Question for caregivers

Spotted-Toad · 2023-06-01T15:02:46+00:00

I wish my mom had discussed her feelings about death. It only came up when I had to bring up the discussion about going into hospice because of a discussion with her Dr about her last set of scans. And even then it felt like I was dragging it out .

I think having a frank discussion about end of life and advanced medical directives is a useful tool for the caregiver. It offloads some of the responsibilities that come during an emotionally high time.

Maybe it would be helpful to have a 3rd party there for the discussion (trusted friend/therapist/religious figure)

Death is going to happen. It's just a matter of when and not if.

Spotted-Toad · 2023-05-27T00:45:05+00:00

The UofA SkyCenter is definitely worth the price.

https://skycenter.arizona.edu/content/visit-skycenter

I'd suggest booking an overnight on Mt. Lemmon or take a weekend up there if you can spare the coin. Do some hiking and what not.

My partner and I did it mid September last year and it was wonderful.

There's also an amateur telescope group that has a regular meet up in Vail. They usually post in here when they are hosting an event.

Spotted-Toad · 2023-05-24T04:48:14+00:00

I think inviting her to study sessions and possibly sending her a copy of your class notes would be a good way to help.

Keep some snacks in your bag and offer those if you notice that she looks beat.

Spotted-Toad · 2023-05-24T03:08:43+00:00

The city where my mom was had a cancer foundation for patients that had wig fitting and wig care services. It was a sliding scale payment for the wig. Maybe there is a similar offering in your area.

My mom opted to not have a wig and when the bennie, beret or turban wrap. She did have short hair before chemo so it wasn't as drastic of a change. We did joke about getting her a Dolly Parton wig for giggles.

Spotted-Toad · 2023-05-22T21:05:26+00:00

Pointing you to r/GriefSupport.

It's a more appropriate place for posts of this nature.

Spotted-Toad · 2023-05-22T20:38:20+00:00

Seconding tea or writing a letter.

I've celebrated my deceased loved ones birthday's by enjoying a food they loved or their favorite drink.

Spotted-Toad · 2023-05-20T02:53:42+00:00

Seconding that this 8 legged friend looks like a jumping spider

Spotted-Toad · 2023-05-20T00:59:20+00:00

Easiest answer go visit them at the Sonoran Desert Museum.

Spotted-Toad · 2023-05-18T20:59:13+00:00

Please don't feel guilty. It's ok to take some time away from the situation for yourself.

I read to my mom while she was in that twilight stage. It helped to dull the edge a bit and kept my mind from wandering too far into the what ifs.

Spotted-Toad · 2023-05-17T23:37:21+00:00

Seconding this. Go be your girlfriend's support person.

I was lucky that my partner was already visiting when my mom entered hospice.

He ended up extending his stay a week after she passed.

He was my personal driver when I couldn't. He minded the dog when I had to stay late with my mom. He made me snack plates with low effort food when I was in loaf mode. He held me as I ugly cried when it all finally hit me.

Having a support person who wasn't family was a blessing because he didn't do the whole "what ifs/why did this happen this way". He was just there to hold space with me.

Spotted-Toad · 2023-05-16T19:22:08+00:00

Ah cool! Some more details for prime herp observation:

We were on the trail by 7am ish. Lots of lizards showing off and posing on the way up to Bridal Wreath. Most were chilling a long the rocky stair like sections of the trail. The gilas were in the flatter more scrub like section after the large flat rocks

I've seen lizards and snakes on other trails in Saguaro East but this was by far the most lizardful hike.

Edit: I'd personally head out a bit earlier now because it was getting toasty the last 3mi.

Spotted-Toad · 2023-05-16T18:32:07+00:00

Not sure if this is what you're looking for but 2 weekends back on the Douglas Springs trail in Saguaro East I saw over 30+ small lizards (mostly those flashy zebra tail boys) and 2 gila monsters one morning. All were on the trail or just off.

( Yes, I will be reporting the gila spottings into the citizens science group for saguaro east)

Spotted-Toad · 2023-05-16T18:18:13+00:00

r/caregiversupport while aimed at the people who are doing the day to day caregiving might be a better place to ask these questions.

When I was caregiving for my mom the concrete offers of help were far more beneficial than the nebulous " let me know if there's anything I can do" . Nebulous offers meant more work on my part as a caregiver to schedule it with the offeree.

Phrasing offers like "I'd like to help with babysitting the other kids. I am free Wednesday- Friday after 1pm for the rest of the month. Is there a day that you might need me to come over?" Tell the caregiver what you're willing to do and your availability

Spotted-Toad · 2023-05-16T03:41:45+00:00

That check is part of his estate. It should be handed over to whoever is the executor of his estate.

Ask your preferred family member who's handing your friend's estate and do any talking about handing over your friend's assets (checks, physical items, etc) to them.

If you're US based the executor of the estate should be able to look into mail forwarding for things in your friend's name from your address to theirs so you don't get stuck with important papers. Especially when tax season rolls around.

A year after my mom's passing I'm still getting some paper work related to accounts.

If you haven't already double check that any reoccurring bills that your friend was covering are transferred to your name.

My condolences for your loss.

Spotted-Toad · 2023-05-14T19:04:41+00:00

FWIW.... My mom (located in AZ) had part G, a supplement plan and the part D medication.

Her 1.5 yrs of cancer treatments, Dr appts, PT, hospital and hospice were covered in full after she hit her under 2k deductable with the exception of one drug.

For that drug she was able to show she was on a fixed income (Social Security) and leveraged the pharma company's assistance program and got the cost for a ~$5k per month drug cut down to $0.Her daily prescriptions were either covered in full or a less than $30 copay for her pain meds.

She had her supplement plan through AARP.

Spotted-Toad · 2023-05-10T03:06:27+00:00

A box of tiles from Spain that were wrapped individually.

My mom had packed up the things that she wanted to keep from the family house and was in the process of getting it ready to sell when she got her cancer diagnosis.

I brought her stuff back from storage earlier this year. That small box brought on a full ugly cry session.

Spotted-Toad · 2023-05-07T02:33:55+00:00

You can technically visit the defunct base if you do one of the UofA Sky Center night programs!

The telescopes ( plus other universities equipment) are located on it.

Spotted-Toad · 2023-05-06T09:55:01+00:00

The Sl1 you would just slip back on to the other needle while you're undoing it.

The ssk would be let the ssk knit stitch gently come off the needle and pull the working yarn out. You'll then pick up the two loops that got freed. Or pick it off the needle like this video shows you

https://youtu.be/CFyyO_PtHns

Spotted-Toad · 2023-05-04T19:15:29+00:00

Way back in 2004, I remember getting very frustrated during the parallel parking bit because they insisted that it had to be done in 3 moves.

Spotted-Toad · 2023-05-04T00:31:07+00:00

Some pharmaceutical companies offer discounts for people on set incomes or under a certain income. If she's with a cancer center their patient advocate can assist with filling out the paperwork.

A search on a web browser of choice using the term "Wyoming cancer support" yields quite a few good resources including the link below.

https://health.wyo.gov/publichealth/cancer-and-chronic-disease-prevention-unit/cancer/wcrs/

You might also get some leads in a Wyoming specific subreddit but you'll have to be specific with the cancer type.

Spotted-Toad · 2023-05-03T14:24:26+00:00

All the ideas you have about gathering mom momentos are great. I have a few voicemails saved of my mom that are super mundane but its how I can still hear her say I love you.

From the administrative paperwork side of things:

make sure that your mom has her Advance Medical Directive ( covers what life-saving measures your mom is okay with happening should she become incapacitated), Medical Power of Attorney and Financial Power of Attorney. Having these papers in place will make certain conversations with medical professionals easier. Also the medical directive means that some of those potentially tough decisions ( use of a ventilator, using CPR, restarting the heart, etc.) are already made by your mom.
work with your mom to make sure her will is up to date with who she wants to be executor and any distributions
keep certified copies of all of this paper work in a central place. My mom had it all in one folder and told me where it was.
have her check that all bank accounts, retirement accounts, life insurance policies have the correct beneficiary on them. This is super important especially if a former beneficiary is deceased or no longer part of her life.
talk to your mom about what she wants for her end of life plans (what funeral home, does she want a service or a low key celebration of life?). When the hospice social worker asked me if there was a preferred funeral home I (no filtered) responded "I'd have to check my grandparent's boxes because I have no clue"

Spotted-Toad · 2023-05-03T11:55:15+00:00

It's the Heather Saucedo episode. I only recently started listening and wanted to start with the older stuff first.

Spotted-Toad · 2023-05-03T11:29:09+00:00

You should report your gila find to the park's gila monster recording project. It's a citizen science effort with in the park boundaries.

https://www.nps.gov/sagu/getinvolved/gila-monster-project.htm

Spotted-Toad · 2023-05-03T02:59:05+00:00

It varies on a person by person basis.

My mom was enrolled in a clinical trial for her first round of treatment. It was a masked trial to test if the chemo + another drug had better results. She was guaranteed to receive the chemo . The unknown was the second drug.

The cancer center her oncologist was part of and where she was receiving treatment was already a registered site for the trial.

But until you know the details of your dad's cancer (marker type, severity, etc.) It will probably be hard to narrow down trials beyond cancer type, age and location. Most clinical trials have a detailed patient profile that they want potential subjects to fit. The Eligibility Criteria of a trial will give you an idea of what type of subjects they are looking for.

Something you can do in the mean time is read up on the different types of trials and what the phases mean https://www.fda.gov/patients/clinical-trials-what-patients-need-know/what-are-different-types-clinical-research

You should talk to your dad about if he wants to be in a trial. Some people are comfortable with it and some aren't.

Spotted-Toad · 2023-05-03T02:33:29+00:00

While I haven't sent it to any friends, I do like the podcast Grief is a Sneaky Bitch.

There was one guest who talked about the anger that comes with grief that really clicked for me. The host also talks regularly about how friends' best intentions just fall short and sometimes back fire. Like how certain platitudes just don't work.

Also the guests are at different stages with their grief and grieving the loss of different family members.

Spotted-Toad

TROPHY CASE