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Does this mean anything different for us?

Thethirdmrsc

Registered User
Apr 4, 2018
515
0
Yes, definitely people drift away. As Martin says, they don’t know how to talk to them, or deal with the behaviour. It’s not a sympathetic disease like cancer. People are more scared of it.
 

Yankeeabroad

Registered User
Oct 24, 2021
24
0
I sometimes think the medical profession see a diagnosis of dementia in a completely diferent way to the rest of us. We see a difficult future and hope to make 'living with dementia' positive for our loved ones, as far as we can. The medics seem to see it as 'Terminal, so no point in bothering with anything further. This person will get worse and then they will die.'

I'd say my mother was written off. Actually I'd say she was never written in! She was undiagnosed, had a fall then hospital for a couple of months, then I moved her to a care home. She was diagnosed by a consultant about 6 months later. He had seen her hospital scan then visited mum for an hour (so he said) then phoned me. His diagnosis was initially vascular dementia but after talking to me about mum's increasing struggles over the past 5+ years, he changed that to mixed dementia (Alz + VD.)

Mum was actually very well physically when she went into the CH, though cognitively was completely loopy most of the time. But she could still do a good hostess mode. No medic showed the slightest interest in her dementia from that point. No one asked me how she was, no meds given. A GP visited once a year to visit all residents of the care home and his comment was, 'She's getting worse, isn't she?' He was actually really nice to me, which I appreciated, but basically I was left to watch mum die, which indeed she did, 3 years later.

Maybe it's time for a bit more honesty and a diagnosis of dementia should be followed by a statement of, 'Yes, it's awful and I'm sorry...but there's nothing we can do.'
I’m sorry to hear that.

My parents are in the US and it’s almost opposite. We went to the neurologist looking for a “guide” for the future — milestones to watch for so we can plan (my sister and I are long distance cares so this is particularly important). The neurologist is still looking for a medical reason for her condition and rapid decline despite CAT scans showing a profession from mild/moderate to severe small vessel disease over 4-5 months. We have declined his latest request for a spinal tap on my 86 year old and phyisically frail mother. He has not given us any idea of disease progression despite me asking bluntly multiple times. I’ve gotten more information here than from him. All we want to do is enhance my mom’s quality of remaining life while not having to crisis manage everything because we didn’t know what was coming.

However her GP has been brilliant working with the family and was instrumental getting her to accept a move to care. He has also shown a willingness to prescribe medicine to manage her condition/symptoms. Maybe we just got lucky though.
 

canary

Registered User
Feb 25, 2014
16,172
0
South coast
Hello @Yankeeabroad

Most professionals wont commit themselves to a time-line or even an outline of what will happen because it is all so variable. When mum was diagnosed with Alzheimers I asked the doctor how long she had and the doctor (kindly and sympathetically) shrugged and said "how long is a piece of string?" ie any length, you cant tell.

Although there is a lot of similarity between people with dementia, none are exactly the same, even if they have the same type of dementia. You dont know how long a particular phase will last, not all the symptoms will appear in the same order and not everyone gets the same symptoms. My mum developed paranoia and thought I was abusing her, but knew who I was right up to the end. My MIL, on the other hand, was sweet and even tempered yet completely forgot her children and the fact that she had been married quite early on. She retained her mobility until quite advanced stages whereas a friend of mines mother had loss of mobility as a very early sign and was bed bound all the while I knew her (for several years) even though I could hold a reasonable conversation with her. My OH knows what date it is, where he is, who people are and can fool people into thinking that there is nothing wrong with him, yet he cannot remember how to wash himself.

Unfortunately, you cannot be pro-active with dementia. You might spend all your time planning how to deal with a particular problem that never happens and then be blind-sided by something that you had not considered. Make sure that you get legal things like POA and will sorted and any benefits organised, but apart from that you can only deal with things as they arise, Im afraid.
 

imthedaughter

Registered User
Apr 3, 2019
693
0
Do people think that friends drift away from people with dementia more than they do from people with other long term illnesses?
Of course they do. People with dementia often alienate others in the early stages by being eccentric at best and frankly horrible at worst. People with other illnesses may get a bit ratty but generally aren't that different from their former selves.

The reason my brother is estranged from our father is due to dad's behaviour before he was diagnosed. I was not living at home so was spared that, and although I think my brother should try to reflect on it being the disease and not dad.

I had to remind him about that only last week when he told me again about something dad had done when he was unwell.

Unfortunately we remember how people make us feel not matter the cause, and I can understand why people don't want to spend their energy on those who have hurt them, even unintentionally.

Doesn't stop me getting annoyed at my bother for doing literally nothing for dad these past couple of years though!