One thing is for sure: we’re still losing the battle…but we aren’t giving up.
Hana’s Hypothalamic Obesity…
Hana hit 51.4 KG this week. So she’s gone from 21.4 KG January 2014, to 51.4 KG in just over 12months. Can you imagine what that must be doing to her body on the insides? It makes me feel sick to think about her liver, her heart and the threat of Type 2 Diabetes looming on the horizon. She had an oral glucose tolerance test a few months ago and this showed that her body churns out enormous levels of Insulin – both fasting and with glucose stimulation. What this means is that her brain is stimulating her Vagus Nerve – which connects to her Pancreas – to constantly pump insulin. This contributes to her sensation of constant hunger but high levels of insulin can also cause weight gain, brain fog and irritability…
My aim for this blog is to have fun. To recount the fun experiences of my own life and mostly that is humorous, delightful and fun, even in the face of adversity we try to laugh. It isn’t always easy. Life can also be difficult and challenging, as I am sure you will agree. So, today, I am sharing a posting by my inspirational step daughter, Naomi. Today, she and her daughter Hana, appeared on Sunrise channel 7 in Australia, talking about Hana’s medical condition, which many of you who read my blog or visit my Facebook page will be familiar with.
Hana was diagnosed with a brain tumour just over a year ago. We all hoped that the removal of the tumour would be the end of the problem but sadly the problems really only then began.
In Naomi’s own words ‘
‘When damaged from a tumour, surgery or an accident, the Hypothalamus can go totally crazy and for some really, REALLY cruel reason seems to do all it can to make that person morbidly obese. 75% of children become morbidly obese within the first six months after their craniopharyngioma tumour is removed.
Firstly, the appetite control centre messes up. People, kids, like my daughter, stop receiving messages of ‘fullness’ after eating. In addition, hormonal signals such as ‘leptin’ from fat tissue stores also get ignored, these signals would usually inform the brain that the body doesn’t need to eat. The result is a brain that thinks the body is physically starving. Now, we all know how hard it is to concentrate on anything when we’re really hungry. A brain that thinks the body is starving will only be able to think about things other than food for short periods of time. My daughter asks for food every few minutes of the day and, when one meal is over, will immediately start planning for and asking for the next meal.
Hana is getting bigger with each day. I saw Hana eighteen months ago four months before her tumour was removed. It breaks my heart to see what is happening to her. I’m uplifted whenever I hear her mother speak. I’m in awe of Naomi’s tenacity in the face of what must, some days, feel like such hopelessness. She never gives up.
The way I feel we can help is by sharing her blog posts and her Facebook updates. It may just reach someone who can make a difference.
I’ve posted the link to the video, please watch it if you have a spare moment. You can read more about Naomi at her blog Nurse Naomi here. I am re-blogging the most recent posting. I hope you will take the time to read it.
How to write about dementia? How to write about your own mother’s dementia? I’ve thought often about expressing my feelings and putting them onto paper and then publishing them on my blog. I’ve then thought, no, this is a blog about fun, about humour. But you know what? There is humour in dementia. In fact there is humour in everything. It isn’t always easy to see but it is there if you look. I’ve just returned from watching ‘The Theory of Everything’ and there was plenty of humour there. Of course, it isn’t easy to see humour in tragedy but it is the best way to get through life.
Writing about dementia and writing about mum is particularly hard as I’ve never shared much about her. Of course, when one has a family member with dementia, the fear is always there that dementia will get you too and what is most likely simply forgetfulness becomes a churning fear in your stomach. Am I stressed? Am I just doing too much, or could this be the start of dementia? It’s most likely the beginnings of old age but, of course, the fear is there.
The worst thing about having a parent with dementia is when you want to ask them something about the past. This can be heart breaking. A year ago I decided to look into our family tree and then realised I couldn’t. Those that could tell me things were either dead, or like mum, have dementia. I have no way of learning about the past. I have some photos of mum but I’m sure there were more but I can’t ask her what happened to them. I’ve recently become curious about how my parents met, what their life was like before they had me. Mum told me some of this many years ago but of course as time goes on all kinds of questions are raised in your mind. For example, I’ve just started learning to play the piano. I remember my mum playing. I have vague memories of her telling me about my grandmother’s piano (my maternal grandmother died before I was born) I now desperately want to hear my mum play the piano again. Ask her how she learnt. I never listened enough because I always thought there was plenty of time to ask questions. I never knew that time was limited. That she would still be here but her mind would not. I want to ask her things about my dad, who died five years ago. There are so many questions and no one to answer them.
Mum was a great reader. She read books that I struggle with. I remember her reading ‘The Cancer Ward’ by Solzhenitsyn and telling me how good it was. This was a woman who had very little education but she knew a well written book and read many classics.
Mum’s dementia seemed to strike suddenly but of course it didn’t. People have a wonderful way of hiding these things from you. I always thought her misunderstanding of things was to do with her increasing deafness. It wasn’t until dad became ill with cancer that we realised mum’s forgetfulness was not a simple symptom of age. Sadly dad’s illness and the stress of it tipped her over the edge. I knew it was more than bad memory when I visited one evening and asked dad if he felt he could eat something. It was 6 pm, winter and dark outside.
‘I can manage some scrambled eggs, perhaps.’ He said.
‘I’ll do them,’ said mum, except she got as far as beating the eggs in a dish and then would forget what she was doing. By the time I went to the kitchen to see what was happening with the food. Mum had three dishes of scrambled eggs on the go. I offered to make dad some cereal and she then panicked.
‘Is it that time already, I’ll make us breakfast.’
It was difficult explaining to her that it was still the evening. I then discovered numerous boxes of washing powder in the cupboards, tins and tins of cat food and replicas of just about everything. It seemed my ex-husband who had been helping with the shopping had been buying everything she wrote on a shopping list. Within minutes she forgot what she had in the cupboards and requested it all again.
I now feel sure my dad hid my mother’s condition from us because he didn’t want her being taken away from him and put in a home. My dad died at home as he would have wished. The day of the funeral my mum acted very strangely and I queried would she be okay on her own. We tried to get her to stay with my sister but she wouldn’t, insisting she was fine and wanted to be alone. There was aggressiveness about her at this time which I now know is not unusual in dementia patients who have a UTI (urinary tract infection). She was insistent we leave her. That night mum was found wandering in her nightie on a dual carriageway near her home. We think she was looking for her cat but we’ll never know.
She never returned home. She was in hospital until we could find a caring home for her. During this period she was very aggressive and gave one nurse a black eye after punching her. She wanted to go home but she was not safe at home alone and none of us were able to be with her twenty-four, seven.
Five years on and she is very happy in her home. Medication keeps her calm. She sings a lot and laughs a lot. She doesn’t know me anymore. Although she tells me she loves me and I’m very lovely. When I visit with my sister she seems to know that we are sisters but not that we are her daughters. Sometimes she’ll tell me that she had daughters. She’ll kiss me and let me hold her hand. She does not know that I am an author and that my books are in the bestselling humour chart. Although, like me, she always dreamt this would happen. My mum loved books. But I cannot share mine with her or any exciting news that happens regarding my work as a writer. I miss talking to my mum, sharing confidences with her and learning about her. I miss telling her my news. She will talk to me for hours about the same things. Her dead sister and her dead brother, her mum and her lover which makes me smile. I presume the lover is my dad but who knows? Who will ever know, in fact? She sits holding hands with her best friend Doris and I take comfort in this. I know if anything happens to Doris, mum won’t grieve because she will not remember her. Such is the blessing of dementia in one sense. The humour is there too. She tells me that the men chase the woman around the dining area and it is tedious because at her age she doesn’t need it. Mum is 89! Recently when the doctor visited her and leaned close to her to check her eyes, she asked ‘Are you going to kiss
I hope she makes 90. I’d like to have a party for her and maybe play the piano for her and see if she remembers that she once played.
I’d love to hear her play the piano again and to hear my dad play the spoons one more time.
Life is hard but if mum can keep smiling then so can I?