I am a 30 yr old asthmatic, who because of her condition and the limitations it has placed on my life, still lives with her parents. Twice in the last year my parents have had to sit next to me in ITU whilst I fought for breath. This has had a major emotional impact on them and has implications for our day to day lives. Each time my asthma takes a downward turn they are on edge. The refer to it as 'living on a knife edge'.
I am lucky in that I have a good support network of both professionals and fellow sufferers, but they feel that they are very much alone, in that other people can't understand the worry, stress and unpredicatability of living with me. I am at present in hospital for about one week in four.
If anyone knows of any support / literature for parents of adults with long-term illness, or has any help or advice, please contact me. We live in the Poole / Bournmouth area
9 Replies
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My mum has asked me about literature too esp aftert my last HDU admission so would also be interested in any info.
Mum also said it may be useful to give to other family members/friends who dont understand not to mention possible employers!
Asthma UK dont seem to have anything suitable - Mods do youknow the righht contacts to perhaps suggest a possible leaflet?
Whilst we are on the subject what about the children of suffers. My eldest has had to call my mother to say I am on ventilator more than once, he often goes to the hospital with me and is very good at makng sure I get the right treatment. He holds my hand and looks after me. I hate the fact he does this, it is not fair, at no point in my grand scheme did my teenage son have to take on this enourmous responsibilty. The others have seen me collapse in my front room and seen the paramedics doing their stuff. I missed every single childs birthday last year and mothers day. It is so normal for me to be ill and in hospital they don't even bother telling teachers these days.
Sorry sort of thread hijack but people forget that some of us have children who are riding the asthma roller coaster with us.
Bex
Bex= you are quite right my kids have been through and seen too much over the years because of me, and there is nothing out there that is support for them whattever their age, they mustnt be forgotten either.
Does anyone know how to approach AUK about covering these areas?
Blackfrog
It may be worth looking up the carers asscoiation, again it all depends on your area but some groups are very active and meet up and do outings where you can chat about life living with somoene ill. I know the one local here have great services and members who you can ring and talk to when things are tough.
This is their site and should point you to local information
There is an organisation called young carers which can be useful. Even if your kids dont care for you all the time in some areas there are great porjects running for them where they can meet and chat about what its like to have a relative not well and not be able to do things other kids do etc.
As ususal if it is good it is depends on what your local is like but i have heard some good reports.
I know its not totally asthma orientated but may be helpful.
It is a shame there are not the support networks for family but yet again I am sure it will be down to resources
I pm'd the person who originally posted this message. But it looks like it might be helpful to others to pass the information on, on list.
I have a lovely neighbour who has Chronic Obstructive Pulmonary Disease and she runs a local support group. When I asked her where support might be found around the country she suggested people contact the British Lung Foundation who have Breatheasy support contacts. I think you have to be a member and the cost is about £20 a year but she swears it is worth it.
Hope this helps someone.
Jacqui
Hops - My daughter was referred through to Young carers by her brownie Leader ask your DC about it.
They pick up and take them to events. It didn't really help us as actually isolated her through the realisation things more abnormal than normal but they've helped loads of other kids and they do loads of things worth a try.
Slight deviation but for those with younger kids - under 5 Homestart are brilliant For any family with stress which a parent going into hospital obviously counts. provide support and volunteer and also groups with playlink workers.
You can be referred via your health visitor or self refer.
Marmite -imay consider this but am worried about having the same probs a your child. My edest (11) is already very aware that her home life can be quite different than that of her friends and i dont want to make it worse . Alsoas there are times when things are nearly ""normal"" i would feel guilty about using resources that some other children may be in much more need of if you get what i mean?
Jacquimac - I did try my loacl Breathe easy grp and am a member of the BLF but i have to admit i had problems going to the group. Im only 33 and found all the members to be mostly 30+yrs older than me and instead of getting support i found myself on the recieving end of their pity and i dont need pity. Also I was the only asthmatic the rest were all COPD. Thank you for your suggestion though others may benefit as each grouop is diffrent
I was forcably reminded of the trauma living with a parent who randomly splatts the other day my youngest was on his way home from school and saw an ambulence parked outside. It was not for me it was for the lady opposite but he dropped his school bag in the middle of road and ran tears streaming down his cheeks the 200 yards into the house. Thankfully the lady at the end of road saw it and picked up his bag and brought it down to us. Its not fair, that the sight of an ambulence near the house should make him so scared. Wake up call Mum don't push it to the limits, clearly some of the things he has seen in the past have made him terribly fearful of sight of green men near home, I don't ever want him to go through that again but to find it is me being loaded on
Bex
I notice this thread has been turned upside down. We are fortunate to have someone who is there when we need them whether it is children or parents. I had epilepsy before I had asthma and currently end up in a&e several times a year with one or both of them (the asthma seems to trigger the epilepsy sometimes). My children were brought up with the epilepsy and are always ready to help when needed.
We all need support sometimes but can feel that we restrict the activities of others. All we can do is try to live as normal a life as possible although not always easy. There is no way you can shield those close to you from these sorts of condition.
At sometime in the future your ""carers"" may find that their experience is actually useful. my daughter was at rugby training and one of the girls who has asthma had an asthma attack and had not got her inhaler with her. This led to a seizure and at least my daughter was able to reassure the others that, while they still needed to send for an ambulance, it was not as bad as it seemed.
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