• Expert Q&A: Rare dementias - Tues 3 March, 3-4pm

    Our next expert Q&A will be on the topic of rare dementias. It will be hosted by Nikki and Seb from Rare Dementia Support. If you have any questions about rare dementias, they will be here to answer them on Tuesday 3 March between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

Quick update

jackie1

Registered User
Jun 6, 2007
238
Cheshire
After going for our eldest son (11) 2 more times John went into respite for 10 days on Friday. They are going to look at his medication to see if anything can be done.

I am feeling a mixture of guilt and relief. As dreadful as it sounds to say this, we had a lovely weekend. To see our child looking happy for the first time in so long brought tears to my eyes.

I know I have done the right thing as the childrens safety must come first I just don't know where we go from here.

Jackie
 

Vonny

Registered User
Feb 3, 2009
4,577
Telford
Hi Jackie,

You probably won't want to do this, but if you involve children's SS you are far more likely to get more help with John. They are usually quicker to deal with a situation where a child is "at risk" than an adult. Only you can tell if this is what you need to do but as you say, your children's well being is paramount. They are just starting their lives and are impressionable enough in a stable environment let alone having to walk on eggshells the whole time.

It doesn't sound in the least dreadful that you had a lovely weekend. I'm so pleased for you and hope that you enjoy the rest of the respite.

Take care

Vonny xx
 

trackburn

Registered User
Mar 17, 2009
3
Swindon
How cruel is this disease!!

Hi I am a new member in desperate need of some support from people who understand what I am going through! My Dad who is 84 has been suffering from Dementia for 4 years although things rapidly declined from last year. My dad become very aggressive and hard to manage at home (my parents live with me) and on Christmas Eve the crisis team put him in the Victoria Centre (mental hospital) and he is still there! Me and my mum really struggled with the guilt of him being in there particularly because when he was admitted he reacted badly and we wasn't allowed to visit for a week. He did appear to settle down in the home and we had some great visits where he was happy and laughing but things have become very bad.

My dad hates intervention and given that he is now incontenant the staff have to keep changing him and he is awful to them. He punches and screams and tries to bash the door down. It is heartbreaking to watch and appears to be getting worse.

Now the Social worker has told me my dad will shortly be put in a home and because of his level of aggression there is only a choice of two. I have been to see them and whilst they are ok I am concerned about how they will deal with my dads aggression and whether they will ill treat him because of it! My dad is a lovely man and is not at all aggressive by nature and it breaks my heart to see him this way. The thought of anyone being less than kind to him fills me with dispair.

My mum is at a nervous breakdown stage, seeing her husband of 52 years in this state is just so hard for her to take. I am also an emotional wreck as I am so close to my Dad.

I would really appreciate your views and experiences or any words of advice.

Many thanks
Tracy
 

Sam Iam

Registered User
Sep 29, 2008
3,151
58
WEST OF THE MOON
Hi Tracy,

The homes have training in violence & aggression and will be used to coping with people with dementia, so try not to worry and if there is anything that annoys you when your Dad has moved to the home you have picked, then you can demand that he be moved (there are posts on here where people have been therough this with their loved ones).
Your Mum will be very upset and feeling guilty this is normal Tracy and is par for the course and she will hopefully settle when she see's your Dad settle.

This disease is horrible but it is good to share your thoughts, worries and moans (we all do it Tracy :D) with your fellow TP er's
best wishes xxx
 

Sam Iam

Registered User
Sep 29, 2008
3,151
58
WEST OF THE MOON
Jackie,
John having his medication changed might help with thew aggression (finger's crossed, for as you know it is trial & error)

If all else fails Jackie it might be time to go for a suitable home for John as you are in such a horrible place at the moment and I really feel for you, it must be agony Jackie wanting to care for John and worrying about your children's safty.

Sorry if this is not what you want to hear as I do not want to offend you Jackie but John would be well cared for and you and your family could have quality time with their Dad, their memories might not be what other children experiance but there is more of a chance of good memories for you and them.

God bless you sweetheart xx
 

living in hope

Registered User
Dec 14, 2008
552
69
yorkshire
Hi Jackie
Sorry to hear about problems with John, your childrens safety must come first and if John were able to he would say the same, this terrible disease robs our loved ones of the ability to take responsibility for their actions so its up to us to do the best for all concerned. Hope things work out for you (whatever form that takes) and never feel guilty, we have to do what we have to do!
Love
Lorraine
 

jackie1

Registered User
Jun 6, 2007
238
Cheshire
Thank you for all your kind comments.

Sadly things seem to have taken a further turn for the worse today. Despite John starting on new medication on Monday, he has attacked one of the male members of staff. Other staff had to intervene to prevent serious damage.

I now feel that unless there is significant improvement that I can't have him come home on Monday.

I am so sad.

Jackie
 

Mameeskye

Registered User
Aug 9, 2007
1,669
55
NZ
Jackie

My heart goes out to you. I can understand the conflict that you must feel.

My circumstances were a little different as it was my Mum who had dementia, but she was truly awful to me when I was pregnant and just after I ahd the kids.

When the boys were a week old my HV came in and found me in tears after yet another of "those" phone calls from Mum. She chatted to me and made me understand that my children ahd to come first as they are the future. Whilst I had to ensure that Mum was well cared for, I had to ensure first and foremost that my kids were OK.

I think from your posts that you feel this too...but it really helped relieve my guilt that a health professional said this to me.

(((((Hugs))))

I think you have been given some good advice

Love

Mameeskye
 

ElaineMaul

Registered User
Jan 29, 2005
333
60
Hi Jackie,
Just reading your thread. My heart goes out to you.

My situation is slightly different in that the aggression was my Dad towards my Mum, but I know how hard it is to cope with seeing aggression coming from someone who previously wasn't like that.

We were making enormous allowances because of how we remember my Dad as being before. However, when Mum became seriously at risk ... when I once went round their house after a frantic phone call from my Mum .... never heard my Mum sound like that on the phone before..... and I wondered what I might find when I got there. Well, something had to be done.

Even so, the decision we then had to make .... as you are now making ..... is not easy and involves so much heart-ache. However, you can only do your best.

I am with you in spirit, if it helps at all at such a difficult time. I often feel so sad that my son .... my Dad's grandson .... doesn't have the memories of Dad that I would have liked. :(

Take care,
Love Elaine
 

Grannie G

Volunteer Moderator
Apr 3, 2006
70,397
Kent
Dear Jackie

However much we love the ones we are carers to, I draw the line at violence to children or adults.
If medication cannot be found to control the violence then the only alternative is a secure environment with professionals to take over the caring.
It`s terribly sad for you and your children but you cannot be expected to live in fear of a husband and father.
 

Sam Iam

Registered User
Sep 29, 2008
3,151
58
WEST OF THE MOON
Jackie,
my heart goes out to you, god bless you and your children,but you know you are doing the right thing for your family and John, his medication will settle down in time and your children will be able to be of some help to you.
I truly wish this horrible disease did not exist.
 

sad nell

Registered User
Mar 21, 2008
3,190
bradford west yorkshire
goodevening Jacki, you must consider your childrens safety first, i have experience of violence caused by Alzhiemers/ ftd
I can tolerate it for myself because that is my choice, but never for my children or grandchildren, My grandchild is very frightened of his grandad now, but untill just recently he handled AD very well, but his grandad has changed towards him, think it is because when he arrives he gets my attention instead of trev and he behaves like a terrible two year old. i will not let my grandson stay overnight anylonger he is 10 so now how you feel. my granson locked himself away because he was frightened of his grandad that broke my heart as i am sure it dose you, but there is no choice if safety is an issue and there are children invloved. i expect your husband prior ad was totally the opposite of todays behaviour, just no explaining it, but do not feel bad you cannot let your child live in fear, and hopefully medication can be sorted to allow him home at a later date. I hate this desease and all the pain it causes t o families love Pam
 

Margarita

Registered User
Feb 17, 2006
10,824
london
Despite John starting on new medication on Monday, he has attacked one of the male members of staff. Other staff had to intervene to prevent serious damage.
Sorry to read that Jakie, even thought it must be heart breaking emotional for you. You have nothing to be guilty about, even if you don't feel like it .

we had a lovely weekend. To see our child looking happy for the first time in so long
Wishing your children and you more, loads of moments like that(((Hugs))) xx :)
 
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Tender Face

Account Closed
Mar 14, 2006
5,379
NW England
Dear Jackie, however much we know we are 'doing the right thing' doesn't mean it doesn't tear you apart.

I just recapped on some of your previous posts and in one you mention what John would want for the children. Perhaps one of the most important things you can do for him now - and something that might help you to think of in this awful situation - is to consider that you are doing whatever you have to now, not only for your children but indeed for him?

I agree with Vonny about Children's SS. No harm in making contact - and they will be certain to 'step in' if the need arises. You might also find they offer (or can refer) you or the children to appropriate support.

My heart just goes out to you all - there really are no words....

Love, Karen, x
 

nellbelles

Volunteer Host
Nov 6, 2008
8,562
leicester
Jackie
It broke my heart when my husband was aggressive to his great grandsons, (twins) all caused because he was not centre stage.

Now they are 17, 6ft 3" when he was aggressive with me (because of being side lined) I had to prevent one of them from hitting him..They love him to bits..

So you have some hard decisions to make, but your kids must come first..
But you may find that explaining what is happening truthfully may help all of you.
Sunshine.. love and hugs
Helen
 

kazza73

Registered User
Feb 11, 2009
878
Perthshire Scotland
(((Jackie))))

Sounds like things have been pretty rough. You have got to put yourself and the kids first though- the 'old' John would want you do to what is best for the kids and would hate to think that things had come to this.

Sending you lots of love and some 'fluffy' hugs

Karen xxx
 

jackie1

Registered User
Jun 6, 2007
238
Cheshire
It gets worse!!

Things have gone from bad to worse. After another violent outburst I took that awful decision that John has to go into full-time care.

Foolishly I thought that was the worst thing that was going to happen. But last night the Respite Home rang to say that John had hit a woman client and then was lashing out at everyone. They had no choice but to call the police and it looked like he was going to be sectioned.

Luckily he calmed down and they were able to put him to bed. There will be a police report under the Vulnerable Adults Act (not sure what that means) and I am waiting for a call to tell me where we go from here. The Respite Home can't keep him there as it just isn't suitable and I have no idea where he will now go.

Jackie
 

Amber 5

Registered User
Jan 20, 2009
890
60
Berkshire
Hi Jackie,
So sorry to hear this. I'm afraid I don't have any experience of your situation, so can't add anything other than my support and best wishes.

It sounds like the medication will need to be looked at in order to help John become calmer and a suitable care home or EMI unit. Easy for me to say - I can only imagine what you are going through right now.

Lots of love
Gill x
 

Grannie G

Volunteer Moderator
Apr 3, 2006
70,397
Kent
I`m so sorry Jackie.

Don`t be too frightened by the word `section`. I used to live in fear of it but really it is only to keep people safe, including one with dementia.

This illness has such a disastrous effect on some, there is sometimes no alternative.
 

ElaineMaul

Registered User
Jan 29, 2005
333
60
Hi Jackie,
I empathise entirely as you are where we were with my Dad 9 weeks ago.

Dad wasn't sectioned but I guess it came close. However, after speaking to Dad's consultant and the SW, Dad was admitted as an emergency case into the Mental Health Unit at the local hospital. This was after telling them that Mum couldn't cope any more; they already knew she was at risk as presumably both you and your chilren must be.

After saying this to them, they acted very quickly.

It is not an easy decision to make and we also agonised over it. So my thoughts are with you {{{{{Jackie}}}}}
Take care,
Elaine