I Miss my mum!

[fayester1979]

Hi! well I am new to this and dont really know where to start! My mum has been diagnosed with AD at the age of 55! I have known for a while that something has been wrong but rather selfishly put it down to mum not caring.......however she has now been diagnosed! I miss my mum so very much we have always been very close and she is like my best friend but for at least the last 3 years she has been uncharacteristically different! if that makes any sense at all!!! I suppose I am looking for a bit of advice about how to manage my own feelings......we are in the process of waiting for a community care assessment and an appointment with a social worker......it all feels so very wrong that mum should be going through this at 55! I am finding it exceptionally difficult to come to terms with, but have to get on with it as mums partner isnt particularly communicative and just sits back and buries his head in the hope that the situation will improve! they hide things from me i.e. appointments with community mental health teams etc. etc and then forget what they have been told and then I have to try and work out who came and why and contact them to find out what was said etc. etc. etc. there is so much to sort out and I just dont know where to start.....does anyone else feel this way.....any suggestions! would be so grateful! thanks !

 

[Canadian Joanne]

Hello Fayester and welcome to TP. In some ways, the beginning stages of the disease can be the hardest for us, mostly because we have to come to grips with what everything means.

Once all the assessments and appointments have been completed, things should start settling a big in terms of the day to day events.

As for missing your mum, I know exactly what you mean. My mother was diagnosed at the age of 64 but she too had been acting oddly for several years before diagnosis.

Before my mother fell ill, I truly thought (and still think) that no other mother and daughter had ever been so close. I really did hero-worship my mother - her opinion was the most important one to me. Once, when I was in my early 20s, I told her that she couldn't die before me because I could not envision a world without her. Another time, a couple of years after her diagnosis, I sat on the grass at work crying, telling a co-worker I wanted my mother back.

I still want her back but I have now accepted the fact that it won't happen. Eventually, and it can take quite some time, I hope you will also have that acceptance.

 

[jenniferpa]

Hi and welcome to Talking Point

I think most of us can understand when you say you miss your mum. It is a very difficult thing to deal with: you have a person who still essentially looks the same but who is really like a different person. Often they will appear to become monumentally self-absorbed, and that's very hard to deal with when it's someone you love. And of course, your mother is so very young (well she seems young to me - she's my age), so you must be young as well.

This website has a number of different factsheets that can give you the basics, http://www.alzheimers.org.uk/factsheets and there may also be some that might be worthwhile you printing out and giving to her partner. Some people do better with getting their information from the printed page.

One think that you should try not to put off might be one of the more difficult things - you should try and get your mother to make a lasting power of attorney for both welfare and finances while she is still capable. It will make things much easier in the future. This fact sheet goes over the basics http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=154

The other thing to consider is that sadly, they may not have been actually told a lot. Often people will be given their diagnosis and that will be more or less it. It shouldn't happen but it does. You might ask your mother if she would be willing for you to go with her to her next health appointment.

Take care and keep posting. I won't say it get's easier but it does get a bit more manageable.

 

[Hamy]

Younger AD sufferer

Fayster.....I know how you feel to a certain extent my mum was diagnosed at the age of 57 but had been probably hiding it for a year or two, she is now 64. She was a strong independant women and raised my sister and I extremely well. She was a champion squash and tennis player and in my dads words " a real stunner" in her days.
I live in Northern Ireland and quite frankly the level of support for younger sufferers is awful. My father still runs the family buisness and cares for my mum round the clock. As she is still physical fit she goes on walks all the time and my father is constantly keeping an eye on her as she gets lost on regular occasions. Her personality has completely changed and she doesnt seem like my mum anymore. My sister and my mother sounded as close as you and your mother are. My sister has not coped well with the transistion and gets angry and upset that her and mum are not as close as they used to be.

The focus for me now is on my father, as he is the primary carer it is more difficult on him as he has no respite. A carer comes to the house 1 hr a week and she attends a small group in the local church 1hr a week also, but this group is comprised of people over 70 who are still able to hold a conversation down and do not suffer from dementia.

Still though as time goes on you will begin to accept that she has a condition and once you come to terms with that you will be able to focus on providing her with the best care and support both from yourself, family and from outside sources. I battle with feelings of guilt daily that I am not helping my father enough and also anger that other family members are not helping enough and that the level of care available in NI is rubbish.
I just hope that eventually the health service will recognise that AD is not just a condition that afflicts the over 70s and begin to provide proper dementia care like the resources of memory clinics etc which are currently available in the USA.

Chin up hope all is well

Neil

 

[Jess26]

no advice but I certainly do empathise.

I too miss my mum.

I was very close to my mum, she was always the one I turned to with good or bad news.

 

[kazza73]

I too miss my mum. I actually started a thread a while back called 'Being a mum without a mother' which reflected how I felt at the time, and still do. here's a link

http://forum.alzheimers.org.uk/showthread.php?33971-Being-a-mum-without-a-mother

My mum is 63. We first noticed things weren't quite right about 10 years ago but it's only in the last 3 years or so that things have really progressed quickly. Mum and I were always pretty close while my sister was closer to my dad. I miss my mum terribly.

K x

 

[Izzy]

Just wanted to say I feel for you. So young, so unfair. x

 

[sarah123]

Hi Fayester1979 (and everyone else!)

Just wanted to say I understand completely how you feel.
My mum was diagnosed almost 2 years ago, she is 57 now, but thinking back I can say her behaviour was odd going back at least 10 years.
I'm in the process of planning my wedding next year and it's something I never though I would have to do without my mum. She has shown no interest at all & I'm not sure if she even knows anymore that I'm getting married. Whenever I say anything to my dad about it he jumps to her defense saying it's not her fault, which I know, I just want him to acknowledge that it sucks!
I've had a few friends who got married or are getting married and they'd moan about having to go mother of the bride outfit shopping and I really wanted to shout at them about how they don't know how lucky they are to be able to do that. If my mum is even able to go to the wedding, she will probably wear whatever she had on the day before, it won't be a special day for her, it'll just be a day where her routine is broken and she will probably complain about that to whoever is nearby.

 

[bulmer]

I miss my mum too

My mum is still here but she's not the mother I remember My mum was very affectionate but isnt know I miss MY mother. This site is very good I hope we can help you

 

[florence43]

Hi, and welcome!

I really feel for you, and reading your thread took me back to what seems like a lifetime ago, though it probably only 7 years or so. It feels like a lifetime because so much happens...certainly more than what happens (or doesn't) in the lives of my friends' mums. They age, but they're still there...in the same capacity as always, but when the diagnosis of dementia enters your world, you do start to say goodbye.

My advice, based on experience and hindsight is to try not to learn it all now. You won't need to know it all now. A little preparation may be beneficial, for you both, but you mustn't get scared. It's important to remember that everyone experiences dementia very differently and it's true that you can, and probably will, still have a fantastic relationship with your mum, but you may need to get to know the slightly different person she will become over time. It will change you too.

I have learned to appreciate the little things, the precious moments, the small achievements my mum made as it got harder. I learned to be incredibly tolerant, to enter mum's world (and not expect her to be in mine), and to still laugh. Though there have been many times where I have been frightened, sad and very lonely because of this illness, there have also been many funny sides too. She and I giggled over the silliest things (mostly that she did!!), and as long as she was happy, I was happy. It's sometimes as simple as that.

The tough times are harrowing, but as with any disease, mental OR physical, we learned to adapt.

I miss my mum too. I spend every Sunday with her, but she hasn't spoken for nearly 3 years, can't move and is very poorly now. But...if I wrinkle my nose, she wrinkles hers and that's good enough for me! Time allows us to accept the changes, and you will...I promise. It's not too bad now, so try to enjoy and absorb whilst at this stage. Then as another bridge needs crossing, you'll cross it together, just as any mother and daughter would, and you'll both get to the other side.

Stay with us here, and if you ever get scared or you feel the need to say what's on your mind...just type!!! We're all in it together,

 

[ailyn2611]

Hi

I'm so sorry to hear about your mum, and I'm glad to see that you are actively looking for help to look after your own feelings. I want to let you know that there is lots of support out there, whether it's physical help or virtual emotional support.

My mum was diagnosed in her early 50s, she's now 65. The usual thing os starting with so-called absent-mindedness, now she's fully dependent on my Dad for all her daily living activities, and is non-communicative. In effect, to me, I have 'lost' my mum years ago. I often feel sad, especially when I hear my collegue in the same office talking to her mum about shopping and girly stuff, I often feel really envious of her that she's able to talk to her mum so easily. That is, until one christmas when her mum passed away very sudddenly. Life was put into perspective for me....

Now, although I still feel sad about my mum, I have accepted the way she is. The person I really feel for now is my dad, who is the full time carer for mum. He was once the most patient person I have ever known. But now, although still fully dedicated to looking after my mum, he is getting frailer, and more impatient and often gets angry with mum now.

Unfortunately they live abroad, and I only get to see them once a year, and where they are, they do not have the advantage of the facilities to help carers etc.

Anyway, please be patient with yourself, and be kind to yourself, and open up as often as you need to, and this forum is an excellent place to seek some emotional support. You will get to a stage when you learn to accept and deal with the situation a lot better - even though it may be difficult to believe it at the moment. Time really heals, and time really helps!

Take care!
x

 

[cyprusbreeze]

I miss my husband too

I know that I am very lucky that my husband who has VD is currently very well and functions pretty well too ie: he can still drive the car to a familiar destination every day. In this respect I think it is even harder to understand that mentally there is a void - every conversation is forgotten within minutes even though at the time it still all makes sense. Decision making is completely hopeless - if I ask his opinion he just says 'I dont know'. He cannot do any of the chores that would normally be classified as his ie: car tax, insurance, servicing etc. I find it hard to remember that he cannot remember anything because he looks so well and so of course do other people who will say to me 'well I told Keith!'. I cant blame them but they all know the situation. It does make for an emotionally lonely existance when there is no recipricol interest in your wellbeing ie: if you say you are going to the doctor there is never the expected question about why. I can only say that the only way I can cope with this is to have a few close friends friends and family who I can have discussion and debate with and thank goodness for the interet which allows communication with others at a distance Occasionally there is a ray of light when he will ask me if I am ok - cant explain how grateful I am on these occasions

 

[10claret]

Missing Mum....

Hi

You are not alone, it's my birthday today, it's the 5th year that Mum has forgotten completely and for the last few birthdays I have hoped/thought/prayed maybe this year she will remember, then both get upset when I/we/she realises seeing all my cards.... how sad is that!

Anyway most of the time I try to be strong, deal with things, practical head i.e. take time off work to take her on holiday, etc, etc. I remember everything for her for the rest of the family and nobody seems to remind her about me..... what to do? Well back into I have a problem and will sort it, so I bought 20 birthday cards (the sort that she would have bought me and they are all the same) helped her write them (gave us something to do one afternoon!) then put a year on each one i.e. 2011/2012 and I have put them away safe so I can open them on every birthday. I sometimes wonder if I will get to open them all!!!

I am not going to spend another birthday crying, well I say that but I did disappear before to have a little sob, opening the first one she did for me, guess it's something we have to just live through knowing that there is someone out there experiencing the same.

Strength to all

Claret x

 

[Sue J]

Dear Claret

Wishing you a Happy Birthday

Love
Sue
x

 

[FiveWords]

Hi Fayester1979

I know EXACTLY what you are going through, and I really feel for you. My dad has very recently been diagnosed with dementia (we are still waiting for an MRI to confirm the type of dementia, but as we have early-onset AD in the family tree we know what the answer is likely to be )
My dad is almost 60; my sister and I are his main 'carers' (I use the quotes because he hasn't really got to a stage where he needs proper 'caring', but technically we look out for him, make sure he pays his bills, attend the doctors appointments etc etc) and we are 27 and 29. I have cried so hard over the 'loss' of my dad, even though he is still with us (and still more or less himself, thank goodness, for the time being). As far as I am concerned, I am bereaved; and it is so hard for anyone else to understand why I feel that way, as all they see is "Oh her dad's ill; well that's a shame, but lots of people's dads get ill, why is she taking it so badly?" They don't understand what it means for my dad and for us. Part of the pain for me is that my dad doesn't deserve this; he had to nurse his own mother through AD, and now is rewarded like this? He was the BEST dad as we were growing up: always there for us, read us stories at night, even sang to us, and he is my total and utter hero. My first thought when I realised he was ill was "please god not this; I can take anything you want to throw at me, anything at all; but don't do this to my dad". Any other person in my life; any other disease. But not this.
The good news is, I have found some internal strength I never knew I had, and I am coping, and I really, really hope you will find some strength too. I was completely at rock bottom; broken, devasted. But I needed to look after my dad and I couldn't do that in the state I was in, and somehow, that thought was enough to pull me out of it. And I can smile again. Sure, I have my share of tears too, but I feel human again, and I know my dad needs me there to help him through it, so I will be.
Another thing that helped was a night out I shared with my dad recently, just the two of us. I took him to an outdoor classical music concert, and he was in his element; he absolutely adored it. We talked openly about what is happening to him and how it has and will change things, and it was like therapy, it really was. I came away finally understanding how it feels to be him, what he is going through, and crucially, how to help him. But more importantly, we laughed; so hard I thought I'd burst. I realised that this isn't the end of my dad, I just have to get used to a few changes and adjust to them. And later, there'll be a few more changes, and so on, in gradual little steps which, each on their own, are not that hard to take. But I will not simply wake up one morning without my dad, like 99% of the world sadly does. He will be there, in some form, until eventually there will be so little left that it will be less painful to say goodbye, and I will know that I have said goodbye properly and have no regrets. Even the darkest of clouds have a silver lining, if you look hard enough. I hope you can find yours xxxxxxxxxxxxx

 

[Memories]

Life Story

Yes, I too know how you feel and mum died 33 years ago after nine awful years of strokes and I still dream of caring for her.

Do try compiling a Life Story of your mum's life - concentrate on those happy times "accentuate the positive eliminate the negative". Find all those photos hidden away, scan them, add music and burn onto a DVD - I am finding that it really works!