Raising Parents - An User Manual

It is my hope that this list could be helpful to someone who is caring for their aging parents. Or as I call it: Raising Parents, because it's like raising children all over again with more frustration and less control.

As you probably know, it's been a rough year in the raising parents arena here. We've gone from living independently to hospice and not living at all and not independently in less than a year. And we're still not done.

Here are somethings to consider if you are (or will be) in this Late Stage or End of Life Raising Parents situation:

Get a Power of Attorney before you think you need it. Even if you have zero intentions of using it. This can be a tender subject as parents want to be considered independent and "of right mind", even when they know that they're not.

Make sure there is a End of Life care plan or at the very least a discussion. These can include:

• Advance Directive and Living Will
• Power of Attorney (for medical, financial, legal decisions)
• Will
• Agreement that Hospice care is acceptable (verbal is fine)
• Agreement that Facility care is acceptable (as in does or does not want to go into a nursing home & verbal is fine)
• Burial Plan - cremation or burial? service or not service? Formal or casual service? (as in church or at the cemetery or somewhere else or not at all)

If you have any of the above documents, scan them and save them on your desktop - or even your phone.  You will need them. 

Medical Advocacy:

• Have access to medical records. If their doctors have online records then it can beset it up pretty easily. I think I had to use an ID number on a bill to set it up initially.
• At the very least, have someone listed as a person that the clinic can communicate with. At the very least.
• If someone can go to the appointments with them, that's very helpful for all involved. AND can be very awkward. lolsigh

Assisted Living: 

• It is ridiculously expensive.  
• See if the person has a Medicare Supplemental Plan that has a provision for assisted living.  Or if they can afford it, add it during the enrollment window.
• Move into assisted living earlier than needed to ease transition. If possible, find a facility that has steps of care, as in assisted up to full-on care so there isn't a need for relocation as needs progress.
• Only the expensive places allow pets but most do allow visits

In-home Care: 

The commercials make it look so easy but it's expensive and difficult to coordinate. The pandemic decimated the health care industry. We found it difficult to get consistent caregivers so we opted to do it ourselves. Like the power of attorney, work on this before you need it. 

AND like the Power of Attorney, they will most likely balk and resist but at least start the conversation and plant the concept before it's an emergency.

State Assistance: see above AND know that the process took about 90-days and that's with them fast-tracking it due to the hospice situation.  It's an incredible amount of paperwork and takes follow-up. 
The one thing I would change is that I would have registered both parents at the same time instead of just one.

Self Care:

• Search the internet or shamazon for "Adaptive clothing". We bought nightgowns for the m-i-l and it was a game changer. Now we also have special shoes for the f-i-l as well.
• Installing a bidet can reduce infections and improve self-care. I found this mind blowing and very proactive.

Safety Proofing the House: 

• Address trip hazards - rugs, cords, etc. Be prepared to hear "But my rugs..." and "I don't trip"
•  Install grab bars in the bathroom, next to the bed or their chair, if possible. 
• Locate everything within easy reach, as in no stooping or needing a stool or ladder. 
• Decrease your stuff, in general.

Supervision:

We were "lucky" that we all lived together and it was easy to pop-in to check on them.  Once you get to this stage, it has to be a priority.  

    Things to notice:

• Cleanliness of the house
• Any odor (think urine, not just dirt)
• Stacks of papers or envelopes - are they struggling with paying bills or managing paperwork?
• Casually check the fridge
• Ask about medications and make sure there is a system. 
• PillPack via amazon is amazing. It doesn't work well if there are a lot of med changes though
• Just an overall wellness and mental health vibe check.  Ask the hard questions.

Things You Won't Think about Until You Need Them:

• Access to med records
• Bank access so everything can be set for auto-pay and it can be monitored for fraud or weird purchases or accounts they didn't know they had or no longer need.
• File cabinet location(s)- where do they keep all of their paperwork. Think insurance info, life insurance/burial plans, legal paperwork.

Chore and Supervision Division:

If you have siblings, know that one of you are going to bear the brunt of the work. It's just how it works out and it doesn't make anyone right or wrong, even though it feels like that.

Someone has to be the point person for the doctors and emergency department and hospital and care facility. If you can, make it one person or it turns into a bad version of the children's game Telephone.

The phone calls are relentless, especially if Hospice is a thing. Just know that moving forward.  Choose a mellow/soothing ringtone because you're going to hear it a lot.  Also: think of hearing it in the middle of the night.

Decision Making and Communication:

• We asked the siblings TWICE when there was any sort of a decision to be made. That ensured there was no confusion about anything.
• Even if someone says "Oh, they wouldn't want that" or "They can't help" ASK, don't assume.  Let that person decide.
• Use social media, messaging, and texting to communicate.  It makes it so much easier than multiple phone calls. One message reaches many people and there's no mis-interpretation.

Documentation

• Keep a notebook for all the appointments, conversations, changes, information.  TRUST ME. 
• Keep a binder for all of the forms and legal documents
• If you have any of the above listed documents, scan them and save them on your desktop - or even your phone.  You will need them. 

Obituary:

Now, I know that not everyone is wired like me. HOWEVER, think about the obituary before you're in the sad space. Ask any questions you might have. I had to trick my m-i-l to get information. As in "I know what day you got married but I don't know WHERE."

Think about it as writing a story about their life.

Also, know that obituaries in newspapers are offensively expensive. The funeral home will post one for free and it stays forever. We used social media and it mostly worked.

List for AFTER someone has passed:
Hospice gave me a list and so did the funeral home. I spent a few hours each over two days making sure we did everything. All in all, it took about a week for everything to finalize.

• Contact the doctors. I just emailed the primary doctors via the clinic portal.
• Be prepared to wait for the funeral home and death certificates. Television makes it seem like it happens quickly.
• Phone - shut if off but remember to back up contacts and photos, etc. before you do.
• Electronics - back up any photos or documents.
• Social Media. Make facebook a legacy account instead of deleting it. It's nice to have.
• Email - I kept the email active but changed it to my father-in-law's name and I monitor it.
• Run a credit report to make sure all the accounts are known.
• Contact Voter Registration - the courthouse was Very Appreciative of the notice.
• Stop mail or stop junk mail/credit offers/etc.

Finally there are two things that I need to also share and they're equally important:

You have to have the hard conversations about money and care, and all of it.  It's no fun and people get sad or angry or frustrated or all of those and that's okay.  It has to happen.  Otherwise, everyone will be caught unprepared and it's the worst kind of surprise.  It also can help avoid resentment and anger later.

When people melt-down, emotionally, it is rarely about The Thing they say they're upset about.  Example: my father-in-law had a melt-down about not being able to "do paperwork" - i.e. bills, medical docs.  It was 100% not about that but that he was hours from losing his wife.  But the "doing paperwork" was what he could verbalize and/or that's what he fixated onto.  

It's rarely about The Thing, it's about the loss.  Loss of autonomy, control, their loved one, their things, their home; any or all of those.

I hope that our experience and my nerdery will help guide you if you are raising parents or will be in the future.  It can also serve as a self-guidebook to prepare yourself as you and/or your partner ages.

Raising parents is not for the weak.  Ask for help. I hope this helps.