Boundaries: when to call on this life-saving strategy.
I was talking to a lady today who was absolutely exhausted from looking after her husband. He had recently been diagnosed with inoperable pancreatic cancer, and they both knew he did not have long to live.
Both were thrown headlong into a profoundly reactive stage. He wanted to live every second of every day to its utmost, going out early in the morning, going here and there, making up for all the days he would not have, and naturally wanting her to go with him. Back home, they were beseiged by family and friends who came to visit offering love and support. They stayed for hours. Every day had been like that since the diagnosis, for several weeks.
She was exhausted!

Boundaries and Guilt

So many of us find it difficult to establish boundaries, especially in circumstances like this, where the boundaries are needing to be placed upon people who are just trying to help and be there for them. However, it is not being ungrateful when you say something like: ‘We are only having visitors on Tuesday and Friday, sorry but ……….needs to rest and we have appointments to attend, but really appreciate your support…’
They will understand.

And despite the ‘carer’ wanting to do absolutely everything for the one who has a limited time, boundaries also need to be given here, and given without feelings of guilt.
Guilt is that useless emotion which achieves very little except to make you feel bad about yourself, when really you the carer are also dealing with grief, impending loss and managing the already busy life which existed before, in addition to the paradigm shift which has occurred in your reality.

Protective measures in dealing with illness

Emotionally, boundaries are healthy protective measures taken to ensure survival without falling apart. They ensure strength is available when it is needed, and allow for giving of yourself in a sustained and effective way. Boundaries are life-savers and there should be no hesitation in using them with confidence.

It is normal to be caught up in a turbulence of reactions, emotions and confusion when a curve ball is thrown. Nothing acts like a catalyst for this chain reaction more than an unexpected diagnosis of terminal illness. Strategies are required by both the carer and the affected individual just to travel this long and winding road. Self-preservation and boundaries go hand in hand.

Identify the boundaries

When you feel out of control, stop and look at where boundaries can be placed to make things easier. These can be listed in terms of practicality:

Time: identify time out episodes from each day and week when you can have a break; for example ask someone to take your place as carer on a regular and expected day. This provides a sense of knowing there is a break coming up, it can be anticipated as a sense of relief. When a visitor is staying and staying, learn to feel ok about concluding the visit. Some people don’t read the signs that you can hardly keep your eyes open.

Sharing of sad information: Limit yourself re-telling news or progress reports by sending out one email or letter to friends and family, so they are up to date, but you don’t have to say it over and over. During hospital admissions, ask key relatives to help with sharing information.

Reduce ‘hand-over’ information in the hospital setting by having a print-out of relevant information, including current medications and treatments, allergies and names and numbers of specialists involved ready to hand-over. Ask them to photo-copy it and then return it to you. This is a huge time-saver, and all you have to do then is give the reason for the current presentation. Have all medications in an easy to carry box. Keep them in this all the time, so late night visits to hospital are stream-lined.

Get help in. If you are in a position to, definitely get a cleaner and a gardener. Do this early and avoid tendencies to be a martyr, soldiering on as a sign of your love and care. You need stamina. Boundaries of work-load are a blessing. If you can’t afford it, ask for help from friends and family. This is exactly the sort of thing they want and need to do, to feel they are being useful and making a difference. Giving to others is how people grow and become kind-hearted. Don’t deprive others of this opportunity.

Accept offers of help. Allow others to give you meals, divide it up and freeze unused portions. Keep a small notebook and jot down names and gifts of help along the way, so that one day, when life has settled enough you can sit down and write thank you notes. Even this simple act of recording relieves any background self-talk of trying to remember and respond. It places a boundary on your social responsibilities, allowing them to be addressed when you can cope.

Realise that by creating these frameworks in your life, you are looking after yourself and your loved one in the most responsible way, ensuring that there is not additional stress during the final days that you have together.

Yellow Door  Care can help.

Yellow Door  Care offers a range of specialised services to assist with many of the difficulties encountered during the extenuating circumstances of ill-health. Chris and Meg are more than happy to discuss how they might be able to help and guide you along the way of coping with your individual situation.

Erica Fotineas