Needing emotional support

[Knocked46]

Devastated Mum Laura
I am 83 and my single 58 year old daughter has been diagnosed with early onset alzheimers due to slight brain
shrinkage. It is not familial and cannot be explained, it is so rare. I and my 93 year old husband are struggling to
come to terms with the diagnosis and my daughter spends a lot of time crying and saying I'll die soon. She has been
offered Aricept although her troubled background ticks all the contra indications for this drug. This is a dilemma
although she only weighs six and half stones, her small frame is healthy and strong. The one important dimension I
feel is missing is emotional support for all of us, especially my daughter. To meet other people of a similar age who
are coping well and would be friends would mean the world to us. It is all so isolating. One would think that such
rare cases would be flagged up for further research, but, no, just Aricept. How will they ever find a cure if this is the
complacent approach to such rare cases? So far she has been taking coconut oil (Dr Mary Newport). I feel the
medical profession still has to learn that the emotional side of an illness or diagnosis is probably the most important
factor to be tackled--we are not robots, or are we? Devastated mother, Laura.

 

[TinaT]

I'm so very sorry to read of the situation you and your family are facing. My husband was in his fifties when he was diagnosed and I remember the extreme isolation I felt because all the carer groups in my area dealing with dementia support were dealing with dementia in elderly people. I felt out of place because my husband was much younger. I then joined some local mental health groups but again found that the majority of people were dealing with mental health issues connected with much younger people than my husband and the empasis was on getting their relative well again, which I knew could not happen in my husband's case.

You and your husband are in a similar position, more so than I was when seeking supprt, because you are not as young as I was when I was seeking support and may have difficulties getting out and about to find such help, plus the fact that because of the rarity of the disease, there will be very few other carers with experiences which you can relate directly to
There is practical help you can get but I don't know how much of this you may have already obtained . I'm sure here on this site that you will get support and compassion for your situation and possibly a lot of practical help from others in similar situations.


xxTinaT

 

[Saffie]

I am really sorry but I have no experience to draw upon to be able to offer you any advice as Tina has done, but I just want to say how sorry I am that this has happened to your daughter. I have a daughters in their forties and can appreciate how devastated you must feel by your daughter's illness. It just seems so very wrong and so unfair. Please keep coming on to TP as you will find emotional support here.

 

[nicoise]

Dear Laura,

Hello and welcome to Talking Point.

What a sad story to read about your daughter; no wonder you are devastated by her diagnosis. As you say, we are not robots - but sadly the emotional aspects of such a diagnosis are often not very well addressed, and sufferers and families are often left to ask for support rather than being offered it, as might be the case with cancer where there is a support framework in place.

This forum is a good place to find information, and emotional support, amongst other people who understand what you are going through. I hope it might prove to be one aspect of emotional support that might help you feel less isolated. You can come here at any time of day (or even night at times) and find someone here to "chat" to, or just read of others' stories and find comfort that we are all in this together, despite the individual differences, living with a version of dementia.

Best wishes

 

[rjm]

Hi Laura,

I'm sorry to hear of your daughter's diagnosis, it is rightly devastating for your whole family. You are so right when you say that the emotional support is missing from the medical side - but it is very strong in this forum and some local groups. My wife was diagnosed at age 48 and, even though we live in Canada, I ended up on this forum as it was the only place I could find support and understanding for what it meant to be caring for someone who was affected at such a young age.

I would encourage you and your daughter to make the most of every day. Whilst this terrible disease is progressive, and there's no changing that, there are still plenty of opportunities to have an adventure or just a laugh or two and make the most of what you have.

Best wishes,

 

[Bodensee]

research, some helpful links

Hello Laura,
I am sorry to read about your daughter this is heartbreaking for you and your family.
I have found some websites that offer research which may or may be of support to you:

http://www.ukctg.nihr.ac.uk/search?...uiting&resultsfrom=1&resultsto=10&pagesize=10

http://www.ukctg.nihr.ac.uk/usefulLinks.aspx

http://slam.nhs.uk

http://www.kcl.ac.uk/iop/depts/neuroscience/research/areas/alzheimersdiseaseotherdementias.aspx

 

[FiveWords]

I am so truly sorry to hear about your daughter. My dad was diagnosed with dementia at 59 which was hard to take, but for it to happen to a daughter must be extremely hard indeed. I dont have any words of wisdom but just to say you are not alone and I am sending you a lot of love. X

 

[Knocked46]

I would like to say a big thankyou to everyone who answered my worries. It is only in this way you realise how
many people are affected by this terrible illness. Every day when I am shopping I see really old people, some in
wheelchairs, some with sticks, yet still managing to cope with their every day lives well, and you can't help wondering
why would this happen to a young person when they appear to be normal. It sounds weird maybe but I would just
like to see scans of these ( clearly functioning well) elderly brains, including mine. Just to compare--and how else
will there ever be any progress in understanding this life destroying illness if we are not curious as to why and how
an old brain functions better than a younger one which had been perfectly fine until afflicted by alzheimers.
Thank you all for being there--we must all be more curious and questioning. Yours, Laura (83 year old).