Rest bite care

[Ruby52]

Next Question. Has any one got info on rest bite, not for my husband, but for myself as worn out with doing everything as I used to. I don't get any help at all, it is making me feel worn out and so very stressed. My consultant told me that I need help, and must take it easy, she told him what I need, but fell on deaf ears

[rosmarin]

First get in touch with your local council . They should have info. on help available funding etc. Also try your local CAB who are usually very helpful.

I used to care for my mother and got respite care for her on the NHS but that was over 10 years ago. Now I need help as my husband cant do anything and I pay a friend to help for one day a week in the house and garden. Otherwise I would just give up! I am not fit enough myself to cope alone with the work and caring. So I do know exactly what you are talking about.

Good luck.

Rosmarin.

[Ruby52 in reply to rosmarin]

Thank you rosmarin . I did go on the council site, but only give help with the carer, I know how you feel to, as I was looking after my Mum who had memory loss for 7 yrs I had carers going in as I never would have her in a home, she stayed in her house where she passed away. I was just a busy person, was also nursing for over 20yrs now It takes me 10-15mins to walk up my stairs, as can not breath, Must have been bad at one point in my life Ha!

[Sheana]

Contact CarersUk.org .Also the Red Cross.

[Bolly]

Hi Ruby

There are hundreds of companies across the UK offering care in the home. Go on the CQC (Care Quality Commission) website and choose the 'care in your home' option. These companies offer anything from a bit of shopping or cleaning to full time 24/7 live in care. Of course you have to pay for it, but in some circumstances the Council will subsidise.

For you to go into a nursing home/residential care home for a while (if that's what you meant by 'rest bite' or respite would possibly not so easy to find a place? As these tend to be filled with elderly patients and dementia patients.

Sounds what you need is a help around the house with chores?

[rosmarin]

Hello Ruby

I have found having a cleaner for 3 hours a month and my friend for one day a week for the garden stops me from going under completely!

I find my husband needs waiting on a lot so I get less time for the chores .

Its certainly worth getting help in the house if affordable.

If your husband needs constant care you might be able to get invalid care allowance.

The CAB would advise.

rosmarin.

[Ruby52 in reply to rosmarin]

Oh bless you, Its me that is sick not him, he is just to lazy Ha! The rest bite is for me so I can get away & have a rest, & someone to look after me for a while, he just makes me wait on him hand & foot. I was so ill in 2011 that he said it was better to move back where he came from. I did I am 6hrs away now from all my family & friends. I find I am to ill now to travel to see them. I have 4 grandchildren there & did have my 2 sons one died & one lives in a very small flat. I got keys to a lovely flat for my other son, and was moving in with him, we were going to look after each other, but he died the next day, never even saw his new flat. So I have no one here, sorry I seem all sorry for myself. I do have my 4 dogs & my little cat, but they can't talk to me Ha! Sorry if I board you xx

[rosmarin]

Sorry I was getting mixed up as I forgot it is you who have the cirrhosis!

However it sounds as if you could get some help with paying for chores in the form of invalid care allowance.

Best of luck with this.

rosmarin.

[rosmarin]

I am so sorry to hear you are having such a bad time and far away from your family.

What a tragedy that you lost your son, I do hope you manage to get a respite break somehow.

Its good that you have your animals, they are the best! I miss my cat so much - she died quite recently..

The irony is that my husband used to be very good in the kitchen though not handy in other ways but now has the cirrhosis and asbestosis and is so weak and exhausted all the time.

It was very interesting to read your message though I felt very sad for you.

Hope you get some help soon as well as a respite break.

I have just remembered that some charities give grants to people in need - one called the Elizabeth Finn Trust gave a friend of mine a grant of £500 to help pay some outstanding bills after her husband left her.

best wishes from rosmarin.

[Ruby52 in reply to rosmarin]

Are thanks Rosemarin, I will look up that. I'm sorry to here about your cat, I moved up here 2011, I was so ill I had been here 5hrs & was rushed to hospital, my cat made it all the way here (from the south) and she died 3 days later, I saw her bourn she was 16yrs, and I never got to say goodbye. I love them all so much, but like I said I do all the talking Ha! That's handy to no I might get help with bills as £294 gas just got here I no I can get a crisis lone but then you go short every week while they take it off. Hay Hoe. Hope things are getting a bit better for you xx

[rosmarin]

Hi Ruby

I do hope you get some help somewhere - you need Citizens Advice they are usually very helpful and know the ropes. However the Elizabeth Finn has advice also and a helpline.

What a shame about your cat after her long journey.

My cat a gorgeous Birman was a rescue cat. She also lived to 16 but in very poor health. I love all animals and find them a great comfort. My husband not very good so exhausted cant do anything but I am trying to get the best diet for him - if he will eat! It seems so important to have healthy food when you have liver disease lless salt and keep glucose levels up with regular snacks. And of course no alcohol which he misses.

You have been having such a bad time, will be thinking of you and hoping you get some better luck soon with bills and respite care if possible.

rosmarin. xxx

[Ruby52 in reply to rosmarin]

Hi thanks for the info. Us animal lovers are so silly. we have them, then when they go it is so upsetting, I always say never again, well 4 dogs and 1 cat later Ha! I even cry at those dreadful t.v. ads. I have been on the internet looking for anymore info. I to wanted to no about a good diet. I put in cirrhosis of the liver, and lot's of sites came up, one good one is medhelp.orgcommunity. You do the same as on here. profile etc. But there are allsorts of things that you can look up, also they have a chat page, I read a few and they are not so careful what they say, some swear, but then again you feel like that sometimes, there seems to be a lot of people like yourself, looking after family .stevehemp. on here is good to talk to, he has other info, good on diet, We talk quiet often. You say that you husband feels rough at the moment worn out, I found out looking back on my sons papers that they gave us at Kings, you need energy food, full fat milk, cheese, cream, pots, toms, bread. my saying was (little pickers wear big knickers ) Ha! well not now, I felt like he did last week, and I have more get up & go now, little but often, I did not understand levels of the liver when you have this. my Q was how long have I got, & the over all rate, I was told in Nov that I had 6mths, she told me last mth that I was at A level now I'm at C level witch was better, well I am hoping I heard her wrong as 3 sites say A,15-20yrs B3yr plus & C 1-3yrs. I am due back in July so we shall see, feel like that is it today, what's the point if I'm off soon, well I feel like your husband need a drink, but I wont because that will be it. I used to drink heavy from the age of about 42yr. I stopped the drink just like that, no prob's its been 6mths now. Hard as my husband drinks 7days a week, but like I said he don't care. Well he is taking me out today, Asda YAAAAA (what a nob) Well talk soon, don't do to much, remember you need rest to xxxxx P.S looks like I wrote a book Ha! x

[rosmarin]

Hi Ruby

Yes its true about the animals but we get unconditional affection from them I guess.

I am trying to get my husband to eat healthily but he says he has no appetite and only wants sweet things. But I do give him a proper meal each day and try to keep his sugar levels up with snacks when I remember! He is very weak and exhausted and also has the lung problem from working in a lab with asbestos for 6 months as a boy. So he has two major health problems.

He comes from Lancashire and grew up with his father smoking and drinking heavily and he was the same and the doctors seize on this to judge him.

I have been on these other liver sites and found some helpful ones the most recent is Louisville Med School in the States,they have better treatment there of course and get dieticians etc.- provided you have medical insurance!

We must get rest too as you say - I always stay up late to get some quiet and looking up medical sites! Sometimes they are confusing, dont worry too much about the forecasts A level C level etc. every person is different. The hepatologist said to my husband 7 years ago " I thought you were a goner!" and somehow he is still here. I have been buying glucose or dextrose tablets for him to take to help boost his energy.

Rosmarin X

[Ruby52]

Hi Rosemarin Where do I start. Well my oldest friend told me that all she eat was sweets, I never had a sweet tooth but now I just have to have it, it's like a drug, What you should be doing is, giving him small amounts of food several times a day, little and often, or like you say he has no energy. Diabetics have this, and the way I feel is the same, that's why when you are in a hospital bed they will take your blood every day to check sugar levels. He must also have something before going to bed, as the liver has to wait 7-8 hrs before getting food, it helps with the toxins. If I eat before bed I feel better when I get up.

Oh god the doctors will always have it in for you if you smoke, Is he still smoking now!! I still smoke and they have not YET told me to give up, not that I would, can not do it all. Funny I stay up on sites if there is northing on T.V. Also when you are this poorly the night time is worse. I see what you mean about the A--C levels I will have to ask my consultant again, the old man was with me and he can't remember Ha! I would not waste my money on glucose etc as just healthy snacks dose just the same, I may eat a little bit & an hour later have a bigger snack, it could also be putting food that looks a bit big that will be putting him off, having this means that our way of eating even doing things from day today change . It must be a northern thing to drink to much, I met my husband down south where he was working, he told me that you can have a drink any time, even 5am, I was not like that at all, but when you live with a drinker, and me being at my weakest point, well have a drink and forget. Sure paying for it now. And he still the same Ha! Do you mind me asking how old he is,I will be 53 next month still to young my mum in-law is over 80yr, been thinking 30yrs extra I could have had. xxx