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TideisTurning
Peer Support Worker

Caring for Someone Living with Dementia

Hi Everyone, 

I know there may be some out there in our Forum Community who have people in your lives you love and care for who are living with dementia. So, I wanted to create a space to talk, share experiences and ideas and support each other. Remember too, that it is completely up to you what and how much you feel comfortable sharing 😊 Also feel free to make this your own and tag others who may be interested. I'll tag a couple of members to start though 😊

 

@Shaz51 @outlander 

75 REPLIES 75

Re: Caring for Someone Living with Dementia

Thank you @TideisTurning for starting this thread 

Yes seeing your love one getting dementia is heartbreaking as they changed from what they were 

@outlander , @Former-Member , 

@BlueBay  if you can add any words of support as you have seen this , love to hear any tips xxx 

Re: Caring for Someone Living with Dementia

Thanks for starting this post @TideisTurning 

and thanks @Shaz51  for tagging me. 
Caring for a loved one with dementia is the hardest thing ever. My mother in law (MIL)  was diagnosed with dementia at late 80's. She started to walk down the street but get lost. She started getting angry with us especially her only child, my hubby. After a year she started to get slightly worse. My mental health was deteriorating and my psych suggested hubby and I go away for a few days and we had to put MIL into respite. 
we found a nice aged care and she like it. So she stayed there and was ok. 

another 6 months passed and she was getting worse. Accusing her son of taking her money (which he never did). Anyway it was the day that hubby and I came hime from wirk and found her in her room screaming in pain. She'd fallen down and couldn't get up. So ambulance came and she stayed in hospital for 2 weeks. We had a family meeting with our case manager, doctors, physio and age care staff. They heard our side and I told them that my mental health was been affected by her dementia. So we all agreed that she wasn't coming hime.  It wasn't safe as we have stairs and we both worked. 

Re: Caring for Someone Living with Dementia

Continued ........

as she was in nursing home she started to get worse. It got to the point that she didn't recognise me. She thought I was the housemaid!!

she eventually didn't know her grandkids and at the end (last few months) she didn't know her son. 
she passed away two years ago this week. 

dendntia is horrible to see. You are a person who was capable of doing everything to end up laying in bed not able to talk to you, eat properly, go to the bathroom, get dressed, they talk to strangers in their room. 
To see her laying their was so heartbreaking 

I cried everytime I left. 
denentia is very cruel. 

Re: Caring for Someone Living with Dementia

Thank you my sister xoxo @BlueBay for sharing ❤❤❤

I made a new room downstairs for mum as she finds the steps too hard for her now 

Her mood changes soo quickly and is struggling in morning tea  conversations now 

@TideisTurning , @outlander 

Re: Caring for Someone Living with Dementia

You're welcome my sis @Shaz51  ♥️ Xxoo

Re: Caring for Someone Living with Dementia

Great thread

Re: Caring for Someone Living with Dementia

 

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hello @BlueBay@TideisTurning@outlander@Smc 

there a different kinds of dementia 

my mum is 90 and she is fixed on her routine , @Former-Member ,, @Former-Member 

Re: Caring for Someone Living with Dementia

Hi @BlueBay , thank you for sharing your experience. It sounds like it was a long and awful grieving process for you and your hubby, it's hard seeing loved ones suffer Heart

Re: Caring for Someone Living with Dementia

I think this is an invaluable thread, thank you @TideisTurning for starting it.

My heart goes out to you @BlueBay and @Shaz51, caring for our loved ones with dementia is both an honour and an experience that leaves an indelible mark. As you say @Shaz51, witnessing a loved ones personality and behaviour change from who they were to a person overtaken with a severe cognitive impairment, its truly heartbreaking.

I really like that list @Shaz51 (in your further comment). Being confronted with dementia for the first time can leave you feeling helpless – not knowing what to say or do, I found it to be quite shocking to see my once strong and capable grandmother in tears with so much confusion and anguish. One other thing I noticed was that whilst you're caring for your loved one you can be operating in automatic pilot/doing mode. There are so many responsibilities that come along with care giving and we can so easily step up to that plate and operate from a sense of urgency and neglect to refill our own cup, at least that was my experience. Do you all find that too?