Lessons learning from supporting a terminally ill parent

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07/12/2021 15:21

Subject: Lessons learning from supporting a terminally ill parent

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Anonymous

My mother died yesterday. (I'm the OP of this thread, which I started 6 weeks ago. https://www.dcurbanmom.com/jforum/posts/list/976020.page)

I am feeling shell shocked, and like I'm on what I suppose is a normal roller-coaster ride of emotions. I also feel like I've learned some critical lessons, which I'll probably not need again in quite the same way. So in case it helps others in this very common and stressful position of managing your parent's diminishing health, here are a few bits of advice I would offer (along w/ some of the wonderful advice offered in the thread I linked - which helped sustain me in the past weeks.)

- Try to figure out what your guiding principles will be in supporting your loved one. Is it giving them every opportunity to follow their own wishes? Is it ensuring that you maximize every possible moment with them? Is it ensuring that they fulfill lifelong dreams? Is it ensuring that other parts of your life aren't significantly impacted - or - are significantly included? Is it prioritizing consciousness over pain control or vice versa? Pick one or two top priority principles that can be your guideposts when you have to make a tough call. If you can be clear headed about that it will give you something to hang onto during crisis moments and after your loved one dies when you might be inclined to second guess decisions, or look back on things w/ 20/20 hindsight.
- Do as much as you possibly can BEFORE your parent is in a health crisis. Set up a trust for major assets, get the Health Care Proxy and Power of Attorney established, talk about their wishes re end of life etc... If possible, talk about what kind of service or memorial they would want, favorite hymns or prayers, etc... Set up a joint account so you can manage/have access to monies when necessary. Know some Do those things when they're not relevant so you have them when they are and you don't feel like you're hounding someone who dying.
- Be clear eyed about hospice - what it can and can't do. For most of them you cannot continue any treatment for the disease - even if it's categorized as palliative treatment for terminal cancer. (See my rant at the end of the linked thread if you want to know why I say this.)
- Seriously consider the incredible strain of facilitating an in home death - especially if the person lives alone, or if it would mean family members moving in to provide care. It is a major burden. It sounds like such a desirable thing - to die in the comfort of one's own home. It comes (potentially) at a VERY high price in terms of the strain on loved ones, disruption of the house, and level of wrap around care needed to support the patient.
- Be brutally pragmatic about the level of support and care needed. This relates to knowing what your guiding principles are. One of mine was "safety first". Part of that meant that the people providing primary support and care for the patient had to be able to take care of themselves well enough to do what was needed for the patient. For instance, I knew that I had to sleep elsewhere so I could function during the day. All medical and legal authority rested with me, but if I didn't get sufficient sleep I couldn't provide for my mother or manage the myriad crises. This meant hiring people for round the clock care, and then walking away and letting them do it. That can be very hard when you feel like you're leaving your loved one, but it can be essential if you're in for weeks or months of overseeing someone's medical/physical/emotional/social needs. "Safety first" can be very clarifying when you're faced with only bad/sad options. What is safest for the patient comes first - even if that means staying in the hospital instead of coming home, or hiring a second person to ensure someone is always awake and attending to the patient.
- Look for all kinds of assistance, and use your networks. Geriatric Care Managers (https://www.aginglifecare.org/) can be great. Home health aides are critical. Talk to people you know - they will have names of people who cared for family members whom they can recommend. Those caregivers will know others. The referral approach can provide great peace of mind. Also, getting folks involved early in an illness or decline can smooth the path for when you suddenly need significantly more support in place. Good home health aides are angels - so ask people who they used and go from there.
- The minute you have someone in crisis for whom you will be managing logistics find a notebook. Preferably one small enough to fit in a purse or laptop bag comfortably, with a good sturdy cover and many pages. On the inside cover or first few pages write down their health insurance info, date of birth, an encoded version of their SSN, passwords for cell phone/email, etc... Keep notes of every conversation w/ a health professional, every phone number given to you, every medication or treatment suggested, every name of a charge nurse on duty, when shift change happens, etc... You will need all of this info and you won't remember it as well as you think you will. When things are hectic you want everything in one place. You will also be taken more seriously by the professionals you'll be seeing if you have the details and are organized. Information is power - keep a notebook. Also, ALWAYS ask if someone has a direct number. Get people's names, be nice to them, make them want to help you. (This is especially true for staff in doctor's offices, nursing staff, etc...)
- Take pictures of your loved one's drivers license, MOLST form or Living Will docs - have them ready on your phone. Same thing for power of attorney and healthcare proxy docs. Keep a couple of paper copies handy and the electronic file at the ready to show/share w/ any clinicial practitioner as needed.
- Know what the critical documents are in any state that govern DNR orders. In NY for example it's a MOLST form (medical order for life sustaining treatment). Have them completed and current and have them, along w/ living wills with you. Wave them aggressively the minute you enter an ambulance, emergency room, etc... Hospitals may have versions on file that are out of date. EMTs may forget to look for the forms. All your plans can fall apart if a DNR order is not obvious/known/current...
- Trust your instincts. You know your parent better than the clinical folks, even the ones who want nothing more than to help. If you know what your most important things are, and you know your parent and how they view things, it will help you make difficult judgment calls in ways you hopefully won't regret later. At minimum you will know you made the judgment calls with the best information you had at the time, and based on honoring the priorities you and your parent value.
- Know that you won't be able to do everything. You won't prevent every fall or hospitalization. You can't cure them. You can't save them from some level of anguish during the dying process. You can and will do your best and you have to be kind to yourself.
- Find something(s) that helps you anchor yourself. I had several - some of which came from that linked thread. One was the brilliant: "You don't have to set yourself on fire to keep someone else warm." Brilliant and so important. Another one for me is "Accept what it, let go of what was, have faith in what will be." It is, after all, the normal order of things that parents die before their kids. You will get through it. You will know so many people who will be empathetic and understanding and experienced. Draw on them for support, encouragement, advice, and optimism that you will be ok.
- Order at least 10 copies of the death certificate. Everyone will want an official copy.
- Know that you'll be asked questions like the maiden name and birth site of your grandparents.
- If your loved one enters hospice that smooths the way for things like long term care claims, releasing medical records, notifying doctors' offices, etc... A few things get a bit easier when hospice gets involved.
- Try to avoid enrolling in hospice on a friday afternoon. Things will go sooooo much more smoothly if you have a weekday or two to meet the key folks, get the equipment and medications delivered, etc... No matter what they say about the 24 hour support (which is true) it's not the same as the dedicated team that will be on your case. If at all possible enroll any day other than Friday.

There's plenty more I wish I could share w/ my two or six month ago self, but this has already gone on long enough to be bordering on insane. Folks here really have been so kind and helpful to me so I hope my ramblings may be of some use to the next person who finds themselves in the incredibly upsetting waters of managing a parent's terminal illness.

Life is so hard sometimes, but there is also tremendous kindness, grace and humanity in our shared experience.

Wishing peace and comfort to anyone in the trenches.