I feel I can't carry on

[small]

Oh dear, I know its late and I know I'm tired but I dont know how much longer I can carry on looking after John. And he's not even that advanced in terms of his AD.

He is still only 64 he is phsically fit, fully mobile, fully active though lacks the motivation or mental ability to do virtually anything except try and pick an argument with me. He is completely confused, distressed and has almost no short term memory but never shuts up. He has refused all along to go to any kind of daycare, and sticks to me like glue, questioning or disputing everything I try to say OR do.

Because of this I have moved us up north where all my family live to get the support of my son and sisters. We've only been here 2 weeks and I know thats too soon for that support to start helping how I FEEL.

Our son has done loads to help us so far but he's got his own probs. too much work, pregnant wife with a very sick pregnancy, busy on their new home. He's taken his dad out to give me a break but so far John won't spend time on his own or with my sisters etc.. Hopefully that will change as he gets more settled here. My sister has reminded me that the move alone will have have completely discombobulated him, and that its very early days.

I know all of that but I just feel I need to get away from him for a break or to get him to agree to regular day care. I know I have to carry on and give him time to settle before making big changes. I just don't know how to get my spirit back.

Hopefully I'll take a sleeping tablet, and hopefully it'll work and I'll get a few hours sleep. I just feel like I've been in a car crash. my brain won't work, my heart is playing up with the stress and my polymyalgia which has been in abeyance is getting worse. AND I just can't face another day like today.

I'm sorry for such a hopeless post but I know you've probably all been there and I hope you have advice or inspiration to get me going again.

Good night, sleep tight, dont let the bed bugs bite.

Jackie

 

[zeeeb]

Perhaps he needs to go to respite. I know he probably won't agree to it, but if you need a break, you need a break, and you deserve it.

If you don't get a bit of respite, it will likely just draw the time where he needs to go into permanent care closer, because you will likely break down.

Please do look after yourself. He won't like it, but you really do need to. If he doesn't want to accept going to daycare, tell him he will end up in respite or a care home. What's worse, a day in daycare, or a fortnight in respite, or a lifetime in a care home? He needs to recognise that you aren't his personal slave, that you can't do it all, not for lack of trying.

 

[rjm]

Hi Small,

Wish i had some brilliant advice for you!
It does seem like you are taking the right steps, hopefully he will settle down soon and be accepting of the family help that is available in your new spot. I know your son has his hands full with a sick wife and all, but could you trade off with him for a bit, maybe help his wife around the house and free him up to spend some time with his dad. It wouldn't be much of a rest for you but it would be a change.

Best of luck,

 

[Izzy]

Hi Small. I'm sorry things are so desperate fir you must now. Have you had a carer's assessment? It's described within this fact sheet on community care assessment:

http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=131

Perhaps this would lead to you getting done mind of suuport/respite.

Take care. x

 

[Beanbagg]

Sleep deprivation

Hello all
I'm new this but reading your messages has made me realise that I'm not alone
Just like you tonight seems to be a bad one!!!!!
I have not yet got any sleep because the person who I'm caring
Has decided that they don't want to sleep!!!! Sofar we have had
A fall in the bathroom, refuses to use the commode and just
Won't go to sleep.
I've done all the things that I think might settle them but
Nothing is working, so now I've resigned myself to another night
Of sleep deprivation.
Anyway it's good to know that there are other people out there
Going through same problems as me

 

[Kaety]

Frusterated

I am dealing with my mother with Alzheimer's and me and my sister are trying out best dealing with my mother, she has her moments and is in need of a lot of care,
she has no idea who we are and is crying a lot so the doctor put her on anti depressants, which is hard,. my sister is main care giver and mom is living with her at this time, she is so burnt out she has no idea which end of the candle to burn.
my sister and I talk a lot but its hard, and I feel just like you guys on this forum,
so happy I can talk and chat about this with you all, thank you

 

[bethany claire]

you have come to right place

Hello Small
How I feel for you- some of the time TP is what has held me together! It helps just to know others are in the same space. It sounds to me as if you are doing brilliantly- the move is bound to have made you even more tired too-please do think of yourself and push the fact that your own health will suffer if you cannot relax a bit,

I am awake too -wondering how much longer i can go on with it all - thinking of you and hoping the situation will improve,

Bethany Claire

 

[Izzy]

Sorry you guys were having a bad night. It's so hard when you add sleep deprivation to everything else. There's a Wide Awake Club thread in here. You often find the same people hanging around there in the wee small hours and you'll usually find someone there who will chat and understand. Here's the link to that thread in case you need it another night:

http://forum.alzheimers.org.uk/showthread.php?25895-The-wide-awake-club/page273

Hope you don't need it tonight!

 

[sussexsue]

Hi

I don't know what your solution is but most people caring for someone with AD reach a crisis point and I honestly think you have reached yours. For me it was when I hid myself in the cupboard under the stairs for nearly an hour, even though I could hear my mum wandering around the house calling out for me. The words "I cant do this anymore" just kept going around and around in my head. I suspect you can relate to that.

I am sorry I cant offer any advice, just wanted to empathise with the situation you are currently in.

(((hug)))

 

[Jaycee23]

Hi
I know this is not going to happen in an instance. When my mum was in her early stages of this awful disease she was at the time recently bereaved and living on her own. We knew she needed help as she was very demanding and when we gave her help or visited her she would not remember and feel deserted. Your husband is so lucky to have you there and support from your family. I knew mum was terribly lonely but any offer of day care etc was received with a I'm okay attitude. She had friends but they did not want to know anymore as she was hard work. The local carers association did recommend buddies as they would come and visit but in the disguise as a friend. If they was to come to your new house and appear to be new friends it may help your husband accept them but not feel he is being looked after. At the early stages and with your husband being fairly young he needs to be around people his own age. I know this is only a small consolation to your troubles but hope that you are able to investigate all kinds of help to give you support.

 

[sistermillicent]

Hi small,
It's not just your husband who might need to settle down, you have just moved house, that can't be a stress free experience in itself on top of what you have already had going on with being a carer.

Have you registered with a GP up there and do you have a social worker etc? If I were you I would make it a priority to get a carer's assessment where you are now, things vary around the country and it may be that you could tap in to quite a lot of help.

My dad thought mum would never accept carers, day care, respite, and became too scared even of the thought of it to let anyone into the house, and that literally meant me seeing carers and assessors in their cars outside or in the front garden. However when the time came I sent him out and dealt with handing mum over to the carer myself, without terrible consequences. We also got her into respite without terrible consequences but dad couldn't be there as he was really ill with the stress of it all.

So don't despair, there will be some point probably not too far off when you are able to access these things and use them to support you in caring for your husband.

 

[bmw777]

hi small ,
it is so stressful dealing with a love one who has dementia , the cumulative effect of dealing with dementia really does wear me / you down ...

here are some wise words i found

A Great Lesson on Stress

A young lady confidently walked around the room with a raised glass of water
while leading a seminar and explaining stress management to her audience.
Everyone knew she was going to ask the ultimate question, 'Half empty or
half full?' She fooled them all. "How heavy is this glass of water?" she
inquired with a smile. Answers called out ranged from 8 oz. To 20 oz.She replied,
"The absolute weight doesn't matter. It depends on how long I hold it.
If I hold it for a minute, that's not a problem. If I hold it for an hour, I'll have an ache in my right arm.
If I hold it for a day, you'll have to call an ambulance. In each case it's the same weight, but the longer
I hold it, the heavier it becomes."She continued, "and that's the way it is
with stress. If we carry our burdens all the time, sooner or later, as the
burden becomes increasingly heavy, we won't be able to carry on.""As with
the glass of water, you have to put it down for a while and rest before
holding it again. When we're refreshed, we can carry on with the burden holding stress longer and better each time practiced. So, as early in the evening as you can, put all your burdens down. Don't carry them through the evening and into the night. Pick them up again tomorrow if you must

 

[jan.s]

To all those people who are struggling, i'm sending a hug.

I do understand how it feels, Small, because i was in a similar situation about 18 months ago. Please ask for an assessment and try to get some "you" time.

Jan x

 

[BeckyJan]

Izzy has mentioned an Assessment which is well worth having - both for yourself as carer and your husband. Please make yourself known to Social Services to arrange this. It may be worth you speaking to your GP too - no doubt you have registered with a new one since your move and he/she ought to be aware of your problems and may be able to support you with SS.

I also suggest you ring your local branch of the Alzheimer's Society. You can locate them here. They should guide you on what is available locally, for instance they may have a befriending service. (My SIL does this and takes out his 'friend' for a walk, coffee and chat - which benefits the caring wife who has a few hours to herself).
Anything of this nature will help your husband become accustomed to being with others which essential for you.

Keep in touch as I am sure you will find much support and understanding here.
Best wishes

 

[Hair Twiddler]

Hi Jackie,
Hope that you snatched a few hours good sleep last night.

Can you try telling yourself that today will be better? Then be brave, if you haven't already, register with a surgery.Book an appointment for either yourself or your hubby and plan to talk about help you think that you may need (if you break down and cry - as I did, it certainly galvanises their attention!) your GP will be able to get SS involved. SS are not dragons or big-brother - for us they have been a Godsend.
You may have a carers association operating in your county. They are full of good people willing to simply listen or offer more practical advice - give them a chance to help you too.
I hope that today goes well for you. Be brave. Take some small steps.
Keep in touch.
Twiddler.

 

[treecol]

Hi, Small. Try not to take his behaviour personally. It's just the disease. My Dad (who we live with) is the same with me. He argues about everything with me & seems to want to pick fights all the time. He also never shuts up either. He talks about nonsense (not to him though) all day non stop & it's exhausting. You need to take care of yourself. Can you try to arrange respite for him in a CH. As others have said, he won't like it, but you need to give yourself some rest. Hope your new SS can sort things for you. Check in here when you can, I find it a comfort to see others go through similar things, helps to know you aren't alone. The thing I've noticed from this thread is how many are up at night, such a shame to get disturbed sleep, but it goes hand in hand with the disease.

 

[Witzend]

Oh, dear, Jackie, this is so hard for you. The only thing I can think of is that you must go to your GP, tell him/her you are absolutely desperate for a break (carer breakdown) and then tell your husband that the doctor says he needs to go otherwise you are going to be ill.
Sometimes 'the doctor says' will work when no other persuasion will. He still won't like it, but sometimes we have to override what they would like for everybody's good, especially when they have completely lost the ability to understand other people's needs or how they are impacting on their carer.

 

[small]

Delayed response

Thank you all so much for your kind thoughts, good advice, helpful links and hints. I can't name you all but I found the example of holding the glass of water very telling. Also the lady who hid in the cupboard from her mother rang SO TRUE. I did follow a lot of your advice. We are now registered with Drs &Social Services. They pulled all the stops out to get him into emergency day cay care but he outright refused to go again and each time I mention it he packs his bags( after a fashion) and sets off to return to London! In his car!

This is my latest problem. Apart from all the stress of 24/7 care, he's now got his car and sets off in it with his bags. The first time he tried to drive to London he got as far as the service station at the start of the Motorway and stopped there. The petrol attendants tried to sort him out and gave him directions how to get back to me, but alerted the police, so 2 separate forces phoned me up

When they queried whether he was fit to drive, I explained that I had tried everything in my power to get his licence revoked to no avail. The Psychiatrist in London would not commit himself and DVLA took no action on my letter to them. I am trying again through the new GP but there is quite a waiting list for the Psychiatric services at my new address. He is still desperate to drive and still goes off in the car, but doesn't seem to get very far.
As if I don't have enough to worry about. At least I'm not crying all the time.

Regards

Jackie

 

[Wolfsgirl]

You could try getting someone perhaps your son, to disable the car from starting?

Could you try not mentioning the 'day centre' and go out to the 'lunch club' with him? (suddenly the car works and you drive) - whilst you are there, nip off to the dentist? Post a letter? Are the doors locked at the day centre? Grab a few hours and repeat the whole thing on alternate week days.

Does he do as the doctor asks? 'The doctor said you must i.e. keep your brain active and interact with others as much as possible - lunch club' etc.

Hope you get some relief soon, sounds horrendous!!!

Thank you all so much for your kind thoughts, good advice, helpful links and hints. I can't name you all but I found the example of holding the glass of water very telling. Also the lady who hid in the cupboard from her mother rang SO TRUE. I did follow a lot of your advice. We are now registered with Drs &Social Services. They pulled all the stops out to get him into emergency day cay care but he outright refused to go again and each time I mention it he packs his bags( after a fashion) and sets off to return to London! In his car!

This is my latest problem. Apart from all the stress of 24/7 care, he's now got his car and sets off in it with his bags. The first time he tried to drive to London he got as far as the service station at the start of the Motorway and stopped there. The petrol attendants tried to sort him out and gave him directions how to get back to me, but alerted the police, so 2 separate forces phoned me up

When they queried whether he was fit to drive, I explained that I had tried everything in my power to get his licence revoked to no avail. The Psychiatrist in London would not commit himself and DVLA took no action on my letter to them. I am trying again through the new GP but there is quite a waiting list for the Psychiatric services at my new address. He is still desperate to drive and still goes off in the car, but doesn't seem to get very far.
As if I don't have enough to worry about. At least I'm not crying all the time.

Regards

Jackie

 

[CollegeGirl]

Jackie - you know what? Your health and well being are JUST AS IMPORTANT as your husband's.

I think getting someone to disable the car is a good idea. When you've done that, do you think you could just bring yourself to leave the house, go to your son's or a friend's, then ring social services and say that you are close to carer breakdown (true) and that you need your vulnerable husband to be taken into emergency respite before you can return home? Don't worry about whether he agrees or not. It needs to happen, in my view.

My own mam would never agree to respite if we actually were to ask her. She wouldn't understand, has never been told her diagnosis (too late now) and believes that she can still do, and does do, everything for herself, even though she does virtually nothing for herself at all.

I know it sounds drastic, and I admit I don't know whether I could do this myself, it's easier said than done obviously.

But you sound close to the edge, to me.

Good luck with whatever you decide to do x