Dementia, suffering and chronic health problems

My Ma (maternal) has dementia.

Every time I phone her, no matter how I try to steer the conversation differently it winds up on the same path, as always.

This time I tried, ‘How are you feeling?’

She said, ‘You know when you get this old how it is. I can’t remember how old I am now.’

93, I tell her. She is 93. I think.

Then she asks, ‘So why aren’t you coming to see me? When?…’

And my heart breaks all over again.

I try to call less frequent to guard my mental health but even then it never stops my heart from shattering into even smaller fragments.

My grandparents are my everything. For a very, very long time, they were all I lived for. Growing up with them, those years I had with them, were the only times I was remotely happy. I saw all they did for me, and I saw the purity of their hearts remain, in a cruel, cold world. Even in my chronic state of emptiness I felt their love. That was real. It is real. And I still feel it. 

She tells me I must do what is right for me. And I tell her I wish I could see her and Grampie just one more time. Just once more.

My voice cracks, and a flood of tears breaks through. She tries to be strong for me, tells me not to cry, but then breaks. She says I have no idea how she longs to see me or how much she loves me.

But I know.

There are some things even time and distance cannot change.

I wish I could say this wasn’t connected in any way to my chronic health problems. But it is. My health problems are part of my life and they intertwine with and impact everything.

Everything connects

If I was well enough I would be able to work longer hours, more competitively and I wouldn’t have to worry about the cost of legal implications for visiting the place of my birth. It is incidentally, the place where 99 percent of my traumas occurred. So the thought of returning has snowballed into a massive fear that engulfs me whenever I think of it. However strong I am, I cannot cope.

More than that, there is the fear of going to see my grandparents and becoming stuck in the place of my nightmares. I don’t expect everyone to understand, but it is so for people who live with PTSD, CPTSD  and Borderline Personality Disorder as I do. You avoid places, things and people associated with the traumas that haunt you.

I remember the traumas, but my Ma doesn’t. She has dementia, remember?

You run, and you never look back.

In theory it works. But when you leave your heart with people you love behind, it can never work.

So last Boxing Day when my Mama Claire (paternal grandma) died, I wasn’t there to see her off either, and she too frequently told me she was trying to hold on to see me.

I don’t know if I will ever recover. Honestly. When my Ma asked for Mama Claire tonight, I said ‘She’s fine.’ Because I’d rather not break her heart multiple times either. Thanks dementia. 

If only…

If I was stronger I would fight harder, work longer and push further so I could fight whatever legal battles I could to stay somewhere I feel safe, without the risk of being sent back if I returned to the place of my nightmares simply to see my grandparents one more time.

If only.

But I’m not. I struggle with getting to work every day. I struggle to keep working, as many people with fibromyalgia do. You might not be able to tell from looking at me, but invisible disabilities and all.

Since Mama Claire passed my whole body has been out of whack. In the mornings I am more delirious with pain and chronic fatigue, and I’m more frequently hit with bouts of sleep paralysis. Migraines come more often and IBS flares. My mood is low and I cannot see the point of living anymore.

I pray and I pray so hard, that God will help me to do more than just survive one day at a time. But this is all I can manage now.

What a bloody nightmare immigration is, even for those of us, and especially for those of us who have suffered and are in pain.

What a bloody pain. They might as well stick a bloody knife into my heart and stop prolonging my suffering.

Sorry this is so dark. I had to be honest and get it all down on paper.

I hope you are safe and happy despite the struggles you’re facing.

Love you all x

Photo by Alice Alinari

Slider photo by Kelly Sikkema

4 Replies to “Dementia, suffering and chronic health problems”

  1. I look up to you for your vast courage in facing the world (which is certainly not pain free). You gives me enthusiasm to know that we are not alone in our sufferings. Your blessing of a beautiful, 93 year old grandmother (mother) sounds like such an important facet in your life. Take on your day with that smile, even if not heartfelt, it can make your day just a little brighter. Thank you for your honest writings. Rhondi

  2. I hope you can find a way to see her before she passes away. I am on the other side of that equation now. My son keeps avoiding and avoiding coming to visit and my time on this earth is limited. He lives just 1 hour away. I haven’t seen him in about 2 years now, not for Christmas, nor Thanksgiving, nor his birthday, nor mine. Now I am not hearing from him either. So what happens is not only is he depriving me; but depriving himself of good happy times we could spend together. It is sad to let go of the few people in your life that do give you love and support even though there might be other people and places around you that remind you of bad things. Life is too short. In today’s society I see things headed in the direction where families scatter and never come back together. Not looking back is for bad influences in your life. It was never meant for you to leave the good people behind. I don’t think man was meant to live a solitary life and have one’s loving connections devolve into acquaintanceship. You may come away feeling better not worse for having seen your grandmother. You never know.

    1. I’m really sorry to hear about your son. I hope you find a way to see him.
      I don’t doubt that I’d be better off seeing my grandparents, no doubt, but things aren’t black and white- I have serious mental health problems and there are implications (health, immigration, financial etc) involved in me visiting that would impact my future. Either way I’d have to risk a lot by going. They’re 8 hours by flight. I hope for answers and courage for myself and for you. Best,

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