my dear Dad

KaC

Registered User
Feb 26, 2006
32
0
surrey
my dad was diagnosied last June he has for the last few years been forgetful but managed at home on his own with my help.
most evenings he would come round to me ( he lived 5 mins walk away) have acup of tea and achat and sometimes stay for supper. he phoned one eveing very agitated and sounding very scared I went straight t see him and could see that he was very confused and hallucinating that there were people in his house. he was admitted to hospital and hasnt been home since. Dad was in a care home close to me so I could visit and take him out a few times a week. but his demetia worsened and he became aggressive and the home couldnt cope and he was sent to a dementia unit in hospital in Nov for assesment. since being there he deteriorated dramtically. on new years day we went for a good walk round kew gardens had tea out and had a lovely time and saw glimmers of Dad. but now he can't walk -he can only shuffle, he cant feed himself and doesnt know who I am and drifts in and out of sleep. I cannot stop crying and thinking how much I miss him and how much seeing my Dad like this hurts
my Dad and I have always been close he was my best friend and has always been there for me he would come on holiday with me and the children and was round every weekend gardening, doing puzzles, playing games teaching my boys all sorts of things ( they miss him too especially my 11 year old who was especiallyclose to him) everything I do reminds me of him
I didnt think that the dementia would make him deteriorate so fast
 
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Amy

Registered User
Jan 4, 2006
3,454
0
Hiya KaC
I am so sorry to hear about your dad. I cannot say anything that will make you feel better, or it hurt less. He is being lost to you before your eyes, and you need to grieve. My mum is in a similar position to your dad. She doesn't appear to know me, but I still know her, and maybe somewhere in her depths she is aware of who I am, but the dementia stops her showing it. Maybe it is the same for your dad. All we can do is be there for them; love and cherish them as they are, for they are still our parents whom we love dearly. And I think we have to accept that it is going to hurt, but that is the cost of loving.
Take care. Thinking of you.
Amy
 

daughter

Registered User
Mar 16, 2005
824
0
Hi KaC,

I know that every one's situation is different but I did see similarities between your Dad and mine when I read your post. Earlier this year my Dad was also in a care home not far away, when he became aggressive and the staff were unable to cope. He was then sent to a dementia unit for assessment. His aggression was controlled by medication although it did make him quite drowsy. We pushed for him to be returned to the care home where he has now been for another year, and the aggression medication has not been required for most of that time.

What I wanted to ask was, has your Dad stopped being aggressive? Is there an outcome from the assessment? Is it possible the medication could be affecting him? In which case, perhaps the home could take him back and the medication reduced now? I'm sorry if I'm being rather direct and if I've mis-understood your situation. I certainly don't want to give out false hope, nor give you extra worry, but I just wanted to let you know it is possible (as in my Dad's case) that there could be an improvement.

That was the practical bit - the painful emotional part is so much more difficult to deal with. I'm really sorry about your Dad and I understand very well the part about your boys missing him because my son was also very close to his Grandad.

Best wishes and thinking of you,
 

KaC

Registered User
Feb 26, 2006
32
0
surrey
Dear Hazel

yes dad has stopped being aggressive - but then at the moment he is not capable of anything and is completely dependent .
I was concerned and hoping that the medication was making him drowsy and after looking at this website last week asked the consultant to reduce the sedative and was hoping for an improvement it has been three days since they reduced the medication but there has been no change as yet - did it take long to see a difference in your Dads case? I am hoping that once he is an care home where hopefully the care will be better and closer to me (at the moment he is a 40 minute drive away so I can only get to visit weekends) he will improve but maybe I am just being too optimistic

think of you Karen
 

Sheila

Registered User
Oct 23, 2003
2,259
0
West Sussex
Dear KaC, so sorry to hear how quickly your Dad has gone down hill. If it is any thing to do with the medication, it should be obvious after a week or so, it was when my Mum had too strong a dose of a particular medication used to calm her. The loss we all feel to see them fading in their ability to communicate with us is so awful I know. Can't make it go away, but wanted to say I am thinking of you and sending you a big hug. Please keep posting. Sharing your feelings can help a lot. Love She. XX
 

daughter

Registered User
Mar 16, 2005
824
0
Hi KaC,

I am sorry but I can't honestly say I remember when the real drowsiness wore off in my Dad but I know he became much more subdued generally after his hospital stay. I do hope you'll be able to get your Dad to the care home nearby, I know how much difference it can make to visiting and for a more personal care of your Dad. I guess time will tell. My fingers are crossed for you.
 

KaC

Registered User
Feb 26, 2006
32
0
surrey
thank you for your kind thoughts and messages

I have found it a great source of comfort up until now I have felt very alone and bewildered with my Dads illness.

warmest regards

Karen
 

Margarita

Registered User
Feb 17, 2006
10,824
0
london
Kac

Hope I do not sound like I am interrogating you but

What medication is your dad on? How old is your dad?
 

KaC

Registered User
Feb 26, 2006
32
0
surrey
Margarita

my dad is on amisulperide/ aspirin a drug called cyperterone (not sure of the spelling) and folic acid

they have reduced the amisulperide since last Friday after I found this werbsite and read about amisulperide being a sedative and asked the consultant if they would consider reducing the dose

the dose was doubled a few days before he "tried again" at the care home but he was only there five days before he was readmitted into hospital as they still couldnt cope
it seems it has only been since he went back to the care home and was sent back to the hosptial that he has deteriorated so quickly - the hosptial think he may have had more mini strokes
he is 75

Karen
 

Margarita

Registered User
Feb 17, 2006
10,824
0
london
I did a search for amisulperide maybe the spelling is wrong please forgive me if I have got it wrong but it keeps coming up a treatment for Schizophrenia ?

Just that before my mother was diagnosed our family thought that mum was just schizophrenic like my brother & my dad was no help when he was alive ,because he just keep saying your mum is mad ,but mum had a brain scan & was told it was AD

I have a brother that is schizophrenic & is living with me at the moment, till he gets housing support & I find that his behaviour is similar to AD as in being forget full in hygiene ,cooking ,& remembering .

Has your dad been offered a brain scan? my mum went down hill likes you dad ,but onces on the right medication after the brain scan ,Her quality of life has improved & her anger has stop more in control
 

KaC

Registered User
Feb 26, 2006
32
0
surrey
amisulpride

yes- I was first alerted to this drug and possible side effects after seeing this web page last week and after reading it asked the consultant if the dose could be reduced which they agreed to last Friday
my Dad was showing a lot of the side effects especially the shakiness, unsteadiness and stiffness of limbs.

I visited Dad on Sunday hoping to have seen an improvement but maybe it was too soon as there hadn't been any improvement - except the shakiness has subsided.
I am going again tomorrow to visit and hopefully after week with a lesser dose he may have improved

Karen
 

Margarita

Registered User
Feb 17, 2006
10,824
0
london
So ok they are treating your dad with Drugs for treating agitation, aggression and psychotic symptoms

Major tranquillisers (also known as neuroleptics or antipsychotics) are drugs that were originally developed to treat people with schizophrenia.
The use of major tranquillisers in people with dementia remains controversial and clinical trials are in progress to better determine their effectiveness. At the moment, none of these treatments are specifically licensed to treat people with dementia, although they are frequently prescribed to treat symptoms including agitation, delusions (disturbed thoughts and false beliefs), hallucinations (seeing and hearing things that are not there), sleep disturbance and aggression.










Major Tranquillisers


Amisulpride (Solian)
Chlorpromazine (Largactil)
Fluphenazine (Modecate)
Haloperidol (Haldol, Serenace)
Olanzapine (Zyprexa)
Promazine (Promazine)
Quetiapine (Seroquel)
Risperidone (Risperdal)
Sulpiride (Dolmatil, Sulparex, Sulpitil)
Trifluoperazine (Stelazine)
Zotepine (Zoleptil)
Zuclopenthixol (Clopixol)


So why are they not treating your dad with dementia dugs yet? I know this is a Sensitive subject, & do not want to upset you, but the way NICE is trying to stop drugs below in this country it does make you wonder .

In Spain, & Gibraltar, USA, you do not have the same problem in getting the dugs below







Antidementia drugs



Donepezil (Aricept)
Rivastigmine (Exelon)
Galantamine (Reminyl)
Memantine (Ebixa)
 

KaC

Registered User
Feb 26, 2006
32
0
surrey
Hi
my dad had improved on Friday which was a great joy to me and my son
" is that my Jamie " my Dad asked when he saw Jamie - which made my sons whole weekend and the though t of hearing those words bring tears to my eyes
the downside was that Dad was very emotional when we left which was very hard to bear.
he goes to"panel" on wednesday which will decide if he is eligible for continuing care and hopefully his discharge into a more "homely" environment
I have three appointments on thursday to view prospective homes and I am anxious and aware at the thought of choosing the "right" one
my Dad has lost a lot of weight probably due to the fact that he cannot feed himself ( it took an hour on friday to feed him) and if it always takes an hour it must be hard for the staff to find that amount of time, hopefully when he is nearer I can go in more and help feed him.

Margarita
I do not know how they choose the drugs i know he was very agitated and aggressive in the second care home, I am hoping that now the agression seems to have subsided and there does not seem to be any reoccurence of the aggression since reducing the amisulpride that they may reduce it further

best wishes take care
Karen
 

daughter

Registered User
Mar 16, 2005
824
0
Hi Karen, that's great news, so glad to hear your Dad has improved and how lovely that he remembered your son's name. Re the choosing a home - we only had to visit one to know it was right for my Dad. If you're going to see three, I expect you will get a 'feel' for which one is right. Good luck!
 

KaC

Registered User
Feb 26, 2006
32
0
surrey
thank you so much for your kind messages they are a great comfort to me

my Dads continuing care panel was cancelled (again) as they are still adjusting his medication

they have decided to reduce the amisulpride completely so hopefully he will improve more but I do not want to get my hopes up

went to to see three care homes and was dissapointed not to get a "good feeling" but maybe the next

best wishes
Karenx
 

KaC

Registered User
Feb 26, 2006
32
0
surrey
improvement

saw my Dad yesterday after him being off amsiulpride completely for three days

what a difference he was more alert and could hold a conversation although quite fragmented but a he was lot more lucid generall


Karenx
 

daughter

Registered User
Mar 16, 2005
824
0
Hi Karen,

That's great! I'm so pleased that you have seen an improvement in your Dad. I hope you find a home that you feel happier with soon - keep trying!

Best wishes,
 

gloops

Registered User
Mar 6, 2006
3
0
60
chesterfield derbyshire
dear Kac

I have just read your words with great sadness .The simialarities to my situation
and yours are very close
My mum lived near to us ,spent lots of time with us and our two boys aged 12 and 14.
The stay in the home around the corner was shortlived because she too began to hallucinate and was very distressed.
It necessitated an admission to the mental health ward.
My grieving for my lovely mum and all that was began in earnest.
I really feel your anguish ,and Imso sorry for
you.
Keep telling your Dad how much you love him.Still talking and mantaining those familiar ways made all the difference to my mum, as though your keeping those pathways alive.
A positive thing out of this sadness is the reaction now of my boys ,who have lived with their Nanas dementia a number of years They show great understanding and respect
I remember hearing my little one telling his friend that his Nana "just had a poorly brain"
No-one can ever make it betterfor you .I know you just want your Dad back ,but
Ill be thinking about you and your family
Gloops
 

KaC

Registered User
Feb 26, 2006
32
0
surrey
Dear Gloops

thank you for your message TP has brought me so much comfort in the short while I have been a member

I, like everyone who has a someone close with ad miss my dad more than I could ever have imagined and seeing him cry with bewilderement breaks my heart a million times every time I see him

my younger son says he looks forward to visiting Grandad but is also anxious if he will recognise him or how bad he will be - he was very clsoe to his grandad, they would garden togetherand grandad never seemed to tire of reading bedtime stories even when my dad became worse jamie would take care of him taking him to the 'mens' and generallly looking after him. one of my fondest recent memories was on new years day when my dad turned and said to jamie " I always feel safe when you are around Jamie"

my thoughts and prayers to everyone who has suffered and is suffering at the hands of this so cruel illness

Karenx