In 'mourning' for dementia sufferer

That would have been a very difficult and upsetting experience for you Franbern, I'm so sorry.

I'm sure she did enjoy herself, it's just such a shame that you were too stressed and worried to enjoy it too. Dementia is a cruel illness. We lose those we love while they're still here with us physically.

You wont be able to have her to stay but despite the geographical distance, you'll hopefully be able to go and visit her.

I’m so very sorry, Fran. It must be very distressing for you to see how much she has deteriorated. A hug and a hand hold from me. It’s good that your friend enjoyed her stay, thanks to you, and was able to speak about old times. You did very well but obviously it’s been a very shocking experience for you. It really is the long goodbye isn’t it? Look after yourself and comfort yourself with the knowledge that you have been a very good friend. ?

It’s very sadisn’t it? I helped look after a friend with Alzheimer’s and over the 13 or so years she suffered through it, she became a shadow of her former self. It went from forgetfulness of where she was or what she was doing, then we’d crack up laughing if one of us said ‘ More tea vicar’ to someone who would take my hand to stroke her face, then bite me.
Towards the end, she became incontinent, silent and it took all day for her DH and full time carers to get her to eat anything. When at 68 she died in November’19, we were relieved her suffering was over and agreed we’d lost the real M years earlier.
It’s very sad. I think you’re probably in mourning already and wondering if you’ll ever see her again and if so, will she even recognize you? Her family will need as much if not more support than her as that awful illness progresses.

I know why it’s called the ‘long goodbye’. As well as losing your friend as you knew her, you’re also mourning the loss of your future together. I hope the reminiscing about times past brings some comfort to you, and her.

Sympathies, Franbern - it’s so hard to deal with, until you learn to accept the painful realities. And even then it’s still upsetting.

Your mention of typing out the sheet of timings, really resonated with me. When we first had FiL to live with us we blithely thought that a nice large print sheet, with answers to the same questions he was constantly asking - would be the answer. We even laminated it!

Talk about learning the hard way! We soon learned that he would forget whatever it said (even if he’d taken it in in the first place) the instant he’d turned his eyes away.

There was something similar later with my mother. If I ever tried to take her out, she’d be in a panic half a mile down the road, about gas left on, windows left open, doors unlocked, etc.

So although I should have known better by then, I wrote out checklists with places for both of us to tick off everything we’d checked together.

She then had one of these on her lap in the car. Once only! Of course it made not the slightest difference - she was in a panic as usual halfway down the road, and I had to take her back.

How I feel for you! One of my sisters in law is struggling more and more with mixed dementia. We are married to brothers and neither of us has a sister. We were friends from the start and saw each other as sisters.

I help as much as I can (from a distance) but her illness has hit me harder that my mum's condition ever did.

It is ironic that I volunteer with Carer's of people living with dementia - it doesn't help.

I totally understand what you're saying. After losing my mother to Alzheimers, I have always said that in effect, with dementia, you lose the person twice. Firstly, as the disease slowly erodes what made that person 'them', and then again when they eventually do pass away. It is such a cruel disease, and one which is very hard on families and friends.

I remember that feeling when we had my mum to stay from the NW- we live in the SE- Christmas 2018. That was the last time she came here- so distressing for her as she couldn’t remember where to go to come to the kitchen, dining room etc, equally distressing for the rest of us to see her anxiety mount and not really know where she was or be able to help.
The next Christmas we went to stay at her house to give my brother a break- so sad as she didn’t even know it was Christmas.
I went up north roughly every 6 weeks ( school holidays, I was a teacher) first diagnosed in 2014- gradually deteriorated until she died last November- and you do lose them twice.
A cruel, awful disease and my thoughts go out to OP and anyone else caring for loved ones or living with it themselves.

Thankfully my mother died while at the beginning of her slide into dementia so didn’t suffer the indignity that so many do.

If I am given the diagnosis of dementia I will move to clear up any loose ends and plan my escape. Usually it is a slowish decline, if it is sudden and catastrophic then I trust my OH to help me on my way as much as he is able to without leaving himself open to prosecution.

We are of like mind Espee.

I do understand fran, my love to you and everyone in a similar position.

We’ve been 250 miles across the country to support a visit to my lifelong friend currently in hospital with a physical issue and also encumbered by dementia. Like kitty we try to support from a distance, her daughter is her carer. We grew up as sisters, both onlies. I’m trying to come to terms that yesterday was probably the last time I’ll see my friend. The distance is just too great now.

On Sunday our friend just wasn’t in the same room as us. Luckily there was connection yesterday, she was happy to see us and we could chat for a while. I’m saddened that today the visit will have been forgotten but won’t let that cloud the enjoyable moments we had yesterday.

It is indeed an illness that leaves us mourning a person while they are still in the world. It’s a heavy feeling today. A hug for all in that situation.

My friends Dad was diagnosed with terminal cancer not long after his Alzheimer’s began to get worse. The family decided to leave the cancer untreated, he was never in any pain - so that’s what was his CoD.

Me too Espee and Germanshepherdsmum, I can’t bear the thought of the indignity and the pain for my family even if I wasn’t aware of it.
Having lost my mother and younger sister to this awful disease, I do fear it.
My sympathy Franbern you’ve been a good and thoughtful friend, very sad.

Germanshepherdsmum

We are of like mind Espee.

As am I. Had I been able to end my mother's suffering in a legal and dignified way, then I would have done so without hesitation. Years before, she had helped to care for an elderly neighbour with dementia and told me then "If I ever get like that, take me down to the bottom of the garden and shoot me". Well, I could hardly do that, but it made it all the harder watching her long slow decline and eventual death.

I have been so fortunate that both my parents never had any mental issues at all. My mother was very frail physically in many ways, but quite literally upto the hour of her death in hospital was chatting to my Dad and commenting, very sensibly, on the latest news on TV. She was 80 years of age not bad as when she was born her parent were told she had a heart issue and would not live long!!

My Dad actually walked into the local A&E as he was getting increasingly breathless (aged 84 year), and sadly had a fall there which resulted in his death. He had lived by himself since my Mums Death, and his flat was a neat a new pin, everything in the correct place.

I do know that my SiLaw's mother suffered from this disease, I also know there is a definite genetic link, but I am still shocked as to how bad she was. We did manage to chat. sadly I know that by now (five hours since she left), she is unlikely to have any memories, good or bad, of this visit.

My eldest daughter (a highly qualified mental health NHS professional), is going to telephone me tonight to talk me through how I feel.

I am filled with total admiration of any of you who have coped with living and supporting a relative with this dreadful disease. I do not think I could do it.

I know exactly what you mean. My OH was demented and paranoid for a long time before he died. Not only did I lose my man long before he died, but I had to live with this mad stranger - it was hell. I did not have time to mourn - I was too busy keeping myself safe and making sure we got the necessary help to survive.

My heart goes out to you Franbern for your loss of a good friend, it is the cruellest of conditions.
My Mum died 10 years after diagnosis, she was gone from me in that first year.
If plan A doesn’t work, should we be so so unlucky, MrJ has said he will do time for helping me and I for him.

I read through and then realised you were the poster Franbern. I'm so very sorry, big hugs. Did you take any photos of your trips? My friend said her Mum occasionally had lucid moments with the photo album.

My aunt on the IOW is trying to deal with the phone calls from her friend who was diagnosed during lockdown - she keeps phoning her at night, asking why the morning is so dark. It's a very cruel disease.

It's very distressing, Franbern, as I know, and I feel for you and how distressed you must be at seeing your sister-in-law like this, knowing that you are losing the person you knew.

I don't know how able her DH is but it will be a strain on him, caring for her and she may need full-time care at some point.
My relative's decline has been very rapid and, although she seems happy, she was a very clever and capable woman and would be horrified if she had been able to see the future.

My niece died from frontotemporal dementia (Pick’s disease). She was only 40. She had to be in residential care because she could become violent and threatening. It was very sad.

It is a cruel disease, it steals everything away. Hope you can go to visit your sister in law at her home instead which will probably be be easier for her as it will be more familiar.
I found that most of my mums friends dropped away after she was diagnosed and I really appreciated the few who continued to keep in touch.
Greenfinch that is so very sad. The change in character is one of the hardest things to deal with, but it’s just one part of what is the long goodbye.

Franbern, I hope your brother in law is accessing all the help avaable to him. AgeUk and the Alzheimer's Society are very good.

We say that people with a diagnosis are living with dementia- I think their families are often the sufferers.

Like Luckygirl it was my husband I lost.
We were married 60 years and he was diagnosed about 5 years but the difficult times , when reviewed with hindsight, start long before that.
I came to resent looking after a complete stranger and dreadful as that sounds it is true.
I was so thankful he died a year before Covid, he would never have coped and neither would I.
He died from cancer, it was a blessing.

It’s the long goodbye and it’s almost a release when they go. Because the person you knew didn’t exist anymore.