Still lost!

[Carabosse]

Yes its one of the many things that are bothering me, when I saw mum in her coffin I noticed little beads of sweat except she wasn't sweating (obviously), I did ask them and they said it was a glycerine based face cream. I did touch mum (I didn't with dad as he had a PM) and thought how cold she was and that they could put a blanket on her!

Did you ever find the beads, maybe you could wear them if you did? Mum had an Oscar de la Renta watch that she never got around to wearing I'm going to get a link removed so I can wear it, I'm using her numerous Oscar de la Renta perfumes as well, she would only wear his perfume I hunted high and low for many of them, some coming from the States, the last one she never saw I bought it for Christmas and thought she could get it when she came home but she never did.

Yes, I'm a Sagittarius as well.

I would like to go for walks in the country, the proverbial orchard and what not, but I can't and no amount of drugs will allow me to do that, full gas mask or something similar might, lol. I somehow think when I see a counsellor I will be in floods of tears so i'll need a mound of hankies or box of tissues.

The bronze ones were mums favourites of the chrysanthemums or at least I think they were, they are mine. I have quite a few seeds for flowers to sow this year, majority are to encourage butterflies and bees. In saying that we have a hedge out the front growing along the wall and its covered in orange blossom and there are many bees there, the flowers will produce blue berries for the birds in winter. I'll have to take a picture and post it on here, might take a while though.

 

[lexy]

Hello Carabosse

When you see the counsellor, and hopefully that will be soon you will be able to tell them all the things that are bothering you, they will understand and will have their own supply of tissues I expect!

My mum felt cold when she was in the Chapel of Rest, my mum always felt the cold and I remember thinking that I hoped she was not in there too long.

No, I never did find the beads and it has always bothered me. There always seem to be little things that "nag away" at you when someone you love dies, I still have my "why did I not do this" and "why did I not do that" days and it gets on my nerves, even now. I'm not saying I would want to live through the nightmare of my dear mum's dementia again, but I do wish I had known a bit more about the illness, I always thought dementia was someone just getting a bit confused and forgetful, oh dear, was I in for a major shock. I also used to think that my mum was the only person in the world that was like this and that made me feel alone, did you feel like this?

From the sound of it your garden is going to look very pretty in the summer.

If you feel really bad at anytime before you see the counsellor you can always phone the Samaritans.

Look after yourself

Lexy

 

[Carabosse]

I know its strange the thoughts that go through your mind, we have been having some cold weather and rain all I can think of is it getting to mum in her coffin as she doesn't like the cold.

Maybe they will turn up unexpectedly one day, I know a few times I have been looking for something but couldn't find it, then when I stopped looking I found it where I had been looking. Can't see the wood for the trees springs to mind!

I was thinking last night in between the tears if mum didn't have the Alzheimer's would she still be with me? The Alzheimer's wasn't too advanced, although it was heading that way (as it would eventually), so it just made me wonder if things would have turned out differently?
When mum first started forgetting things I just put it down to age as mum did herself even though I used to tell her that not everything is age related, then when the incident with the writing on the wall happened I just knew but didn't want to admit that my mum had developed Dementia. I like you thought I was alone that nobody else would be going through what I was with mum, then when I found this website and the stories from others I realised I wasn't alone and that the situation with mum was no where near as bad as some other people's situations. I also felt 'why my mum' what has she done in the greater scheme of things to deserve this, why couldn't it have been someone else?

At the moment the front garden is full of dandelions, I tried using that stuff you just touch the leaves with but doesn't seem to be working as they are still there, so if the rain ever stops I'll have to try again or dig them out.

I could phone the Samaritans but i really need to talk face to face I think, I'll see how it goes with my Dr .

 

[lexy]

Hello Carabosse

It's difficult to say whether your mum would still be here or not, none of us know when we are "going". Rest assured that your mum is safe and warm.

Do you ever listen to music, I find that it helps me, only the soothing type of music though, not the thumpy bangy stuff!

I did not know about this forum when my mum was ill and was either so busy, or tired so may not have used it anyway. I never thought about finding out about dementia because you never think this is going to happen to your mum and I didn't really know anyone else in our family who had had this illness. I knew something was going wrong when my mum did not want to wash because all her life she had been so particular about everything to do with her home and herself. I think most relatives know when something is "not quite right" but probably don't want to think about dementia/AD.

I hope your doctor can make an appointment for you soon, talking , I'm sure will help you, its a way of releasing your emotions and you have to do that when you are grieving. Let me know how you get on.

Hope each day gets a little less painful.

Lexy

 

[Carabosse]

I wouldn't like to know when I was going I would be forever worrying that the day was near, I noticed on a search engine that the government (I think) was going to let people know roughly how long they would live so they could better prepare for it, sorry but that would scare me to death (no pun intended).

Yes, I used to listen to music but at the moment I find no place for it, some day it may come back to me but for now there is no place for it.

Before mum was diagnosed I never knew anyone who had Alzheimer's, then afterwards up popped 3 other people who live close to us with the condition one of whom has since passed but that was from a stoke. As soon as mum was diagnosed I started finding out as much as I could on the subject, consulting chapters in my books that I had glanced at but never really read. Every time I forget something or do something that I end up saying to myself what did I do that for, I wonder could it be Alzheimer's or is it just one of those daft things you do that you would never have given a second thought to?

Sure i'll let you know how things go with my Dr . At the moment each day is still as painful as the one before.

 

[lexy]

Hello Carabosse

I heard about the Government trying to work out when we were all going to die on Radio 4, and no, I wouldn't want to know either.

I really only began to realise that my mum had dementia because of her behaviour and an MRI scan that she had. I remember reading the report and it said the the frontotemporal lobe part of my dear mums brain was "remarkably preserved for a woman of her age" and I can remember feeling frustrated and angry and thinking well why couldn't the rest of her brain be okay aswell. It still, to this day makes me frustrated and asking WHY.

I should have found out more about dementia, but part of me did not want to accept that this was happening. I am not a doctor but I am pretty sure you don't have AD, I'm always doing things that make me wonder if I am getting it but I think its pretty normal to forget things. I have often wondered how did our mum's actually feel, did they know what was happening but couldn't say and what does a person with this illness really feel like inside.

I know this is a very painful time for you because I have had these same feelings, just take life slowly, don't ask too much of yourself and don't expect too much, but please be assured these feelings you have don't last forever. I can't deny that my mum's death has left a terrible emptiness and a void that I know can never be filled but I am learning to accept this and live with it.

Take care

Lexy

 

[Carabosse]

Phew, thought I had misread it somewhere, I mean what were they thinking do they want to kill people off quicker via MI's when people are told their date?

When mum was in respite and became ill the Dr that was treating her said that mum should have been dead years ago with all her ailments, I thought how dare he, I mean its not the sort of thing you want to be told especially if someone was ill.

In reading everything I learnt I think part of me was still hoping she would be ok and that I could slow things down and in a way I think I did to a certain extent, many will think I am being naïve or stupid in thinking I could do anything, but with what I learnt and the invaluable help of my Dr I think I did, I just wish I could have done more maybe if I started as soon as mum was diagnosed might have helped her more?
I did wonder if mum was ok underneath the Alzheimer's you know sort of like a victim of a stroke who is trying to get words out but can't, I'm sure they know what they want to say but it comes out wrong, I often wondered if Alzheimer sufferers were the same? I mean mum would repeat things (not all the time) or try and spell things, as I listened to her I often wondered if she was trying to tell me something but couldn't get the spelling right or maybe it made complete sense to her, but as the saying goes it got lost in translation.

At the moment there is no light at the end of the tunnel the hole is deep and I'm struggling to get out, that's about the best analogy I can use to describe things.

 

[lexy]

Hello Carabosse

I am sure you did all you could for your mum and it is not your fault that she had Alzheimers. I don't think the doctor was very tactful saying what he did.

Did your mum still recognise you? my mum still knew me, but she had had strokes and she would start a sentence but couldn't finish it, I remember thinking how dreadfully frustrating that must be. My mum had many other things wrong with her and I am convinced fought to stay around for me, she used to say to me, "I don't want to leave you, I worry about you".

There is no cure for this illness so no matter how much we try and how well we care for the person we love we cannot make them better but I know that your care will have made your mum's quality of life better for her.

I know the hole is deep but I slowly and painfully climbed out of it and so will you.

Be kind to yourself

Lexy

 

[Carabosse]

It was a Dr from another practice who said it, we didn't know him or him us but he still could have used some tact.

Mum was slightly sedated for the last day or two of her life as she was getting agitated when the nurses came near her, as I said every morning when I went in I would say 'morning sweetie' as I would do that at home as well, she opened her eyes, the same when I leant close to he to tell her I was going (at night) she opened her eyes, so yes I would say she still recognised the voice. Before being sedated she would look at me and if I asked her something she would answer so yes she still recognised me. Mum was like your mum she fought hard to stay with me, i suppose in a way she was worried about me as well, how I would cope without her (which isn't very well!).

I was at my Dr this morning, I told him the bit about the opening of her eyes ands would she have done so on the morning she passed, which is 3 months today, he said he didn't know, I said that I keep thinking she did and I wasn't there and I think I let her down. He told me that this is a common feeling for people whose loved ones have passed and they were not there, he went on to tell me my mum was my world and that I did everything for her, I couldn't have done enough for her.
I did ask about being referred to someone, he said that they don't really have a counselling service as such and usually refer people to CRUSE, I said I had been emailing them but it was never the same person replying, he suggested a face to face meeting I said i'll just break down, he said so, so that's the next thing to organise.

I know I could never make mum better, but I would like to think I made her quality of life better, and I would also like to think she knew I was doing everything within my power for her.

At the moment the hole is very, very, very, very deep, I am just trying not to sink any deeper!

 

[lexy]

Hello Carabosse

It must be a difficult day for you and 3 months really is no time. I know from my own feelings after my mum died that I would say the first six months was probably the worse time for me, so the way you are feeling is only to be expected. I did manage to get up, have a sort of wash, feed the cat and have a cup of tea and then go and sit down and usually fall asleep! It was the only way I could escape the pain I was feeling.

I'm sure your mum knew you were there from what you said and knew she was loved by you.

I would urge you to contact the Samaritans if you feel really bad, I know you can have counselling from Cruse but if you live in a smaller town you may have to wait as I don't know how many counsellor's they have available in your area. What about your mum's friend, does she live near you? and can you talk to her about the way you are feeling.

I know that no matter how many times I say that these feelings you have at the moment will lessen in time probably won't help much, but I have been through the death of my own lovely mum and do know how intensely heartbreaking this period can be. I slept and cried a lot of the time, I was like someone on auto pilot, just doing what I actually had to do but not really "alive" something inside you just seems to die and I know that part of me has gone forever. The line from a Dusty Springfield song kept going through my head, "I just don't know what to do with myself "

I think with us its a case of the deeper you love the deeper the pain you feel, but I try and tell myself I was lucky to have had a mum like mine as you were, some people, sadly never experience what we had with our mum's. For me, I don't know about you, but I know I will never love anyone the way I loved my mum.

Take care


Lexy

 

[Carabosse]

That's sort of how things are minus the cat (for now), I find I am going back to bed to try and get some sleep which I'm not getting during the night, that in turn puts my biological clock out of sync. At the moment the headaches are appearing too often but since I put mine down to atmospherics and the weather is terrible yet again not much I can do!

Mums friend lives round the corner from where I am, I mentioned to her yesterday what the Dr said about mum opening her eyes, she said we will never know. I don't really want to go too deep into things with her as she is 89 and has her own days of depression or not feeling too good, also she was devastated like me when mum passed and again like me she still sees mum in her coffin, so I only mention mum now and again. I will get in touch with Cruse in the next day or two, failing that the Samaritans.

That line from the Dusty Springfield song rings so true, its like I'm going through the motions because I have to not because I want to if that makes sense? It may sound strange but its like my soul mate has gone, our in joke was we were like an old married couple going everywhere and doing everything together especially after dad died, we had our arguments but they never lasted long and we always made up, mum could finish my sentences just as I could finish hers, so yes in a way part of me has died.
Although things are still difficult for you since you lost your mum, I appreciate the fact that you are sharing your thoughts and feelings, they are invaluable.

I agree there will never be anyone who comes close to the love I had for my mum (and dad), the bond with mum was an extremely close tight one, I was lucky to have a mum like I did and I wouldn't have swap her for the world.

 

[lexy]

Hello Carabosse

I wondered if your mum's friend might want to talk about your mum but is afraid of upsetting you just as you are perhaps afraid of upsetting her, its just a thought, you know the lady but sometimes when someone we love dies people just don't know what to say, so they say nothing, which is worse. I know when my dad died my mum said that people would avoid her and it was hurtful.

Like you, I was always close to my mum but when I got divorced and my dad died I suppose we became even closer, she was my best friend and young at heart and we both had a good sense of humour. We had our "ups and downs" as my mum used to say but we always loved each other.

My mum used to joke with me and say "you'll miss me when I'm gone" but I always knew that and didn't want to even think about being without her.

I don't know if losing your mum is changing your personality, but my mum's death and the dementia seems to have changed mine, I was happy and always laughing about something but not anymore, perhaps I'll come back one day. I find the trivial things in life extremely annoying to deal with and if someone starts talking a load of nonsense about nothing I walk off!!

Where has the cat gone?

Just remember to give yourself time to heal.


Lexy

 

[Carabosse]

Never actually thought of that, but when I mention mum her friend doesn't stay on the subject for long, maybe she doesn't feel she can talk about mum just yet but I don't want to push her on the subject.

Exactly the same here, I started to take control of things as mum was finding that sort of stuff difficult after dad died and I just kept doing that once mum was diagnosed with Alzheimer's. I have often wondered if dad had lived longer would he have developed some form of Dementia as well or would he be one of the few who wouldn't get it? Mum always knew I would miss her if anything happened to her, she would always tell me that she wouldn't know what to do without me, but the bond that had always been strong even as a small child grew stronger once dad passed.

Yes I see a dramatic change in me, I'm still wearing dark clothes I feel adding colour would be disrespectful, I used to laugh and joke but now I don't find anything funny, there used to be music in the house but now I feel there is no place for it, too much noise and I'm thinking why do people need to be so loud kids screaming for no apparent reason that sort of thing, I only go out when I have to yet before I was on the go all the time, now its like what's the point? I seem to be keeping everything inside of me whereas before I was bit more outgoing, not over the top or in your face just a bit more sociable I suppose.
Also I feel like I am getting ill or have problems bothering me that wouldn't before, as I said to the Dr I never had time to be ill when mum was here, now its headaches, back pain, stiffness, I feel like I'm getting old before my time!

The cat was on the windowsill yesterday afternoon/ evening but I was eating at the time so I never let it in, by the time I was finished it had disappeared mind you it has been raining a lot so probably found somewhere to hide.

 

[lexy]

Hello Carabosse

I know what you mean when you say "getting old before your time" I did and still do not feel very well, I was never poorly when my mum was alive, didn't have time to be that way but after her death I did not feel well and have not done so for some time.

Things will bother you more at the moment than normal because your situation isn't normal, I used to get irritable and not very tolerant of anything much, I think maybe its because with dementia/AD you have to try and be so calm and cope with this illness when its all over all the feelings we have been supressing come to the fore, we can get angry now because we do not have to try and stay in control so much for the sake of our mum's. I'm not saying I never got angry when I was looking after my mum but I tried not to let her see it.

Have you heard anymore about the counselling? I hope you will be able to talk to someone, I think it would be helpful to unload some of the burden you are carrying emotionally.

Just take it slowly and stay quiet if you can (well that's if the children aren't screaming!) I am still quite outgoing, I always have been but I seem to have lost a lot some of my "sparkle" it just isn't there at the moment.

Is the cat the one that belongs to the lady you said had fourteen cats?

Eventually you will see a point to doing things and having a more contented life but it will take time so don't be in any rush. I did not want to do much and as for joining things, the only thing I wanted to "join" was my mum!

Be kind to yourself and eat all the "comfort" food you want.


Lexy

 

[Carabosse]

It feels like I have about 5 years of illness all in one go, everything seems to come at once either that or I just seem to notice it more, before it was oh that's sore but I just got on with looking after mum, now aches and pains are more noticeable and sometimes floor me (if you know what I mean). I hope it is not how things will be in the future, don't want to be in pain for the rest of my life!

There were a few times I got angry with mum I am not proud of it as I knew it wasn't her fault not that I ever blamed her for anything, but sometimes I just couldn't help it now I'm going over and over things beating myself up about it. Before mum was diagnosed with the Alzheimer's I could put up with a lot of things they wouldn't bother me, unless it was something to do with mum you know like kids giving mum a mouthful (that happened once) then I would be there to defend her. I was watching a programme the other day where the person said they would kill to protect their family, and you know how you sometimes respond to those sorts of things, I said I would have killed if anyone did something (or tried to) do anything to mum good job no one else was in the room.

No I haven't called Cruse yet, but I was on their website and notice they have an office in one of the towns next to the one I live in, though I have been through the place on the bus and don't recall an office, I'll probably send them an email rather than calling them. I'll let you know what happens next.

I can agree with you there, my sparkle, mojo or whatever you want to call it has disappeared, its also like all the energy/ spirit I used to have has been drained and I have no idea on how to get it back? I'm not really in the mood for doing things, but I know exactly you where you are coming from when you said you want to join your mum, I am the same and I have said many times I want to join mine, I told my Dr who said it was a normal feeling.

Yes the cat belongs to the lady who has 14 cats, I haven't seen all 14 but she says she has that amount. It is a wonder she is allowed to keep them as she lives in a council house and as far as I know you are only supposed to keep one or two cats, could be wrong.

I'm definitely eating for comfort just can't seem to help myself, I can have dinner and then be snacking within the hour, not good I know but makes me feel better!

 

[lexy]

Hello Carabosse

You won't be in pain for the rest of your life I don't think, so I shouldn't worry about the way you feel, I think its all to do with the grieving process.

I would always want to defend my mum, she was not as fiery as me and perhaps would put up with something that I would not, she used to say to me, "oh don't make any trouble" she didn't like a fuss but it didn't stop me, I felt I needed to protect her and make sure nobody hurt her.

We must not let the dementia/AD break our spirit, it destroyed our lovely mum's so we must not let it destroy us aswell. Your doctor sounds very nice and he is right, your feelings are quite normal even if they are horrible to live with.

Does the lady with all the cats look after them properly? She may have all these cats because they are maybe not neutered or spayed and are all breeding with one another, I don't know or she may just takes in cats with no homes because she feels sorry for them.

I'm glad your eating something I was so devastated when my mum died I couldn't eat, just drank endless cups of tea and coffee and sometimes had chips, something I never usually eat. Cooking was off my agenda for a while.

If eating, whatever you like helps I should carry on snacking.

Take care

Lexy

 

[Carabosse]

I hope not as I'm not used to going around at a snails pace. That's what I thought, all the years of not having time to be ill are coming all at once, that is what I'm telling myself.

I think mum could have handled herself when she was younger, I mean she told me on numerous occasions that she told her boss exactly where he could stick his job, I hasten to add she had to apologize to keep it. Mum would often say not to make trouble, but when something is wrong you just don't let it go without trying to fix it especially if it concerned mum, otherwise I wouldn't be too bothered.

I am trying not to let it destroy me but it is difficult. My Dr is the best you could ever wish for, he listens, he talks to you and not at you, he is open to suggestions even though in mums case he thought some treatments wouldn't work he would give them a go, its difficult to get an appointment with him as he is so good and everyone knows it, mum liked him so I would always make sure she saw him and no one else unless it was an emergency.

I assume she is looking after them ok, as I said I have only seen about 5 or 6 of them so maybe the rest are house cats and don't come out or are strays who only appear for feeding? I think they have been spayed or neutered but don't know for sure, I would think she has had them seen to.

There have been a few times I haven't eaten and I did think if I kept that up I would end up in hospital and then maybe with mum, but I started eating again except portion sizes are bigger than what they would normally be I say its because I haven't mastered the cooking for one principle yet. I am only doing so because I have to if that makes sense, not because I want to, only problem with snacking is I am putting on some extra weight.

 

[lexy]

Hello Carabosse

It made me laugh when you said about your mum telling her boss to stick the job, I know I would have liked your mum!

You are lucky to have such a good doctor and it helps if you can always see the same doctor, with my surgery its pot luck who you see. I'm sure he will help you through this sad time in your life. My doctor did suggest that I take some medication when my mum died but I refused, I only take pills for pain I don't really believe in them for anything else, well not at the moment anyway.

Do you ever get angry over what has happened and how do you deal with it if you do? I used to "beat up" one of my pillows.

As long as you are managing to eat something, no matter what it is, something is better than nothing. I know cooking for one is not as pleasant as it was cooking for my mum, she was not difficult to please in this way and would eat everything I cooked, she had a very good appetite but in the end could not even keep pureed food down, I think that is when she decided she had had enough of this life and she was so weak and frail it was pitiful to see and absolutely heartbreaking. Did your mum lose a lot of weight, my poor mum only weighed slightly less than 5 stone.

Glad everything seems okay with the cats, I ask because I love cats.

Hope you hear from Cruse soon.

Look after yourself


Lexy

 

[Carabosse]

When mum told me she had said that to her boss I didn't really believe she could do that, I mean she wasn't that big even when I was younger so for her to do that took guts, makes me smile as well as it brings pictures to your mind as to how she might have said it. You would have liked her, everyone she met she got on with.

I asked my Dr for Diazepam which he did give me but added to try and not take them all, I have taken 1 or 2 but with everything else I'm taking I have to be careful as a couple of them don't mix well. Yes he is a great Dr there are one or two others there that are ok and there are two who are on the 'don't treat me even if I'm dying' list, they have no empathy with others, no bedside manner and they weren't very good with mum.

Same with my mum, she would eat what I cooked even if I gave her a choice of what she wanted, she was happy with what I gave her. Towards the end her food was pureed though I wasn't involved with that decision. They used to give her this awful yoghurt which she wouldn't eat, I tried telling them she didn't take milk (they still put it in her tea) so maybe that's what the problem was, I bought A**** yoghurt and she ate it no problem as its soya based and she would eat them at home.
Yes mum began to lose weight, her being inactive didn't help. One day I tried to move her upright a bit and touched her shoulder and I could feel the bone, first thing that came to mind were pictures of holocaust survivors and how they looked, but them she had oedema so she wasn't all skin and bones but it wasn't nice to see. It sort of made me wonder whether they were feeding mum, or whether they tried a couple of spoonful's and then gave up which is what I think happened, I noticed at Christmas they tried to shove big pieces of food into her mouth, even I wouldn't have been able to get them into my mouth and I'm ok! I don't know what mum weighed.
In saying all that when I saw the FD who we knew, he said mum hadn't changed since the first time he had met her.

I still haven't seen the cat for a few days, sometimes she is here a lot on and off the window going from the front to the back other days I hardly see her.

 

[grouse]

sorry to butt in again, but I so relate to this conversation and how you are both feeling, its a relief to hear as I'm feeling so lost with everything.

one thing I wanted to ask Lexy, was about this "I can't deny that my mum's death has left a terrible emptiness and a void that I know can never be filled but I am learning to accept this and live with it."....I'm finding the emptiness and void very very difficult, how do you accept it and live with it Lexy? I've seen cruse 3 times and basically just cried all the way through, it was good to get things out but the void and emptiness kills me.

Any advise would be much appreciated, I've seen here what good advise you are giving carabosse, its so helps to hear from others.