My Week!

[Heady]

Hi folks!

Guess what? I actually took some of my own advice and AND actually asked for some help this week!!!

It was so hard. (Biggest understatement ever!). Needed to see an Osteopath, 'course, couldn't get an appointment to fit in with the Marie Curie sitter,that we now have. So had to beg S's son. He couldn't/wouldn't do it, but sent his wife, to come and sit with S. This was on top of asking my sister to look after him, while I had my hair done! (That was easy!). Why is it so hard, if not impossible to ask for this help? Everyone, well most (!) are always offering to come and sit with S, but it really upset me, to actually ask people to come. Just got it all sorted and my PSPA coordinater phoned. Poor Jane, found me in floods of tears. Why? Why should I be upset that our family members are helping, which they want to do. That they need to do, to help cope with the constant worry, that they are going through, because of S and my situation. I give up!!!

S has been accepted back at the Hospice again, so have got my Wednesday's back for another 12 weeks. Had a key safe fitted. Emergency pendant coming next week. Now waiting for Crossroads to get back to me, regarding have more care coming in, but girl is off sick, so everything has ground to a holt!

On top of all that, I actually got 6 hours non stop sleep last night!!! S did his normal, waking at 12, the again at 12.45, to go to the loo. I'm afraid I lost it then, screaming that I would have to get night carers in, as I couldn't cope any longer. Next thing it was 7.00am, heard S getting up, instead of rushing to him, I let him carry on,(fingers and toes crossed!) next thing I heard the shower going. An hour later,he emerged from the bathroom, clean, dry and shaved. That, and having two hours off this afternoon, enjoying a good natter with a friend over coffee, I feel "almost" human!!!

AND, AND it's Friday, nearly wine o'clock!!!

Enjoy your weekend!

Lots of love

Heady

[gypsywoman1947]

I think you are MARVELLOUS....it is hard isn't it, so many say let me know if I can help, but sometimes when push comes to shove they are not around. We have pendant it's peace of mind for me , I leave him for 2 hrs at most. He has had 2 falls whilst I have been out and both times he forgot to use the pendant!!!! Family are busy working , so I manage by popping out for this max period. How do you get a pspa coordinator ??? I'm so frustrated with it all but it must be worse for the sufferer. Have a good weekend

[Yvonneandgeorge in reply to gypsywoman1947]

Hi Heady, so glad you have taken your own advice, we have also had a key safe put in, someone was saying you should check with the insurance , that they accept the box outside?

Good that S managed to shower and shave, when they have one of those days, you feel like things are back to normal, wishful thinking.

I think we all feel bad asking for help, our children work, and you feel bad asking for help after they have been to work all day, one of our daughters lives 5 minutes away and she visits most days, our son is back from Australia and living with us, he did look after George and I went to the theatre with the girls and our for dinner, which was lovely.

Heady I think you are amazing also. Look after yourselves hopefully we will have a nice weekend, son-in-law is putting up our summer house over the week end and doing some decking, we are getting ready for the summer spent in Hertfordshire.

Love to you all Yvonne xxxxxxxxxx

[Georgepa]

My daughter is brilliant - she helps whenever she can which isn't easy as she lives over 150 miles away but she regularly phones her mum even though V can be a bit odd to say the least on the phone and she is always sending encouraging cards and gets her friends to do the same . My son and his wife live even further away so all I have ever asked them to do is send chatty texts and pictures of our granddaughter .They managed three texts and one picture since Christmas and now our daughter inlaw has taken huge umbrage over some issue and has disowned us - such is family life. As for asking other people well------------------------- not easy .

Georgepa

[jillannf6 in reply to Georgepa]

HI GEORGEPA

SO SORRY THAT YOUR DAUGHTER IN LAW HAS TAKEN UMBRAGE BUT U MUS TASK FOR HELP WHEN IT IS NEEDED

MY PARTNER LEFT ME FOR 3 HRS ON MY OWN YESTERDAY - UNPLANNED AND I WAS OK - SPE;NT MOST OF MY TIME LYIGN ON THE BED AND RELAXED CATCHING UP WITH THE SOAPS I HAD MISSED HWILST AWAY IN N YORKSHIRE

APART FM FALLING OVER TWICE IN THE KITCHEN WHILST GETTING MYSELF SOEM SOUP AND LUNCH. 'TWAS EVER THUS! AS THE CARERS ALWYAS PUT " NO INJURIES HOWEVER" MY PRIDE IS HURT WHEN I FALL OVER LIKE HTIS A.M IN THE BATHROOM I JUST WENT FWD AND HIT MY FACE ON THE WASHBASIN - A BIT OF BLOOD NEAR THE EYEBROW BUT IT WOUDL HAVE BEEN WORSE IF I HAD HA D MY SPECS ON1

SO ANOTHER DISASTER AVERTED )( ORA TRIP TO AAND E AVERTED) AMD THEN ANOTHER FALL IN THE KITCHEN OUT OF THE WHEELCHAIR TRYIGN TO GET SOMETHING UP FOF TEH FLOOR

I WILL POST ABOUT HTE YORKSHIRE HOLIDAY LATER TODAY

LOL JILL

AND TAKE CARE FO YOURSELF OTHERWISE V WILL NTO HAVE ANYONE TO MAKE SURE SHE IS OK

JHUG S AND XXX OT YOU AND V AND KATE YR GREAT DAUGHTER

[Georgepa in reply to jillannf6]

Thanks Jill - daughter in law is loopy . Unfortunately she refuses to let us have any contact with our three-year old granddaughter which hurts .

[Doglinton in reply to Georgepa]

So sorry to read that, Georgepa. We have had that and its the most painful thing. You feel so helpless. Hope it turns round, love, Jean

[jillannf6 in reply to Georgepa]

`a lovelu picture of the devon hedgerows george!

well done for posting it too!

lol jill

[Hidden]

Heady you are doing brilliantly. Just keep plodding on.............

Pat

[jillannf6 in reply to Hidden]

I AGREE, HEADY, U R DOING GREAT!

[Lieve]

Dear Heady - if I was a believer, I'd say we're earning our place in Heaven - but meanwhile we don't have to give up everything we ever liked doing, being a martyr - and for what? It's like they always say: if mum's happy, the kids are happy, or something similar. If you can't look after yourself, who will? And who will look after S if you have a breakdown? So, YES, ask for any help you can get! I know I am not staying here forever, so I am gently pushing my parents to have a 'helplist', have a maximum of support they can tap into when they need it for as long as my dad can stay at home. This is all so very hard and asking for help doesn't make it less of a wonderful job you're doing.

As for me - I didn't do much for me the first 6 months I came back to live with my parents (apart from looking for work and dealing with my divorce back in the States) - my mum was able to go out more with peace of mind - but I'm planning more for myself too, theatre last night, music today, showing friends visiting from abroad round some beautiful sites in this country...

Big hug to you

Lieve

[jillannf6]

HI HEADY

SO GLAD THAT S COULD MANAGE TO GET HIMSELF SHOWERED ON FRIDAY - A GOOD DAY FO R YOU TO START YOUR DAY I HOPE AND I HOPE YOU HAVE A GOOD WEEKEND1

LOL JILL

HUGS AND XXX TO YOU AND S

[NannaB]

Well done you! It is hard asking for help isn't it. I am so grateful to Crossroads and the Hospice as I can't ask friends to sit with Colin anymore because of his colitis. Friends can't hoist him onto the commode and clean up after not getting him there on time. The Crossroads sitters can but I never go far just in case. One of our sons comes every Tuesday for a few hours. He is self employed so can take time off. He does things around the house but this week I had to pick a prescription up from the GP. I went as soon as he arrived so he made a cup of coffee and chatted to his dad. I was out of the house for 15 minutes and when I got back, Colin was on the commode. I felt bad for both of them. Children are not supposed to do personal things for their parents. I did for my mum and dad and hated the role reversal.

Friends are always asking me what they can do for me so if they call in or phone to say they are going shopping, I always think of something they can get me. They have offered to do ironing but I don't do much and cleaning/vacuuming but I'd have to tidy up first and wouldn't want them to see behind and under furniture. I know I'm mad, to be able to get housework done but I've never had a cleaner and know I'd do it all before they got here. I love that poem someone posted here a while ago...Dust if you must but wouldn't it be better to paint a picture or write a letter". That's me.

At wine o'clock last night I had ONE glass of South African Chardonnay ( not telling you how big the glass was) and laughed and cried through Moulin Rouge.

Hope your weekend is good. I'm not looking forward to 2 nights of no sleep but at least I can catch up next week, sort of.

X

[MaddyS]

Hello Heady. Well done asking for help. I know it's difficult having been there myself. You don't like being told that you do a wonderful job, but you are great. Have a wonderful peaceful weekend. Love Maddy

[Heady]

Thank you all for your replies. Really cheered me up. Yes, that wonderful feeling only lasted until 1.00am! Up at 4.00 changing sheets, only to have to it again, when we got up. My poor washing machine, bet it's feeling just like me!!! Think I am going to have to go down the night carers route, or find some pads that ACTUALLY work. Beginning to think such a beast does not exist!

Lots of love

Heady

[Amilazy]

Thanks Heady

I have to go into another room to bellow and let off steam in early morning hours if M is not settling or waking hourly, otherwise I would probably go round the bend with stress. You are lucky S can occaisionally look after himself, M very little mobility to point Marie Curie nurses are beginning to wonder if they can continue night care which would be a nightmare due to need for 2 to use the sling and hoist. I have said I could help but they are concerned about my sleep. At present night care still provided. Anyway good news this week Continuing Care Service have eventually agreed to providing and funding Respite care at end of May and end July, so I can look forward to some clear nights or even a trip.

When you say you are getting 12 weeks at the hospice is this day care or a few hours a day, is it daily for 12 weeks or once a week? Our local hospice has provided some day care in the past for 8 weeks once a week but they are getting concerned about M choking and coughing, as well as poor movement and RIG feeding. I need to contact them again to see if we can get the daycare restarted. Do you have carers to help dress and undress S yet? I did not want carers at first but was forced into situation after M breaking her arm in fall, my fault did not realise M had left her left leg behind and tried to re step on right thus pitching forward out of my grip. Carers are a godsend as my back has stopped aching every morning as it used to after manhandling M into shower and cloths while trying to keep her upright. Only half an hour twice a day but really fantastic help organised by District nurse and continuing care team.

[Heady in reply to Amilazy]

Hi, S goes to the Hospice once a week, from 10.00 till 3.00. It's a godsend, I can plan, organise a lunch out, see friends, basically just breathe! Remember that!!!!

Lots of love

Heady

[Katiebow]

Dear Heady, hope you are feeling a bit of light relief venting on this forum. I find it such a relief to have a place to do that as don't think people really understand a carers position, I certainly didn't until put into this horrible nightmare. Good to hear you were able to get some 'downtime' it seems such a simple thing but getting your hair done or attending appointments shouldn't be so difficult. My family live a long distance away and asking friends is more difficult I think. Hope you patch up your differences with your daughter- in-law, life is too short for fall outs. Take care now. Kate xx

[Heady in reply to Katiebow]

Hi Kate, think you are muddling me up with someone else. I haven't a problem with my daughter in law. It's S's son that is a problem! Don't think he is coping with the fact his father has this evil disease. So keeps away and refuses to help, when I ask!!! Something that is going to have to be addressed sooner rather than later, but I just haven't got the energy to fight that battle. I know the poor boy is suffering, but his father needs him. He is going to feel so guilty at the end, but who I am I to interfere with that. I'm only the wicked step mother, who know nothing!!! Hey ho!

Lots of love

Heady

[Katiebow in reply to Heady]

Oops sorry for the mix up, think my mind has gone to pot. Hope my two boys face up to the fact that their dad is never going to be the same and some kind of support will come our way. They aren't to keen to discuss their dad's future as is too painful I think. Take care. Kate x

[Doglinton]

Well done, Heady. I find it really hard to let anyone know how hard it can be. We present a positive picture. I feel I can ask friends to sit and talk to him but now he is having bowel problems how can one expect friends to deal with it ?No-one really has any idea what is needed. They need to see I am coping and wonderful. I know its going to get worse and don't want to call wolf.

But at present Chris sleeps from midday until 5.00 or more. Its broken sleep that really messes me.

I'm working out how to manage toilet matters for our holiday. Any thoughts ?

Joining you for a glass of red !!

love, Jean

[Heady in reply to Doglinton]

Hi Jean, when we were coming back from South Africa, I went into mother mode. Was extremely proactive! Kept a good eye on the time, what the air stewardesses were doing. Got him to go to the toilet, when it was quiet, before, they started to show signs of serving food, or drinks. Don't want to be caught in a queue, or behind a trolley. Also, make sure he has a good pad on!!! Have you booked wheelchair assistance. This is a MUST,!!!

Lots of love

Heady

[Doglinton in reply to Heady]

Yes. I have. Its a short flight but I worry about emergencies. But we'd never go anywhere, would we ? In fact I have always found people very supportive when things happen. I must stop worrying once I have made plans.

I've never been a worrier. God knows how worriers cope !!

Hope things improve for you.

love, Jean

[abirke]

Good for you Heady. My husband has the same sleep pattern. And, like you, I have to follow him to the bathroom to prevent falls. And also like you, I am a bit intimidated to ask my kids to watch their dad. They would do it but I have gotten flack from one of my kids and don't want them all to feel put upon. Whats a "natter"? it sounds good like a conversation.. just want to make sure if when I start speaking English....hahahahah

AVB

[Heady in reply to abirke]

Hi, yes a natter is a lovely conversation with a friend, talking about nothing and everything.

Where are you in our wonderful world?

Lots of love

Heady

[abirke in reply to Heady]

I am in Northwest Arkansas. We have a university with a Razorback as a mascot. We have very good American football and basketball and even baseball. More importantly, it is a good academic school, Quite lovely here, cool, mountainous (though some of the mts are not actual mts.) deciduous trees and lots of water; lakes, creeks, rivers, down to the Mississippi. How about your terrain?

[Heady in reply to abirke]

I live in south west England, by the sea. Well estuary actually, so the sea is brown mud. But it is a pretty Victorian town, very close to the motorway (freeway), easy to get to other parts of the UK! If you feel like fighting the traffic, especially in the summer, when all the holidaymakers are heading south!

Lots of love

Heady