General Chat

Hope your grandsons helped you out a bit and also managed to cheer up their grandfather and take his mind off things for a little while.

Let's hope tonight is calm and you both get a good sleep, makes all the difference but if your hubby had called you to help him when he first had a problem with the catheter you wouldn't have had so much to do with the stripping the bed etc and he would have been more comfy. Swings and roundabouts eh?

Take care, hope life gives you some good moments for a change

Lizxx

oh i hope so brenda , i remember my dad s tubes leaking , its so hard watching these hard working and retired loved ones going through this they must feel all there pride has gone, he is so lucky to have such a caring wife , it was very difficult for us to help mum and sdad at night and he wouldndt have wanted us there , i think you are amazing doing all of this , sdad went into the hospice as mum couldnt do what you are doing , i kinda took over then , i know they were doing there job but i became very protective of him , i had a huge onsuite room with fresh fruit , its strange they were forever telling me to get some rest or to go ho,me but i couldnt let him go alone his daughter from his first marriage was there too

You wouldn't believe my run of things going wrong!!
Got up this morning to find my OH had had a problem with his catheter and was in a wet bed.wouldn't use his panic button and wake me up so had a bad night.
Fortunately I have a washable mattress protector on his bed,but the washer and dryer are now going full pelt(thank goodness we have these things these days).
Hope this is the end of panic stations!
2 grandsons coming today,so am doing a roast for thewm and hope they do a few little jobs for me.

That must have been scary for you Brenda, thank heavens you had a good neighbour around to help. I think you need to complain and/or find out what you are supposed to do if the same happened again and no one to help, and no one on call. It's disgraceful, I suppose the only thing would be to call an ambulance who could run oxygen from their motor somehow?

I think by the sound of it you are in need of personal support more than anything else, so hope you can get some, aren't the MacMillan people there for carers too or is it Marie Curie.
It's bad these days that various agencies can come in but not be allowed to do very much, like home helps were stopped from doing cleaning and such but just allowed to do shopping or get pensions etc. Crazy when it's more practical help you need most.

Hope life remains bearable, you are remarkable and always have been, try and keep yourself as well as you can and keep your spirits up, your hubby has a gem in you and I am sure he knows it.

love
Lizxx

Goodness Brenda, glad you got it back on again. Emergency electricians not a lot of good then. Maybe you should complain, surely there should be somebody on call 24/7.

You won't believe this...sitting watching TV,suddenly it went off,oxygen machines,everything except lights...called our home serve insurance for an electrician,supposed to be emergency,no one in till morning.tried a number of electricians...no one in to call out.A neighbour came over and we turned every plug off in the house,OH on emergency cylinders.Over an hour trying the trip switch etc.eventually it was a small lamp we keep on in the hall on a timer.Thank goodness we are now back on,but it was panic stations for a while as the heating was off as well.I don't need this at the moment!!...but am I relieved we got it sorted with our neighbour's help.

Hi Brenda,
I have just seen your thread and as you will have read there are always people here to give support and a cyber hug to you.

I have had plenty of that from the caring members here in the past year.
There is always someone about.

Thinking of you and sending hugs

Teresa x

Glad you are having a better day today Brenda, please take good care of yourself.

Annx

brenda i think your amazing remember what everyone has said we are all here for u xxxxxx

Hi Brenda,

May I wish you and all your family all the best for 2011,

Take care
jean

Bless you Brenda, I am sure your OH appreciates what you do.

Ann in glos,
Thank you for your comments.
Yes,my OH was on 4 litres oxygen when first diagnosed and he had portable bottles.We managed to travel to our house in Southern Spain by car with his oxygen machine strapped to the back seat and 4 spare bottles.We then had to go on to liquid oxygen that we filled from a tank outside,but when he got worse,going out wasn't an option as he is on 2 machines at the highest level possible.He has a bathroom next to his bedroom and has a minivator bath seat,but that got too much for him to manage alone,so I have bathed him,but the home care hasn't managed it as well.but I think we will have to accept that.
So,yes, over 4 years on,33 pills a day and steroid induced diabetes,we are still struggling on,but as long as I can keep on going I will.He would hate to be hospitalised.....in sickness and health etc,etc.
Brenda x

Goodness Brenda you must wonder where your strength comes from sometimes, luckily you do seem to be able to tap into reserves somehow. My thoughts are with you. We have a good friend who is diagnosed with lung problems which came on suddenly a year ago. He has portable gas bottle and so far can get around by driving but has deteriorated in the past couple of weeks a bit. So I do know a little about your OH's problem. It must be so depressing for both of you. Well done your daughter for going to help her brother. I too remember how devastated you were when your loveely DiL died last year.

(((((hugs)))))

Ann and Liz,
We have been offered respite care and the Macmillan nurse has been (didn't know they dealt with other things than cancer),but my OH is a stubborn male and didn't want to know.He is in his "comfort zone" and I do believe that he would give up altogether.Here he gets the food he likes and talks on the phone to our friends and sees callers etc.To hear him on the phone he sounds so well and says he's fine.
we have a friend who has come over the last few weeks and sat with him while I went shopping.She is a sister at the local hospital and he has talked to her so she tells me.
If he were in hospital he wouldn't have his comfortable lift up bed or his recliner massage chair.He has everything I can think of(and still thinking!)
social services can only help so far and these days have so many restrictions.Health and safety!!!Did you know that district nurses can't give a suppository now,can't carry spare medical equipment or store unused supplies.We have boxes of unsuitable equipment that has been replaced by some other brand and they can't take it back...and it's all sealed.
We have asked for someone to come and sit with him...but there is a waiting list!
We are in a post code lottery as well.We were told he would get 6 weeks free home care,and then it was changed as it was only a certain area and we had to pay £13 per hour.I queried this as it is all the same county and I said that 5 years ago we paid over £2000 for a hernia op for him and the price of the bed,in and ordinary ward for one night was £675,and having him at home is saving the NHS a lot of money.This did cause them to come back and say we could have it free for 6 weeks,but we haven't used it much yet as the time they want to come he's not been feeling up to being washed.
I had a decent night's sleep last night so am feeling a lot better today...so,one day at a time.
Thanks everyone
Brenda x x

Dear Brenda,

I remember you and feel so sad that things have deteriorated for you and your husband, and especially over Christmas time with your daughter going away soon as well.

Is there a Befriending service near you where someone could call on you sometimes just for a chat and a cuppa and to give you a shoulder and an ear when you need it? They don't judge and are vetted before being sent to you but it might be nice to see a different face and to have someone to talk with about normal things. Maybe also someone to come and sit with your husband for him to talk with if he can manage it, so you can get out for a break or to let him say things he doesn't want to say to you. It must be so hard for you both.

Twentyone years ago at this time, my Dad was dying from lung cancer, so I can understand what you are going through, Mum had me and my two brothers on hand to help a bit and sit with Dad and listen to her worries too but it was difficult to put on a front, with Mum and Dad's 44th Wedding Anniversary just a few days after Christmas, we knew they were always 'last ones' as we tried to be as normal as we could.

Do you have any medication to help you relax, maybe something to ease your anxiety or to help you cope? I hope you have a supportive gp.

Please feel able to come and talk to any of us here, and know we are all thinking positive thoughts for you both.

It's lovely that your daughter is going to help her brother - I well remember the worry you had over your dear daughter in law and how sad it was when she lost her battle last year.

My best wishes to all of you, treat yourself kindly and hope you can get a bit more help and support

love and hugs
Lizxxx

Hello Brenda,

What a tough time you have had, you really need a little more support especially with your immediate family being so far away from you.

If the social worker could arrange, would you both consider respite care?

This works well for a lot of people in your situation thus giving the client a good standard of care with all his needs met, importantly it gives the carer some much needed rest and enables them to do what the are unable to do under such stressful circumstances. To be able to get out of the house for a shopping trip or a visit is something we all take for granted until it is no longer an option!

Annx

Thank you all for your support and kind thoughts.It does help.

My OH hasn't been in hospital since he had a heart attack in Sept 2006 when he was first diagnosed with pulmonary fibrosis,which is the lungs getting hard and netted.He was given 2 years expectancy which he has well and truly beaten.We have known there is no cure,but would gradually get worse.He isn't a bad patient and we keep cheerful.We were able to go out with the portable bottles until 2 1/2 years ago,but we managed a holiday in Cumbria in 2008 and it was such a strain that he hasn't been out of the house since.
This year I joined Carers outreach to give me some "me" time,but have only managed to go once as I can't relax.I go out shopping but have the phone with me.He has a panic button and we have a key safe,but he has been reluctant to use it(I think he believes that the paramedics would turn up and whisk him off to hospital)....however I'd just gone to bed on Christmas Eve after the performance of getting him to bed,fitting his catheter,which is a newer addition.as when he loses his breath he can't help.He sleeps in a bedroom downstairs and I am upstairs.I have a phone beside me,would he use his button....No...He was ringing a bell I'd put there before.Eventually he did press his button in desperation,but was in such a state that I won't go into it except it was a S***** Christmas(a word I never use!I was up till 3 am after the clean up.Got my washing machine on in the morning,1st load OK,2nd load the machine leaked the rinsing water all over the utility room floor,good job it's tiled!
After that he had a dreadful week,and we couldn't get a doctor as it was bank holiday...no answer from the out of hours or NHS direct.
We have a lovely district nurse who is very caring,and we have a home care assistant occasionally,but I will speak to our recently acquired social worker on Tues,as I need more support.
My daughter lives 90 miles away and 2 sons live in Oz and 1 in Guernsey.
Daughter is off to OZ on Thurs to go and help her brother,who lost his wife in June(some of you may remember)as their 2 children(11&9) are on their long summer holiday,so she is staying for 6 weeks and leaving her own family to be with her brother.
I have good neighbours who helped me out with shopping when I couldn't get out in the car with the snow..so I am blessed there.

It does help to get it off my chest.I had all this in the early 80's when my father died and mother had depression for years,but was younger then.Having said that, I cope,but nobody realises how draining it is,and it is difficult to entertain family now.My daughter and some of her family came yesterday and I cooked a meal,but couldn't cope with making up beds etc.We have 2 grandsons coming on Mon,but will do a few jobs for me and they're no trouble.
I do thank you for listening.
Brenda x

I remember you, Brenda.

I am so sorry that you are having such a difficult and sad time. One of the best things about this site is the way that we give mutual support.

Please be assured that you are and will be in our thoughts.

(( gentle hugs ))

Hello Brenda, I am so sorry that your husband is worse and that you had a rotten christmas, I can imagine New Year was the last straw for you. It is good that you have felt that you can come on here and talk. I have not been in your situation and dread ever being but I want to offer you my support. I shall send you my positive thoughts and (((((hugs)))))

Hello Brenda,
I've not been on this site much in the past year either but remember you well. I'm so sorry to read this and I wish I had the right words for you. I will be thinking of you and your husband often and saying a prayer. This site is wonderful for support and knowing someone is there is a big comfort.
All the very best to both of you.
Tina x