What do know now that you wish you'd known then?

[Grannie G]

My husband was another who thrived in a care home. He had lost a lot of weight , wasn`t eating well and once housebound, told me he was lonely.

His care home wasn`t smart but it was very homely. There were lots of comings and goings but there was no pressure on him to take part in anything. Staff were just happy to allow him to be an observer.

What I`ve found from experience is trappings don`t matter. A homely atmosphere where the smell is of good dinners rather than deodorants, could be the mark of a very good home.

 

[lemonjuice]

Reading through all these comments I realise that I wish I had not 'struggled' on as long as I did with my mother , as it impacted on my marriage.

I had seen dementia already with 3 relatives so there was little of the practicalities to shock me, but what did shock me was the emotional impact.

Even after 5 and a half years in a NH it's still impacting on me/ husband too. Every time my mother has an emergency (apprx once a month) over the past 2-3 years, I have a couple of weeks of 'not being good to live with', as I await the next phone call. being an only child my mother and I were close.Too close and it's not going away, despite the 'distance'. the 'care aspect is there although it's no longer 'hands on'.

Every time I see my mum 'recover' my heart weeps that she (and I ) will have to endure another emergency. They are often seizures, which must be frightening for her- especially when they shove tubes down her throat to ensure she hasn't aspirated any food. Even a baby is aware of pain and discomfort.
Visiting her relatives we were well aware what the very advanced stage of dementia is like and she cried so often seeing her sister & sister-in-law llike that, saying she'd rather be dead. Yet I am powerless to prevent this continuing for her and even though I try to keep the guilt away, it just creeps creeping back everytime I get that phone call.
Even though my aunt lived for 6 years at the very advanced stage of dementia, as all the information said most sufferers lived around 4-8 years after diagnosis I hoped my aunt was a 'one-off'. However my mother, and theer are several others in her home, are proof that many more people live for many years at the bedbound, just existing stage and i wish there was a way to cope with the emotional stress of that.

I also wish that the information was more accurate about just how horrendous this disease is to stimilate people into really putting money behind finding a cure.

 

[Selinacroft]

Yes I agree - the phase before disgnosis was ways the most difficult and frustrating. Even after a major stroke 3 or 4 years previously the Vasc Dem creeps up unnoticed by all except principal resident carer. The pressure that son/ daughter will "just do.... or answer the question for the PWD creeps and creeps until you are run ragged and no one else notices anything is wrong apart from you. The rest of the family think "getting on a bit" or "just being awkward " or "so and so is tired". Even at the hospital the staff are reluctant to say yes he has dementia. I actualy felt a wave of relief when the diagnosis came in as demnetia rather than "mild cognitive impairment". I felt like going round shouting at every one "told you so".

 

[LadyA]

Just bumping this.

Another thing, that I did know, but it was something that I never really examined closely at the time. Those really tough, hard times when you think you are stuck in a never ending nightmare of exhaustion, struggles with pee, poo , feeding, liquid intake, laundry, rages, infections - they will pass. Inevitably. And there will come a time when you almost wish you could have one more day.

 

[Shedrech]

I do appreciate your last point, LadyA

though I wish I'd known that poor dad was in this for the long haul, so I needed to conserve my energy to be able to cope

I was told pretty firmly by someone who said they had been involved with the care of people with Alzheimer's (turns out they cleaned for a couple) that they had a short life expectancy, so dad would only be around a couple of years at the most - I look back and realise that pronouncements from anyone who makes such statements as 'I know about Alzheimer's' in that tone of voice which is meant to prove their greater experience, is to be sidelined - those who really know, understand that we're all amateurs, even the professionals; only Dementia knows it all, and takes great pleasure in pulling the carpet from under our feet