I have written about some of these issues before and I am in no way an expert except via a series of episodes that have cast me as the decision maker in my mom’s and aunt’s care. The repetition of events allows me to suggest the following in no particular order of importance:
1. Know all the meds that your loved one is currently taking. Know which ones were discontinued and keep track. You will be asked this often and do not assume the information is shared or even entered within an institution’s database. The hospital may have a long list of ‘active’ meds that were since discontinued….only you can advise them, so keep a list, especially of the current meds, dosages and when they are given.
2. If you are listed as the Health Care Representative, Guardian or listed as the Medical Power of Attorney (not same as Financial Power of Attorney) then ‘tag…you’re it!’ You will be consulted, advised, questioned. Know the medical history of your loved one. There can be very detailed questions, pre-0p, regard past medical issues. In three days at least two dozen people have questioned me for specifics face to face and by phone. The foster home care giver may have to supply information too…keep them in the loop for the first few days for sure. Have their address, phone and email addresses.
3. Have authorization paperwork with you and don’t lose the originals. Carry at least a copy of the DNR Document. Carry copies of the Advance Directive prepared by your loved one, yourself and an attorney (if one involved). Be prepared to allow copies to be made.
4. Have the contact info for all clinics or offices to include doctors and PA’s and NP’s, that tend to your loved one.
5. Because some one with dementia is talking to the long departed sister in the room, do know they will zone into your conversation with the doctor lazer sharp. Discussing dementia and/or memory issues or correcting your loved one can be problematic. They are scared and may need to assert themselves to feel part of the process even if they go back to talking to their departed sister during the conversation. Keep most pertinent details in private conversation if your loved one is hallucinating and paranoid.
6. Dentures, glasses, valuables will become important to the demented/hoarder as they feel more powerless. Get the teeth (and powder or goop) and the glasses (broken now). Let them know their valuables are secured and that their home is secure. Anxiety becomes elevated and if they are momentarily off the mental meds then be ready.
7. Lastly….as important as the above combined: if you are faced with decisions that are really serious re your loved one…have you thought about this? Do you know what the DNR/Advance Directives say and the consequences of those decisions your loved one made earlier and you are going to honor when they are unable? Life and Death. It will maybe dawn on you that the ink and paper may be black and white (or pink), but when that decision is also Black and White, you may be looking for the grey area…the escape route. Nope! Think through your role as Health Care Rep or Guardian and picture yourself listening to doctor, standing in a hallway, who is giving you the cold truth, the probable outcome and looking to you to acknowledge the previous decisions made. Do your homework and measure the unfolding medical events against your loved one’s prior wishes.
A rambling mish mash of advice for sure….I am tired and it is pouring out as I type. But, if you are in the process of collecting the above information then perhaps it will help.
Also, you should know this information for firemen and emt’s as they are standing in your house or the care facility (your foster home staff or nursing home staff better know it for sure….have you looked at their records for your loved one?) Can your loved one’s care facility present all the necessary meds info and doc’s to the emergency responders? You probably won’t be right there. Make sure the people you are paying sizeable monies to have their act together. My aunt’s does.