Advice needed for future reference

PlentyQuiet

Hello, 

I'm a bit of a planner, my philosophy is that bridges are easier to cross when one is prepared. I love a good checklist and spreadsheet. So, I'm asking for some input on my List Of Things To Have Ready For A Newbie.

1. Legal planning: DPOA, HCPOA, Wills, Letters of Instruction , HIPPA medical release of records forms.                                                                                                                         
2. Financial Planning:
1. Consult CELA for Medicaid planning specific to my state.
2. Get myself added to all of DH's accounts as a joint owner, designated payee, or get authorization to handle accounts 
3. Locate all accounts, pensions and retirement plans
4. Investigate local cost for in home care, daycare, and MC placement. Start formulating a plan.
5. Consider getting checking/savings/credit card in my, solo, name. Keep the current joint accounts only as needed for direct deposits etc., then transfer funds to separate account.                                                                                                    
3. Home Safety: Smart or childproof locks on doors, locked medication box, locked document box, alarms for doors, Alzheimer's resident sticker for EMS on the front door, Wearable ID for both of us (mine to designate myself as caregiver for vulnerable adult), grab bars in bathroom, under bed lighting.                                                                
4. Personal Comfort & Hygiene: Bidet seat, shower chair, handheld shower attachment, six sided mattress cover, furniture covers, emergency clean up kits in car and house                               
5. For the family: small voice recorder and document DH's memories, advice and stories to be passed on to our kids. Get names on old photos of his family.

I know this is not an exhaustive list, but it appears to be the things that most frequently pop up on older threads. The things that seem to be the most needed.

What have I missed? Is there something you wish you had known about or thought to get earlier than you did? Please chime in, even if it is a small thing. Planning lets me feel like I have a small say in this world where I have no control of what is happening to our family. 

M1

That is a very impressive list PQ.  The only thing that comes immediately to mind is a Bucket Activity List--are there things your LO can still do that you both want to get done?  Hard because of the pandemic, but maybe worth thinking about.

This will be a good thread to keep as others chime in.

harshedbuzz

PQ-

Great post.

Under heading #1, in additional to getting on the HIPAA forms at all of the doctor's offices, you should sign up for all electronic patient portals as a back channel which allows you to raise concerns about behaviors or issues without seeming to throw your spouse under the bus during an appointment. Plus, being able to check test results and request medication refills whenever is convenient to you make life so much easier.

Start the process to have access to handle accounts as soon as you have the legal paperwork so to do. Banks and investment firms will want to send a copy of your POA/guardianship papers to their legal department for vetting and that can take week or two.

A few people who I know who attempted to introduce a bidet once incontinence set in failed miserably. I think this is a tool that is best introduced early on rather than sprung on someone in the later stages. 

For your clean-up kit- it's rather like a diaper bag. It's great to include nitrile gloves and a change of clothes for both of you. Shoes for him, too.

I would encourage you to draft a Plan B as well.

Who would step in should you become ill or injured and can't be home caring for your spouse? You need someone who can drop everything and be there right away, as well as someone who provide care if a trip to the ER resulted in an admission for you.

It makes sense to investigate area MCFs in case that would be your plan B for a hospitalization or if you died or became too disabled to provide care. It's said that 1/3 of caregivers pass before their LO- so you'll want to prepare a dossier on caring for your DH. It also makes sense to vet a couple of SNFs and a MC or two so you have a sense of where you'd want either of you to go if the need arises. Some SNFs are really abysmal with PWD, so it's good to have a sense which to avoid.

HB

Ed1937

Have a bag in your car of things that you might need if you go anywhere. Things like a change of clothes, incontinence supplies and wipes, extra bags for garbage, etc. These things can be needed when least expected. 

A copy of your POA in the car. You could also keep this on your smartphone.

If you travel, a wearable note (or one in your purse) explaining that your LO has dementia, along with contact names and numbers, and any other pertinent information (medical, for example) should you be unable to care for him. Same for your LO. Great thread!

PlentyQuiet

M1 - We don't have a bucket list, but we put everything on the Joy Scale. If it brings joy, to either of us, it gets more importance. Lunch at a dive bar every Tuesday? Yes. Cognitive rehab? No (that was a truly awful experience).

HB- I would not have thought of shoes! The back door portal is helpful, especially since messages can be sent whenever I am free vs trying to make contact during office hours.   A Plan B and a binder with DH's preferences and routines is a great idea. I'm thinking short, intermediate and long term. A neighbor who could stay with him on short notice, family to step in for a brief while, and preferred option for placement if longer help is needed. 

Ed- I hadn't thought about garbage bags for the kit, but it makes sense that dirty clothes have to be put somewhere before we get home and have access to laundry. I also like the idea to keep a copy of the POA/HCPOA on my phone for emergencies. 

I appreciate the help from everyone

Vitruvius

As for the first point, be aware that some institutions and agencies do not accept DPOAs of any sort and require their own documents.  This is true of Social Security, and any other federal agency associated with the Treasury Department.  The process can be onerous if your LO can no longer participate in the application.

Stuck in the middle

Planning is good.  Prepare for the worst, hope for the best.

To home safety, I would include limiting access to power tools, including cars and guns.

toolbeltexpert

I am still a newbie when it comes to alot of the things mentioned. I never would of thought of a cleanup kit, but its gonna be on my radar now. Think I will print this thread after a while, after all the folks with experience chime in. Thanks plentyquiet for getting me thinking about some stuff. I have been searching for door alarm and door blocks cause I am having issues . I tend to be someone who finds out how to put out the fire after it starts.

Newbernian

Dear PlentyQuiet, Thank you for this well organized and planned list.  I have been working on some of these issues for awhile in regards to paper work.  I don't have all my answers, yet.  We moved out of state after retirement and neither of us has family to assist with any of the care.  A friend graciously stepped up to offer to be my Durable Power of Attorney.

We had an inclination that this road was ahead.  Both of our parents suffered from dementia but were taken by other complications before their disease had advanced past stage 3 or 4.  So, again the future is a black hole.

We lack assets that would help make some of this planning easier.  I, too, like having my "ducks in a row".  I also know that I have had to learn to roll with the flow.  Being aware of options is smart.  Plan for what is inevitable but I also know that what seems "inevitable" may never happen.  So I try to remain open minded to changes as they rise because this world constantly presents new opportunities and challenges.

I particularly liked the Joy scale and will make that our priority.  It is still important to hold on to dreams.  The dreams may change in scope but adapt them to what is doable today.

You are a true gift to this forum!  Thank you...

Caring4two

In your financial planning section, be sure to address opening a representative payee account for your LO’s social security. Then you will be able to communicate with social security as they do not accept POA or DPOA.

If your LO is a federal employee, same thing applies. OPM does not accept POA or DPOA so request to be representative payee and open said account with their name, your name and representative payee on the check.