This is not a story of a weeping and wailing tragedy for a perfect mother who has been transformed into mad Mrs Rochester by dementia. This is how things really are when you don't get along with your mother, she gets dementia and you are all she's got.
I'm pretty sure my mother’s dementia started after her double hip replacement. This sounds arbitrary but getting a firm diagnosis is. Her normal behaviour, which was to say the least always challenging, became increasingly worse when she came out of hospital. Traits, habits, routines now became obsessions; She'd phone me at work throughout the day asking me when I was coming home; no matter where she was she had to be back home at 4 o'clock; visitors were told to go home if they stayed beyond that witching hour so inevitably they stopped coming round and her world grew smaller.
"This is how things really are when you don't get along with your mother, she gets dementia and you are all she's got."
Caring can metamorphose from minor irritations to major incidents within months or it can take years. My dad at 90 years old would be my mother’s main carer with me, his backup, overtime switching roles as she became worse. I found this particularly difficult as my mother and I were not close. Indulged and spoiled all her life by my father, dementia never curtailed her determination to get or do what she wanted 24 hours a day.
Over time accidents started to happen. Bed wetting, which is when we got a commode but she wouldn't use it. We had to lift the carpets and put cushion floor under. We also put it down in the bedroom and bathroom for easier cleaning. I was washing duvet quilts and covers every day. I begged her to use the commode. No, she wouldn't. She wouldn't keep her hearing aids in or her false teeth, she lost numerous sets. Was she just being her usual difficult self or was the behaviour due to her dementia. Sometimes we didn’t know. The GP was never sure. She would argue, ball and shout at us just as she'd always done. She wouldn't let my dad out of her sight. He had to take her with him everywhere, even to his pigeon racing club meetings. She insisted on visiting the doctor every week till even the doctor was as frustrated as there was nothing physically wrong with her and she was still so lucid in conversation.
She then decided she was too fat, stopped eating proper meals and just smoked and drank Cinzano instead! She'd punch or kick me if I tried to make her eat. She'd pile her cigarette butts in a bowl of water and ‘God help you’ if you tried to empty it. She took it to her bed for 3 weeks refusing to wash or eat and wetting the bed almost every day. She became so frail she started falling regularly, then she'd be back into bed again.
A friend who worried about my mental health, advised me to seek help via the social work department. I did and we turned a small corner. After much persuasion and weeping and wailing from me, she agreed to attend to a day care centre once a week and then the occasional respite weekend. It was on her return home after such a weekend that she deteriorated rapidly. She couldn't recognise my dad! She emptied all the cupboards in the house into black bin liners and wept because she didn't know where she was. For the first time in two years I was 100% certain she had dementia. We brought in our GP who referred her to the mental health unit at our local hospital for assessment straightaway. She was diagnosed with vascular dementia and they advised us to put her in a home as her behaviour had become unsafe to both herself and my father. Luckily, all her recognition had returned.
"She couldn't recognise my dad!"
She was transferred to a community hospital whilst we looked for a care home. She was refused a place in our first choice of care home as they said she was 'too challenging'. This is Care home 'speak' for - they would have to spend money to put on more staff to watch her, therefore it was too costly! However, she did get a place a few weeks later in a home a few miles from where we lived.
The care home is brilliant. She still won't eat much but they deal with it. She can't walk and is incontinent but they deal with that too. She fights and argues with patients she doesn't like and they sort it out. She goes to the hairdresser, has her nails done, and sings her head off at karaoke. All things she would never have done for me. She has a better quality of life. What I’ve found is that her personality has remained through her dementia. She'll look at me and say something so lucid I'd swear she didn't have dementia, and then in the next breath she'll say a man came into her room and stole £100. Some of the stories she spins leave me helpless with laughter or cringing with embarrassment. She calls our GP, a large lady, ’fatty’. She talks about her sex life to anyone. You will be embarrassed, so get used to it.
Strangely I get on better with her now than I ever did, although she can still stab me in the heart with a cruel comment. I enjoy buying her pretty clothes and decorating her bedroom in her favourite purple. I even get compliments, a very rare event during my 60 years of being her daughter.
The journey to get to this point has been torrid and I have been stronger and more dedicated to my role than I ever anticipated. So I hope I could offer you a few of my tips for survival as you travel along dementia road.
Don't me a martyr. Get outside help as soon as possible. Contact social services and ask to be assigned a social worker. Once appointed they will get you access to day centres, respite care and are a sympathetic shoulder to cry on. Or ask your GP to refer you for a community psychiatric nurse. Let rip, cry and tell them if you can't cope. They will help you.
Take EVERY offer of help you get from friends and relatives. This will go on a long time, maybe years and you WON'T be able to do it on your own. As time goes on and the dementia gets worse the offers will dry up so take it while you can.
Early stages of forgetfulness don't last forever. Worse will come, so be vigilant, try and be prepared. They will miss the toilet or not get there in time so lift carpets and put down Lino before floorboards become rotted and you can't get rid of the smell. Contact your district nurse to get incontinence pads. Ours delivered them on a regular basis although my mother refused to wear them. She never made anything easy.
Dignity is a hard one. Is there dignity with dementia? I remember a social worker insisting my mother got new false teeth to keep her dignity. I knew she wouldn't keep them in and lose them yet again so I asked her if she wanted new teeth. 'No I don't like wearing them' came the reply. So don’t apply your standards of what you think your relative wants or how you think they should look. They are different people now. They might want different things. So ask them. Dignity for a dementia sufferer is letting them be what they want to be now and not trying to keep them as they were before.
"Dignity for a dementia sufferer is letting them be what they want to be now and not trying to keep them as they were before"
Care homes are not the worst scenario. They can be the best thing for your relative and you. They will have constant company. They will be safe. They will be warm. They will be fed 3 times a day. Take time choosing the care home to make sure you get a good one. Some baddies are still out there. Look online for the Care Commission report of the home you like and ask residents' relatives for their opinions when you make an assessment visit. Visiting times can be difficult at first. No matter how clean the home is there will usually always be a smell as someone somewhere will have wet themselves or worse. Smell lingers no matter what you do. You'll get used to it. I thought I never would but I did. Don't just sit and try to make conversation. Take something in to do with them. Videos of our dogs on my phone are my mum’s favourites or watching dancing dogs on YouTube. If they aren't too advanced with dementia play games with them on your phone. They quickly learn to press the play button. Can they still knit? Some residents in my mum’s home still knit beautifully. Read or look at a magazine with them. My mum still loves 'Hello' magazine. You'll be amazed at what they still can do. Ask them, don't assume you know best. Or as my mum says to me 'I'm not daft, you know" if I ask something too obvious. You have to smile. Accept their changed personality as their new 'normal'. They are not going to get better. Find humour in everything they say and do as one day they might not be able to talk. They love to sing. So while they can, sing with them. My mum loves ABBA now just as much as she did before she had dementia. Yes, you will weep a river of tears. So will they. I've sat and watched while my mother takes a TIA (mini stroke), her eyes glazed over, her tiny sparrow body frozen as another part or her brain erodes. Then the next day, worried, I'll visit her only to be greeted with "where the bloody hell have you been I've not seen you for weeks". She’s not daft, you know!
The whole MindMate Team is extremely grateful for this valuable guest post! Thank you Elaine, for sharing your experience. We believe that this can help a lot of people!