Mum, 61, just diagnosed

[einstein1]

First Post Thoughts

Hi, this is my first time on the site and it is so nice to read all your posts as I can identify with all of them.
My mother is 60 and was diagnosed with alzheimers three years ago. It has been a fairly rapid decline, and myself and my father have been on a huge learning curve.
In response to some of the issues raised I would always say that it is so important to make the most of the time you have. I completey agree that going on holidays can be extremely diffcult and there is a time when it becomes impossible, but make the most of the time you can go away, just stick to some rules. Avoid over tiredness, take things slowly and take time for adjustment to surroundings. One thing we have found is if you want to eat out do it at lunch time when tiredness is less of an issue.
Try to avoid overly busy, bustling places as sometimes noise can be a trigger, and a word to the wise, make sure it is difficult to get out of the room, especially in hotels as night time wandering can be extremely dangerous in unfamiliar places.
I would also like to respond to the eating comments. My mum was always a picky eater with little appetite but now eats anything put in front of her with a particular love of all things naughty. I believe in the grand scale of things, it is not something to worry about, plus typically alzheimers patients do burn off a lot of energy as they tend to wander more. I think that if chocolate is something they enjoy, then it's always wonderful to see them happy!
My thoughts go out to all of you but it's nice to know we are not alone.

 

[secclesh]

Sugar thief

Hi
I've just found this site. My Mum has just been diagnosed at 63 with Alzheimer's, after three initial attempts to get the GPs to listen. Mum is in the early stages, but she has become a sugar thief. She snatches at sweets when offered, hoards and hides them, and Dad says he has to watch her like a hawk in shops as she will steal chocolate and stash it in her handbag. He is terrified she will be accused of shoplifting. I guess its early days, and as a family we have a lot to learn. Other than this, she LOVES fussing over my dogs and gardening, and is quite happy most of the time

 

[Kevster1976]

Hi All,

I hadnt checked this site ina while and just logged on and saw some new comments and words of support, particularly with regards to our planned trip to France with mum.

Strangely enough my sister took her to france with her husband and my dad.... mum was fine!! Wandered around a lot but seemed to enjoy her time there. We are very lucky in that my sister has a house there so we wont be staying in strange hotels. Mum has also been there a couple of imes so probably feels a bit more comfortable that she might.

In general mum is doing okay, she has bad a good days but on the whole seems quite happy. She pads about the house constantly and eats as much cake as she possibly can but still loves listening to westlife on her ipod and sings very very loudly. Bought her the mama mia soundtrack last weekend which has also become a firm favourite,

My sister and I took mum on a 10km charity walk this morning, thinking it would be a nice long walk for mum and all for a good cause. Not sure mum enjoyed it she didnt say much and seemed a bit like a little kid being dragged around by their parents!! How things chane, I can remember my mum dragging me kicking and screaminf to swimming lessons every week and telling me off if I didnt give 100% in any of the sports I compted in!! We took the mickey out of her though and made her laugh abot how slow she was going. We beat 5 people out of a field of 2500 if you're interested!!! All very funny as we came across the finish line with everyone packing up and going home!!

Anyway sorry for long email. The sun is shining outside, mum was laughing when I dropped her off at home and dad seemed genuinely happy... good day today!!!

thanks again for everyones advice and support.

 

[Daisy01]

Hi Kevster1976,

My Dad has had demantia now for two years and alot of what you have said on how your Mum is sounds so familiar, Dad was having strange hallucinations and his behavior changed rapidly after being diagnosed, and after lots of investigating we found that his medication was to high and actually causing most of the problems. So its worth looking into if you can. As for the holiday you know your Mum and if you feel it could be a few days of happiness (although hard work!) then you should go for it as you dont know when youll get the time again and if its somewhere you visited before and the decor hasnt changed she may still have the image in her memory somewhere, hope it works out which ever way you go. take care Dasiy01

 

[makalu]

Dad 60 years - Semantic dementia

Hi, I am new to this forum, my dad is 60 and has not been diagnosed yet but Drs keep mentioning semantic dementia. Hes had all the ecg, mri, lumbar puncture etc but STILL waiting for diagnosis 3 months later. He has deteriorated so quickly, within the last 6 months, he is now so confused cant be left alone, bed weeting, hallucinating, trouble swallowing and trembling - no one will help us, hes diabetic too, so having problems administrering insulin, aggressive towards mum his main carer. can anyone advise me as to what care we can get where can i go to get help? we think hes been ill for 5 years if not more, but hes going downhill so quickly, its like a lights been switched out. Any info gratefull received, and thank you for all your honest posts its frustrating but reassuring that there are other people out there looking for the same answers.

 

[Kevster1976]

Hi Makalu

So sorry to hear about your dad, but have some experience of how quickly people change with this horrible conidtion. I can only think of your local Alzheimers society office? Maybe get in touch with them and see if they can offer you support, possibly even some help caring for your father in order to give your mum a break?

Please post some more if you want to talk or get anything off your chest.

Take care

Kev

 

[icare2]

early onset,there is lots of help there

like yous all on this site with the diagnose of this illness,with your mums.dads etc..me and my family were and went through this,that was 8 years ago,for the first 5 years we all thought we were coping,and we were,until it went beyond our control,my wife was only 54 when diagnosed, but now I look back she had it long before that,but she was hiding it to us all,but thats the natural way this illness goes with trying to be as normal as everyone at the time,but here is a few GOOD TIPS AND HELP THAT WE NEVER HAD AT THAT TIME,OH!! FORGOT TO MENTION WE STILL HAVE MY WIFE AT HOME,AND SHE IS DOING FINE,WITH THE HELP THAT I AM GOING TO MENTION JUST NOW..

(1) FIRST STEP AFTER BEING DIAGNOSED, GET IN TOUCH WITH YOUR LOCAL SOCIAL WORK DEPARTMENT,AND TELL THEM YOU NEED A SOCIAL WORKER THAT HAS EXPERIENCE WITH THIS ILLNESS, THE SOCIAL WORKER IS THE FIRST PERSON THAT CAN GET ANY HELP,AND ANY FUNDING!! THATS AVAILABLE,FOR YOUR NEEDS WITH FOR YOU AND YOUR FAMILY COPING WITH THE ILLNESS, AS THERE IS DIFFERENT FUNDING DEPENDING OF THE AGE OF THE PERSON THAT HAS THE ILLNESS..

(2)ANOTHER VERY GOOD HELP THATS BEEN GREAT FOR US AND PUT US ON THE RIGHT TRACK, WAS OUR LOCAL PRINCESS TRUST ORGINIZATION,YOU WILL FIND THEM IN ANY YELLOW PAGES IN YOUR AREA..

(3) ALSO IN OUR OWN EXPERIENCE THE LESS MEDICATION THE BETTER,MY WIFE IS NOW JUST ON A LOW DOSE OF ONE TABLET OF 5 MG. OF DIAZAPAM 4 TIMES A DAY,SHE WAS ON A ANTIPHYSCOTIC DRUG CALLED HALOPERIDOL (HALDOL)BUT THAT JUST COMPLETLY ZONKED HER OUT,AND IS NOW BEING TAKING OFF THE MARKET..

NOW THANKFULY WE STILL HAVE HER AT HOME,AND SHE GETS 121 CARE,FROM HOME SUPPORT CARE COMPANYS IN OUR AREA,WITH THE HELP OF THE FUNDING THATS PROVIDED THE INDEPENDANT LIVING FUND(I.L.F.)
THATS BECAUSE SHE IS UNDER 65,ANYONE OVER THAT AGE GETS DIRECT PAYMENTS,THAT IS A DIFFERENT GOVERMENT AGENCY,BUT YOUR SOCIAL WORKER SHOULD KNOW THIS,HOPE THIS HELPS SOMEONE.. BEST WISHES TO ALL

 

[sue4]

My Mum was diagnosed with Lewy Body the day after her 64th birthday so I know how hard it is.She suffers from hallucinations and often thinks my children are with them.It is very difficult for my Dad and we try to give him lots of breaks.On a positive note we have been away on 3 summer holidays together since her diagnosis and have had a lovely time.We went as a family so Dad had lots of support,we haven't tried going abroad though.Mum is asking now about this summer,we'll just have to see nearer the time.Take care of yourselves. Sue

 

[makalu]

Haloperadol

HI Everyone.
Just a note about Haloperadol - my dads currently being prescribed this and he is zonked out big time. I note you said it has been taken off the market - Why is he still being prescribed this?
Hes got a UTI now too so is on anti-biotics to treat that. Im so confused, wheres my dad gone?

 

[jenniferpa]

Makalu - no it hasn't been taken off the market - if it had been he wouldn't still be being prescribed it. Whether it's appropriate is another issue entirely - on the whole these drugs can be problematic for people with dementia, but sometimes there is no other choice.

Have a look here

http://besthealth.bmj.com/btuk/conditions/10139.html

 

[icare2]

hello all new friends

like yous all,we were put in the situ.when my wife jane was diagnosed with the A.D.,she was only 54 at that time,yes very young,but!!,we did not have a clue,what to do what was there,i.e.

LOCAL SOCIAL SERVICES.. THE FIRST POINT OF CALL!!,AS YOU WILL NEED A LOCAL DEPARTMENT SOCIAL WORKER!!!!!!,BEFORE YOU CAN GET ANY HELP,THATS NEEDED FOR THIS ILLNESS..

.. I DO NOT KNOW WHY THE MODEREATORS OF THIS SITE DOES NOT MAKE THIS A PRIORITY!!!!!,OF THE FIRST PORT OF CALL,AS WITHOUT A LOCAL SOCILAL WORKER!!!! YOU WILL NOT GET ANY SERVICES,AND ANY HELP THAT IS THERE FOR US!!!AS ALSO I AM A CARER,AND IF I HAD HAD THIS SOME 8 YEARS AGO,IT REALLY WOULD HAVE MADE LIFE EASIER FOR ME,AND MY FAMILY!!,we now get 58 hours help,20 hours paid, from the local socilal work dept. and 38 from the princess trust..(ILF)(INDEPENDANT LIVING FUND)FOR PEOPLE THAT ARE UNDER 65,WE HAVE NOW STARTED A MONTHLY MEETING WITH ANYONE THATS BEEN EFFECTED WITH THIS ILLNESS,CARERS,SUFFERS,JUST DIAGNOSED,OUR LOCAL CPNs,WE ARE IN NORTH LANARKSHIRE AREA, IN SCOTLAND,AND WE ARE OPEN TO ANY HELPFULL SUGGESTIONS FROM ANYONE,THATS INTERESTED

 

[cgf]

Hi,

My Mum was diagnosed with Alzheimer's at 59 and she is now almost approaching 62 and her decline has been rapid. I have secured a placement in a residential care home and she is due to make the move next week.

I can relate to the concern over disruption and a change in routine. My Mum becomes very disorientated at change and can become upset and almost childlike in her reaction to having to return to her own home when she has been with me for most of the day or if there has been a change to her routine and will ask the question 'why do I have to go home' or 'can't I stay with you'? I have a family dependant on me and things can get hard when I have to split myself in many different directions. Friends will just 'pop in' to visit but can't understand why that will have such an impact on Mum's routine but it does and it completely throws her.

The move into residential care has been the hardest decision that, we as a family, have had to make. It has a dominoe effect on the whole family and the different and very significant relationships we all have with my Mother. To me it seems to be the beginning of the end and makes things seem that more final.

Whilst Mum is still living at home I can sometimes be blind to what is going on and paper over the cracks all that more easily but once she enters residential care the whole situation will become more pronounced and seemingly more evident. My Mother lives alone and doesn't have the wonderful support of a partner so it makes her situation even more vulnerable and I know the decision we have made is the best one, as we have for so long been lucky in maintaining her independance at home but I do fear that our luck will run out and she will come to harm and I could never forgive myself for that.

Times can be hard but Mum and I spent a lovely day together today and spent most of the time giggling at silly things and just enjoying the lovely weather and the Christmas holiday and these wil be times that I will remember for along time.