Caring for a sister in another town.

[JO26]

Hello Everyone,

My sister has stage 3A endometrial cancer which has spread. This was diagnosed late because of GP ignorance and platitudes. But that is another story. 

I retired from teaching at 70 after 49 years, a career I loved but could no longer sustain due to expectations I could carry on as though I was still 21. My mind was still in a constant state of learning and implementing.

Within one month of retirement, it became clear that my 96-year-old mother, who lives in an assisted living community, 40 minutes away in Ballina, was going to need quite a lot of additional support, which she had refused to access. Now comes the mind-boggling interactions with Aged Care, DVA, Medical Professionals and Legals. Not to mention the barrage of phone calls about Google?! P.S. She goes to line dancing twice a week and gave up golf last year., but the mind isn't operating as well.

One month later, my sister is diagnosed with cancer. Her husband, who also had melanoma cancer but, is in remission, is NOT coping at all. She moves to 'Our House', in Lismore for treatment where I can offer her support. I then attend Phase 1 treatment: Appointments with her oncologist, other specialists, 27 rounds of radiation, and 2 rounds of chemo. This can take up to 6 hours a day. Also attending to her emotional needs with drives, movies, online shopping, etc.

She is now in Phase 2: Receiving catastrophic doses of chemo which I'm sure people will understand the impact this can have both physically, cognitively and emotionally. She has just completed session 2. I drive to Grafton to be with her for this process.  Her chemo started at 9:00 am and when she left  I took her straight to Emergency because she was having breathing and heart problems. I left at 7:30 pm after I called her husband to relieve me. 

I come home to my mother who requires constant updating on who is coming to her home and what appointments she has. I put up a big calendar for her. She forgot where it was. 

I also have a partner who suffers from COPD (3 emergency admissions this year) and is feeling a little left out.

I am slowly getting Mum's support organised but my sister and her husband are not communicating effectively. My sister needs MORE assistance and they both need counselling to understand what the other is feeling and needs to do. She has a massive amount of medications to take: chemo-related, diabetes and heart. She often can't remember what she has been given by her husband or taken herself and can't confirm because he's on his ride-on mower (coping). 

Two intelligent people who have accessed the financial support available, but can't acknowledge that they need more than finances. "We have it all under control." a direct quote from her husband when I raised this point.

I know I can't keep up this pace but I am not sure what to do now. How do I handle this without getting everyone offside?  JO26

[Surya]

Dear JO26,

First of all, you have my deepest sympathy for the tremendous difficulties you are suffering in taking care of your mother, sister, and partner. You obviously have a lot on your plate, and you should be aware of the toll this is taking on you. 

Here are some actions you may think about taking to help handle the circumstances:

1. Seek Support for Yourself: It is imperative that you put your personal health first. To find caregiver support groups, counseling services, or even relatives and friends who might offer emotional support, think about getting in touch. Taking care of yourself can help you assist others more effectively. 
2. Open Communication: Try to help your sister and her husband have open communication, even though it's difficult. Maybe you could speak with them one-on-one in a calm and encouraging manner, sharing your worries for their welfare and the necessity of good communication and mutual support.
3. Professional Counseling: Encourage your sister to get counseling for herself and her spouse. It can be extremely hard to deal with a major illness, but professional counseling can give them the skills they need to manage their emotions and support one another well.
4. Medication Management: Considering your sister's intricate drug schedule, think about putting in place a system to assist her in better managing her prescriptions. This may entail using pill organizers, setting up medicine reminders, or, in extreme cases, seeking the assistance of a licensed caregiver.
5. Delegate Responsibilities: Everything is beyond your reach. Assign duties when you can, whether it's setting up your mother's appointments, asking other family members for help, or paying an expert to handle particular responsibilities.
6. Set Boundaries: It's critical to understand your own limitations and establish appropriate boundaries. Be certain to let your family members know what you can and cannot do, and don't be hesitant to refuse requests when they come up.
7. Explore Additional Support Services: Investigate the support programs that your community offers to cancer patients and their caregivers. There can be groups that offer emotional support, practical help, or short-term care.
8. Take Breaks: Plan regular self-care periods, even if they are only for a quick stroll or some alone time. Taking care of yourself is not selfish; rather, it's necessary if you want to be able to keep helping other people.

Recall that you don't have to bear this weight alone and that it's acceptable to seek assistance. Make use of your support system and look into the resources your community has to offer. You're doing a fantastic job, but as you get through this difficult period, remember to put your own health first.

Take Care,

Surya