It's over, mum is free of dementia, and so am I

[Kikki21]

Oh @Marnie63 i’m so sorry to hear about your mum but I also know what a relief & release this must be for you & for your mum that she is at peace & no longer suffering.
You have done so well looking after her at home & now please look after yourself. Sending you big hugs xxx

 

[Jale]

Marnie, so sorry for your loss, sending hugs your way

 

[Rolypoly]

What a lovely person you are to start your new thread by thanking everyone. In return, I would like to say a big thank you to you. You and @Tin have been my go to people for anything incontinence related. So many innovative ideas to refer to in the future.

Your emotions are going to yo-yo so don’t beat yourself up. I expect that you have your organisation head on at the moment with so much to sort, and this may well overrule any emotional feelings (if you see what I mean). Take each minute, hour, day as it comes and go with the flow.

You did an amazing job looking after your mum, I think, no, I know she would be so proud of you. I can so understand the feeling of relief you talked about as I would feel the same. Relief that the pain of dementia has finished for them, relief that the stress of caring has finished, relief that they are now at peace, but also, sadness at the loss of a loved one and missing their presence.

Wishing you love and strength, and sending hugs wrapped up in an order to take care of yourself.

 

[Sam Luvit]

Sorry to hear your news @Marnie63, we too had a month till the funeral, but I needed it to get everything sorted. I couldn’t believe the amount of equipment they took away, looking at it all outside the door, I wanted to tell them to put it back, but I knew it needed to go. It’s a strange feeling

Grief is different for everyone. I cried when Mum died, twice more, then again at the funeral. I’ve been dry eyed since. A friend wouId burst into howling sobs several times a day for months after her dad passed.

I think of mums delight at her new hair cut, just 10 days before her falls, our holidays & her “accidentally” soaking “that” Carer before finally telling her what to do with herself. They all make me smile or laugh. I still talk to her, grumble at the never ending stashes of chocolates & biscuits I find in pockets & drawers, she’s still very much in my life. You may not be hugged or kissed by your mum, but you have good memories to draw on

Take some time for you, watch a sunset, walk in a park, read a book, above all, be kind to yourself

 

[Marnie63]

I'm crying more now, but mainly in the evenings. I don't know why. I wake up, realisation hits, but I feel kind of OK and relaxed. I get on with stuff and then by evening I start mulling things over again and that's when the tears come. I think it will take some time for all the 'dementia memories' to fade, I guess that's only natural. I keep looking at the final pics of mum - the last couple of days in hospital when she no longer opened her eyes. I have taken a couple of her in the chapel of rest and although she looks a bit odd to me (she didn't have such a full face for ages!), it gives me comfort to see her at peace, albeit in a coffin. I wish I had taken a pic of her when I went to view her at the hospital as she looked more normal then. There was a notice on the wall prohibiting pics, but I'm sure I would have got away with it with my mobile. Suspect maybe there was a camera though! In time I will probably just store these on my laptop somewhere and remove them from my phone, but for now I need to see them.

I do dwell a bit on the last few days and my heart still hurts a little at everything mum had to endure and everything I had to witness, but it's still so fresh and raw.

I've done everything I can practically do. I'm just finalising the words for the priest and have put together funeral details on a sheet to send to everyone who is coming. We're up to around 28 confirmed, but I suspect there may be a few more yet to include. I have also just found on line a company that will produce a 'memorial board'. I think you upload pics digitally and they produce the board and mail it to you. This is just what I want as I want to include captions. It will probably look a bit smarter than me pinning photos to a board I don't yet possess, and it isn't too expensive. Considering I will be travelling in what will probably be the most expensive taxi ever on the day (read - the limo following the hearse!), I think the photoboard would be good value.

The second wheelchair was collected today. I cried when the man was loading it on the van - how ridiculous! We didn't use it much, it was the large, padded one they supplied right after mum had her stroke. I think it's because they are taking stuff away that was linked to mum. That's why it hurts a little. I have two more bits to go and that's it. Mum's bedroom is back to how it was before the horrors of dementia arrived in our lives and I am slowly tidying back to the room where I stored everything, which will be the last one to be cleaned and sorted.

Two weeks today since mum died. Four weeks yet to go to the funeral. I have headed off the cousin with small child who wanted to come. She didn't seem offended, but may not be able to come if she cannot arrange childcare. Well, so be it, I don't want an out of control tot spoiling the day. I have another small worry now in the form of the daughter of a friend of mum's. Mum's friend passed some years ago and I went to the funeral. I haven't been in touch with the daughter but I dropped her a note to say mum had died, and she called me. She was hysterical on the phone. I don't know if she was laughing or crying. From the conversation, she is obviously not well, and that's sad, but she has done some odd things in the past which upset a lot of people, so excuse me if my sympathy level is a bit low on that front. I worry she will behave inappropriately at the funeral, if she comes. She knows the date and town but no more details. I am tempted not to share any more and also to prime a few friends with a description, so that if she does come and tries to have any hysterics during the funeral, they escort her out. I could do without this!

I have booked flights to the Far East for New Year and will spend two weeks out there, meeting up with friends who will be there at the same time. This gives me something great to look forward to and will close the year off and start the next one off nicely. I am not thinking further ahead, apart from wondering about an income! I may look for a part time job early next year.

So far, so good. I am distraught that mum has gone, but still glad it's over and that mum is free of illness and dementia.

 

[vanny72]

I'm going to leave my 'dreadful couple of days' thread (it actually ended up being six dreadful days) and skip to here, but realise now that we skipped the 'end of life care' section! Actually we didn't, but it was so brief, only three days in hospital and not all of that was end of life care, though what there was, was excellent.

Firstly, thank you to the Alzheimer's Society, Talking Point, and all the lovely people on it, for helping me get through the dementia experience with my mum. It was long, it was hard, but it would have been considerably harder had I not had the help of kind people on TP, and the occasional support from the helpline. Thank you, thank you, what an excellent place to be when dementia is all around you.

Thank you for everyone's kind words on the other thread where I described mum's final decline and death (on Monday afternoon). I was reading your replies while I was sitting in that lonely side room with mum at the hospital, and although staff kept me fed, watered and hugged, you all helped me in spirit too, particularly when you all paced the corridors with me (!).

I am still waiting for paperwork to register mum's death. I suspect she may have to stay in the hospital until Monday now, which for some reason I find very disappointing. It seems bizarre that only one doctor can sign it, and she's constantly too busy to come down to do it but … It will happen one day and mum will be off round the M25, in a van with the FDs, and then waiting with them until the funeral, which isn't until mid October for several reasons. I will be up and down, visiting the FD, popping in to see her for as long as I can, and trying to find a suitable venue for the wake.

I feel surprisingly unaffected at the moment, and I'm actually quite astonished. I have cried for nearly three years over mum's demise, intensely for three days in hospital when it became clear she was nearing death, and then again when she died, but now I feel, well, lighter, relieved. Relieved that she no longer feels mental anguish or physical pain and, yes, mighty relieved that it's over for me and hopefully before my own heath was seriously affected. But, I feel like it is going to take me a few weeks to get back to my normal self, maybe even longer, I feel shaky, tired, disoriented. Sleep comes at night time, but it's not a calm sleep.

I almost feel guilty that I'm not bawling my eyes out more, but maybe the anticipatory grief went some way to helping me part through the grief process already. I'm sure I will cry loads at the funeral!

I am pleased to be here, I thought I had a few more years of it to go. I'm mighty relieved mum didn't last to end stage and died at a time when she was still talking, eating and wanting to be near me. She died knowing who I was, and what I'd done for her. But most of all I'm pleased I managed to keep her at home, until the very end, or almost. It was good that we were in the hospital as all help was on hand, I don't believe it would have been such a 'good' experience at home.

Bless you all for your kindness and support.

 

[love.dad.but..]

I cried buckets by myself ...to strangers...during dad's illness...his final 2 weeks...the immediate time after ...the funeral...and following months. It eased but then a thought transports you without warning into a sad but comforting memory. Travelling to a local theatre last night I suddenly thought of the period I looked after dad in his home..I would get him ready for bed although he would never stay in bed for long..tuck him in..give him a kiss...before I turned the main light off I would look back to see him blowing me a kiss and making the sign of the cross to me...so tears rolled down my cheeks last night 18 months on from dad's death.

Let the tears come @Marnie63 ...gradually the raw and recent dementia memories will be replaced in part and sometimes by more comforting ones.

 

[vanny72]

oh my..i am very sorry....I have all this to come with my husband...i can't write because of the tears in my eyes...i will get back to you later...what a very painful process it is...i am at the end of my tether..i feel i can't cope, and he is getting aggressive now...

 

[Marnie63]

oh my..i am very sorry....I have all this to come with my husband...i can't write because of the tears in my eyes...i will get back to you later...what a very painful process it is...i am at the end of my tether..i feel i can't cope, and he is getting aggressive now...

Keep posting and reading on this site vanny - it has helped a lot of us through this dreadful illness with our loved ones, and I hope it will help you too.

 

[Sam Luvit]

... Considering I will be travelling in what will probably be the most expensive taxi ever on the day (read - the limo following the hearse!)...

Yes, that is an expensive taxi ride to be sure. The FD wanted £160 for a 10 mile slow drive .... I found another company who ‘only” wanted £80!!!

I too refused a 3 year old attending, not the best behaved child & I didn’t want anything to worry about. Unfortunately the SIL & neice came, but we kept our distance ... families hey

 

[Marnie63]

Hearse is £365, limo £260. Captive audience, eh?! I guess I could have negotiated, but they kind of had the upper hand (mum in their care!). I guess I will only do this once. But my, it's expensive.

 

[Marnie63]

I kept all the paperwork from Dad's funeral, 26 years ago. Here's the comparison (same FD):-

Service charge - then £350, now £1,800
Coffin - then £290, now £520
Hearse and limo - then £150, now £625
Church fee - then £25, now £220
Cemetery fee - then £231, now £450

It seems the cemetery fee is the good deal in all of this!!!

 

[Sam Luvit]

Hearse is £365, limo £260. Captive audience, eh?! I guess I could have negotiated, but they kind of had the upper hand (mum in their care!). I guess I will only do this once. But my, it's expensive.

I sort of had to check prices with dad (couldn’t find the money & I was going to have to pay), I asked a friend, who gave me the number for a company that do funeral cars. The FD cars only carried 3 people, while the other carried 5. The FD was £160, the other £80

We found the money in the end for dads, but I’m paying & then reclaiming for Mum, so I did the same thing.

Excluding the cars for mourners, Mums was £15 less than yours. It’s horrendously expensive. I think I’ll tell my kids to do a direct cremation & just have a wake.

 

[Khashoggi]

You write eloquently and beautifully about a difficult subject. I know I worry too much about all I still have to go through with Mum and that ultimately you just have to deal with everything as it happens.
I have only just started to think about my own future again and started planting a seedling here and there so I have something to focus on after years of being little else than a carer. Maybe there will be some joy in selfish indulgences again; maybe I will have new opportunities from all I have learned as a carer. But it remains hard to think of anything positive when you are overwhelmed by trying to devote your all to your precious relative even when they make your days so difficult.
I hope you find peace in knowing how well you did manage to care and to be there.

 

[Duggies-girl]

I kept all the paperwork from Dad's funeral, 26 years ago. Here's the comparison (same FD):-

Service charge - then £350, now £1,800
Coffin - then £290, now £520
Hearse and limo - then £150, now £625
Church fee - then £25, now £220
Cemetery fee - then £231, now £450

It seems the cemetery fee is the good deal in all of this!!!

Good heavens that is quite a sum, I had no idea.

Mum and dad paid for their funerals probably 20 years ago as he keeps reminding me. I know where the documents are as he has told me but I haven't looked and probably won't.

Ever thoughtful my dad and still is despite his dementia.

 

[Marnie63]

I sort of had to check prices with dad (couldn’t find the money & I was going to have to pay), I asked a friend, who gave me the number for a company that do funeral cars. The FD cars only carried 3 people, while the other carried 5. The FD was £160, the other £80

We found the money in the end for dads, but I’m paying & then reclaiming for Mum, so I did the same thing.

Excluding the cars for mourners, Mums was £15 less than yours. It’s horrendously expensive. I think I’ll tell my kids to do a direct cremation & just have a wake.

I've been told the limo can take six, seven if someone sits next to the driver. I will definitely fill it to get my money's worth! At the mo it's me, a cousin and wife (my nearest family, who HAVE been supportive!) and a good friend who is travelling from overseas to be at the funeral. I have one more friend to ask - someone else who has been there and who I was with, three years ago, when it all kicked off. Two more places to fill!

The total cost will probably come in at around £5k, including the wake, it may just go a little over. I had more in my mind based on what friends have quoted me recently, but one lot forked out for a very elaborate coffin, and I just don't see the point. Mum was not that kind of person, a decent standard coffin for her, nothing over the top. One lady paid a lot for a local venue here for the wake for her husband, but so many people turned up! Many, including me, didn't get a crumb to eat and it cost her a lot! It won't be a huge number for mum, I guess 30ish max, it's mainly my friends as mum was the last one left of her peers.

 

[Marnie63]

You write eloquently and beautifully about a difficult subject. I know I worry too much about all I still have to go through with Mum and that ultimately you just have to deal with everything as it happens.
I have only just started to think about my own future again and started planting a seedling here and there so I have something to focus on after years of being little else than a carer. Maybe there will be some joy in selfish indulgences again; maybe I will have new opportunities from all I have learned as a carer. But it remains hard to think of anything positive when you are overwhelmed by trying to devote your all to your precious relative even when they make your days so difficult.
I hope you find peace in knowing how well you did manage to care and to be there.

Thank you. I think we should be more comfortable with death. It's something we will all have to face and it will happen to all of us. Why avoid the inevitable?! As a child, I went to many funerals and many had an open coffin policy at the church, as that was part of our culture. Now no one does it. I well remember having to file past bodies in coffins, having to touch the coffin as a mark of respect. I have only been present at the death of each of my parents and when my father died of cancer, which rapidly affected him, I felt a great relief as he passed. It could have been the relief of the suffering ending, or maybe there was something spiritual in that instant. It was similar with mum, though with mum I had been prepared for a very long time of course with her dementia.

I'm not suggesting we should all be forced to be with our loved ones when they pass, or be forced to go and view then in the funeral parlour, but maybe if death wasn't still such a taboo topic, then we would not be as scared of it as we sometimes are. Of course I am scared of dying, but I am not scared of being with the dead. Having said that, I am psyching myself up to go and see mum again soon. I expect her appearance will not change too much as she has been embalmed, but as it's still four weeks to the funeral, and two since she died, I will have to be careful nearer the funeral date to not subject myself to a stressful image. Though, again, even if she looks different, it is still the body of my dear mum, and nothing to be afraid of. I know they won't let me see her if she think it will be too upsetting.

I found it such a horrendous time @Khashoggi - dealing with the dementia, dealing with the loss of mobility after the stroke, wondering what each day would bring, no life of my own for three years. But, it's over and your time will come. Hang on in there, but make sure you get all the help you can.

 

[Sam Luvit]

I had the figure if £5k in my mind when planning mums, so I laughed at the bank clerk who said I could give them the bill from the FD & they wouId pay before Probate has been granted. There was barely £3k in the account. She couldn’t understand how that wouId not be enough.

I felt like a bank myself, as I kept handing out cash, but I wanted it personal, so the florist was one Mum liked to go to, they did 2 beautiful but simple bouquets in her favourite flowers & colours, leaving long stems so they could be passed to the hospice afterwards. A friend did all the food, I took her shopping, but she did all the preparation & bought it in the morning, plated up etc. There was a little left over, but everyone found something they could eat (including me)

You could spend a fortune if you wanted to, I certainly felt Mum was pushed towards the most expensive coffin for dad, but I couldn’t afford it, so had to step in. I felt really mean, but when we got home, I was cross at them for trying to take advantage of mums vulnerability.

We shy away from talking about death, yet we can’t avoid it, as you say, it comes to us all. People find it hard to know what to say, so say nothing. It’s that saying nothing that hurts

I remember going to a friend & saying “I’m sorry, I just don’t know what to say”. Her reply taught me everything. “There is nothing you can say, but saying something is saying everything”

 

[Marnie63]

I smiled a little when the post arrived today - a sympathy card from the funeral directors! There was no pressure when I was at the FDs about what to choose, but I suspect the costs are fixed. I usually do negotiate or ask for a better deal when I'm buying something big, I have no idea why I didn't over something so expensive. Maybe it didn't seem right at the time! I guess if you consider all the staff involved, premises, etc then it must cost to run such a business, but it is a horrendously expensive cost to the individual, and I wonder what happens when someone doesn't have a few thousand for a funeral. It really is quite shocking that death is so expensive. I'm still intrigued by the £100 quoted for the obituary in the local paper. I must go on line and see if it really does cost that much. Seems a lot.

The cards people have sent me have really helped. Some have written such wonderful words.

A neighbour has invited me round for a dinner party on Saturday night, with some other neighbours. I will go. It's not far to come back if I find it too much, but I think it's probably better that I keep mixing with people rather than staying in too much. Today was a sorting day. I threw out some ancient clothes of mum's that are no good for even the charity shop. I haven't touched the ones in her main wardrobe yet. Too soon, too heartbreaking. I found 50p in one of the coat pockets!!!

 

[Sam Luvit]

The prices seemed pretty much fixed for us, the coffin was very variable, we went for simple. The wicker one was definately not simply priced, so mums comments on that being “cheap n cheerful” were not quite right

I looked at obituary costs, but decided that if people had walked away 3 years ago, then they could keep right on walking. I phoned everyone else. I do remember thinking ..” you can place a personal ad for less”

I’ve been clearing the office. Trying to make it back into a bedroom. Who knew I had sooooo much stationary