Things that have helped; things I wish we’d done

by mymothersbrain

As 2010 gets underway, I thought it might be helpful to make a list of the practical, day to day things that have helped our family cope with our mother’s care. These are things that might come in handy for those of any of you dealing with elderly parents, whether they have dementia or not. I’m compiling this list as a reminder to myself as well, because when we caregivers are tired, we take shortcuts and make mistakes. These are things we can do collectively if we are part of a family caring for a loved one, as well.

DISCLAIMER: This is NOT LEGAL or MEDICAL advice as I am NOT a doctor or attorney. These are simply things that my family has discovered along the way, and that you can talk about with your loved one’s medical provider or with his/her attorney.

1) Someone told me their family keeps a medical notebook for their loved one in a location where anyone who is involved in her care can find it. We found this very useful. When my sister takes Mom to her general practitioner or to her neurologist, she jots the date, any significant things the doctor said, any changes to her medication, and she places in the notebook any new prescriptions that need to be filled. She also notes the next appointment date. When I’m in town and taking over for a week or two, I take over the notebook and make any entries from doctors’ appointments to which I escort Mom. In a flap in the book, we also keep the doctors’ cards with phone numbers and addresses. We also keep a list of all of Mom’s medications in the notebook, as well as their dosage. It’s easy to get confused when someone is on five or six medications.

2) My sister and I both have Mom’s doctors’ names and phone numbers on our mobile phones for easy access. This has saved me time and energy when I’ve had to make a call to her doctors and I’m not in town with Mom. It would be just as easy to keep them in a small directory you can carry in your purse or pocket.

3) My brother is less involved in Mom’s care, but my sister and I have made it a point for both of us to know her doctors. Because I’m out of town, I know them less well, but it was important for me to make a few of her appointments early on. There may come a time when one caregiver can’t make an appointment and you’ll have to step in; it’s easier if you know the practitioner and if you know what’s going on. All three of us siblings are signed off as being able to receive medical information about Mom. There may come a day when one caregiver becomes incapacitated for some reason and HIPAA laws prohibit anyone else from receiving information if they aren’t listed with the doctor.

4) Before my mother became unable to decide things for herself, we had her sign a power of attorney that would go into effect once a doctor deemed her unable to make sound financial and legal decisions for herself. She also signed a medical power of attorney that, again, would go into effect should a doctor deem her unable to make medical decisions for herself. This will only be put into effect once her doctor writes a letter stating that she has reached a point where these decisions need to be made for her. Sadly, we’ve reached that stage, but I’m glad we have the documents that will prevent us from having to go to court to get guardianship over her. That would be rather costly, in time and money.

5) Under the things I wish we’d done: Have Mom put in writing how she wants us to handle end-of-life issues. Does she want to have a Do Not Resuscitate order on file? Does her Catholic faith prohibit that? With her mental decline, it’s really too late for us to ask her what she would like, and have it be legally sound.

6) Also under the things we should have done and plan to do now: Have a list of all of Mom’s medical conditions in a handy place at all times. I’ve learned that when dealing with an agency such as Department of Aging and Disability Services (for those of you with Medicaid) I can count on making a phone call and rarely, if ever, getting a representative on the phone the first time. I can expect to receive a call back when I least expect it. I can also expect to fumble around for the answers about my mom’s medical history since I was working/gardening/cooking/writing when the call was returned. It will  help to keep the information close to you at all times so you can access it easily. Note to self: This is very important as this agency does not yet consider dementia a physical disability. It readily offers aid to people who have trouble bathing, toileting, cooking, moving, transferring if they are afflicted by a physical disability, but NOT by dementia. So I need to make a list of every single medical condition noted by Mom’s doctors.

I hope this helps some of you who are caring for elderly parents. If nothing else, perhaps it will get the creative juices going for ways that your family can make caregiving smoother.