In 'mourning' for dementia sufferer

Ah bless you. Sounds like you always knew it but then were actually confronted with the shocking reality. It’s very similar to a bereavement, stages of grief etc and you’re probably still in shock. You will come to terms but will probably always retain a lingering sadness and sense of loss for your friendship. Thing is, you don’t know what your friend understands, same as everyone else, so it’s important to maintain the relationship however it may have changed. I suspect it will bring comfort to you both. Take care x

As with so many others, I have been through something similar. I would say, do let yourself mourn your lovely S-i-L. If you visit her again, take photos and mementoes of past times, but do not put yourself through hosting again.

I became so wrapped up in the strange person that my mother became that I lost sight of her real self. I can still remember when I got the phone call to say she had died. I thought to myself 'no rush' and I dressed carefully in her favourite colours and put on my make-up to bid her farewell. As I drove, through the early morning, an old folk song, one of her favourites, came on the radio. I pulled over to cry properly, finally mourning my lively musical mum, and not the shell she had been.

annsixty

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.

I am sure I could have come to resent looking after the Bodach, as he had become very aggressive and nasty, but only to me.
(Well, except for the people involved in the treatment of his cancer, as he refused to have anything to do with them) He was in hospital for his last few days, receiving excellent palliative care.
It was only one year from the onset of ‘forgetfulness’ until he died, so my heart goes out to those who cope with their loved ones for years.
They are better people than I am, I’m sure.

My heart goes out to you very much this illness destroys a person and those around them. My mum developed dementia after a violent attack at the age of 89 I can’t go into the detail. She had been in a hospital ward to recover for months until her care package was decided.
She had flashbacks of the incident but kept it to herself, there was an obvious reason at the time. Mentally it destroyed her by then the illness had crept in. She went home care package in order but she was moved to a local care home as she needed 24 hour assistance. My mum died in hospital with pneumonia and lung cancer two years later it was a relief as the dementia took her away.
If you visit your friend hold her hand and smile you have been good to her. You feel she has gone now but you will have your fond memories forever.

This is such a tragic illness - even more tragic (I feel) for family and friends of the sufferer.
My (Mental Health) daughter had a long phone chat with me last night. She had expressed her concern about this visit beforehand, so was not surprised at my reaction. I had previously had this sil to stay a year ago, and I really had not realised how much worse it had got over that time.

She also told me a book about a neurologist who was diagnosed with early onset dementia. Obviously she knew what was going to happen and tried to make appropriate arrangements.

Her final one was a letter addressed to herself in which three simple questions were asked and at the bottom if the answers were not know then to take the enclosed pills. Letter put away safely where it would be found. It was her way of ensuring that she would be taking her own life eventually.

So the dreadful progress happened and when she found this letter, she did not even realise it was addressed to her, actually showed it to one of her carers saying how she had somehow found this letter addressed to someone she did not know.

My BiL is himself not very well (physical), having tests for prostate cancer. They moved away from London where they had always lived and where their family still lives, some five years back as part of their retirement plan. He (they) are in the process of moving back to London, if only the solicitors would get a move on. It is important that he has support as I really think it is not long off the point where he will no longer be able to properly care for her.

I really do admire all of you who have taken on care for these patients.

It is very hard. Been through this with my hugely intelligent MIL, then lately 2 sister- in-law, and now our favourite bil, with whom we have had such fun times and great holidays together, has been diagnosed, and our sil is so scared and worried about the future. And quite a few good friends too.

The reason why we have made our decision that we will not allow this to happen to us, if, and when.

I’m so sorry, Maw. That must be very hard. ?

A fraught subject.
I had an email from my brother late last night to say my sister who suffers from Dementia - I think Alzheimer’s, but he has been unclear in the past - has yesterday been admitted to residential care .
Yes I mourn my last link with our childhood and the memories of life at home with our parents.

If I were alone, just before doing it I would post a letter to my local police. Sorry to be grim - but practical.

If I am given the diagnosis of dementia I will move to clear up any loose ends and plan my escape

I feel much the same. One of the blessings in living alone. You dont have to involve anyone else.

Greenfinch

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.

How frightening for all of your family. Your poor niece.

My Mum died with Alzheimer's at 86. She'd gone very docile with it (quite out of character!) so my Dad was able to care for her at home. They finally agreed to carers to help but should have had them much sooner, Dad was exhausted. We did what we could but we were over three hours away.
Mum became seriously dehydrated through not eating or drinking. Fortunately she had a sensible GP who agreed with Dad's request to keep her at home, rather than admit her to hospital, and let nature take its course over the next few days.

Dad moved to our home town later that year to live in an extra care apartment. He's recently been diagnosed with vascular dementia but thankfully he's well placed for support from a great team. Here we go again ?

It seems so unfair, SueDonim.

We really need to fund better care in this country.

I’ve just lost one of my oldest and dearest friends. She only developed Alzheimer’s a couple of years ago and it took her very quickly. A blessing in some ways I suppose. Because of covid I hadn’t seen her for several years. I knew she had dementia a couple of years ago as she sent me a Christmas card with a strange message in it. She stopped phoning me and I was scared to phone her. I’m terrified of getting it myself.

That’s good they were able to manage the situation, Callistemon. Our friend is less volatile now but only with the help of drugs. He was a physically huge guy, although somewhat diminished now, and his wife has a heart condition so home care just wasn’t feasible or safe any longer.

Of course, she exchanged physical concerns for money worries, given the huge cost of residential care. She’s now living on less than half their previous income and I can’t see how she’ll manage financially over the winter months with energy bills.

Our friend is like that that, SueDonim, but the violence is under control now. His lovely wife still cares for him at home with respite care sometimes.
We remember him as he was and his wit, his care for others.
It is heartbreaking and how she remains cheerful I do not know.

Much sympathy, Franbern. It’s a wicked illness.

The husband of our closest friends has had dementia for a number of years now, the last four of which he’s been in care. For quite a while he was at home and he was still himself within the illness, (iykwim) but I think when he lost the ability of insight, it all changed. He became violent, which was so out of character, and it led to him being taken into care.

Now, he’s simply a shell of a person. He’s incontinent, cannot speak, cannot do anything for himself, does not recognise anyone, shows no pleasure or other emotion. He’d be horrified if he could see himself. His wife, who visits twice weekly, says she doesn’t know why they’re keeping him alive, it’s pointless, undignified and cruel to all parties.

Yes, I so empathise. I've just returned from a trip to visit my best friend of 63 lovely years. She is also suffering from a debilitating disease which is a heartbreak to observe. I kept my pekker up as best I could in her presence but, gosh, it's a crippling experience. Franbern, ?

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

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.

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.

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.

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'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.

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.

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.