[jeanb]

My father recently passed away from Alzheimer's disease. But there may be readers of this Board who may be helped by my writing some of my lessons learned about for caring for a parent with dementia.

--Create a document listing your parent's health information. Every time I took my dad to the hospital or the doctor, even if they had a binder full of his medical information, they wanted to know his history - medications, surgeries, allergies, etc etc complete with dates! I struggled with this, and Dad was no help. BUT I have recently asked my mother (still alive with her faculties) to start writing all this stuff down. I'll type it up and we'll have stacks so we can grab one for any trips to the emergency room.

--For a loved one with dementia, if they are in hospital, someone will have to stay with them. My dad couldn't answer anything. And he couldn't remember from one minute to the next that he had a catheter, or that he was in pain when he moved, or even where he was. I stepped out a couple of times to take a phone call - and the nurse(s) came in and asked Dad if he needed any pain meds. He only hurt when he moved, so he said no. I returned and found him in agony as he tried to turn over in bed. I pleaded with the nurses NOT to believe him (and not to ask him) - because he just couldn't remember that he was in pain.

--As a daughter caring for an elderly father, I was embarrassed when he needed help toileting or with other personal care. My advice? Get over it. A parent with dementia may be embarrassed at the time, but they will forget all about it 5 minutes later. (I, however, can not forget... )

--When a parent with dementia is in a nursing home or assisted care, leave a "letter" to them, telling them where they are, and why they are there. After I "wrote to my father" about where he was, and why he was in an assisted care facility (& gave examples of things he did at home that made it dangerous for him to live at home) I quit getting phone calls from him "telling me he was ready 'to go home' now. (The staff really appreciated this - they'd hunt down the "letter" and hand it to Dad.)

--Do your best to learn the names of the staff at the nursing home. They have tough jobs. Periodically I'd bring in a cake, or cookies, or maybe bring in some See's candy for them all to share. I really appreciated their care for my father. And I wanted them to know it.

--frame photos or make photo montages of friends and family for their new "home" at assisted care. When Dad would say he didn't know where he was, I'd point to the photos of family and tell him this was his new home. See all of your photos?

--Realize that your parent may not be happy to be moved from their home. My dad resented the fact that my mother got to stay at home but he didn't. I was honest and told him the reasons he could not safely live at home. He still didn't like it.

--if the facility calls you about your parent, do your best to go there as quickly as you can to find out about or to resolve the problem. Even if they say " you don't have to come down," they really appreciate it when you stop by. I was lucky to live near by and be able to go when called.

--when you go on a trip, write a series of "letters" and leave them with the staff. I'd have an envelope with a note to Dad, or a photo, and a description of where I was and what I was doing for each day I was away (and the envelopes would be dated when he should receive it. That way he would know why I wasn't visiting him.

--Remember that you are your parent's protector. S/he can no longer speak for themselves.

--Take care of yourself and your health. Living with PD and caring for a parent with dementia is exhausting. (and even though Dad didn't live with me - but in assisted care, my having responsibility for him took its toll on my health).

Good luck to you.

[olsen]

Thank you for sharing your "lessons learned" caring for a parent with dementia. In addition to the feeling you truly cared for your father, I wish you Peace.