I am a long term carer and wonder how others deal with the isolation. The person I care for is bed bound and we rarely leave the house. Do you have any strategies for dealing with isolation? I have the added disadvantage in that the person I care for has a brain tumour and so there often is problems in speech and understanding and more often than not it is difficult to have normal conversations.
Dear Soozii, I can only imagine that it must be very difficult for you, but at least you have found one great outlet - the internet! talking to other people over the internet, like on this forum, is a great way to get some interaction when you can't get out. It is also easy to do it on your own terms (eg when you can and want - even if it's 3am!). I know the Cancer Council also runs telephone support groups where you can "meet" regularly with other people in the same situation as you, via a conference call. Ring the Cancer Council helpline and I am sure they will give you more information. Is there any regular time your husband has a nap? This might be a time where you feel comfortable having someone else do the caring for an hour or so so you can get out and meet people, have a walk, go to the hairdresser etc. Meanwhile, use the internet for as much mundane stuff as possible. Do your grocery shopping, banking, etc over the internet so that you are not wasting your precious free time in a supermarket queue! I guess the most important thing is to remember that you are not alone. Hopefully there are others who love your husband and want the best for him. Try to trust them that they will do the right thing and look after him well while you get a well deserved break. You might like to think about writing up a "how to" manual for your house so that other people can refer to it when they are looking after your husband for you. It can have instructions for medications, what foods to prepare, how the oven works, where to find clean sheets and towels, etc etc. Anything that you find yourself doing throughout the day without thinking about it that you would like someone else to be able to do if you were out. This way you will feel more confident at leaving him. Start with going out for small amounts of time, 30 minutes, 1 hour, etc. Take a mobile phone with you. At first you may want to ring constantly to check on things. Slowly you will learn to relax. You are not helping him by not helping yourself. Give yourself the break you deserve!
Hi Sarah Actually I have most of the strategies you suggested in place, I am a member of the telephone support group, I use the internet to do my grocery shopping, banking, etc and I have Home Care come in a couple of times a week to wash Philip. Home Care are going to give me respite time but unfortunately at the moment they are short staffed and so I have no idea when it will finally start but at least I know its coming. My family work through the day so it is just Philip and I . I also have a work room where I spend most of my days either on the computer, reading or sewing (I make machine embroidered and patchwork quilts).
Good on you, Soozii! It's great to hear that you are finding ways to make life easier for you and Philip as well as taking the time to look after yourself. Its great that you do your sewing too. I personally like knitting. I find it relaxing (as long as the pattern isn't too hard). I really only like to knit baby clothes as I don't have a very long attention span and would get bored knitting the same thing for too long! Unfortunately my kids are rapidly growing out of that stage so it's hard to find new babies to knit for! Luckily I have a friend about to have her fourth so I have a new customer! Do you belong to a sewing circle? I sometimes enjoy getting together with my knitting friends, a cup of tea and a tim tam and having a good chat. It might be nice to talk to other people about other, more "normal" things, besides the telephone support group people. Just a thought. Keep up the good work and don't forget to treat yourself with a bubble bath every now and again - you deserve it!
I am a carer too and I find that the hardest thing for me is the feeling of helplessness. Both my parents are ill and I dont have any other family support from siblings who decided to opt out. My Dad is very pragmatic about his cancer, and we are able to speak openly together about the fact that he will die one day (Dad said I needed think he is unique, as it is the nature of being human, we cant live forever). The thing he said to me is so wise and typical of my Dad, it has helped me and I want to share it. "No point worrying about the past, you cant change it. The future is unknown so don't waste energy on 'what ifs'. Together let us celebrate today as it is called 'the present' cause we are here together and that is a GIFT!" I now celebrate each day, the present is much easier to deal with and requires less emotional energy. The little saying each day beside my bed says, "God never gives us each day more than we can cope with..." I am testing it out!!
Hi Annie I am a survivor not a carer. Prior to cancer I used to work for Home Care Service of NSW. I have witnessed first hand what carers go through. This service provides a multitude of services. One being respite. NSW used to means tested? I have been out of the loop for a few years. You pay what you can afford as they receive Government funding. If you are not in NSW other States have similar services. Even if you try a couple of hours once a month, you dont have to go far. I have witnessed the benefit it has for both. You could also try Commonwealth Care Link centre 1800 052 222. Cheers Mazza
I think the internet can provide a lot of options for social outlet. There's forums like these that let you talk to other people and share common interests - whether that's cancer or sewing. It's doesn't really replace meeting up with people face to face though.I can understand in your situation, Sooziii, it must be really difficuilt to take that time out for socialising. So I think it's really important to cherish the free time you are able to spend with friends and family, rather than lamenting the times you are alone.I think filling your life with as many little projects as possible would be a good way do deal with isolation as well. Plan out a few months worth of sewing, find half a dozen books you are yet to read. Joining a sewing circle or a book club could be a great idea too if that's up your alley.
Cancer Council NSW would like to acknowledge the traditional custodians of the land on which we live and work.We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people.