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

Marnie63

Registered User
Dec 26, 2015
1,628
Hampshire
Nearly four weeks down, and just over two to go to the funeral. In a way, time has passed quickly, but I really want the next two weeks to flash by, get the funeral done, and then that (big) part will be over. I feel so bad that mum is 'being left' for so long, but I am sure she would have been OK with me waiting for the right people and arrangements so that everything is how I want it to be.

I still find evenings, and increasingly, night times hardest. I have put together a lovely photo board to put up at the wake. It gives a nice pictorial summary of mum's life. Some of the photos made me weep of course, but as I looked at it, it clearly showed what a good and happy life my mum had, so that is a big thing to hold in my head (and heart).

I am still not one hundred per cent happy with the FDs, though I have had many assurances now. They have as yet not responded to my formal complaint, but I have been assured they will. Maybe they are waiting until the funeral is over (in case something else happens!). I have just read through their contract and they freely quote things like "professional manner" and "sensitive and dignified service". They also state that their code of practice requires that they provide "a high quality service in all aspects". None of this totally ties up with my experience so far. It seems there is another body (excuse the pun) I could take the complaint to, but I really hope it doesn't come to that. I wonder if this is the 'dementia demon' having one last go at me before this chapter is finally over. Sometimes it feels that way. Could have done without this.

On a positive front, I'm able to go out, meet friends, pop to the supermarket when I want to and catch up on getting the house in order. I've even applied for a job. So there's plenty to keep me occupied … until there's another evening and night time to contend with. I am sure this is normal grief, and I hope in time I will feel better.
 

Sam Luvit

Registered User
Oct 19, 2016
5,663
East Sussex
Hi @Marnie63

I too figured Mum would understand waiting, so her beloved neice could attend & the priest she bonded with so well could lead the service. Those last 10 days, when everything was as done as I could get it, those I wanted to hurry up, up till then I was begging time to slow as I felt I’d never get it all to come together.

I know it’s difficult, but try not to think about the complaint. Tell yourself you will deal with it after (fix a date in your mind 2 weeks after the funeral) & push those thoughts away. This time is about remembering your mum, the smiles, the things that made her laugh, those moments of tenderness.

It’s nearly 2 months for me & I'm starting to sleep through the night, only waking briefly at “bathroom” times. It does get easier, as you find a new routine for you
 

Marnie63

Registered User
Dec 26, 2015
1,628
Hampshire
Thanks @Sam Luvit. I know a lot of this is basic grief and this I cannot control, which is the complete opposite of the complete control I had over mum's life and care! Similarly with the time to wait and, to some extent, the FD issues. I suspect the FDs are easing off until after they have conducted the funeral, rather than causing more angst now, or at least I hope that's the case. There is one individual at the FD who is very professional and caring and has somewhat redeemed the whole company for it. But, I am trying, as you suggest, to push this issue aside, though it's hard when mum is now in their complete care :(

I have a friend coming from overseas the week before the funeral so will have company in the days leading up to and on the day. Most of the people on my 'to tell' list seem to be coming, which is good, apart from the hotel buffet cost! I will only do this once though, so stuff the cost, mum would have wanted people to go away feeling full, rather than hungry.

Its a difficult time, and because I've been so used to just getting on with it, and having no time for anything, it's a hard adjustment to the new 'time for everything now' mode and no structure to my days. But time is the key, and it will get better, I know. I am sad, but also glad mum is at total peace and out of the clutches of dementia. I'd love to have her back, somehow, but never with dementia.
 

Sam Luvit

Registered User
Oct 19, 2016
5,663
East Sussex
I felt very adrift, IYKWIM, I could get up early or late, it didn’t cause any issues. I could stop & chat with people as I walked Pooch without having to hurry home. It’s a very strange feeling to not have to rush. It’s taken me a while to stop rushing round. While it’s nice, it’s also sad @Marnie63

I suspect the FD is leaving the unpleasantness till after the funeral. Much as you want a resolution, you don’t need the angst that goes with that right now.

It’s good you have someone coming to stay, it’s something to look forward to, as well as someone to lean on. Don't forget to get a doggy bag for the left overs to feed you for the next week :D I’d rather have too much than too little, Mum always overdid servings, thankfully J did mine & got it pretty much on point

I think having so much time after having almost none, is the hardest thing to get used to. I’ve found I really appreciate it though. I take Pooch for a long walk on the seafront & refuse to look at my watch until we are heading home. I just walk till it feels like enough. It’s strange though o_O

People are shocked when I say I’m sad she’s gone, but I’m not unhappy as she’s not in pain now. It was her being in such pain that killed me
 

MaNaAk

Registered User
Jun 19, 2016
1,589
Essex
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.
Dear Marnie,

I'm sorry to hear about your lovely mum. I think the reason why you haven't shed so many tears is because your bereavement started when your mum's illness began. I suggest you take each day one at a time and keep coming on here to let us know how you're getting on.

God bless you and a million hugs

MaNaAk
 

Jesskle66

Registered User
Jul 5, 2014
99
Hi Marnie,

So sorry to hear about your mum. I’ve moved over to this board as my mum died last Saturday morning. I share some of what you are going through. I was extremely close to my mum until the last 4 years and always imagined I would be unable to get out of bed in the mornings when she died. I have violent bouts of tearfulness, maybe a couple of times a day, but the rest of the time am ‘OK’. I think I felt like I lost mum in some ways to dementia 4 years ago. We went from a very loving relationship to something unrecognisable. She was in hospital for nearly a year then was in a nursing home.
I did burst out crying in the shops yesterday when I saw something I thought mum would like then realised I would never buy anything for her ever again. It’s the gone forever bit I’m struggling with. I think our mum’s funerals will be relatively close together as we are having her’s the first opening they had.
 

MaNaAk

Registered User
Jun 19, 2016
1,589
Essex
Hi Marnie,

So sorry to hear about your mum. I’ve moved over to this board as my mum died last Saturday morning. I share some of what you are going through. I was extremely close to my mum until the last 4 years and always imagined I would be unable to get out of bed in the mornings when she died. I have violent bouts of tearfulness, maybe a couple of times a day, but the rest of the time am ‘OK’. I think I felt like I lost mum in some ways to dementia 4 years ago. We went from a very loving relationship to something unrecognisable. She was in hospital for nearly a year then was in a nursing home.
I did burst out crying in the shops yesterday when I saw something I thought mum would like then realised I would never buy anything for her ever again. It’s the gone forever bit I’m struggling with. I think our mum’s funerals will be relatively close together as we are having her’s the first opening they had.
Dear Jesskle,

I'm sorry to hear about your mum as well and I hope that when the day of the funeral arrives all goes well.

Love and hugs

MaNaAk
 

Marcelle123

Registered User
Nov 9, 2015
4,546
Yorkshire
Hi Marnie,

So sorry to hear about your mum. I’ve moved over to this board as my mum died last Saturday morning. I share some of what you are going through. I was extremely close to my mum until the last 4 years and always imagined I would be unable to get out of bed in the mornings when she died. I have violent bouts of tearfulness, maybe a couple of times a day, but the rest of the time am ‘OK’. I think I felt like I lost mum in some ways to dementia 4 years ago. We went from a very loving relationship to something unrecognisable. She was in hospital for nearly a year then was in a nursing home.
I did burst out crying in the shops yesterday when I saw something I thought mum would like then realised I would never buy anything for her ever again. It’s the gone forever bit I’m struggling with. I think our mum’s funerals will be relatively close together as we are having her’s the first opening they had.

Jesskie, I am so sorry to hear about your mother. I understand and share that 'gone forever' sadness. Wishing you strength and solace, and hoping the funeral will go well. Love, Marcelle xx
 

Marnie63

Registered User
Dec 26, 2015
1,628
Hampshire
Hi Marnie,

So sorry to hear about your mum. I’ve moved over to this board as my mum died last Saturday morning. I share some of what you are going through. I was extremely close to my mum until the last 4 years and always imagined I would be unable to get out of bed in the mornings when she died. I have violent bouts of tearfulness, maybe a couple of times a day, but the rest of the time am ‘OK’. I think I felt like I lost mum in some ways to dementia 4 years ago. We went from a very loving relationship to something unrecognisable. She was in hospital for nearly a year then was in a nursing home.
I did burst out crying in the shops yesterday when I saw something I thought mum would like then realised I would never buy anything for her ever again. It’s the gone forever bit I’m struggling with. I think our mum’s funerals will be relatively close together as we are having her’s the first opening they had.
Sorry to hear about your mum Jesskle66. It's hard, isn't it? My mum's is on the 15th, I think the waiting around for so long is adding to my discomfort. I find some evenings I get so sad and upset I don't know what to do with myself, but tonight I'm OK. I guess it will all get easier in time, I hope.
 

Marnie63

Registered User
Dec 26, 2015
1,628
Hampshire
Dear Marnie,

I'm sorry to hear about your lovely mum. I think the reason why you haven't shed so many tears is because your bereavement started when your mum's illness began. I suggest you take each day one at a time and keep coming on here to let us know how you're getting on.

God bless you and a million hugs

MaNaAk
Thanks MaNaAk. I went out for a very long walk today, which I think helped. It was also in a nice area, with a nice group of people. I just feel so sad about how it all ended, even though I was praying for it to be over, for both our sakes. I guess I would have felt sad however it had ended. I didn't get the ideal of her passing in her sleep, and I guess any death isn't pleasant. It sometimes feels like I'm still trying to process what on earth happened to our lives over the past three years. It was truly horrendous. I agree that I probably started to grieve three years ago when it all started, but at the moment I worry about all the thoughts that flash through my head of everything mum and I had to endure because of dementia. I really hope they fade in time.
 

Onmyown

Registered User
May 30, 2017
385
So sorry for your loss. But happy its over for you both. I'd love to send you a big cheque to go away to a paradise island and just breath but unfortunately a big hug will have to do! Its all about you now your health and your life and I wish you nothing but peace and happiness in the future. Fellow earth angel
 

Marnie63

Registered User
Dec 26, 2015
1,628
Hampshire
So sorry for your loss. But happy its over for you both. I'd love to send you a big cheque to go away to a paradise island and just breath but unfortunately a big hug will have to do! Its all about you now your health and your life and I wish you nothing but peace and happiness in the future. Fellow earth angel
Thanks Onmyown. Don't worry about the cheque - look after yourself! I'm already planning to go away to be with a close friend for Christmas, and two days after I get back am off on a bigger 'holiday' to be away for New Year and stay longer. I say 'holiday', that's not really the right word. I see it more as recuperation. I definitely need nice things to look forward to and to physically get on a plane and go far away from where dementia happened to us. I just hope it makes me feel a bit better once I have to return to the house! I never let go of my future plans and dreams through the three years that mum and I suffered this illness together. I think if I had, I would have well and truly gone down some dark pit that I would never have been able to crawl out of.

Best wishes.
 

LadyA

Registered User
Oct 19, 2009
13,562
Ireland
Thanks Onmyown. Don't worry about the cheque - look after yourself! I'm already planning to go away to be with a close friend for Christmas, and two days after I get back am off on a bigger 'holiday' to be away for New Year and stay longer. I say 'holiday', that's not really the right word. I see it more as recuperation. I definitely need nice things to look forward to and to physically get on a plane and go far away from where dementia happened to us. I just hope it makes me feel a bit better once I have to return to the house! I never let go of my future plans and dreams through the three years that mum and I suffered this illness together. I think if I had, I would have well and truly gone down some dark pit that I would never have been able to crawl out of.

Best wishes.
Marnie, one thing my mum did when dad died (leukaemia) at home was she got decorators in almost straight away, and had the house redecorated from top to bottom. She said it helped remove some of the bad memories of dad being so very ill in the house, which even the removal of the equipment couldn't. I did the same here, but I couldn't afford decorators, so did it myself, bit by bit! I just had one room professionally done, the living room.
 

Marnie63

Registered User
Dec 26, 2015
1,628
Hampshire
Marnie, one thing my mum did when dad died (leukaemia) at home was she got decorators in almost straight away, and had the house redecorated from top to bottom. She said it helped remove some of the bad memories of dad being so very ill in the house, which even the removal of the equipment couldn't. I did the same here, but I couldn't afford decorators, so did it myself, bit by bit! I just had one room professionally done, the living room.
That's a good idea @LadyA. I've already started to some degree. I need to refresh walls and paintwork around the house, but I will do it room by room. I like decorating so will tackle things myself, apart perhaps from ceilings, which are hard! But maybe I'll have a go at that too. I don't need any furniture, in fact I've probably got too much, but one thing I may do is rearrange some of the rooms or move things around the house. It will also give me something to do!

I just went to see the doc and before we discussed my issue, we had a chat about mum. He was very nice and somehow put things into a good perspective, which has helped, for a while anyway!
 

LadyA

Registered User
Oct 19, 2009
13,562
Ireland
That's a good idea @LadyA. I like decorating so will tackle things myself, apart perhaps from ceilings, which are hard! But maybe I'll have a go at that too.
A roller on a long pole and "magic white" paint, which goes on either pink or blue and dries brilliant white, makes ceilings much easier! And, something I discovered at my last lot of decorating, you can get a "cutting in" brush for doing edges of walls and ceilings etc. I don't know what's different about it, it looks like a regular paintbrush. But it really does make it so much easier to do the edges without mistakes and without taping everything everything off! And maybe some nice new cushion covers would refresh the furniture. :)
 

AliceA

Registered User
May 27, 2016
2,644
A roller on a long pole and "magic white" paint, which goes on either pink or blue and dries brilliant white, makes ceilings much easier! And, something I discovered at my last lot of decorating, you can get a "cutting in" brush for doing edges of walls and ceilings etc. I don't know what's different about it, it looks like a regular paintbrush. But it really does make it so much easier to do the edges without mistakes and without taping everything everything off! And maybe some nice new cushion covers would refresh the furniture. :)
The paint sounds a great idea. Painting white on white is a nightmare. One friend made a point of moving the the chairs as the first thing she did, that small gesture made all the difference. It is such a painful time.
 

MaNaAk

Registered User
Jun 19, 2016
1,589
Essex
Thanks MaNaAk. I went out for a very long walk today, which I think helped. It was also in a nice area, with a nice group of people. I just feel so sad about how it all ended, even though I was praying for it to be over, for both our sakes. I guess I would have felt sad however it had ended. I didn't get the ideal of her passing in her sleep, and I guess any death isn't pleasant. It sometimes feels like I'm still trying to process what on earth happened to our lives over the past three years. It was truly horrendous. I agree that I probably started to grieve three years ago when it all started, but at the moment I worry about all the thoughts that flash through my head of everything mum and I had to endure because of dementia. I really hope they fade in time.
Dear Marnie,

I hope that in time you start to feel better but at the moment you need to think that your mum is now at rest although I suspect you are probably feeling numb.

My thoughts and hugs are with you

MaNaAk
 

Marnie63

Registered User
Dec 26, 2015
1,628
Hampshire
A roller on a long pole and "magic white" paint, which goes on either pink or blue and dries brilliant white, makes ceilings much easier! And, something I discovered at my last lot of decorating, you can get a "cutting in" brush for doing edges of walls and ceilings etc. I don't know what's different about it, it looks like a regular paintbrush. But it really does make it so much easier to do the edges without mistakes and without taping everything everything off! And maybe some nice new cushion covers would refresh the furniture. :)
I'm so out of touch with the world I didn't realise such a paint existed. I was talking to someone on the phone the other day and asked if they still had a credit card fee, was told this is now illegal - that had passed me by too! I will definitely buy decent brushes as it's most certainly a false economy to go for a cheap one that sheds bristle. I think my first project will be the lounge. My poor wooden floor (lounge and a large area of hallway) suffered from equipment drag and scratch. It's not too bad, but I've thought about getting someone in to sort out the scratches and then 'resurface' it with something to protect it. I suspect this will be expensive though. The other idea is to buy some new, large rugs! Actually the worst scratch was my fault when I dragged an armchair and didn't realise it had a sharp bit on one corner!
 

Marnie63

Registered User
Dec 26, 2015
1,628
Hampshire
The paint sounds a great idea. Painting white on white is a nightmare. One friend made a point of moving the the chairs as the first thing she did, that small gesture made all the difference. It is such a painful time.
All the equipment has gone, so that is one big job out of the way. Mum's rollator and frame, which we bought, is still in one of the side rooms so I will have to store them up in the garage loft. Not sure what I'll do with them, hopefully I won't need such things for a long time! I feel attached to the rollator as mum used it for many years. Daft, but true. The bath chair/lift is stored in a wardrobe. Mum couldn't use it for ages anyway, but we kept it in the bath and used it as a table to store the wash bowls on. I am keeping that as a friend may take it for her mother (who is in her 80s and clearly developing some cognitive issues).

Moving furniture around is a good idea. I have a large area of hallway that I may turn into a dining area. I will of course need a smart new table and chairs! The current dining room will become a study/book/paperwork storage area and the small bedroom upstairs will be rearranged to become a proper single bedroom.
 

Marnie63

Registered User
Dec 26, 2015
1,628
Hampshire
Dear Marnie,

I hope that in time you start to feel better but at the moment you need to think that your mum is now at rest although I suspect you are probably feeling numb.

My thoughts and hugs are with you

MaNaAk
Thank you. Yes, it's all still a bit too recent, and the funeral is still just under two weeks away. Once that has happened hopefully I can start to settle a bit better.