I feel like Judas

[J@ne]

I've just packed dad off on the social services bus to the day centre. He never wants to go and kicks up a fuss if he knows he's going so my stepmum has a routine now of waiting till the assitant comes to the door before getting dad's coat on and bundling him out before he can get worked up. It works, and i guess it does minimise the stress and anxiety for dad. Today's the first time I've been here with him on his day centre day, and I've been dreading it - it's been really hard trying to keep myself calm and chirply so as not to stress him. He was watching The Sound of Music and singing along to Edelwiess and I was trying not to cry. I feel so guilty - in effect we're taking advantage of his confusion and manipulating him but I know it's for the best. He probably does enjoy it when he gets there, but he doesn't like the idea of going. And I never thought I'd see my dad helped onto a social services bus and driven off like that - he was alway so self sufficient and independent it does feel dreadful that now he's so easily duped into going off on a bus when he doesn't want to go. Last night I wrote a long letter to the staff about my dad - they have a little book they write in for my stepmum, and she can write messages in it for them, and I decided to tell them about my dad. He can't even do a jigsaw now with huge pieces in it, but he stripped the engine of my car down to the last nut and bolt and cleaned it when it broke down, and put it all back together and made my car keep running for years. I know they realise that but I want them to know who my dad was before this evil disease began to eat his mind up. And I know I have to stick to the routine for my step mum so that it doesn't make it harder for her, so there's no way I wouldn't have sent him off today even though this week hasn't been remotely as hard as I was expecting it to be and I could happily have spent another day with him. But the guilt and the loss is unbearable. He asked if I was coming with him and I did think about it but again, it's not fair to disrupt the routine. And then I realised I've packed him off without his glasses. And even though we didn't get on at all and rowed badly and hardly had any conversation before this, I miss him so much. I stood and waved as the bus went off because it's important to him he always stands and waves. I pasted on a big cheery grin and waved and came back in the house and sobbed. And it's only going to get worse not better. Still at least I guess even now in the depths of this horrible disease, he's still digging his heels in and fighting back like the stubborn old sod he always was so that's something. And as he was heading out the door he put his cap on backwards and waited with a silly grin for the bus chap to laugh (which is a thing he does - putting things on his head for a laugh - and he's always done it) so really he's pretty fine and will be okay. But I still feel like Judas Judas Judas. I gave him a kiss as he went. Why does this have to happen to people? What an evil thing to do to take away someone's mind like this.

Anyway thanks for listening - I just needed to get that off my chest. I don't feel any better but otherwise I'd have burst, and I have stuff to do today so I need to get it together now.

 

[Helena]

I do know how you feel although thankfully for us Mothers illness being VD was fairly short and her real depths of confusion was only the last 5 weeks in hospital

However the intervening periods of confusion and the havoc of her finances are testimony to just how bad she was some days but she hid it and was always in denial

My Mother was a stubbornly proud and independant person , feisty to the last
Would tackle just about anything and was still driving to 6 months before her death

So yes to see her like a lost child yet also unwillingly to do as she was requested by doctors/ nurses etc was horrendous

To watch someone slowly being destroyed by AD is totally devastating but you simply have to stop beating yourself up about something you cannot change

 

[Grannie G]

Dear Jane, Judas is the word. But you are not Judas, however much you feel like him.

I think your letter to the staff is inspired. Not only will it tell them how he was, it will show them what a loving daughter he has, and how she is also suffering from the effects of Alzheimers.

I know you won`t feel better. No one can feel better. This condition is too cruel. But you have somewhere in TP to let go, get it off your chest and prevent yourself from bursting. You also have people who understand, who also might feel like Judas and who certainly know where you`re coming from.

When my mother first went to day care, I did go with her. I had a day there and popped in on other days, just to let her know she hadn`t been abandoned. She once said `You keep finding me, don`t you`.

Take care

 

[BeckyJan]

I have just returned from taking my hubby to day centre. He hates it - I only persuaded him to go today because he opted out last week and we have a funeral to attend next Friday. If he keeps opting out the place will go - not that he would worry about that. It is only one day a week and I have to tranport him, but I am glad of this space just to be myself knowing he is being cared for.

Yes I want to sob about it too - I get home feeling probably more depressed than he does. He puts on a wonderful act when he is there and they tell me he is the life and soul, boosting up all the others.

he was alway so self sufficient and independent

I feel for you - I try hard now not to think about how competent my husband was or about his achievements. Now is now and it does not always help to compare too much. Good for you for sending in a letter about your Dad. That will help them to understand him a little more, although they would not be working with dementia if they did not understand the changes that take place.

The only advantage of this wretched illness, J@ne, is that within 1/2 hr. of returning my hubby will have forgotten where he has been. Please dont count yourself as a Judas - in no way.

Best wishes Beckyjan

 

[Skye]

Hi J@ne and BeckyJan

John is also at day centre today, and he hates the thought of going. I usually don't tell him until after breakfast, but his son called in last night and said, 'You'll be going to your club tomorrow.' I could have slaughtered him!

John worried all evening, and nagged me from 5 am to get up in case he was late.

On the positive side, he's fine while he's there, and I do feel he's benefitting from it. One of the organisers is male, and he takes John under his wing. He is really improving his speech, and I also feel that it's good for John to have male company.

I've been offered another day, and I'm not sure what to do. On the one hand, it's good for both of us, but on the other hand, I don't want him to feel I'm pushing him out.

Yes, we can't avoid the guilt!

 

[Canadian Joanne]

In some ways I think it's harder for the carers to send someone to a centre, because of the guilt. However, my mother went to a day centre for about a year & once there she enjoyed herself. I think it's a lot like young children, they kick up a fuss while you're preparing to go but settle down & have a good time afterwards.

It's always hard to see the person he or she has become. We can't do anything about it except try to make the most of what we do have right now. Easier said than done, I know.

Joanne

 

[Margarita]

I always remember my mother going to day center coming home with a paper plate (sp) that she drawn a face on and she give me it with a smile on her face , I Cried I can tell you I Cried .

They go to day center for us really to give us break..

it so lovely of you to be so Considerate to your stepmother I mean that sincerely , because your right about routine J@ne

I look at it like this if they where active did not have AD did not have a partner; they would go to age concern that have lots of activates, days out for the elderly if they want to go. Married couples go also, in Gibraltar they have an elderly club that every one join because they do so many thing

So why not someone with AZ

 

[BeckyJan]

So why not someone with AZ

__________________

Exactly - well said Margarita!!
Beckyjan

 

[J@ne]

Dad's home again

Thanks everyone for your support.

After I poured it all out here, I stuck some joyful music on full-blast on my iPod to try and shake it off but I must admit I cried and cried and took a while to calm down. Then I spent the morning trying to make some phone calls for dad, hung out the laundry, and headed off into town. I was watching the time all afternoon, and I passed a bloke with a clipboard trying to stop people passing to sell them something and I remember thinking "I only have a couple of hours and I'm not wasting them on you buddy!" And I kept thinking, I'm only here this week! My stepmum has this week in week out and so do many of you. You think you can imagine what caring is about but you've no idea till you do it. No amount of training or reading or supporting carers can tell you as much as living it. I used to work for a local Mind association and got to know lots of carers and developed a lot of knowledge about their perspectives, and used to spend hours on the phone to support them when they called, but frankly, I look back and I knew exactly nothing.

Anyway I stomped round town trying to shift the cloud, bought some nice soup for lunch, and found a Bill Oddie book about birdwatching for Dad. As I was racing back paranoid I'd be late (I'd left a good hour mind you) I started panicking about what would happen if the car broke down, or I lost the gizmo for getting out of the car park, or I got arrested (no idea why I would!) or I got irretrievably lost on the way home, or crashed, or was taken ill etc etc etc, and what on earth would happen to dad, then I thought I should carry something with me so that if anything did happen to me while I was looking after him people would know. Not that I'm a pessemist or over dramatic or anything .

Dad came home and was quite tearful and I gave him a big hug. He said "it's been a rough ride" - I gather they sat and went through my letter with him and he seemed unusually lucid so they must have fired up some bit of his brain that was not quite gone. Interestingly for all his grumbling, he wanted to stand and wave to the bus as it left, so we did. And following advice, we went straight back out to go to the shops. However, it didn't make him forget at all. We got there, and before getting out of the car he said the centre is a terrible place. But he said it quite calmly, not angrily. We've had tea, and he's sitting watching the snooker and he suddenly looked at me and said he felt beaten. I waited, and he managed to tell me he doesn't see why he has to go off in that van to the centre. Because of previous jobs, I remember from basic listening and counselling training I've had about accepting what people are saying so I let him say it and didn't try to change his mind. He said he didn't understand why he needs to go there, so I just said they're trying to help and he said they're not helping, they're just interfering. I suppose it's a good sign because I recognise my grumpy independent old dad in that. But the bad bit is it means there's still enough of his personality alive and kicking that he truly does feel insulted and humiliated about being sent there. Unfortunately there's not enough of his personality alive and kicking for him to be able to consider how to get the best out of the centre. And if there was enough of his personality alive and kicking, I think he would reject it even more. So there was nothing I could say. He just shrugged and left it at that. No row, no tantrum though. Just a deflated dad and incredibly guilt-laden daughter. And next time I'll do exactly the same.

The good bit is, when we got back he was looking at the decorations on the car kindly contributed by passing birds, and said a damp cloth would get rid of them, so I got him a bowl of water and a cloth and he went round the whole car and cleaned off all the splodges, and wiped the windscreen wipers. He even remember much later, after tea, that he'd leaf the wipers up and went back out to put them down how impressive is that!

Of course, then he came in for tea and needed careful step by step instructions to set the table. What a roller coaster it all is!

 

[BeckyJan]

So much of what you have just posted as reminded of my husband. His return from day centre - what a waste of time he said!!! (but a friend who saw him there a few mins before I collected him said 'he was full of the joys of spring'!!!!!!!!
We watched the snooker and in between saying how boring it was he was trying to tell these pros how to play the game! Now he cannot really follow 'Agatha Christie' (neither can I but that is cos I am drinking wine at the same time!!).

I am pleased your Dad was able to 'clean up' your car - my hubby would not be able to do that although he may say indicate that he is going to! Mobility prevents all that.

You are a very special daughter. Whatever agony you are going through, I am sure your Mum will be really appreciative - you are doing a wonderful job.

Best wishes Beckyjan

 

[sue38]

Isn't it typical of everyone (not just dementia sufferers) that they take their troubles out on those nearest and dearest?

Beckyjan, I had to chuckle about your comments about the snooker. A typical comment of my dad's was: 'He's gonna swerve it, he's gonna swerve it.....he should have swerved it!! THE LADS AT THE GOLF CLUB COULD PLAY BETTER THAN THIS!!!!'

As someone who is left cold by snooker (and by golf for that matter) I just agree. But my Dad has really been really enjoying the snooker, much to our surprise.

Sue

 

[Lila13]

My mother wouldn't. Wouldn't do anything with "elderly" or anything similar in the title.

She did sometimes go on the MS society outings because she thought she was helping. Well, to start with I'm sure she was.

I look at it like this if they where active did not have AD did not have a partner; they would go to age concern that have lots of activates, days out for the elderly if they want to go. Married couples go also, in Gibraltar they have an elderly club that every one join because they do so many thing

 

[Margarita]

I must admit, my mother did not want to go , I had that issue every one had , not like going asking why they have to go .


I don’t know if I done the right thing, but I told my mother that I needed time on my own, busy doing this, doing then she use to want to come with me , sometime I gave in 2 time or may be 3 would take her to coffee shop , over time realized that outing with me , she would become very tiring for her , so if she did not go to day center she is stuck in the house , My mother never been a person who like staying in all day .

I remember the first time she went willingly, oh the freedom and not knowing what to do with myself, yes like J@ne say having to worry about getting back in time. I had a few hits and miss on that one, just got back in time as bus get out side.

I learn to put the key of the flat mum bag as they said they would open door and leave mum in house, but it never got to that, as one of my daughter where always around and my daughter would always complain where was I what about if they was not they ? I was only about 15min late, So learn to forward plan for those days mum go to day centre geting back on time , geting someone they , if I new I was going to have to rush back

 

[Margarita]

The irony of it all is that when mum AZ was not so progressive & we could both get out together with Taxi , but mum could not walk up down 24 flight of stairs that lead to my flat, as she has arthritis in the knees , so that contributed to her getting more tried on the outing together , and with my back could not get wheelchair up down stairs , so day center was her only out let to the outside world

So when I finally get a move , mum gets to scared for me to push her in wheelchair because a fall she had in another type of wheelchair . now her mobility is getting so bad , and reasoning with her because of the progression of the AZ and they cut one day of her AZ day center

 

[BeckyJan]

Whoops Sue - I love watching the snooker and I am not a bad golfer either (when I get a chance that is!!). Each to our own.

Margarita: I say all those things to get David to go to day centre - but he replies that he would rather stay at home (and I think he means it too) - but then I feel obliged to take him out for a run, make coffee, lunch at all that - so in the end just do not get a break. We have a review with the CPN who organises the day centre next week - so maybe it will come to an end soon.

But the bad bit is it means there's still enough of his personality alive and kicking that he truly does feel insulted and humiliated about being sent there. Unfortunately there's not enough of his personality alive and kicking for him to be able to consider how to get the best out of the centre. And if there was enough of his personality alive and kicking, I think he would reject it even more

J@ne - you have described my husband perfectly!!

Best wishes all Beckyjan

 

[panda]

When I used to take my children to nursery (quite a feww years ago now) they would cry and hang on to me and I would feel terrible...I would go home and clean the house feeling like an evil witch. When I collected them I would be told that they had a great time and they would be full of smiles. Taking Mum to her day centre for he first time I becaame that wicked witch again... Mum continued to complain every time I told her she was going, then evey time she came back she would say she had a lovely day and they even pick her up and bring her home..I think we are all a bit inclined to make those we love feel bad at certain times in our lives.

 

[Grannie G]

Hi Panda,

When I used to run a nursey and new children clung to their parents in tears, I would tell the parents to walk round the block, and then peep through the window after 10 minutes or so. I was sure their children would not still be upset.

It worked every time.

Maybe you can do that with your mother.