Argghhh!

[Scoop]

Just want to bang my head on a wall.....

Lousy day and night yesterday with my Dad again, I ended up round at theirs sitting like a jailer getting him into bed after a quite frankly bizarre evening for my Mum, she called saying should couldn't do it anymore.

Got him into bed eventually at 1 ish, as I left apparently he wanted to get up again, eventually he fell asleep at 2, was awake at 6 and after another kip eventually got up at 8:30ish...

He'd had double dose of Olanzapine ( Antpsycotic) at 5pm and double dose of Zopiclone ( Sleeping tabs) at 9:30 not sure it helped any All on the recommendation of the specialist as Dad had been really problematic yesterday afternoon

Mum and I are shattered, didn't get to sleep until gone 3 worrying and the kids were up at 6. ( my eldests 5th birthday today and I haven't been too jolly for it ) Been trying to get hold of the specialist since 9, still no call back, resorted to the GP and am waiting for a call after 4 from them too... just need some help!

Really stressed it to the person at the Mental Heath centre that it needs something today and guess I just have to wait and see what comes..

Just feel we are well out of our depth on dealing with him now - especially at night

 

[Grannie G]

Is decision time looming Scoop? It sounds as if it might be, to me. Unless someone can work out a form of medication to stabilize your father.

 

[Scoop]

Probably , I am actually after the mental health place admitting him for a while to give the meds an overhaul and see if they can find something better that leaves him more manageable and contented so he can stay at home longer...

Just been a very low frustrating day today waiting for someone to call.

He responds better to me than Mum now but I can't be round there every day and night and with a new baby due in 4 1/2 weeks something is going to have to give... soon. I managed to get him into bed last night but when my Mum tried to usher him she got shown clenched fists

 

[Grannie G]

when my Mum tried to usher him she got shown clenched fists

She shouldn`t have that to deal with on top of exhaustion. Itr`s too much for anyone.

 

[jenniferpa]

I'm not sure how much importance "professionals" place on this loss of sleep but in my opinion it is the single issue that most frequently leads to people giving up their caring role. Everything becomes more difficult when you're operating with a sleep deficit: there's a good reason sleep deprivation is considered to be a form of torture. I never had much contact with professionals with my mother, but what I did have they seemed to brush this issue off, or at least not give it the importance it is due. Also, I can't help feeling that if the person with dementia isn't sleeping well then their behaviour is going to be worse as well.

 

[TinaT]

So much importance is placed on keeping care in the community but not enough help seems to be given when emergency situations arise. The professionals need to be able to respond quickly to such situations as you are faced with before things get completely out of hand. An exhausted wife, a daughter who is almost giving birth and a demntia sufferer who needs 24/7 care is an emergency. Please let us know what happens. I hope you have help very soon. xx TinaT

 

[rhallacroz]

Hi There

Hi There
What a dreadful time you are having. This disease seems to have highs and lows. Has your dad got an infection or uti/chest infection. If there seems to be a change in his symptoms this might be the reason speaking from experience. My dad declined since Dec with a chest infection as was almost written of by the GP who saw is care as palliative.He wasn;t walking doubly incontinent. Aggressive day centre transferred him to an EMI day facillity but since Dec to begining of Feb he was too ill to go. Hence he ended up in a hospital bed in the lounge with mum and I caring for him with a good package from Social services.
I found another GP who agreed that we should investigate this deterioration and arranged a chest xray which showed Bronchiectasis which is usually a cause of a chronic infection. He is at present being treated with strong antibiotics and have to say improving but it has taken 2 months. I managed to avoid the anti psychotic drugs and just perservered to be honest anything I tried made him 10 times worse. I am not saying your dad is in the same position but I just thought I would share my experience.
I do understand what it is like though I also have a young family but am Not Pregnant you must be exhausted physically and mentally. Does your dad go to a day centre. They are a godsend in relieving the carer and also allow other members of staff to observe their behaviour.
Hope things improve.
Angelax

 

[Scoop]

Well that rates up there on the chart as one of the worst things I have ever had to do... Dad is in for assessment for for up to 14 days now. Walking away and leaving him was really hard although he seemed quite Ok with it.

Had all the discussions on the way back of how we had to do it and stuff... still feel pretty lousy though

Mum is putting on a really brave face, my kids are making a real fuss of her and will keep her busy tomorrow too but I suspect there will be a few tears over the next few days.

Couldn't carry on though and fingers crossed they can find a better compromise of drugs for him now.

Time to make a big fuss of Mum now.

Cheers for all the support

 

[jenniferpa]

Yes I'm sure there will be tears, but look at it this way: there would have been tears and possibly worse if you hadn't done this. I'm so glad for your whole family that someone took this seriously.

 

[Carolynlott]

I know EXACTLY how you are feeling. My Dad went into respite on 13 December and a week later he was in permanent care. My Mum had reached the stage where she couldn't cope any more - she has AD too, though not yet as advanced and it was like two 5-year olds living together.

Two months later and I still feel bad, and wish I could just bundle Dad into the car and bring him home. Dad went willingly into respite care when the Social Worker told him my Mum needed a rest. He asked the whole time he was there when he was going home, but when we took him to the permanent home after a week he didn't question it.

Even now I hate myself for not being superwoman and finding some other way.

 

[Brucie]

Hi Scoop

Walking away and leaving him was really hard although he seemed quite Ok with it.

It was quite the hardest thing I have done in my life, to leave Jan at the assessment centre.

The thing to keep in mind is that we do these things to help our loved ones, to make things better for them ultimately, or as good as we can help make things.

 

[Skye]

Well that rates up there on the chart as one of the worst things I have ever had to do...

Scoop, it's hard but you know it was necessary. Neither you nor your mum could have carried on like that.

Hopefully they will get the meds sorted out quickly.

Try not to feel lousy, there comes a time for most of us when we can't cope any more, and we need the help of professionals.

Look after yourself and your mum now.

Love,

 

[hendy]

Scoop
Sorry to hear that you are having such a distressing time sorting Dad, hopefully things will work out for the best for everyone. I know its horrible to think that he will not be looked after in his own home by his family, but he will receive good professional care and it will ease the pressure for you and your family. My thoughts are with you, as my dad( i'm his only carer) became very ill when my youngest was six months old... The best way you can help everyone is to look after yourself now and keep strong (even if you dont feel it sometimes)
Very kindest regards
and take care!!
Hendy

 

[Margarita]

Got him into bed eventually at 1 ish, as I left apparently he wanted to get up again, eventually he fell asleep at 2, was awake at 6 and after another kip eventually got up at 8:30ish...

God you are a good daughter in helping your mother with your father in this stage of his dennetica .

Someone said above at this stage ay your wondering about giving up the caring roll , they right.

when I ( mum ) got to that stage I was wondering that ( giving up caring ). I had to up my support care packet and got mum more days at day center for my mother , so I could get some sleep during the day . must say it did pass . my mother in that stage .

Lack of sleep can age a person or kill them (the caring I am on about ) it was on the TV the other day .

dose your mother get any support during the day or any respite . so she can get some time out for herself ?

 

[Grannie G]

Dear Scoop,

Try not to feel so bad. It was the last resort after an extremely trying time, and really there was no other option.

You and your mother are probably feeling worse than your father, as you said he seemed OK with it.

Now`s the time to regain your strength and hope he can be helped in the assessment unit.

Love xx

 

[Scoop]

Well morning after, feeling quite empty today - odd feeling. Also quite emotional. Mum is pretty tearfull to, she has said things like making breakfast etc have got her in tears a few times today hard to think that others are making dad breakfast when she should be etc.. Gonna be tough on her for a few days for sure.

It's so hard trying to differentiate between the Dad I know when I look at him and the man he has become inside, there's a real battle going on inside me at the moment on that

Will call the hospital soon and see how he has done on his first night there


Thanks as always for the kind thoughts and comments


Going to try and make use of the next days to get a better level of support for mum in place too, the day care and stuff

[sigh]

Scott

 

[gerrie ley]

help

I had a similar problem with my wife Mollie I gave her the daytime Kalms at night I now get my sleep and have done for the past six months but please check with your doctor first they are herbal and sold at most chemists for just over £4 for a hundred and at two every night what have you to lose

 

[Scoop]

Well after a series of mre consistant nights Dad is coming home tomorrow. Mum is quite excited to have him back, fingers crossed he is a little more settled now.

The time he has been in has been good for all of us in the end, Mum has had a bit of time to look at things more rationally, he outlook now is to give it a go with Dad at home - she would never forgive herself if she didn't try - and then play it be ear.

They have adjusted his drugs, tamazepam at night and the olanzapine and memantine all in the evening.

So fingers crossed and we'll see how it goes.

Baby due in 10 days now where did the last 9 months go

Scott

 

[Skye]

So fingers crossed and we'll see how it goes.

Baby due in 10 days now where did the last 9 months go

Fingers crossed indeed, Scott. I do hope your dad's homecoming works out well.

And good luck for the baby, too. Won't be long now. And how wonderful that your dad will be home in time for the arrival.

Love,

 

[Grannie G]

I wish you all well Scott and hope everything goes smoothly.
Love xx