Our family needs help

[tobias12]

Hello.
Its tobias12 here. Where do I begin. Our family is in need of some really practical advice. A week ago our dad was diagnosed with terminal cancer. He is very I'll and has been in and out of hospital for the last few weeks. Obviously this is devastating news for us all and we all want to do whatever we can to support him through this. However our Mum has suffered from agoraphobia since the age if 16 and is struggling to cope. She cannot even visit him in hospital unless we take her and stay. We find this incredibly hard as we all work and have small children to look after. As this progresses I see we have some tough times ahead as none of us understand and are starting to feel resentful of the lack of support mum is able to give dad. We are also worried about what the future may bring as he has always been her rock and we doubt she will cope when the worse happens. Any advice would be great fully received as we really don't know how to handle this.xxxxx

[Daisy Sue]

Hi Tobias... first and foremost I would recommend you contact the Macmillan organsation - they support the immediate family as much as the patient, and have many ways in which they can help & make things easier for everyone involved.

May I ask how old your parents are? Would your mum be able to use this forum? If so, she would find a lot of support & understanding here.

I would imagine that she will give him every bit of support and care she can while he's at home with her, but it is the nature of the beast that is aggoraphobia (or any severe anxiety-based illness) that just because life circumstances change, quite often the sufferer can't, no matter how much they may want to. Your mum would love to be able to leave the house and visit hospital whenever she pleases, I'm sure - but to some people this would seem like an impossible task. To me, she's doing well to get there at all, with your help.

I feel that because parents are so precious, and as they get older and/or become poorly, time with them is even more precious, that we should sacrifice our 'normality' and do whatever is needed. Maybe you could fix a short term arrangement for your children to be looked after by another parent you know, or a neighbour, at the times your mum needs you?

I wish you every strength to get through these difficult times, and I hope you can find a way to get things more sorted, to everyone's benefit.

[tobias12]

Hi Daisy Sue.
Thanks for replying.
Our Mum is 62 and Dad is 65. The frustration and misunderstanding comes for us with the self limitations she puts on herself. She can go some places with help but not others. To us this seems to be really random and with no reason as often these places can just be a few hundred yards from each other. Thanks for the advice. Unfortunately we are now at a point that we are cannot even mention the A word as she is very defensive and cannot see how it could possibly effect us. She has given up on any type of therapy as she says everyone she has seen has been rubbish. Surely over 45 years they all can't have been? We as a family wish to gain some understanding before it becomes too late and to be able to give Dad the attention he deserves without Mum taking that focus away. Will contact Macmillan. Xx

[Kim51]

Hi sorry to hear of your situation. I am in the process of trying to overcome agoraphobia you say about how your mum can go to some places and not others even though they are near, unfortunately this is how it is for some of us. I like many others on here have safety behaviours and safe places we can go. I don't know why this is, I can't explain it at all, it appears to be something our very cruel brains do to us. I would imagine your mum is racked with guilt as I am at times because I can not be there for family etc when they need me, I know this upsets them at times. I think it would be a massive help and support to your mum if she could talk to the wonderful members on here, it has helped me enormously over the last few months.
My good wishes are with you in this difficult time.
Kim xx

[lizzie29]

I can totally understand your frustrations but as Kim says, us with anxiety have certain safe places and often there's no logic to an outsider as to why one place is fine but another isn't. I too think your mum will be feeling really guilty, I know I would. Unfortunately overcoming anxiety is a slow, difficult process, and it requires a lot of strength. For her to try to beat her anxiety at the moment would probably be too much when she's coping with her husband being seriously ill. Does she have a friend that could go with her maybe once a week just to take some pressure off everyone? Or, if you got in touch with Macmillan and explained the situation, maybe they'd have a volunteer who could go with your mum - just an idea. I can see how it must add to the stress you're all under, but just remember, your mum can't help it. Anxiety is an illness just like a physical illness and cannot instantly be overcome, no matter what the situation. Your mum will no doubt find the loss of her husband incredibly difficult, but in some ways it may give her the push she needs to try to start tackling her anxiety (once she's starting dealing with her grief, naturally).

Please try not to resent your mum, I'm sure deep down she is punishing herself enough for being unable to visit your dad alone. Could you and your family set up a rota so you know when you have days when you're not responsible for your mum? It may ease the pressure slightly if you know there are days when you don't have to deal with that and sorting childcare etc.

[AuntieMoosie]

Hello, firstly I'm so very sorry about your Dads illness and what lies ahead of you all.

Now is the time to rein in all the support and help that you can get as a family, there is plenty out there it's just a case of tracking it down.

Hun, I can understand that you find it stressful and difficult having to help your Mum especially when you all have families and commitments of your own.

I would imagine though that your Mum is beside herself with every emotion at this present moment. She can't help the way she is hun, it's an illness like any other it's just that it takes this form, she probably feels like a burden herself but is just unable to help herself at the moment.

All of this is nobody's fault hun. Mental illness effects everyone, the whole family and friends. They will suffer just as much as the member with the illness will and I do really understand the stress and worry that you all feel.


As Daisy Sue has already advised, do get in touch with Macmillan, they are really brilliant with just about everything when a family is looking after a member with a terminal illness, they can advise you on the care and support of your Dad, any benefits and financial help that you may be entitled too and support for the whole family as you face this.


You could also contact your local social services, the mental health team would be of most use to you I would imagine. Explain to them your Mums illness and situation and that your Dad has a terminal illness and that this is all going to put the family under enormous strain as you're all going to be looking after both parents which is going to be very difficult for you as you have families of your own too. They may well be able to get a volunteer in to help your Mum and take her out when she needs.


Also don't forget about your Mums GP. They will know what help is available in your area and can get you referred so that you can get the help that you need.

I hope this helps a little. Do keep coming in and letting us know how you're doing, there are always lovely, kind, helpful, understanding and supportive people here