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Who cares for the carers?

Hi, I'm new here so let me introduce myself. I've been caring for my husband now for about 2yrs or so, he has a very aggressive form of Rheumatoid Arthritis, Raynaud's Syndrome but has just recovered from Ostrich Syndrome after having a Mini Stroke. I have claimed and am getting CA. My main problem is my own health is having a bit of a Hisie Fit, Asthmatic, COPD(mild) and now Vasculitis with all sort's of problems that brings about health wise.

I could go on but its starting to sound as if I'm feeling sorry for myself but I don't. I'd rather have a good laugh as I find that help big time.

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Welcome to this very kind and caring site Boudica. It often happens that the carer has health issues too. You do such a great job caring for your husband but it’s stressful.

I’m glad you get Carers allowance and hope you continue to have a laugh too.

Nice to meet you. Xxxxxx

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Hi Boudica

I have health problems of my own spinal cord injury incomplete and liver problems to name the main ones that have hit me the last few years, but have been a family carer for one family member or another for nearly 50 years, I started when I was 11with my mum and it just spread .

Crickey, saying it like that sounds daunting. The main one was my autistic son who is now in his early 30's.

Anyway, I'm delighted you have carers allowance, have you thought about seeing if you can get any help from social services. They can sometimes help with aids and adaptations through their ot team or even give some help with personal care of it is needed through a needs assessment for your husband. If you are really lucky they might do a carers assessment. They should offer you one and it should be separate from your husband's assessment as that is the only way to really look at your needs. It depends on where you live for what they will offer. Life can be tough for family carers. Helping loved ones can sometimes get in the way of being a wife, mother or whatever relationship you have as it asks so much more of both the informal carer and the person being helped. Having now found myself firmly on both sides of caring and being cared for it really hit me.

If you can find any local support groups or carer services they can be really helpful, but so can doing something totally away from caring like volunteering. Sounds crazy but I know a few carers who do that just so they have some me time and something to talk about at home.

Take care and all the best.

Gill x

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Hi, thanks for you reply. At last some one who has had to be a carer most of their life. Like you I had to start early as a child, hence my need for humour and warped sense of humour.

I come from a very large family, 4brothers, me, another 4 brothers then 2 sisters, most born with-in 14-24mnths of each other. Earliest memories from 2-3yrs running round helping with sibling older doing his shoes up as he couldn't do it for himself to the younger ones with what ever they need. Changed the first nappy, on my lap by the age of 7. Cooking for the family by the age of 9yrs and on it went, being mum number 2 to all the younger ones.

At 12yrs mum had the youngest and had trouble coping, so had to take over to the point of missing school completely. Then sadly youngest became very ill and nearly died, she ended up severely brain damaged and quadriplegic, totally reliant for everything for the rest of her life.

As you know parents get old and sick and then need our care and help. Dad had a very bad stroke and needed care. Mum, minus one kidney, the other failing and problems with her blood and veins. Youngest sister still at home, late 20s by then, no outside help apart from day care and 2wks respite a year.

Harsh choices had to be made as I was the only one with the back bone trying to help and cope. Along with raising my own 4 children by myself and trying to work full time and yet still be on call for my sibling's who seemed to think I had nothing better to do.

Eldest child serious asthmatic and in hospital 10-12 times a year and juggling 3 younger ones, bit difficult at three in the morning having to dragged them out of bed and down to A&E with a ill child with breathing issue's. But some how we cope, well I had to not sure how they managed.

Anyway dad and some silly social worker arrive at the house to asses dad coming home after a second Stroke. Me I'm gob smacked, WHAT! you are joking aren't you? Dad in a wheel chair unable to do anything for himself. Youngest at home unable to hold her head up for 5seconds and mother in rapidly failing health, with one kidney barely coping, high blood pressure, on Warfarin and with problems with her veins. Are they kidding? Sadly dad had to go into a nursing home. Mum became so ill she died and the youngest went into a care home.

Out of 60yrs managed to have 15yrs with out having to do to much running around after others. Then wham, poor hubby number 2 suddenly goes down with severe aggressive Rheumatoid Arthritis and Raynauds.

Oh well at least I got 15yrs for good behaviour, and this is a walk in the park. Not. He just had a Mini Stroke. Oh well we'll get over that and work our way through it.

Trouble is me and my health and I don't have the time for it and neither do others it seem. Apart from hubby, darling daughter at 39yrs finds she pregnant. Bomb-shell no1. Bombshell 2, it looks like it has Downs. Bombshell 3, she has a blood disorder and has to inject herself every day with blood thinners. Bombshell 4, needs high dose or Iron. Bombshell 5, Gestational Diabetic.

Where was I, oh yeah me, hmmmmmmmmmmmmmmmm. Ah yes me. Late onset Asthma. Quick duck, some one else may need me.

All clear?

COPD, duck, who else needs me.

Clear?

With in a few months of COPD, abdominal swelling and pain, pain in kidney area and blood in pee, on going for 2yrs now. Loads of tests. Zero, Nada, can't find anything. Oh an rash on back that no matter what the Drs throw at it, it just laughs. Finally after up teen bloods, biopsy's (most where the sun never see's) Diagnosed with Vasculitis.

DUCKKKKKKKKKKKKKKKKKKKK.

White flag.

Is it safe

Can I have a glass of wine?

Are the men in white on their way with a coat that does up at the back?

x

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Hi

Not sleeping legs having spasms. You have been greedy on the caring front. I will use the humour because like you my caring was and still is interesting. Started with mum's mental health, then dad had heart attacks and back problems, sister as a child had a couple of nasty illnesses but fortunately got through childhood, met hubby and he had a whole host of family issues in terms of caring. Our eldest had asthma and eczema and youngest autism.

When he was only a few years old he jumped from the top of the stairs. Hubby caught him and crushed some discs. Trying to ease his back he was laying on the floor stomach down a little one about 7at the time decided on shoes to walk the daddy plank and jump off his head. Another time he decided to play Tarzan and swing from his light which was on at the time. Autism can be really interesting at times. I ended up packing in work until he turned 18.

Hubby's dad and sister died as did both my parents. My sister has cancer. She has had it about 4 times now maybe 5. She sure is a fighter.

I work with informal carers. It is a case of bus mans holiday. The experience I have had though helps me understand the issues carers face and it is getting harder. It is worth seeing what carer services are in your area as well as looking at carers UK and carers trust.

Still it has meant I've met a lot of people come things I wouldn't normally have dreamed of doing. I have surprised my specialist that I am not paralysed following the injury. I forgot to tell him carers aren't allowed to be ill. I can't walk much just a couple of yards but better than expected. I'm lethal in my wheelchair going downhill, I can do some tight turns and watch people looking at this woman whose nearly 60,overweight behaving like a child of 8. I've decided not to grow up. Can't stop getting older but I can still be a child at heart.

Gill x

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I had a child who liked to fly at times as well, his first attempt was at 18mths, out of an upstairs window that had a lock on it. Must have been the baby version of The Great Escape. Thank goodness he wasn't too badly injured a dislocated shoulder, a split lip and one hum-dinger of a black eye. You can imagine the looks I got when we had to go out and about with that.

My sister is still proving the Dr's wrong, "we have to tell you she won't see her second birthday". "We have to tell you she won't see her 5th birthday" and so on. Well she's 49 this year and still proving them wrong.

One of my daughter in-law's is receiving end of life care, poor girl.

I'm sixty-one this year and still having to go by shank's pony so can't whizz down hill's and do wheelies but I do drive. Hubby say's I drive people nut's more like. I'm still a child at heart too but at times the brain and the body are at odd's with each other. You know what I mean, brain say go on lets do it, so you do. Body says WWWWWWHHHHHHHHHAAAAAAAAAAAATTTTTTTTTTTTT!!!! and gives you a short sharp corporal punishment. OW. Still do again though. Hahahaha.

Its good to be a nutty old lady at times

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Hi Boudica, it sounds like you are doing such a good job in caring for your husband and it is lovely that you are so positive.. You may find the following website address to be helpful---

Carer's Trust

carers.org

There is a lot of information on this website that you may find useful. Look after yourself and please stay on this supportive forum where you will receive help from other members. Thank you and best wishes.

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Hi Boudica1

As one of the ambassadors for this lovely group of people, I'd like to offer you a warm welcome. And I see that not only have you had some replies, but seem to have found someone with whom you can really relate. And that's great. It's what we are all about. Please come back, as often as you like. Very best wishes.

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Boudica1

Hi welcome to the forum. I have just come out of hospital after a 4week stay for a chest infection. Read your post, there are ways of getting help as a carer & services within the NHS that may make life a little easier for you. I don't know where you live but try this number and see whether they can put you in touch with or give you a number for the local Palliative Care agent . 01273 523021 (My local contact). The services and advice I've had from or thro' these people has been great. It may not totally solve your problems but it may point you in the right direction.

Good luck.

IKeith

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Hi

It's good to have a sense of humour in these situations. Making me smile reminded me of when we went to see Rainman staring Dustin Hoffman and Tom cruise. My hubby and I got some funny looks because we were laughing quite loudly at some parts and code to tears at others. It was clear some people thought we were being disrespectful. I would have loved to have been challenged because living with autism we could just so picture some of the things happening, like not wanting to go on most aeroplanes due to safety records and the watching tv copying phrases. We had an automatic we can believe it moment and just laughed at the problems it would cause in real life. You have to laugh or you go under as you know only too well.

Has your daughter in law got much support from services?

I was at a meeting today about sensory issues it was mainly for carers but a few people who have autism also came. We all had a few chuckles about how some people don't like other people's noises but can be loud themselves. It was logical to all of us why it happens, but it made us all smile because we all knew the problems it can cause.

I was out working visiting a hospital today and I got asked where I got my wheely from. I told them and the cost we had a quick discussion and I suggested a couple of mobility shops for the person to try.

Just to make you smile it is amazing what equipment you can get to help you now. I went on utube because I saw this pole to help you dress. I have to be honest it was very unwieldy when I saw it demonstrated. I saw a toes cleaner I bought that to go in between my toes but it set my spasms off, but something I found really difficult to believe would be useful was a personal care wiper for you can probably work out where.

Any good ones or unusual ones you have come across?

Gill x

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I know some have found my humour odd and out of place but like you have had to cope with some "odd" moments at times so can relate to it. The funniest moments are other people reactions to me and mine. The trying not to look and failing or not asking anything because they're embarrassed and thinking they will embarrass you if they did.

Then there's the darn right rude one's who loudly tut tut and even comment saying things like "they should not be in a public place" and so on. I must admit on one occasion there were two who were not only looking very disapproving but coming out with some really nasty comments. I lost it a bit a spoke very loudly myself to them and told them they were very unlucky in having parents who could not be bothered to raise them to be polite and caring people. It shut them up but I still had to make a hasty exit as I was so upset.

Anyway on to "use full" equipment, yes some are some what cumbersome to say the least. Best trick I came across was to use an old wire coat hanger you know, the ones dry cleaners use to hang your clothes on after they've cleaned them for you. Well if you bend the shoulder parts to suit you, you can then use the hook part to reach the zip at the back of your dress. When I'm having problems threading certain colours of cotton through the eye of my sewing machine needle, I place a piece of contrasting paper behind the needle. Magic, I can see the thread and the eye of the needle. Now I just need a steady hand.

It helps though that I can sew, so at time have made clothes where the fastening are not in some of the awkward places. Making it easier for those that can dress themselves and more comfortable for my sister who can't sit up. Zips and some buttons at the back of garments can be very uncomfortable for her and at times have made her sore.

My daughter in-law has a very good team helping her and fantastic people at the hospice she has had to visit a few times. They have listened to her wish's about her actual end of life, explained everything to her and between her, my son and her team have a plan in place. They even arranged a meeting for everyone including her closest family members to explain what would happen and how and when. She's so brave and if she want's to stop the meds and machines she now knows it's her right to say so and when.

One funny thing that stick's in my mind happened a couple of years ago. I was at my daughters house one day and had to go up stair's. My 5year old grand-daughter was at the top, as I started up my knee was giving me jip. Ever step I took I said ouch my knee, ouch my knee. Grand-daughters was watching and then decided to come down the stairs. Every step she took she said "ouch my elbow, ouch my elbow". I laughed that much I nearly didn't make it to the bathroom.

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I love it. I can relate over back fasteners I can't use them now as they hurt my spine. You are good being able to sew. My mum wasn't into sewing and to be honest wasn't a good teacher. My nan was a fantastic seamstress but her an mum never clicked, my mum always preferred her dad. School was so boring how they taught you that I didn't really learn. I made a dress at school once and the top had such strong points in strategic places that it looked like I had comes shoved there.

I might take your coat hanger idea to a carers group. They like those kind of ideas.cheap and no frills, but do the job. Be interesting putting it on a pip form under equipment used due to disability.

I liked your needle idea. My problem is seeing the hole most of the time now when I hand sew. It's funny but I'm sure the thread is thicker now it never struggled to go through when I was 30. I know it's the holes getting smaller. No comments about me needing stronger glasses, they haven't made any that could lift me. sorry, my warped humour kicking in.

best out down I used was when my son lay down in Woolworths. The looks he got, you can imagine. So I say down and said to this woman who looked like someone who had smelt something distinctly unpleasant "it's ok he's a genius having an eccentric flip".

Remember next time tell your granddaughter that you are just voicing how the stairs feel being stomped all over. She sounds so smart I would love to know what her reply is.

take care

Gillx

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Grand-daughter is very smart, to smart sometimes. I started to sew when I was 6 or 7, needle craft was the only girly thing about. Plus cooking as well, started cooking cakes at first and progressed onto family meals by 9.Made my first dress when I was 10. I learned these things at home, school teacher showed me how to embroider properly doing French knots, satin stitch, stem stitch and a whole host of others when I was about 8. I loved to draw as well and got fairly good at it but having kids I didn't have the time any more.

School was boring anyway to me it was a total waste of time by the time I got to 11yrs. Was needed at home helping mum but had to show my face from time to time.

My poor mum always wanted a girl she had 4 boys before me so was over the moon. Sadly for her I was not a girly girl, hated wearing dresses. Instead I would be out with my brothers climbing tree's, swinging upside down from the branches and into all sorts of mayhem and scrapes. The times I came home with the skirt of my dress ripped away from the bodice and had to face a scolding. Well what do you expect? When ever I asked if I could have some trousers but was told "trousers are for boys, dresses for girls", hmmm, can't be helped then.

Thank goodness things were different by the time my daughter came along. Still got the occasional disapproving look from mum at times though with the comment she's a girl. Oh thats why she looked a bit different when I changed her nappy. lol

Chrisx

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Hi Chris

I know those skills can save a fortune, but I think I would have been given even more to do if I had done it. I did quite a lot of gardening and decorating as a youngster. As you can gather I wasn't particularly girly either. I used to make a mean cake though. I used to sell them at church coffee mornings. Funnily enough it was the only thing my mum praised me for and showed off about my skills on.

Your granddaughter sounds a treasure. I love kids who are polite but have a brain and a quick thinking brain and doesn't take prisoners. That's how she sounds to me.

Your son and his wife also sound very brave.

You must be so proud of all of them.

Gill x

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Hi Gill

I did a lot gardening and decorating too only now it seems to take me forever and leaves me totally shattered. I used to love working on cars as well, first as a child with my dad and then with my youngest brother. Really can't be bothered now as the modern cars have to many computer systems and have taken the joy out of it.

Yes my son and daughter in-law are very brave in facing up to her illness and how she is facing and preparing for the final out come. It makes you realize just how lucky we are.

Its great to be a grand-mother, all the fun in bucket loads but not the worry you have with your own. Well not to much worrying.

Had to go to the Dr's yesterday as the pain in my feet is driving me nuts. Another trip to the Vampire's and some tablets to try and ease the problem. She thinks it may be due to this vasculitis but like me we're waiting on the specialist to diagnose which type I have.

Back to the gardening, hopefully will be doing some this week-end as its looking a but scruffy. I even thought about having that fake grass put down as mowing the lawn can now take up half the day, tis only a small patch an all. lol. Aged body telling me to behave again, no chance.

I wonder if the neighbours would complain if I got a nanny goat? She could eat the grass and we could have the milk. Thats grass under control and I won't have to go to the shop for milk, 2 chore's and money saved, lol.

Chris x

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Hi Chris

The goat sounds a good idea. Very eco friendly. The smell can be interesting though. Gardening is a bitch now. My brother in law and sister help with it as hubby has never been into gardening. Maybe I should find out the rules about keeping livestock in the city. I remember as a young child my mum keeping chickens. They became a nuisance though due to the rats and the odd fox. The good also was really pungent. We used to live in a town when I was young.

Had to go into work to deal with some of my backlog. It was nice having the peace and quiet with only my hubby who is the manager in.

As a child I think although I was very shy I still had the starting of my career choice. I was only about 11and as mum was ill I did a lot of support for my sister. I taught her how to read and the school had this stupid phonics approach that confused her. So one day straight after school I had to rush up to fetch her as she is 7years younger than me and I asked to talk to the teacher. I explained that they were making reading difficult for her as she had already learnt how to read and spell properly. Fortunately the teacher listened and they stopped making her do this ita reading scheme.

My work now is in part as an advocate.

Take care and be careful with your legs and feet.

I go round to my son's house tomorrow. He and his worker are cooking dinner. It will be Bolognese and jam roly poly.

Gill x

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Lol, the smell wouldn't bother me as I grew up on a dairy farm as for the dung, thats free fertilizer. Don't arf make the flowers and veggies grow. Chickens and fowls do attract the rats so you need a good ratter. Our ratter was a Siamese cat, mouse run's across the floor, one eye opens and then back to sleep. Rats was his specialty (not in the house I hasten to add) along with fish once he learned how to catch his own and he was partial to a rabbit now and then but never went any where near the chickens. Lol, I wonder why?

Chris x

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I think the cat knew who was mistress. It must have been fantastic being on the farm although I know it is a kind of life everyone learns to do things as soon as they can walk and hold something. The natural smells are much better than fumes.

Take care

Gill x

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Hi all

Have you seen the government green paper called the carers action plan. You can access it via carers uk.

Gill

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Not yet, will have a look thanks for the heads up. x

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Hi Boudica1. Just to wish you a warm welcome to this group which is so supportive and helpful in all aspects of caring. It's great to have such a friendly bunch of people to share our combined knowledge, ask questions or put forward your own suggestions and even have a good rant whenever you need it.

I'm a bit late in getting around to welcoming you as I've been away for a few days and I see that you've already had lots of replies, so just to let you know you are most welcome to visit here as often as you like, knowing that we all care and will always try to help in any way we can.

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