A lesson on caregiving and dementia: It ain’t for wusses

While home last week for Dad’s golf tournament, I got to attend the monthly support group. The speaker was Gary Joseph LeBlanc, who talks and writes about caregiving and dementia.

Dad was worried that not a lot of people would attend, but dementia with Parkinson’s is common in 30-40 percent of patients, and it’s not something fun to talk about.

But the room was packed for Gary as he talked about caring for his own father for years as he battled Alzheimer’s.

Here are some tips Gary mentioned that I thought were worth passing along as you become someone’s caregiver.

Make sure that you update your power of attorney. Make sure it’s all taken care of, and get used to signing things with your name, power of attorney. Also of note, if you sign as someone’s power of attorney, it absolves you of any financial responsibility when the patient passes. If you’re a spouse, and just sign your name, you could take on that person’s debt.

If you share a bank account with the person you care for, make sure the account is for your name AND theirs. Not OR. The or in between the names, can allow banks to hold on to the money to settle things — especially if the caregiver is the name after the or.

Talk to an elder law attorney. And when you go, have a letter from your doctor explaining your right state of mind to get things on the record.

Here are some tips about dementia. Gary says he sees numbers that indicate 40% of people with PD could get PD dementia. And it’s not pretty.

Routine is really important for people with dementia. Make sure meals and activities are at the same time each day.

Hallucinations happen with PD dementia, and you don’t want your loved one living in fear. So talk to your doctor about it. Maybe there’s something that can be done.

Anxiety is also common, which is why routine is important. Anxiety could have a lot of causes, and can be treated by medication or life changes. So talk to your doctor about that, too.

Don’t be afraid to use hospice. Hospice does not mean it’s nearly the end. You can go on and off hospice, and it helps give the caregiver a break. If you’re on Medicare, Gary said you’re likely to be approved, so accept the help.

When that person passes, the caregiver’s life isn’t going back to normal. When Gary’s dad died, he said it took him awhile to leave the driveway. For such a long time, his life revolved only around caring for his dad. So force yourself out to be social, and talk to a professional.

The biggest thing Gary mentioned is always, always accept help when it’s offered. Friends and family will say let me know if there’s anything I could do. The answer should always be yes. Have them come stay at the house so you can run some errands, do some laundry, take a break.

Yes, caregiving is about taking care of your loved one. But you have to take care of yourself, too. And you don’t have to do it alone.

Read more from Gary in his columns and on his website Common Sense Caregiving.

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