Compassion in Caring

My mum has Alzheimer’s. My Dad had it 7/8 years and ended up initially in a secure EMI (elderly mentally infirm) care home as he became physically violent. Before Alzheimers he was the most gentle kind active generous man who then lived out his days eventually living as a man who couldn’t speak, walk, or do anything for himself basically in a foetal position. Pneumonia took him. I remember the day before he died; after two years of non recognition he managed to raise his hand and touch my cheek his eyes for a second were full of pure love. He died the next day.

I started by saying about my Mum, I mention my dear Dad as somehow its intrinsically all linked, this heart rending despicable disease. It is different with each person so as mum started to get ill 3/4 years ago she masked it well bless her although I knew she wasn’t quite herself. But she was living in her Home, surrounded by 53 years of memories of her life with my Dad, the man she met at 18, married at 20. She appeared to be managing.

In the last two and a half years she began to slide, memory wise. Mum was always proud , Independent  and whatever happens this must be respected. You can’t force your help. But then she had a fall, it wasn’t a large or particularly bad fall but enough to shake her psyche.

So she asked me to help her with every day finances basic living stuff etc.

What I then  found when starting this for her, was the true picture of a woman drowning in so many ways, but desperately holding on to the lifeboat of humanity.

I could write for days about getting her to doctors consultants etc this time I won’t.

One of the hardest things is in the last 8/9 months how sad, frightened lonely confused ,desperate, childlike, she now is. As her only surviving child and daughter I’m really the only one she talks to. Understandably. Some times 5/6 times a day as I cannot live with her. Physically be there all the time.

She will talk a bit to my husband but it isn’t the same, even though he’s amazing . There is no extended family who can help. I understand the reasons .

The issues are now that I need help for her, I can’t do it alone due irritatingly and frustratingly to my own long standing health issues. I keep fighting for her every day and it IS EVERY  day because one thing one learns as a carer to a dear parent, is it is a fight; a fight against apathy , people skim reading letters you send , hospitals doing the bare minimum even when your mother is in deep dark despair and wants to die because of her fear.

Her fear is because her mother had dementia and it was a hideous end ; her fear is she will be locked away with ‘old Ill folk’. Understandable. She doesn’t see herself as old , do any of us?  Her fear is fear itself of not understanding the fog in her brain. As she put it once  at the beginning …’I see what I want to say or think , but there is a fog in the way, I can reach the thought but not touch it’ 

She doesn’t remember I’m helping her with everyday basic living stuff that insight has gone and more goes everyday.

It’s a living bereavement. For her. For me. For my husband.My son…

I’ve had lots of well meaning advice about her going in to a Care Home. How many people really know what these are like? I do I’ve seen plenty. The staff can be utterly fantastic but also indifferent. 

Does anyone know how much they cost ? I do . Minimum £1300 per week. When someone has no savings are in debt yes they sell their home to fund it but when the money runs out they can be moved anywhere. There are No care plans to help them stay in what would now be their familiar surroundings. Don’t be fooled. I’m not going to get political but I will say this has been like this at least 20 years using my life experience .

I’ve been round a few more recently. Some are palatial buildings made up to look like 5 star Hotels . Great you think . But £1800-£2000 per week. And no joy just corridors with rooms and a chill silence . No real interaction. And that’s the part that’s not for folk with dementia. Don’t get me wrong I’ve experienced what severe dementia/Alzheimers sufferers need. I’m not belittling the nurses…but ….well no words.

The other spectrum is how my dads was; wonderful staff but everyone immobile. Mum ….is she ready to be surrounded by that?  I’ve waited many months for professional medical consultants advice still waiting. When she moves for move she must it must be right for her. Can’t keep moving her for emotional upheaval issues and sadly financial.

My mum is ready, more than ready ,for help. She doesn’t realise. She wants to live out her days near me, as I do with her, in a little house with a pretty courtyard garden and her faithful cat.

How do you say this isn’t possible. 

You know you have to.

That day is here.

Don’t weep for me weep for her. Weep for the thousands who have no family support .