I am just so sad

[Rachael_11]

Hi everyone,
Ive never posted in here before, or indeed in any forums about dementia but I don't know where else to turn to tonight. Any friend I talk to looks helpless, and mutters that they are sorry but somehow their incomprehension just makes me feel more alone.

I'm 23, my mum is 55 and she was diagnosed with FTD at Christmas last year. She is still fairly coherent but it is now basically impossible to have a conversation that is not either entirely focused on her, or achingly nonesensical. I feel so guilty for even writing this post, I am sure it must all seem very melodramatic but I am just so terribly sad about how things are now, and so angry and in pain at the thought of the future. I just keep pictuing moments (future Christmases, birthdays etc.) at which she won't be there. I feel like I have already lost her and yet she is physically still there. I know her condition will get much much worse. Worst of all, I find the decline in empathy so hard to handle. I am currently in the middle of my final exams for my masters degree. All I want to do is curl up and cry and I have two final exams to get through this week. I know so many people have a much more difficult time than me. I am blessed with my dad who lives with her and my wonderful sister. But I feel so alone, I feel like I've lost a part of me and, I know this sounds terrible, but I just am so scared I will always feel alone. I hate how selfish I sound I know but my mum herself seems quite happy really although a little lonely. I was just so love some support from people who understand and again I am sorry for a self absorbed post. It's just I have to get through these exams but I really don't feel I can find the strength right now and I so don't want to let my mum down. Also, and I wonder if others find this too, I find myself constantly questioning my own mind and thinking I'm not making sense. Many many thanks for reading this and sorry for it's sad tone.
Love

 

[Canadian Joanne]

Hello Rachael and welcome to Talking Point (TP). I'm really sorry to hear of your mother's early onset. My mother had just turned 64 when she was diagnosed and I was angry and despairing for months and felt I was being cheated.

It's the hardest thing, watching a dearly loved person slowly disappearing in front of you. I don't think you're being melodramatic, it truly is an extremely difficult thing. I think it is good for you to express your emotions and on this forum everyone understands, as they are going through the same journey.

Right now, try to focus on your exams. One thing at a time. Easy to say and harder to do, I realize.

Also - try not to anticipate the future as you may miss lovely moments happening right now. Enjoy your mother as much as you can. Stay in the present.

 

[SisterAct]

Welcome to TP Rachael. So sorry to hear about your Mum. Just echoing everything Joanne has said. You will not be alone on here.....always someone on hand.
Polly xx

 

[zeeeb]

don't feel bad. It is hard. Especially when you are so young. You still need your mum, and she's no longer able to be the mum she once was. It's hard because you mourn the loss, but she's not dead. It's frustrating, infuriating, upsetting whatever way you look at it you're whole world has been turned upside down.

You need to vent, and here is a great place, because there are so many of us that have either been through it, or are going through it as well.

We can't help, but we may be able to help you realise that you are not alone, there are tonnes of us going through similar things.

 

[piedwarbler]

Hi Rachael

Welcome to TP. I can empathise with your post very much and I'm sure there are lots of us who feel the same. You have had a big shock and it's normal to feel the way you do. I know I felt scared for a long time and there were times my head felt all mixed up.
We are here to listen. X

 

[Izzy]

Hi Rachael and welcome from me too. I'm so sorry to read about your mum. There's little wonder you feel how you do. You have every right to feel so sad and so angry. It's hard I know but you have no need to feel guilty. This is the place to come. You can vent all you like on TP. Everyone will understand and no-one will judge. I hope you continue to post - either to help you get things out of your system or to ask a question. There's always someone around who will have the experience to help you. Take care. x

 

[Grannie G]

Hello Rachael

Don`t feel guilty for posting here on TP. We all need somewhere to offload whether we are losing a parent or a partner to dementia.

Your friends cannot possibly understand how you feel and I hope they never do. It is the saddest experience which can only be shared with those who know how it is.

Try to concentrate on your exams , otherwise your dad will feel guilt for you and he doesn`t need that on top of everything else.

Keep posting Rachael. We are all here for you. xx

 

[hopefulasever]

Hi Rachael,
I completely understand how you feel, I'm 20 and my mum was diagnosed with alzheimer's last year and I think it's even harder to deal with when we're only young and no one else seems to really understand. But if you want someone to talk to who understands and is around your age don't hesitate to contact me. I'm sure you are stronger than you believe, good luck with your exams!

 

[Bodensee]

Hi Rachael,
It is heartbreaking to read about your mother's decline and how it is affecting you, what is even more heartbreaking is that she is only 55 years of age, so young to be afflicted with neurological problems, has her GP/Neurologist given you any reasons why she has this disease and what may have caused it. At 55 years of age I would of thought that she was eligible for trials which could benefit her now before she becomes unable to cope. If you have a look on the 'raising awareness' section of this website you will see that I have put a link to a new vaccine which may or may not help your mother, other members on here are involved in trials, so there is hope. Your GP should be able to guide you about memory trials/clinics and current tests available in the UK, I hope they have ruled out prion disease as well.
You could also try your local mental health team, I am sure they will have upto date information that may benefit your mum, it does seem to me that more and more younger people are being diagnosed with neurological diseases, not as rare as one thinks sadly.

 

[Saffie]

I would just like to add my sympathy to that of others above. You are very young to have this burden thrust upon you as indeed is your mother to have to suffer in this way. Do live for the moment, the day, the occasion - don't look into the future as noone can predict that. Years ago, when my mother had Alzheimer's, we heard reports of others at a later stage of the disease and were naturally very anxious. However a consultant told my sister and I that we were worrying about things that might never happen to out mother and he was right. Make the most of the present. That way you will have many happy memories to sustain you in the future.
Good luck with yout exams.

 

[Maggie42]

Hi Rachael,
So sorry to hear about your Mum, FTD tends to have an early onset. My son is a similar age and I know how hard it is for him to watch the decline and to help care for his dad when he is home from Uni.. There is a support group specifically for FTD that you may find useful:
http://www.ftdsupportforum.com
Good luck with your studies.
Best wishes
maggie

 

[Loopiloo]

Hello Rachael

Welcome to TP and no need to apologize for your sadness and fears, and you are not being melodramtic. Feel free to write anything you wish here, everyone truly does understand. It is profoundly sad that your Mum has been diagnosed with FTD at such an early age.

I can only echo what others have said, try not to anticipate the future, concentrate on the present and make the most of it, build up those precious memories.

Very difficult for you to concentrate on your exams with so many thoughts and emotions to deal with. But you will find the strength, I am sure. We are all here for you whenever you need to unload, so don't hold back. You are not at all sefish, the decline of empathy is very hard and expecially at your age when you do need your Mum.

Good luck with your exams, Rachael, and try to think of how much your Mum, and your Dad, would want you to concentrate on your exams and would want the best for you.

Loo xx

 

[nicoise]

hello Rachael_11,

So sorry to hear about your mum - she is so young, and you too, to be having to deal with this.

Your feelings are totally understandable, no wonder you are so sad and upset, and feeling the loss of your mum as she was, and should be. Quite simply, it is very cruel and unfair.

There are several younger members of TP in your situation. They too suffer from the lack of friends in a similar situation to share these thoughts with. Perhaps come here to "chat" or offload if you'd like to. We are all here because we find ourselves having to live with dementia and understand the mixture of emotions it raises, and I hope you will find it to be supportive and informative when you need that.

As the other posters have said, try to focus on getting through your exams at the moment. Nothing will happen with your mum in the next few weeks, and she would hate for you let your work suffer.

And focus on each day as it comes, don't look too far into the future. Treasure good moments when they happen, and share gently enjoyable times with your Mum. Store up lots of love and hugs - you'll both enjoy those even when words are difficult to find.

 

[drowningdespair]

You're not selfish. Trust me I know exactly how you feel. I'm 20 and was 17 when my Mom was diagnosed with FTD. It's absolutely heart wrenching to go through and your feelings are completely normal. You're not alone. xxx

 

[tre]

Hello Rachael,
I know when my mum got her diagnosis I felt robbed and cheated and she was much older than your mum. I am sure before her illness your mum was very proud and supportive of you and pleased about your masters or first degree. If she did not have this dreadful illness she would be rooting for you now.
wishing you the best with your studies,
Tre

 

[AdAstra]

Hi Rachael,

I can relate so much to what you're going through. I hardly ever write on here, but your story just sounds so similar to mine that I just thought you might like to hear from someone who is going through the same thing. And please please don't feel bad about your sadness and even the anger, it's understandable to feel all that. I'm 23 and my mum was diagnosed 2 years ago at the age of 58. I found it so difficult going through my final year at uni, trying to concentrate on work when there was so much else going on. There was definitely more than once when I did just curl up and cry! Plus as part of my degree I had to give presentations on Alzheimer's disease, and could barely do the research without becoming an emotional wreck! But I spoke to my tutors and everyone was so helpful and understanding, maybe you could do the same thing? You might be able to postpone your exams or maybe get extra time to complete them or something. Im doing a PhD at the moment (I decided to go into Alzheimer's research, ironically I now find it helps me to cope, knowing more about what my mum is going through) so I know how much stress you are under, never mind with the added stress of coping at home.
I too feel a little alone, my friend's are amazing and always ask how things are going, but they can never really understand how things are. And it's so hard for people to say anything that helps, as they can never really tell you everything will all work out in the end, so I feel bad burdening them with all my woes! If you ever need to talk to anyone, feel free to get in contact. And please don't feel guilty about how you are feeling!
All the very best with your exams, and with everything else.

Take care,
Aisling

 

[AmyGS]

Same!

Racheal,

I am so moved to read your message ..... and those of other people in similar situations.

My family is similar to yours - mum was diagnosed with FTD a couple of years age, she's 57, and while I am 30 my brother is your age and I worry that it's unfair on him to be gradually loosing his mum so early. I have a sister too and my mum and dad live together - I don't know where we would be without family support and good friends around!

I totally understand what you say about friends being sympathetic but not really understanding - why should they? It's such a complicated illness and up until a couple of years ago id never heard of FTD.

Anyway drop me a line if you want - I'm sure we'll be dealing with many similar situations.

Take care

 

[cornish]

Hi there

Im Ryan 28 from Cornwall, my Dad of 53 got diagnosed with FTD last Augest, he has got worse quick, but I am finding it easier to deal with now, Its just me and my Mum really as my Brother is no use and lives his own life and chose to ignore his responsibilaties. I find it easier If I keep busy, I do loads of Cycling with my local club so always busy. Its become a way of life now and I have accepted whats happening. Although today being fathers day was difficult as normal presents I would have got him before would not be any good this time as he has no interest in anything. Anyway chin up Tiger, live your life to that full as well as take care of your mum

 

[rjm]

Hi Rachael,
I'm sorry to hear of your mum's diagnosis. As others have said, you have nothing to feel bad about for the way you are feeling. your reaction is perfectly normal and understandable. It is a horrible and most unfair situation for both of you and the rest of your family. When my wife was diagnosed our four girls were all in their 20's, three of them still in school, it was hard on everyone. While your friends are never likely to fully understand what you are going through they can be a big help by providing you with the "normal" life that a twenty year old student should have and keeping you from becoming completely immersed your other problems. Always remember how proud your mum would be of your accomplishments at university and work hard to meet those goals. Good luck on the exams!

 

[Rachael_11]

Thank you so much

I honestly cannot thank you all enough for your love and kind words. I am so sorry I have no written sooner but while it is so lovely to have such kind support it also makes me sad that it is needed. If that makes sense. But please know when things were so tough during exams I read and re read your responses and they made all the difference. I got through my exams! Am very proud f myself for doing so and you were all right that that is of course what my mum would want too. Thank you again I really appreciate you all taking the time to share your thoughts and I will definitely be back. I can only hope that I am able to return the favour for others. Xxx