Carers - Self Care tips

• 1: Organising diagnosis
• 2: After Diagnosis next steps
• 3: How can others help and support you
• 4: Become organised and clear out (update)
• 5: Stages of Decline
• 6: Disappointment, criticism loss of friends and family
• 7: Exhaustion / Frustration / Challenges / being Late / no life
• 8: Personal care dressing
• 9: Install cameras
• 10: Showering
• 11: Vital Call
• 12: Respite essential for your well being
• 13: Pull Ups
• 14: Food is their pleasure
• 15: Dementia Clock - absolutely essential
• 16: Fun things to do (update)
• 17: Safety
• 18: End of Life Care
• 19: They become like Children (update)
• 20: Humour - made sure Mum laughed every day
• 21: Music is amazing (update)
• 22: A Carers Story on Facebook

1 - Organising diagnosis

There is a lot of shame and embarrassment associated with dementia

1 in 3 over 80 will be diagnosed with dementia.

Mum refused to be diagnosed would not go to the Doctor. Had to see my GP on my own and ask her friends to help me in encouraging her to be diagnosed. We had to encourage Mum that medication will help her feel better and that we want her to feel her best.

Diagnosis

Everyone who is diagnosed with dementia, is affected differently. There are over 100 types of dementia.

For over 65 years of age, it usually takes about 3 years to be diagnosed. For those under 65 years of age it can take as long as 7 years.

Mum was lucky, it took about 6 weeks.

My mum was diagnosed January 2013, I was working full time.

It is far better to be diagnosed as early as possible.

Their journey is unique - Mum developed a sense of humour

They do a mini mental test of 30 questions with their GP to see what can they remember. The GP provides a referral to a Geriatrician, which may take 3 months to make an appointment where they will undertake various tests, including CT scans to assess their brains. Mum was prescribed a dementia medication Aricept which only slows down the progress of the dementia.

As soon as they are diagnosed, ring Dementia Australia for their assistance 1800 699 799

In the beginning we all have a very short fuse and are so angry because of all the stupid things they do and the endless repetitive questions. Drives every carer crazy and we all feel like such horrible people when we get angry and upset with them. Luckily as they have no short term memory, they forget, but we do not and we all feel so guilty and ashamed.

I was forced to learn endless patience with much practice as it was not her fault she could not remember the answer.

Sadly with a diagnosis of dementia unlike cancer where most rush to help, most disappear and you are very alone. There is huge stigma and ignorance with dementia diagnosis, very tragic and we must make this change

Did you know only 30% of dementia sufferers are in aged care facilities and the remaining 70% are cared for at home by loved ones.

2 - After Diagnosis next steps

Register for free training on dementia, the various stages and what to expect, to help you understand the various stages of dementia

First Diagnosed

I cleaned out her home, as being a child of the depression, she was a huge hoarder. Took me 18 months every weekend cleaning out everything. So her home was far easier to navigate and far safer for her. Best part of dementia when they are hoarders they can’t remember what’s gone!!! Heaven! She used to carry on and scream when I started and her friends would take her out for the day so I could clean out her stuff. I took 120 bags of her clothes to Vinnies. She would return home and ask “what have you been doing today?” I replied " nothing much!" when I had taken 3 car loads to Vinnies and filled all the rubbish bins to capacity and had boxes ready to put out in my neighbours bins on our weekly rubbish bins collection.

I converted her bath with an overhead shower to a walk in shower. As she declined purchased a shower chair for her to sit under the shower whilst I washed her.

Will ring you endlessly, as they cannot remember, drives you crazy, you learn the hard way to have endless patience.

When she was first diagnosed her favourite perfume is Chanel no 5 and she used 3/4 of the bottle in a month. I realised she was putting on perfume every time she went to the toilet. So hid the perfume. I now buy her Lovely by Sarah Jessica Parker reasonable perfume doesn’t matter how much she uses.

She would tell me the same stories over and over again. She can’t remember she told me the story, so I learnt to listen to the same story. I never said to her, I’ve heard this before, or you’ve already told me this story. We all learn patience the hard way.

They are obsessed with tissues. Never bought so many boxes of tissues. Tissues in every pocket, every sleeve, every handbag, drives me crazy. Under her pillows. When I do her washing have to check everything if I miss one then tissues are thru all her clothes.

They are obsessed with locking all the doors with keys Mum had 3 locks and I took away 2 keys as it was driving me crazy unlocking all the locks 10 times or more a day

She was obsessed with keys would take my keys and put them in her pocket and lock me out, drove me crazy. She would lose her keys and I had to go looking for them through all her clothes, handbags, hide them in drawers, drove me crazy.

They forget the kettle, the toast in the grill, so the smoke detectors would go off regularly, had to buy an electric kettle and sealed the grill so she could no longer use it and had to use the toaster.

Will put things in stupid places, crockery in the fridge and freezer, food and underwear in their handbags. Ice-cream in the fridge, milk in the cupboards.

3 - How can others help and support you

How can you support someone who is a carer

What to Say

• Can I help by driving you to the doctor?
• I’d like to come over and sit with your husband while you go out.
• What day of this week works best to bring dinner over?
• I’m praying for you.
• How is your loved one doing?
• Here’s a gift certificate for ice cream or coffee.
• Would you like to talk about it?
• How are you really doing?
• Can I help you with the laundry?
• I thought of you and would like to bring a care package. When may I stop by?

4 - Become organised and clear out (update)

Need to become very organised

5 - Stages of Decline

Declining

Dementia carers face very different challenges to other carers. Because nearly all dementia sufferers become immobile, bedridden return to being babies and it’s terminal. There is no treatment nor cure.

Wandering

She would pack her handbags with shoes, underwear, food, to leave to go wandering so I had to take the garden gate keys away from her, so stop her wandering. Felt terrible doing this, but had to, to keep her safe

Loss of Memories

Mum would be become distressed when she could not remember things and I would reassure her by telling her, “I have all your memories, don’t worry, they are safe with me”, then she would relax and not worry about them.

They need 24 hour care. You can’t leave them as they fall and cannot get up. You have no life being a dementia carer. You sacrifice absolutely everything, your health, life, financial security,career, super, you are too tired to see your friends, ring them or go out.

Dementia care takes over your entire life as they decline they can do nothing for themselves

Dementia sucks the life out of carers as we have to be endlessly patient with all the endless stupid things they do as their brains are dying and no longer working. Everyone declines differently.

They can do less and less and return to being toddlers and babies where we have to do everything for them.

Forgot how to use the telephone a blessing, how to use the TV, forgot how to do everything, including putting on their makeup.

They don’t know who you are but don’t tell you.

Loved raspberries stopped eating those. Turned to chocolate eat a packet of tim tams or gaiety a day, didn’t care as long as she was happy.

As they go down will need a walking stick, then walker and then wheelchair. Plus shower chair as they need to sit whilst having a shower.

I ask her “Are you telling porkie pies?” She roars with laughter, but does not know what it means.

Another time Mum said “Is that your car up ahead?” I replied “Mum, we are in my car ?”

Mum kept commenting on my huge feet, and ask “what size shoe do you wear ? " I answer “gigantic or 100” and each day my shoe size got bigger

“Who’s that strange man ?” she would ask of my partner Paul, we would all laugh.

As mum is declining and struggling to walk. I hold both her hands and tell her to put her feet together when she is sitting down to help her stand up. If her feet are apart she has no balance. She tells me “I can’t do it”. I tell her " I can’t carry you !” So she stands up with my help but is quite wobbly on her feet. So then I tell her " stand straight like a pencil, head back." Once she is standing straight, she regains her balance and confidence. Sometimes I say to her when she is all bent over “not like the hunchback of Notre Dame”. Of course she tells me either “don’t be rude” or “you’re being very rude!” I reply, " really, have been working hard at it !" and we both laugh.

They become unsteady on their feet, kept finding mum on the floor. Absolutely Heartbreaking, she had 8 weeks of falls then stopped walking.

6 - Disappointment, criticism loss of friends and family

You will lose friends, they don’t understand what you are going through

You will lose family members as they will turn their back on you.

A few will criticize you for your choices, when they have no idea of the hell you are going through.

I learnt to walk away and let those people go, don’t need toxic people in my life. Life is hard enough without thoughtless, stupid comments being a full time dementia carer

Many disappear and you feel very alone as no one understands unless they have lived it or are living it. Hence it is essential you join a local dementia carers support group and attend regularly.

I made friends with other carers and it is so nice to catch up for coffee or lunch and share our stories of woe and be able to vent.

7 - Exhaustion / Frustration / Challenges / being Late / no life

Unless you have lived it and looked after a loved one with dementia full time, no one understands the challenges and utter exhaustion.

For many it’s a very painful journey with loss of friends and family, unjust criticism and very little understanding.

I would go to sleep exhausted and wake up just as tired.

There are days where you can do absolutely nothing.

I have never known such overwhelming exhaustion, from being endlessly patient, having to think for them, do everything for them, run their lives.

The only way I could keep going was eating large family blocks of Hazelnut chocolate, in one hit, several times a week, to keep my energy levels up. Of course I put on weight, but was too tired to exercise as well.

We are all far more sensitive, as we are all so very tired.

There is no time nor energy left for you to have a life, being a full time carer.

Dementia caring sucks the life out of you.

You come last and you will run out of clean underwear, don’t care what you look like, have no energy to enjoy life anymore.

You won’t have time to do your hair, you will be too tired to eat well and watch what you eat.

You will always be late for everything and everyone. As you have no control over your time and life. As looking after a loved one with dementia is all encompassing.

No matter how hard you try, it is just your life of being a full time carer with dementia. Being Late !

You will be too tired to exercise, to go out, see your friends, to do what you want to do.

You just have to accept, your life is not your own whilst being a full time carer.

Many carers enjoy their gardens, balconies, window boxes, indoor plants. I love going to the Bunnings (biggest hardware store in Australia) to buy plants to plant in the garden, or for inside my home. Gardening is so very relaxing and rewarding as you switch off from everything. The garden always rewards you for all your hard work.

Feel like it is contagious, my words become muddled up, you do become resentful

Overwhelmed we feel like the walking dead, being a carer sucks the life out of you

I am worn out running her life. As they can do less n less, you have to pick up what they can no longer do.

I am too tired to cook, to ring my friends, to go out. I am constantly worn out. By the time you do all the looking after. There’s nothing left for you to have a life. It only gets harder as time goes by as they deteriorate. At times am too tired to sleep at night.

A friend with no understanding said to me “now you’re having a break, you need to exercise.” I replied “Impossible, beyond exhausted feel like the walking dead”. Need to recharge and do nothing. My partner looked after me, as my energy levels were minus 200% I watched tv and slept for a week at his home. I was so blessed I visited another friend in the country, who took care of me

I reminded myself every single day, no storm lasts forever and one day this will be over.

I would escape with Pinterest and gorge myself on beautiful places, photos and making up many boards. It’s like online shopping without the price tag. I would also watch my 600 lb life, Air Crash Investigations as watching disasters always makes me feel better.

8 - Personal care dressing

Personal Care

Mum loved going to have her nails done at the local nail shop, where she had a manicure and pedicure regularly, until I could no longer afford it.

Toe nails best to go to podiatrist

Take her to dentist every six months and organise transport to collect you both and take you home. Too hard going on public transport and expensive taxis.

Getting her up in the mornings

She used to call me when I was a little girl ‘lazy good for nothing’, well it’s pay-back time so I call her that now or ‘sleeping beauty’ when I get up every day. She roars with laughter.

Clothes

I do my best to make sure she always looks her best as if you look good, you feel good.

Put away their good jewellery for safe keeping, as they lose things.

Have to check her handbag everyday as she fills it with fruit, underwear, biscuits, cakes, tissues.

I bought from Kmart target black leggings with elastic waist and donated to Vinnies all her trousers with zips. Too hard to dress her.

I usually put her in her pyjamas around 5.30pm.

Doesn’t matter if she goes to bed in day clothes.

She cannot remember how to put her makeup on.

She cannot dress herself if she does she has them all muddled up, puts them on back to front, on top of her pyjamas, all mixed up.

Need to choose their clothes and help dress them

Dressing her, Mum would often complain “The sleeves are too long”. I reply “What’s the problem you are still growing aren’t you ?”

“I’m cold” She complains when I change her clothes " I reply, well you just have to wait, I cannot do this any faster"

Hawaiian Fridays

I dressed mum up every Friday in a Hawaiian shirt and silly hat. I collect silly hats and Hawaiian Shirts and have over 50 of each. They always make me happy. Who cares if people laugh with me or at me. When I worked in the corporate world I wore them every Friday, since my beloved Dad was diagnosed with a brain tumour in 2000. I call this my happy cupboard. When I worked with my favourite boss Adrian at MLC, I had a mirrored disco ball above my desk and we had Hawaiian Disco Fridays and I would play my disco music, spin my disco ball and get the the team to do YMCA at their desks.

So decided after being forced to quit my career December 2014 due to a horrible boss the Friday before Christmas, due to Mum’s dementia, I was absolutely devastated at the time. I would dress up Mum instead and continue my tradition of Hawaiian Fridays and posting pictures up every Friday on Facebook. She would go out with Holdsworth our local seniors community group on Fridays and they would pick her up in the local community bus. They would all roar with laughter when they saw her in a different outfit every week. She never wore the same outfit on Fridays. She loved wearing my many crazy outfits, including the following. Laughter is the best medicine.

I call it adult doll dressing, I love to choose her clothes n costume jewellery and make sure she always looks her best.

I tell her “you have your own personal stylist and hairdresser, aren’t you lucky?”

9 - Install cameras

Install Cameras to monitor her when out

I wanted to install cameras with her homecare package so I could monitor her on my mobile phone when I’m not with her. Impossible to be with her 24/7. But I could not access a homecare package and did not have the money to pay for it, nor is it tax deductible.

10 - Showering

Doesn’t like to shower. Make it a game Simon says, Deanna says get in the shower now.

I used to play a game with mum as most dementia sufferers loathe having a shower. I called it Simon Says, instead Deanna says. So she had no choice but to go to the bathroom.

One morning, when I went to the bathroom, getting it all ready for her and turned on the shower. I used to joke with her and say, “it’s your favourite time of the day,” as she hated having a shower and she would say, “no it’s not!”

Mum is in the living room and says” I felt the shower, its cold!!!”. “Cold?” I replied “ how can you feel it in the lounge room ?” “ I did” she replied.

Then I tell her " I can’t let you going out smelly!" she replies " don’t be rude!" When I have to do her hair and she does not want her hair washed or brushed I say, " I can’t let you go out with a birds nest on your head" She replies " Yes you can!" We have this daily banter as I know she finds everything a struggle and was no longer enjoying living anymore.

Put shower on as you undress them , so it’s warm when they get in

Put towel on toilet seat, to sit on, once out of the shower.

Liquid soap put in flannel to wash her in the shower.

Mum used to ask what is the colour of her hair. Ask a silly question get a silly answer. Every time I washed and blow dried her hair she would ask “what is the colour of my hair?” I would tell her a different colour - Pink, purple, green, blue. She roars with laughter. When I wash n blow dry her hair I would ask her what colour would she like. Pink became her favourite hair colour. Light, hot, pretty lovely Pink.

Becomes like a toddler, throws tantrums.

She used to carry on and complain, scream when I sprayed her with deodorant, drying her with a towel. You would think I was murdering her, so I said to her “no complaints are allowed or I go on strike.” So I stopped when she carried on and she roared with laughter.

If I touch her toe and she complains I’ve hurt her I tell her “stop being so greedy, you have another 9 toes, you don’t need that toe!!” She roars with laughter.

Now when I dress or undress her, she turns into a giant starfish or octopus with her hands wide apart hanging onto the rail in the bathroom. I have to tell her, “you can’t be a giant starfish / octopus, I cannot put on or take off your clothes” she laughs.

Heading

This is in bold adn this is in italic

This is a blockquote

List of things:

1. eat
2. drink
3. sleep

bulleted list:

• hello
• world

[Dementia Support Australia](https://dementia.com.au/)

11 - Vital Call

Vital Call

I had vital call, which is a button they wear around their neck, can wear it in the shower, so if they fall they press the button, there is a speaker in her home and they will organise assistance. Sadly mum could not remember what it was for. So decided to cancel it, as it was a waste of money. They do have falls and I did find mum on the floor a number of times unable to get up off the floor, which is heart breaking.

12 - Respite essential for your well being

Respite Care Essential for your health well being

My GP said many in my generation are suffering health consequences from caring for elderly parents

I cried and gradually learnt to laugh my way through the muddle, the misery, the chaos, the exhaustion, the hell and accepting having no life of my own.

Being a full time carer, you have no life as you must do everything for them as they decline, they can do nothing for themselves.

Carers are entitled to 63 days per financial year in Australia

I would get to the point where I had zero patience, being angry and upset and not coping. Very normal when you are looking after someone with dementia 7 days a week. It wears you down. It is relentless

When they go into respite care, do not pack their best clothes, so it doesn’t matter if something goes missing.

I would tell mum, we were both having a holiday. She was going away to have some fun and I was having some fun at home. The first time she went into respite care, she was worried and asked “am I sick?” I assured her, and said “no, you are fine, you are here for a holiday and then you will be coming home.”

I would pop in every few days for a few minutes and not stay long, because I needed a rest.

They always return home worse and have declined. Need it for your sanity and well being.

(at the moment) Respite care for self funded retirees, we must pay for it, it is not included in Homecare packages nor is it tax deductible.

13 - Pull Ups

As she become incontinent I put her in pull ups. She did not like them at first, but it just became part of her routine. Far easier to do it early on, than having to deal with constant accidents everywhere and endless washing and cleaning up.

Best quality pull ups are far better than cheap ones. Otherwise poo goes everywhere, you are forever washing.

Baby wipes for pull ups are essential, Aldi make the best ones . I don’t have children, did not know. Do not flush wipes down toilet put in plastic bag with pull up.

Sudocream for her bottom so she does not get a red sore bottom from wearing pull ups 24/7.

Collect plastic bags and keep them with the new pull ups to put the dirty ones in

It does get easier dealing with the pull ups, you can barely smell it when you change them.

Chemist warehouse Tena pull-ups buy 4 get 5th one free.

Sheet protector with plastic and fabric for their bed to keep the bed dry. As accidents happen regularly even with pull ups. But not with the Maxi ones, money well spent.

She gets impatient when I am changing her pull ups and complains constantly. So I say to her " Just you wait Mr Higgins, just you wait" she laughs. She doesn’t like it being done and I tell her " Mum I hate it as much as you do, you don’t like it being done and I don’t like doing it, so we are even But it must be done !!"

14 - Food is their pleasure

Food

They become like toddlers, throw tantrums, crave sugar and become fussy eaters

Don’t care what she eats as long as she is happy. Used to get upset when she would eat ice cream and chocolate for breakfast, lunch and dinner. Who cares, probably her main pleasure in life. Like a toddler craves sugar.

Beside mum’s chair where she sits in the lounge room, I leave bowls of fruit, mandarins, grapes, raspberries, strawberries and box of biscuits, chocolates. So she always has something to eat. She grazes all day. Don’t care what she eats, as long as she eats.

I would joke with her, she hates meat and tell her her she’s having meat for breakfast lunch n dinner, to make her laugh.

My partner bought her a big box of chocolates one Wednesday night for her and I knew she would eat the lot in two days. Saturday morning of course the box was empty. I thought I’m going to have some fun with mum but did not expect her response. “Mum !!! I didn’t get one chocolate !!! " and she replied emphatically “neither did I!!!! " I roared with laughter and asked her “well who eat them? " " It wasn’t me” she replied.

15 - Dementia Clock - absolutely essential

Dementia Clock

Clock best $$$ spent, Includes day of the week, month, date, saved me answering 30 questions a day!!!!

16 - Fun things to do (update)

Games

TV

17 - Safety

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18 - End of Life Care

Palliative Care

When she stopped walking 1 June 2018, I could not access a homecare package and I was desperate for help. I hired a hospital bed as I could not lift her up to feed her in bed.

Their taste buds change things they loved to eat, they stop eating. Mum loved fish n chips didn’t like it anymore. Became fussier and fussier.

Then they stop eating and only want soft things like, yoghurt, chocolate mousse, tiny pieces of sliced peaches. Do not want to eat anything savoury. Juice, no water . Don’t want to be turned, hate changing pull ups. Just fed up with living and life.

She made lots of moans and groans so I asked her “what’s wrong are you dying?” she replies “yes I am ! " so I reply " how long is going to take you?” We both laugh. You have to laugh or you cry. Then I say “well it’s not a good time at the moment !! " so we both laugh.

After all the help Mum had provided to so many, after all her tireless community work, after working hard all her life and paying taxes. When she needed help it was IMPOSSIBLE to access.

It was absolute hell on earth with nowhere to turn to.

I have never known such anguish and despair, when I could not access any assistance as Mum was dying.

2nd July 2018 Malcolm Turnbull announced $38 million for dementia research one of my carer strategies when I met with his office on 18th April.

After I had done all this………………

2 July 2018 the NSW Chief Tax Commissioner got a staff member to ring me and threatened to default my mortgage unless I paid my outstanding land tax on $12k on a payment plan till December 2018.

When I cannot pay my bills, am drowning in debt, all thanks to NSW Revenue unjust land tax double dipping.

I could not afford to pay for help, to help me look after Mum.

I cried buckets !

In desperation I rang St Vincent’s hospice, hoping I could book her in, they said, no, not possible, there is absolutely nowhere to turn to for help. They advised me to contact my GP to organise with Uniting for the Geriatric Flying Squad.

My GP got in touch with Uniting at War Memorial who sent out the next day the Geriatric Flying Squad team who assessed mum. They immediately organised an air mattress to help with mum’s bed sores and hoist at no cost. The nurse came over every couple of days to dress her bed sores.

Mum went down very fast once she stopped walking, absolute blessing, she was gone in 13 weeks.

How many other carers are in this situation ????

The geriatric flying squad told me there are many, many in my shoes who are drowning in debt, cannot access any help, refuse to sell.

There are 176,000 on the waiting list for Homecare packages.

To make you all laugh a story about caring . The occupational therapist said to me , “now you need to roll your mother several times a day on her sides, so she does not get any bed sores.”

I had the uniting geriatric flying squad, a Dr, occupational therapist (OT) and physiotherapist. I was asked “have you been rolling her on her side.” I replied “no, too hard”

Jane the OT said “we will show you how to do it with a sliding sheet so you can do it on your own!” I thought to myself this will be very interesting. There was 3 of them and they absolutely struggled to turn Mum on her side. Inside I roared with laughter but kept a straight face. They realised impossible for me to do it on my own.

They also wanted to see if they could get Mum to walk with the Physio. I was also proven right. Mission impossible. They have kindly organised a hoist to be delivered on Friday to help me look after Mum as clearly she is impossible to move even with 3 people, let alone me on my own.

Mums air mattress was not working properly so the OT returned with a nurse who dressed mums bed sores and swapped the air mattress for another. I told her I roared with laughter inside when the 3 of them struggled to turn Mum on her side. They both laughed to 😂

When it’s their time to leave us, please give your blessing to go upstairs to heaven.

That their family and friends are waiting for them and they will return to looking and feeling their best. They will have a big welcoming party. They don’t leave until they know you are ok and you give your blessing to go upstairs.

If you cannot access any assistance and are in dire need of help

Uniting is the biggest Aged Care Provider in Australia and is part of the Uniting Church.

Ask your GP to contact your local Uniting Group who have the Geriatric Flying Squad. The squad includes a nurse, Doctor, Physiotherapist

Who will come out and assist you with equipment, nurses for dressing of bed sores, show you how to look after them at home

This is a government subsidized service and is free of charge

No Hospice access in Australia for dementia

We should have access to palliative care in a hospice, when our loved ones are dying, when they are not in an aged care facility and we have sacrificed everything taking care of them at home.

19 - They become like Children (update)

As they Decline they become like children and eventually a baby

20 - Humour - made sure Mum laughed every day

Laughter is the best medicine

Mum n I whilst waiting for the Holdsworth bus out the front, every Tuesday and Friday, we would look at all the trucks driving by, deciding which was the biggest that would pick her up instead of the Holdsworth Bus and roar with laughter at all the buses and trucks.

I ask her “who is the bully?” She replies “YOU!!” we both roar with laughter

I ask her “who is the lazy one ? " she replies “You!!“we both roar with laughter

21 - Music is amazing (update)

Laughter is the best medicine

Mum n I whilst waiting for the Holdsworth bus out the front, every Tuesday and Friday, we would look at all the trucks driving by, deciding which was the biggest that would pick her up instead of the Holdsworth Bus and roar with laughter at all the buses and trucks.

I ask her “who is the bully?” She replies “YOU!!” we both roar with laughter

I ask her “who is the lazy one ? " she replies “You!!“we both roar with laughter

22 - A Carers Story on Facebook

Just read this story on one dementia support group on Facebook.

Not my story, mum was never violent nor swore. Not all dementia sufferers are violent or curse or swear. They are all unique !

This is exactly what every carer goes thru - family have zero understanding of what it takes to take care of a loved one at home, full time ! This has a very happy ending.

“Sooooo yesterday was interesting. My hubby wanted to invite some of his family to our BBQ, not a problem. I told them to make sure they understand his mom isn’t who she use to be and things have gotten worse. As I’m cooking outside with everyone MIL comes out wearing bright yellow shorts, pink tank top, cowboy boots and a lampshade. You could’ve heard a pin drop. For us as in me, hubby, our children and their close friends, we are used to this, HOWEVER my in laws and their high horse aren’t. My Mother In Law (MIL) felt embarrassed and started having a melt down, so my daughter and her best friend go find a lampshade and came out wearing it to make her feel comfortable. Here’s where shit got real…..

My MIL sister started telling me that the way we are taking care of her was ridiculous and the reason why she isn’t getting any better is because we keep letting her do whatever she wants. Basically I’m letting her live like an animal. Soooo me being me, I told the bitch that if she didn’t like it, I’d gladly pack her stuff and she can take care of her. If looks could kill, she would’ve killed me. So I asked her, what? No answer????? God forbid she actually cares about her sister, let alone ANY of them care about her. So I told her to ask her sister what color the sky is, she asked her and MIL replied with “Green”. Her sister told her NO, ITS BLUE, my MIL threw a glass at her and called her a cunt and said its GREEN because God loves the color green. This went on for an hour. I pulled up Lewy Body Dementia and had MIL sister read it, also gave her a list of MIL medications and pulled up 2 videos, 1 video was from last year of MIL when she was some-what normal, how they remembered her and another video from 3 months ago, where she took her diaper off and pooped in the living room, when I asked her who did it, you can clearly hear her blame the dog. My husband asked me why I was doing this, I told him I was tired of fighting with his family, tired of them telling me what I should and shouldn’t do.

There wasn’t a dry eye and his aunt wouldn’t stop hugging me and telling me “Thank You “. I told them instead of me being a bitch, I thought I would educate them and if that didn’t work, well I was going to kick them out lol. Before they left my MIL sister sat me down and tried to give me some money, but I wouldn’t take it. Soo she asked what could they buy that MIL needs the most. I told them wipes and diapers. I woke up this morning to a knock on my door and it was packages of diapers. 400 diapers and over 2,000 boxes of wipes, with a note that read:

“There’s no words to describe what an amazing woman you are! Thank you for all your sacrifice, sweat, tears and most of LOVE. I booked your guys getaway for next month in Cancun for a week, everything paid for! Don’t worry, we will be there to take care of my sister while you guys are gone. Thank you for opening up OUR eyes and making us understand what you are going thru. Please let me know if there’s anything else you need.”

The continuing story, every Dementia carer understands this completely, unless you have lived it, no one understands Part 2

My MIL sister came over yesterday. The same 1 who sent me diapers, wipes and booked our vacation to Cancun. She will be in Vegas for 3 days for work and wanted to see what it was like to literally walk in my shoes. Yesterday she got 1st hand of what my morning routine was and lets just say MIL sister had a break down. I asked her if she wanted me to step in and she said no, she needs to learn this because they will be with her for a week. Sooooo I said oookkkkk. At first she tried to correct my MIL on EVERYTHING, clothes, her eating habits, her hygiene, EVERYTHING! After 4 hrs she finally asked me, how do I handle it. I told her I was just like her, thought I had to correct her, but I figure as long as she isn’t hurting herself, anyone, I let her do whatever she wants.

Current situation: MIL sister has been swatting an imaginary red bird for an hour. She asked when do I ever get to brush my teeth, eat or take a shower…. I laughed sooooooooo hard! I told her I didn’t even get to brush my teeth for Easter and yesterday was the 1st time because she helped with her. She looked at me and said I’M SOOOO SORRY! I told her, no need, you get use to it after awhile lol. Now, enjoying my candy that I couldn’t on Easter lmfaoo

Carers story part 3

Y’all don’t understand how much I’m sooo sad to see my MIL sister leave! It was rocky in the beginning but this woman literally understands and feels what I go thru. This morning she made breakfast and let my MIL help. As we’re sitting at the table MIL comes in wearing a lampshade, her sister said oh yeah let me go get mine! I crieddddddd!!!! Yessssss!!!!!! They sat there wearing lampshades, ate their cereal with NO spoons and just acted silly together. We all went to the store and YESSS LAMPSHADES AND ALL!!!!! Her sister said for the 1st time in her life she didn’t care what anybody said or even cared about the stares. They walked hand in hand and when MIL had a meltdown she sang THIS LITTLE LIGHT OF MINE (Her comfort song) as loud as could be. She called my daughter and asked her what should she do when she has a meltdown and she told her that songs calms her down. Her sister left but she cried and cried, she said I saw the good, bad and ugly and she found herself showing sooo much compassion she didn’t know she had. I hugged her sooo tight before she left. MIL calls her, her play date. She doesn’t know who she is, but her sister said she doesn’t care. She wants to be part of her living her best life because TIME is something we cant get back once its gone. She thanked me again for opening her eyes. Ughhhh I’m sooo sad she left, but her and MIL have been texting back and forth since she left an hour ago. #HUMBLE #BEGINNINGS#GRATEFUL