s not that any of this is new to me, it’s just that it’s gripped me this time like never before. We knew Mum was experiencing short term memory issues 7 years ago. We saw the signs in the beginning and we had it confirmed when she was 87 years old. It progressed slowly, but nevertheless has worsened despite the medication. The deterioration has escalated in the last 2 years, especially the last 6 months.

My Dad has devoted his time to care for Mum, to shop, cook, clean, help her dress and deal with personal toiletries. I am filled with admiration for my Dad’s love for Mum. His personal sacrifice, his stoic determination to do the best he can, overwhelms me with respect for his devotion to her. Then came the time when he needed outside assistance to help care for Mum. For three years the care givers have provided personal assistance, gardeners were hired and house cleaners brought in weekly. Then the necessity for a live-in care giver to care for Mum and provide Dad with a much needed break. The good news is, they still live in their own home, in familiar surroundings and they have each other. 

Dad’s hip surgery was scheduled for October 24^th and he asked me to be there to care for him and Mum during his surgery and first part of his recovery process. Thus our 3-week trip to England. I must admit at first it seemed like a daunting task for us to take on the responsibility of caring for two 90+ year old parents, both incapacitated in different ways, both on walkers, and both very dependent on us. We {my hero husband and I} went with a heart full of love to bless them at their time of need, but in actual fact, the experience blessed me beyond words.

What a privilege it was to care for them. I am so grateful for the time invested in them and the opportunity to give the gift of love. Dad came through the surgery like a champ. At 3 weeks post-surgery he’s now walking with a stick and doing fantastic. He will fully recuperate and be better for the new hip. He is truly amazing and mentally as sharp as a tack. Thank God.

Mum is not so fortunate. Dementia doesn’t heal, it doesn’t get any better and it doesn’t loosen its grip on the mind. It is a devastating disease with “torment” its middle name. It torments the victim of the disease and also the family members. It’s not just forgetting what happened a few minutes before. It’s not like forgetting where you put your keys. We could {and have} chuckled about that.  It’s more like not knowing what to do with those keys.

It’s looking at your clothes and not knowing how to dress, or feeling the urge to go to the bathroom and not knowing how to do it, or looking at your plate of food and not really knowing what to do with the utensils, how to eat food. It’s like my Mum standing by her bed and wanting to get into bed but not knowing how … because she’s forgotten how. And knowing she doesn’t know how. That’s the worst. It is heart breaking and gut wrenching.

I am so grateful that Mum recognizes me. She still calls me by name, she knows my voice and she knows who I am. Praise God for that. But even if she doesn’t know me, I KNOW HER! 

There is laughter in the dementia daze too. We knew it important to see the humor in certain things and to laugh about circumstances together. I want to share a few moments that made us laugh. As I said, Mum asked the same questions over and over “where have I to go?” ~ “are we going anywhere?” ~ “what have I to do?” ~ “please tell me if I should be doing anything”. But she also made statements over and over that describes the way she feels. Here are a few of her favorites:

“I’m a real gonna today”

One day, I asked her what it was like to be a real gonna! She thought for a moment or two and replied: “It’s really quite lovely actually. I know that you and Chuck are sitting here with me, and I see the willow tree in the front and I think Dad’s in the kitchen doing I know not what! And I don’t give a damn!!” {Not like my Mum to use that word at all!} We had a good chuckle over that one! 

Another time I asked her where the fairies were and she said “they went home to tea”. Why did they go home to tea Mum?  “They saw me coming!” she replied! As I said, I spent a lot of time in her world!

I had to run into the village to get some meat one day and so I left my Dad and Chuck with Mum. “Where are you going Anthea?” she asks. I’m going up the butcher’s – for dinner!  “He’ll make a tasty meal” says Mum!