I am only 40 and my mother has been recently diagnosed with vascular dementia

[ClaireT]

I feel very out of my depth with the diagnosis. My mother and I were literally giving the diagnosis and then provided with heavily photocopied leaflets about whom to contact. My doctor refused outright to provide me with any counselling (3/4 month waiting list) and told me to get in touch with Age UK and the Alzheimer's Society. I feel that I have had to be extremely pro-active about getting any local/dememntia care information and feel like I am treading water a lot of the time. Frankly I am permantley exhausted and this does not help with my work, (lathough I only work 4 days a week.) I also feel quite isolated even though my mother has only early stage dementia. I am frightened and scared of what is to come, especially as my mother could live for another 15 years and all ready I am finding caring for someone with this illness very difficult.

I do not know anyone else of my age who is caring for a relative with dementia. My mother has been widowed for over 20 years and is an only child. Any help or contact with carers of a similar age would be fantastic. I have found that many of the support groups/cafes are on the days when I work - so this forum is the only way I can contact people.

Life has changed so much over then last year and I realise this is only the beginning of a very long road.

 

[BeckyJan]

Hello and welcome to Talking Point although I am sorry you need to be here.

Your Doctor cannot do much more but recommend as he has done. It may be worth you having some time off (a day or two) to contact the Alzheimers Society local branch, Age UK, Admiral Nurses, Crossroads or similar charities in your area. You can find your local branch of AS here. Some have Dementia Support Workers - and if so one could visit your Mum at home and hopefully give some useful advice.

If you browse around the forums here you read about other experiences and how people cope. It is a hard difficult journey but with some persistence and patience you could find some support.

I am sure others will be along soon with other thoughts.
Best wishes

 

[juniepoonie]

hi Claire welcome to TP an im sure you wont be alone for long as im sure that there will be others in your situation that will post back to you. how very sad you must feel an angry too I expect. its a very lonely place when you don't know where to turn for help. there will be help out there for you an mum but you have to ask for it. come on here whenever you need company or a rant to let off steam . has your mum been given any medication or do you have appointments to go back to memory clinic? We thought we could get by without to much help but all of a sudden things get worse an you realise your not coping so I would suggest you find out about as many resources of help as you can even if you don't feel you need them yet. goodluck to you an mum . juniepoonie

 

[Brucie]

Hello ClaireT,

Welcome to Talking Point. I hope you will find the advice you need here - all kinds of experience are represented.

Talking Point was needed originally just because there was nothing else similar that was practical that people could turn to, and it serves a similar purpose today, though there are more services about. Talking Point tends to be more realistic about this awful condition, and not to try and gloss over the pain. That, I think is helpful, because it is something really important to realise that you are not alone, but also to learn what your path may be like, and how others have managed it - or not.

One tends to have to be proactive as the help out there is still, years after I was first involved in my wife's care, poorer than it ever should be. I am now helping care for someone else who has vascular dementia. One might call me a glutton! The point is that it IS possible to care and not burn out totally, but you WILL need help.

I recognise your plight - I was 43 when my wife started her first symptoms, and she was only a little older than I was.

Exhaustion and isolation tend to go with the territory, unfortunately.

You sound very level-headed and that is important.

For the moment, I'll leave my contribution at that, but wish you and your mother the very best.

 

[Anongirl]

Hi Claire. We are in similar boats it seems. I'm 40, my mum was diagnosed last year at age 65. She lives alone and I try to support her the best I can whilst juggling my time with work (4 days too!), my husband and two children. I don't live particularly close to her. I'm exhausted much of the time and a lot of it is mental exhaustion from worrying about mum. I know she's getting worse now and I'm struggling with it.

It seems very daunting at the start. I hope you can find support. My mum now has a carer in the morning and evening. I and she couldn't now cope without them, I have no doubt of that.

I found this forum invaluable for advice and over the past year has helped me to find my way through and continues to do so. I hope it can help you too.

It is isolating. I couldn't agree more. You're not alone though, you can be sure of that xxx

 

[angecmc]

Hi ClaireT, just wanted to welcome you to this great forum, sorry you have had to find your way here though I can not offer anymore advise than what others have already given, just to say keep posting, even if you just want to let off steam, nobody judges you on here. Also there are a few other members who are on the younger side, so I am sure you will be able to relate to them, but all the members will try to help you when you need it, take care xx

Ange

 

[Saffie]

I do not know anyone else of my age who is caring for a relative with dementia.

Greetings Claire and welcome. There is no need to feel alone whilst Talking Point is here as there are quite a number of people of your age, and younger, with parents who are suffering from dementia of one kind or another. I, myself, was younger when my mother was suffering and then died, soon after her 73rd birthday, a number of years ago.
Whatever age we are, it is a difficult and, at times, heartbreaking time and the support you will find on TP will help you cope. Just keep posting and people will respond. Good luck.

 

[Auntiep]

Hi I'm in my 40s too (Mum has Vascular dementia), and know how you feel. It can be lonely, but you're not on your own.

Hope things are more settled

P x

Sent from my GT-I9195 using Talking Point mobile app

 

[CeliaThePoet]

Hello, Claire, I am 44 and having been dealing with my mother's vascular dementia for 5 years. She is 84, soon 85, and in assisted living. I'm also an only child and she has had no care from others, just me. How far along is your mother? Vascular dementia is so hard because the deficits are so unpredictable and vary so much from person to person. What problems are you noticing?

 

[WGA]

Hi ClareT, I'm only 20 and caring with my mum for my dad with dementia. He's also in his early stage and it's really really hard. There always seems like an endless list of things to do and people to contact. But this forum is so good; there is so much support from everyone on here so post and offload as much as you need to! You're not alone, there's a big family of carers for people with dementia on here

 

[Lizjg]

Hi Clare I'm 51, but my Mum was diagnoised with vascular dementia about 8 - 10 years ago (aged 66 -68) so I know what you are going through. TP has been a great help to me over the years, offering help and advice. One thing about this site is that people really do understand how you are feeling and what you are going through. If you want somebody to talk too send me a private message (PM). My advice to you is enjoy the present and spend as much time as you can with your Mum. It is a long road, but you get through it by taking it one day at a time.