Local support group member Joan’s husband recently passed away with Lewy body dementia. This is a list of items she encourages families to consider before a loved one’s passing. Some of the advice is specific to spouses. A bit of the advice is California-specific. None of the advice is specific to Lewy body dementia.
Joan says…
#1 As the disease progresses, think about why you are taking him/her to multiple doctor appointments. Will that appointment change the trajectory of the outcome? Who is benefiting from the appointment? Is the physical cost too high to continue to urge your loved one to go? Are tele appointments available? It will be up to you to make the decision if he/shge is not able; that is when the Power of Attorney of Health comes into play.
#2 Hospice – request that your loved one is assessed preferably sooner than later. Understand they are on board to keep your loved one comfortable but they will not make any effort to prolong life. You will have to sign off on this. If you change your mind at any time, you can do so and remove them from hospice care. Once hospice is engaged, all supplies will be purchased by them. There is a registered nurse and physician. If you still want your doctor to be a part of that team, just request it and they will keep them in the loop. You will be asked to take possession of most if not all hospice medications at the time of death. Hospice is another good resource for services you’ll need.
#3 Have cremation/burial lined up with the mortuary or cremation facility ahead of time. Know what phone number you are to call day or night. There is a time limit that a body can stay at a care facility after death. Most mortuaries will post an obit in the local newspaper and Legacy. Legacy – company that lists obits. The price starts at about $150. If you do it on your own and the obit is small, the cost is about $1,000 for one day in the local newspaper. You’d be paying that anyway to a mortuary if you want to post an obituary. Have the obituary written ahead of time. If you just need a transport of the body, and cremation, there are companies available with just that service that is more affordable.
#4 Be sure to consider Brain Support Network for brain donation through Robin Riddle if that is something you’d like to do. This too, would need to be set up ahead of time. Contact Robin directly to have this go smoothly.
#5 Strongly advise to have in place a separate bank account in your name only. Provide a beneficiary on that account should something happen to you. Some organizations will not send out any benefit if the deceased’s name is on the account, such as a joint account.
#6 Have these documents in place in advance:
- Power of Attorney of Finance
- Power of Attorney of Health
- Living Trust
Where ever you go, take a packet of these three documents so, upon request, you can produce the original for the organization to see. Then they will not hassle you.
#7 Have POLST paper handy at home — in the freezer and a copy with the documents above. If the loved one changes his/her mind, a new one must be filled out and signed by the doctor.
#8 Have life insurance policies in place and know where they are in your home, the company who has it, and who are the beneficiaries.
#9 Get all passwords and account information from your loved one. Once he/she is gone, it’s going to be very difficult to get in to any of the accounts. If willing, have them help you learn how to get in prior to death.
#10 If possible, change the following accounts into your name alone:
- Insurance
- Phone Carrier
- Internet
- Mortgage
- Utilities- water, electricity, garbage
- Is there any debt, the amount and where
- Credit and debit cards — be sure you are the primary on each
#11 Vehicles and DMV – change the pink slip to your name alone. Get the loved one’s signature while he/she is alive. If the vehicle is in his/her name, you’ll need an original death certificate, trust papers and a notary before the DMV will accept it to change the owner of the vehicle. Forms are available online at the DMV or at AAA if you are a member.
#12 If you have long term care insurance, activate at least 90 days prior to placing your loved one in a facility or residential care home. LTC doesn’t pick up the first 90 days of assistance/care. All facilities must be licensed, bonded and approved ahead of time. You’ll be out of pocket until they come forth with the reimbursement which is not quick.
#13 Upon death, you notify Social Security, military and CalPERS immediately. They will want their money back if they have already paid you. Social Security was pretty quick in establishing what portion you’ll get paid. I didn’t have to go in-person but was able to handle it on the phone. Whichever one of you had the higher income that is what you will receive not both. The military still hasn’t paid nor has CalPERS for spouse benefits. Hopefully, you have money set aside till they come through.
#14 You will need to order death certificates at $24 each. [Editor’s note: the price varies by county in California.] Your funeral home can help you with the request and it might go a little quicker rather than you doing it on your own. Order at least five and they will take a minimum of two weeks before you receive them. Add additional ones if family members want a copy. Many of the organizations will not take any action till they have the original death certificate in their possession and some will take photo copies. I am not sure if you can get the forms online or if you have to go down to the County Recorder’s office. Either way, you are going to need them moving forward.
#15 Many federal cemeteries are closed to new graves. There currently are openings in veteran cemeteries in Fresno and Seaside. Death certificate, DD214, flag, taps, plaque and several other forms have to be filled out prior to being accepted in those cemeteries.
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You got this – take time to breathe – you’ve already been through so much you can handle it. You are stronger than you think.
If you have questions, don’t hesitate to reach out to Robin Riddle and other local support group members. They have vast experience and resources to direct you in these areas.