Still lost!

[Carabosse]

That's one of the things I don't understand, hospitals and care homes know that people with Dementia can't always tell them how they feel or whether they are in pain, yes they have a pain chart people can point to but if the person doesn't know themselves how can point to a chart help? They should listen more to relatives who tell them what signs to look for, but they don't so many sufferers are being left in pain unnecessarily. I would go as far as saying some do not like the relatives interfering, you give them a synopsis of what has been going on and from then on whatever you say seems to go in one ear and out of the other.

I think it has just hit her about mum, she said she hasn't cried but she did when I told her and a bit at the funeral but none since then. I think she is thinking of her own mortality which isn't a good thing as I should know I think about it often, but she has eaten the soup I made and frozen some for another day. She has to have her blood re done not sure why but shall see when she sees the Dr, hopefully we will get her back to normal soon.

Yes, I'm clinically depressed and I am finding it difficult to deal with the fact mum is no longer here but lying in the cold damp earth, I doubt I will ever get that picture out of my mind. I still have to contact Cruse but its on hold until I get mums friend sorted, I had thought about asking her if she wanted to talk to someone but she really isn't the type for talking to strangers about anything. I hope people don't think I have gotten over the fact mum has passed just because I am doing things for mums friend, etc. or seem to be happy when I talk to someone, I'm not and I haven't!

No, I haven't smashed any plates lately, would love to go into a china shop and smash things but then I don't have the money to replace the items I break, and also it would be a real waste, so I doubt really I would smash anything. Pity they couldn't do a game on wii or something where you could go through the motions of smashing something without actually doing it.

 

[lexy]

Hello Carabosse

I think maybe quite a lot of elderly people could be left in pain maybe they have no relatives to explain to staff about things they have wrong with them. You can only hope that the staff will give them their medication but I know from my own experience of one care home this was not the case.

At 89 I expect your mum's friend probably is thinking or wondering how much longer she will live. I suppose she is fortunate in the fact that she does not have dementia and I assume from what you say still lives at home without care.

My doctor told me I was clinically depressed and offered me Prozac, also known as "happy pills" or "designer drugs" they got a bit of a reputation when they were introduced. I declined to have any, I would expect to feel sad and depressed after the death of my mum and did not want pills supressing my feelings, although they may be right for some people, definitely not right for me.

You must try to think of your mum being at peace and free of pain rather than lying in the cold earth, she's not there, your mum has gone to a kinder place and hopefully is with your dad. That's what I try and tell myself.

I don't think people would expect you to feel okay at this stage, although some people can be less sensitive than others! Some that have maybe not had this dreadful experience think that after a few weeks you should be okay again, but they will lose someone they love one day and find out that is not the case, as we both know and other people on this forum who have lost someone also know.

You will need to think up some other idea's about letting your anger out, I'm sure you'll find a way.

Look after yourself


Lexy

 

[Carabosse]

That's one of the things that worries me for when I get old, would they give me pain medication when I ask (assuming I am in hospital or god forbid a care home) or would they just leave me. It really doesn't bear thinking about, yet when you read in the papers or see documentaries on the TV it really does make you wonder how things will be in the future?

Yes, mums friend does live at home, she has 1 home help that comes in for 30 mins once a week but her house is that clean they never stay that long, the only reason they come is that she was ill a few years back and her sons (who don't live anywhere close) got the help. She does things herself and I do her shopping when I go to Tesco's, she goes down the town when she needs the bank and picks up a few things herself. No, she doesn't have Dementia but she has been misplacing a few things (as we all do), but I'm at the end of the phone if she needs me which seems to be a lot these past few days.

I have Diazepam but as yet not taken any, difficult to fit in with everything else I'm taking and the fact it can't be taken near a couple of them.

I know she isn't there but I sometimes wonder, I think I have her fear of being buried alive, yes I know she was embalmed but it still doesn't stop me wondering. I am trying to tell myself she is with dad and her parents but when you are not a very religious person its difficult to go from not really believing something exists after you pass, to believing that there is an afterlife and everyone is a happy family again, but I'm working on it, however every now and again a doubt creeps in along the lines of if there isn't anything then passing away (sorry don't like using the 'd' word) is so final, there is nothing else!

Never thought of it along those lines but now you mentioned it the older the person is I have spoken to they seem to understand as they have lost their mum and dad so know what I'm going through, someone younger might not have had the same experience and wonder why I am feeling the way I am, but as you said they will find out eventually.

 

[lexy]

Hello Carabosse

I fear things will be worse for us when we get old, care of the elderly has become big business and I think, that like small shops being put out of business by supermarkets the same is happening in the care home sector, they could be run, like some already are, by larger providers and the smaller ones go out of business, then all they will be worried about are their shareholders!

I expect your mum's friend appreciates your help and is probably glad your'e around to do things for her. She must feel a bit lonely without your mum's friendship.

Its awful to keep thinking your mum was buried alive, but that could not happen so try not to think that way. My mum was cremated, she wanted to be because she said she was afraid of the " creepie crawlies" but her ashes are buried beside my dad, that is what she wanted. I like to think that she is with him now, thinking this way makes me feel better, nobody really knows what happens to us when we die, is there an afterlife, I don't know. Wherever your mum is now, just remember, she is peaceful and not hurting or in pain. She will always be with you in your heart and your head and all your memories like my mum is.

I don't think someone can really understand how intense grief can be if they have not lost someone they loved and to have had to cope with dementia/AD before a person dies makes it even more difficult. With dementia I felt my mum was dying bit by bit before my eyes, I've heard it called the long goodbye and I think it is.

Look after yourself .


Lexy

 

[Carabosse]

I always said to mum if I had enough money I would open a care home in our town where there used to be one, large open grounds tall trees surrounding it, but the council closed it. Anyway, I wouldn't charge the Earth for staying there, I would vet everyone who would want a job, I would have more staff than I needed, there would be activities of all types, it would be a nice place to want to be and above all it isn't anywhere near the cemetery unlike another care home!

We were at the Dr's yesterday mums friend said she was feeling better, but I know she is not, I didn't like to say as its not really my place. She has to have bloods done again and go back in a month or so to see how things are, if I see the Dr before then I might just tell him how she really is, or should I keep out of it?

Technically it can't happen, but you do read stories in the papers about mistakes and people waking up in the morgue, in saying that the FD here is well known so I know he wouldn't make any mistakes (I hope). It was mums worst fear and I think it has been passed onto me, I suppose in time I will stop thinking along those lines but I can't guarantee it, mum is buried with dad and i'll be with them once I pass. I do hope there is an afterlife but it must be a really big place as many people have passed from all over the world, hope its not crowded!

I know mum won't be in pain anymore, or at least I'm hoping there isn't, you know if there is an afterlife its not a continuation of life here? Yes, I have many memories of mum (and dad) and I often find myself looking back to a time when we were all happier, I wish we could go back to that time but I know that's not possible (unless anyone has a time machine?).
When mum was in hospital I did say to her that I see her slowly slipping away from me day by day, she didn't really understand what I meant and for that I'm glad. I wonder if she knew herself that she was ill, I know when she first went into hospital not long after the Alzheimer's was diagnosed she wanted home she didn't like being away from me let alone being in hospital, near the end I never got the same determination to come home I would like to think she would have wanted to come home if she had been well enough, its just little things like that that keep cropping up in my mind and makes me wonder how much mum really knew about her illness?
I never thought of it as a goodbye as like I said before mum had been in this situation many times before and part of me hoped she would get through it like every other time, yes I knew there would be a time when she wouldn't get over it but that's not something you think about or at least I didn't.

 

[lexy]

Hello Carabosse

Where I live there used to be a lovely care home owned and run by the Local Authority, it had a good reputation, people petitioned and protested and tried to keep this home open but the LA, closed it down, something to do with money!!

If your mum's friend is not well I think I would try and drop a few hints to the doctor, maybe she is afraid to tell the doctor how she really feels, or perhaps does not want to make a fuss.

I have it written in my will that I want to be cremated, I have a fear of being buried alive! If there is an afterlife I only want to see the people I loved "down here" and do not want to bump into any that got on my nerves. The universe is a big place so I don't expect it's crowded. I did think about making a "living" will because I have nobody to speak up for me and say what I want, or don't want but if you make one it can be left with your solicitor and doctor and hopefully someone may take some notice of it. I definitely do not think an afterlife is a continuation of life here on earth, our mum's are at peace and that is the way you must try and think of her now.

It is difficult to say how much your mum would have known about her illness, I have always wondered what was going on in my mum's head and what was she really thinking, I shall never know, but I do think that our mum's would have known that they were loved very much by us. I know when my mum was dying I often wonder, did she know she was dying, was she afraid. My mum kept holding out her arms as if she was trying to reach someone, I like to think it was my dad she was reaching out for.

Are you managing to look after yourself, are you eating and sleeping reasonably well. I know you will still be depressed and this will probably last for a while, but please be reassured it won't last forever. Did you manage to plant the stuff you wanted to in the garden.?

Have you seen the cat?

Be kind to yourself


Lexy

 

[Carabosse]

It would be a good use, I suppose there are only so many things you can buy before it gets boring? I would give some to charity as well, but I suppose it would depend on the amount to begin with.

My Dr phoned yesterday with my results and I mentioned mums friend and I was a bit worried and how she never exactly told him everything, I mentioned her and mum were good friends which he had figured out for himself (clever guy), he said to keep an eye on her until he sees her next month.

I haven't made a will (yet), I keep meaning to do so as I don't want any of the relatives getting any money I might have or any of my belongings. I might jot something down on paper and get a witness to sign it then do a better one later on, not sure what to do with all my stuff anyway?
It would be nice to think that we only meet up with loved ones if there is an afterlife, as there are a few relatives I would rather not bump into again. What I meant by a continuation of life down here was that everyone would be in perfect health but we just continue on with life, not that our loved ones would still have Alzheimer's or be in pain.

I would hope our mums knew we were doing everything for them, but its something we will never know we will just have to tell ourselves that they knew. I often wondered that, did my mum know she was near the end, mind you if I really couldn't see it maybe she couldn't either, I would hope if she did know that she wasn't afraid, if it were me I would be even though there would be nothing I could do about it.

No I'm not sleeping much, headaches are coming more often also with a sore back/ hips/ top of legs turning is a problem and painful, hence the reason I'm up at this time answering this before going back to bed for a while! Lately I really can't be bothered eating much not even sweet things, its like everything has lost its taste, maybe I'm coming down with something?
As for the garden I managed somehow to get 16 Brussel sprout plants in (still got 16 more) and 16 winter cabbage plants in plus 2 rows of potatoes, I think I stayed out too long in the sun and got a bit of sun stroke as I felt awful the rest of the day.

I have seen the cat from a distance usually when its wanting in to it own place, I doubt it is out much as its still raining on and off.

 

[lexy]

Hello Carabosse

I should make a proper will when you feel well enough to do this, something written on a piece of paper and witnessed will probably not be recognised in law and then those uncaring relatives you mentioned might get what you don't want them to.

I see now what you meant by continuation of life, I thought you were worried that you mum may be feeling the same where she has gone, I think you are saying that you wish your mum was still with you, and I wish mine was still here with me but sadly people passing on is the only guarantee in this life and there is nothing we can do about it. It is difficult and painful accepting that someone we love has gone.

Maybe one day they will find a cure for this dreadful illness which destroys so many people's lives and causes misery wherever it goes.

Because of our stupid weather I now have a dreadful cold, I always seem to get one when the seasons change, sunny and hot one minute, cold the next, thunder and lightning and pouring rain and then warm and muggy!!! I will be resting today with a hottie and a lemsip.

From what you said it sounds as if you might have a cold aswell.

I will have to go and have a rest on the sofa, I feel poorly today.


Look after yourself


Lexy

 

[Carabosse]

I probably will do at some point, its just that I change my mind so often about things if I say I'm going to leave something to someone then decide against it, not good to do that. One day i'll have to sit down and figure things out, but doing so seems so final which at the moment I don't want to think about.

I hope mum isn't still suffering wherever she is now, if so that would just make me feel worse and shatter any illusion I might have of what heaven is especially since I'm trying my hardest to convince myself it exists and mum and dad are there together. As I mentioned I have started praying before I go to bed, asking God to look after mum and dad, and saying I want my mum back, so yes I wish she was still with me. With everything mum went through at one point I thought she was invincible, but I knew that would never be the case as that's not how things work.
I would like to think a cure is somewhere on the horizon especially with all the money that's being poured into research, but I somehow think it will be quite a while before anything is available for patients to take as most of the trials seem to fail in phase III.

Sorry to hear you have a cold, that's one thing I never seemed to get until the past couple of years, now I seem to get them quite often. I think my sinuses are playing up which may explain the headaches and sore neck, but I'm not blocked up (yet) if I were I would put it down to hayfever more than a cold at this time of year. I think the fact I spent longer in the garden the other day and got a touch of heat stroke didn't help, won't be doing that again in a hurry or at least not without a hat!
It is supposed to be sunny and 17 degrees, its nowhere near that nor is it sunny. Its been raining on and off for the past few days and more is due for the next few, even had to put the heating on its been cold.
I have stuff on the sofa so its my bed I go to, its like my safe place if you know what I mean?
Hope you are feeling better soon.

 

[lexy]

Hello Carabosse

Your mum isn't suffering anymore, she is peaceful and pain free, just like my mum is. I just kept telling myself there is a Heaven and a God and that is where my mum is now and she is safe and not unhappy. Pray if it helps you, as I said before I am not a deeply religious person but I grew up in time when children went to Church every Sunday and were taught Religious Knowledge in school, I don't know if they still do this. Tell yourself anything that feels right for you and believe whatever feels right for you, I do. Try not to torture yourself and I know that is not easy in this situation. Your'e in the "process" of accepting your mum's passing and will probably be at this stage for sometime yet.

I do think about my mum a lot and when I was a small child and how I used to "help" her in the kitchen when she was cooking, I used to like to eat the remains from the bowl of the cake mix she was making, my mum was a good cook, we didn't have supermarkets when I was a child. I have thought about my childhood a lot lately and all the kind things my mum did for me. If she knew I had a cold she would have said to me "you should have taken your Haliborange tablet" like we did when we were children. Do you think about your childhood and when your mum was well?

I have spent the day coughing sneezing and find it difficult to rest because I like to be doing something. Hopefully this cold won't last long.

I expect you are in the same place in the tunnel, but are you at least facing the right direction? I know it took me quite sometime to find which was the way out!

Look after yourself


Lexy

 

[Carabosse]

If no one has come back to tell us if there is a heaven or not we can't say if there is any suffering or not, basically we are going by stories told through the years. I'm not that religious either and I'm going by what I remember from Sunday school when I was younger and from what other people tell me, so I have no idea what to think really, but it will take a long time to accept mum isn't here and not coming back.

I can relate to you there, I helped mum in the kitchen and she taught me everything I know about cooking apart from the odd lesson in home economics at school and yes I would lick the remnants of the bowl with mum. Mum was a good cook but I took over the cooking after dad passed, mum was ok with that, we had an in joke of whoever did the cooking the other did the dishes, so basically I could use every pan and mum would have to wash them (I didn't do that though).
I do think about times when we were all together and we didn't have a care in the world, well none that I knew about! Same here, if I had a cold mum would have me taking tablets and drinking the likes of Robinsons orange juice diluted and hot, I still do that now if I am under the weather or don't feel right.

As for the tunnel everything is still dark, I have no sense of direction in this tunnel so I have no idea if I'm facing the right direction or not? I suspect it will be a long time for me as well!

Take care of yourself, I know you might not want to do anything but maybe that's what you need, rest.

 

[elizabet]

Something that has helped me over the past almost 5 months now since my Mum died is a poem called "She is Gone" if you type that title into your search it will appear.
Yes, I miss my Mum very much , but life has to go on. I have been through all the what ifs surrounding her death and the quick lead up to it but I cannot change anything by worrying.
I hope you start feeling brighter, life is for living for those who are left, and start to come out of your dark place.
Elizabeth.

 

[lexy]

Hello Elizabet

I read the poem, it is lovely and so are some of the other ones on this website.


I think the poem "Death is Nothing At All" is probably the way I am trying to see my mum's death.

 

[lexy]

Hello Carabosse

Elizabet suggested a lovely poem for you and I found this one aswell. I hope it helps you.

The sadness of the present days
is locked and set in time
and moving to the future
is a slow and painful climb

But all the feelings that are now
so vivid and so real
can't hold their fresh intensity
as time begins to heal

No wound so deep will ever go
entirely away
yet every hurt becomes
a little less from day to day

Nothing can erase the painful
imprints on your mind
but there are softer memories
that time will let you find

Though your heart won't let the sadness
simply slide away
the echoes will diminish
even though the memories stay



Lexy

 

[Carabosse]

Both poems are really nice.

I know I can't change anything but it doesn't stop me going over things and feeling guilty because as I have mentioned I could have done more, I guess I will always feel that way.

I just feel so down, depressed and don't see any way out of it. I have good intentions to do things but never get around to doing half of what I set out to do, suppose having a sore back, hips and what seems like constant headaches doesn't help!

 

[lexy]

Hello Carabosse

I don't think you could have done anymore, although I know this feeling because I felt like this aswell and still do sometimes.

As your doctor said, you are clinically depressed, I also know this hopeless feeling I had when I was depressed, this cloud over you will in time lift but it can last a long time, it did for me. There is a way out and one day you will find it. There is no hurry, take your time. What you are feeling is normal.

I used to say to myself, what would my mum want me to do, well I knew the answer to that one, she never liked to see me unhappy and neither would your mum.

Unless someone has suffered from this type of depression I don't think they understand, I didn't even have good intentions like you, I had no intentions at all! I felt "flat" all the time as if I had had the life ripped out of me, my head was all tangled up, I could not think straight, I ended up sleeping to escape. I wondered around our house from room to room "looking" for my mum, I simply did not know which way to turn but as time passes I started to find ways to go and so will you.

Please don't punish yourself, you've not done anything wrong.


Lexy

 

[molly11]

Hi Carabosse,

I'm so sorry to read of your loss & how you're struggling.
Grief is such a roller coaster (in my view) & knocks me over often. My Dad died almost 3 weeks ago & Somedays I can barely function.
I'm glad you're posting & sharing.
A poem called "The Dash" by Linda Ellis was read at my Dad's funeral. It's incredible but Somedays I really struggle to accept the sentiments. On strongetr days I can. I hope you can read it.
My thoughts are with you

Molly xxx

 

[grouse]

I feel I'm constantly trying to live my life in the past, because that's where mum is now.

I know that's wrong and I wish I wasn't doing it, but it just feels safer and familiar, this living without a mum and dad just isn't right, I don't know when it begins to feel right, I suspect it never will.

I know my mum and dad would hate for me to feel so sad and alone and to enjoy my life and look forward, but the future feels scary. Like carabosse and lexy, I looked after mum and stuck up for her when needed, which was a lot, not only with the council and health professionals, but with my own sister who wanted to buy mums house and make a great profit and put mum in a care-home years and years before she was ready for this. And I'm so scared of the future to think I may not have a "me" who is there to stick up for me. What you're doing for your mums friend sounds great carabosse, you sound very caring.

I search for my mum everywhere, sometimes I feel I have a sign she is still with me, the alternative doesn't bear thinking about.

Mt heart goes out to everyone here, I think unless you have lost someone you've been so close to its impossible to even imagine the impact their passing has.

 

[Carabosse]

I know exactly what you mean grouse, I am living in the past or think I am as that's where all the happy memories are. And no I doubt I could have done more to help mum but doesn't stop me thinking I could and how frustrated I am with some of the medical profession and there attitude towards elderly people, which I wish I could do something about.

Mum is probably looking down on me wishing she could do something but she can't, she didn't like to see me upset. I am not sleeping well at night and have found that I wake up about 5 or 6 am get up have breakfast then go back to bed, other days I just go back to bed as like you say it feels safe. Although I haven't been going around the house looking for mum I still think she is here, a noise or a thought that i'll have to tell mum or go and see what if something is wrong, then it dawns on me she isn't here anymore.
I agree with you about someone who hasn't suffered this sort of depression can know what another person is going through, I always though people were faking it or hamming it up a bit, but now I am in the same boat I can't believe I even though a person could be faking it!

Thanks molly11 I will look that poem up at some point, sorry to hear about your dad.

I am thinking of the future but its of a darker future, I am thinking of my own mortality more often than I would like to and since I am having problems with my back etc. and like grouse who is going to be there to stick up for me like I did for mum? I am thinking is this how its going to be, especially with the depression and headaches. I don't want to keep going to my Dr as I somehow think he might think I'm becoming a hypochondriac, which I'm not. I feel (at least for the moment) I can't do this alone, I need my mum back she would know what to do. I would like to think mum is here with me but as yet I can't feel her presence, maybe that will come in time?

 

[lexy]

Hello Grouse

It is nice to hear from you. I was not feeling very well at all after 20 months, this is no time really and I sometimes feel as if I am trying to live in the past, but really it is just remembering my mum and happier times, there's nothing wrong with that. For me personally, it will never feel right without my mum but I have had to painfully accept that she has gone, but as I said to Carabosse, she has not gone from my heart or my head, she is still very much with me and always will be and so will your mum be with you in this way. When it comes to thinking that I will never see her again in this life something in my head seems to "switch off" and I just don't think this way.

My brother wanted to put my mum in a care home long before she needed to go into one but I put a stop to that!! I never had any support from him, all he ever said was "I wouldn't do what your'e' doing" and I said "I'm not asking you to do anything"
I gave him a bit of an "earful" some while ago and said how he should remember all the things our mum had done for us and sacrifices she had made for us, and how she always put us first, I went on and on and told him a few home truths, he has not spoken to me since, I don't care.

As for our futures when we get old I'm not going to worry about it yet, life is too short.

Take care

Lexy