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Am I just supposed to let my mum live like this?

Beaky144

Registered User
Nov 3, 2014
22
My mum is 65, has FTD and lives in a care home. She regularly fluctuates between telling me that she hates it and wants to come home to not knowing who I am and being unable to communicate with me.

I had a meeting with her consultant and social worker today who seemingly couldn't care less about my mum's worsening quality of life. Her anxiety, lack of sleep, stealing from others, wandering the home at night, being made anxious by the home's alarm systems, her weight loss (she has gone from a size 18 to a 10 in a year) and her sadness are all just part of the illness and there is nothing they can do to help her. They have also implied that they think I have unrealistic expectations.

But I really don't have unrealistic expectations. My mum has FTD. She is going to get worse and worse and die. She is going to gradually forget us completely, forget how to care for herself, become unable to go to the toilet and then forget how to swallow or breath. I am all too aware of what this disease still has in store for her and for us. But I feel really unwilling to accept that my mum is a lost cause and we should just rule out helping her. I wanted her doctor to suggest ways to help her sleep, another brain scan to see what progression has occurred and how else the NHS could help a patient. Instead I got disdain, no help and the distinct impression I was wasting her time.

Does anyone else find you get a diagnosis of dementia and then no support or on-going support? Any advice anyone can offer would be greatly received!

Thanks
Jo
 

Lindy50

Registered User
Dec 11, 2013
5,239
Cotswolds
My mum is 65, has FTD and lives in a care home. She regularly fluctuates between telling me that she hates it and wants to come home to not knowing who I am and being unable to communicate with me.

I had a meeting with her consultant and social worker today who seemingly couldn't care less about my mum's worsening quality of life. Her anxiety, lack of sleep, stealing from others, wandering the home at night, being made anxious by the home's alarm systems, her weight loss (she has gone from a size 18 to a 10 in a year) and her sadness are all just part of the illness and there is nothing they can do to help her. They have also implied that they think I have unrealistic expectations.

But I really don't have unrealistic expectations. My mum has FTD. She is going to get worse and worse and die. She is going to gradually forget us completely, forget how to care for herself, become unable to go to the toilet and then forget how to swallow or breath. I am all too aware of what this disease still has in store for her and for us. But I feel really unwilling to accept that my mum is a lost cause and we should just rule out helping her. I wanted her doctor to suggest ways to help her sleep, another brain scan to see what progression has occurred and how else the NHS could help a patient. Instead I got disdain, no help and the distinct impression I was wasting her time.

Does anyone else find you get a diagnosis of dementia and then no support or on-going support? Any advice anyone can offer would be greatly received!


Thanks
Jo
Oh Jo, I do so identify with your post, especially the bits in bold. Mum's GP will only refer her to social services, who will tell me she's over the funding threshold, and the consultant famously told her she was "doing very well for her age" :eek: Only moments before, he had been showing us the brain scans, so I know there are lots of gaps where the grey matter ought to be!

My mum is very elderly and her dementia is complicated by physical frailty. So our situations are different....but I agree with you, you should know that everything possible is being done for your mum. And it sounds as if more attention could be paid! I agree, never give up on anyone, dementia, age or not.

Not sure how this helps, but just wanted to share that I too feel utterly unsupported by the health services .......and I know we are not alone.

All the best and sending you a hug

Lindy xx
 
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Dustycat

Registered User
Jul 14, 2014
215
North East
I agree. I recently asked for a referral to speech and language therapy for my Dad who has Alzheimers as he struggles to speak at all. The GP more or less said well he has dementia what do you expect. Needless to say I wasn't happy and persisted and a referral has now been sent. I just feel we have to try. I feel like dementia is seen as no hope. X
 

Beaky144

Registered User
Nov 3, 2014
22
Thanks both. It's so shocking that we have to fight so hard to get any kind of care that is desperately needed and feel so unsupported. A doctor wouldn't tell someone they had cancer and leave them to die so I don't see why it is acceptable to do to a dementia patient. In a sad way it's nice to know that people understand what I'm going through although it's not nice that any of us are going through this!

Jo xx
 

chick1962

Registered User
Apr 3, 2014
11,282
near Folkestone
Same here my husband also got atherosclerosis and only 50% blood flow to the legs! They won't operate either and he is 65 and still has capacity ! Once you are under the dementia umbrella brushing off seems the thing to do with Consultants! What about quality of life!!!! Makes me mad !! They are now waiting until the blood flow goes down to 20% and then amputate his legs !!!


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Beaky144

Registered User
Nov 3, 2014
22
That's awful I'm so sorry to hear that. Sending you a big hug. Seems fighting every step of the way is all we can do.


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Jules44

Registered User
Apr 14, 2015
4
This is a mirror image of my story and it pains me greatly to know that someone else has been through this and is containing to do so. Tears were streaming when I read your post.......

I just posted in the forum regarding any possible help or advice I could get from here about my mother who also has FTD. She was diagnosed aged 68 and I have had the most horrible time trying to get her help. The reception you received from so called health care professionals dealing with your mother is identical to mine. I am a doctor working in the NHS and I have been appalled both professionally and personally by the lack of care there is for dementia patients, especially those with frontal temporal lobe dementia who specifically have very challenging behaviour.
I have been beaten down by the system so much over the last 2 years, that I got to the stage whereby I began believing that this is how you care for such patients - you just "leave them" and that having a "bad quality of life" is part of the diagnoses of FTD. When in actual fact, the hard reality of the situation, from the perspective of the health care professionals involved, is that they "can't be bothered to care" as the "case is too complex" or will involve too much cost to the NHS to cover care costs.
 

2jays

Registered User
Jun 4, 2010
11,598
West Midlands
Jules44. I'm so sorry that you too are finding it hard to get support

I'm sorry but your comment that you are a doctor in the NHS and you too can't get support appals me..... shows so clearly how much there is lack of support and how bad it is. It begs the question.... If you as a doctor can't find support how the L are we supposed to??

Huge hugs to you and all others dealing with this vile situation xxxxx


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Beaky144

Registered User
Nov 3, 2014
22
Jules44 I'm sorry that you are walking the same road as me. My mum's situation is worsened as she was sectioned under the mental health act and has ongoing mental health issues as a result of the FTD. The mental health care under the NHS was horrific so in some ways I'm glad she's now in the care home and under the older adults mental health/memory team. But it seems that once diagnosis has happened it's just OK to say "well that's part of her illness and there's nothing we can do".

It makes me sad for all the dementia sufferers out there that don't have someone fighting for them. What hope do they have if we find it this hard to do what we do?

Big hugs everyone xxx


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chick1962

Registered User
Apr 3, 2014
11,282
near Folkestone
This is a mirror image of my story and it pains me greatly to know that someone else has been through this and is containing to do so. Tears were streaming when I read your post.......

I just posted in the forum regarding any possible help or advice I could get from here about my mother who also has FTD. She was diagnosed aged 68 and I have had the most horrible time trying to get her help. The reception you received from so called health care professionals dealing with your mother is identical to mine. I am a doctor working in the NHS and I have been appalled both professionally and personally by the lack of care there is for dementia patients, especially those with frontal temporal lobe dementia who specifically have very challenging behaviour.
I have been beaten down by the system so much over the last 2 years, that I got to the stage whereby I began believing that this is how you care for such patients - you just "leave them" and that having a "bad quality of life" is part of the diagnoses of FTD. When in actual fact, the hard reality of the situation, from the perspective of the health care professionals involved, is that they "can't be bothered to care" as the "case is too complex" or will involve too much cost to the NHS to cover care costs.
Hello Jules44 my god, that's awful and seems to be the treatment of a lot of dementia sufferers .i have been fighting too but to no avail ! I don't want to burden you further with my story but wanted to let you know I am thinking of you. Big hugs x


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AlsoConfused

Registered User
Sep 17, 2010
1,953
It seems to me the care one gets is definitely a post code lottery. My parents happen to be amongst the lucky ones - they're in a relatively "good" area, with a wonderful GP and reasonable specialist services. It shouldn't be a matter of luck. Most of us are going to get old one day.
 

southlucia

Registered User
Dec 19, 2011
166
I couldn't agree with you more! My dad has FTD+ vasD. I feel totally alone in battling for my dad to be treated as a human being. ( see my thread - Other than the CQC..)
It's beyond comprehension :confused: