Alzheimer's

Not that I was ever a prolific blogger, but I'm trying to get back into the swing of things. Got a quick detour to post about first.

My Grandmother has alzheimer's. For about a year now my Dad (with some help from the rest of us but mostly him) has been actively trying to get her help. Most of the authorities have been completely, utterly useless. The geriatric neurologist said she was fine. Her general doctor agreed with us that she shouldn't be driving but wouldn't contact DMV and said we should instead. DMV sent her a letter asking her to be retested for driving. She was and she passed (what the . . . ?). The one and only geriatric social worker in her town said there was nothing she could do (what is the point of her job?). She did make a home visit but Grandma's house is neat and clean so she said she couldn't do anything (she didn't open the fridge though). The police responded to every time she called them (none of them warranted) but failed to actually make records of every time. Basically, no one was any help at all.

So what is "fine"? This is a woman who recently forgot who her brother was. Who kept coming home with more and more scratches and dents on her car. Who angrily called the police in the middle of the night 14 times in one week alone. Who was more and more often turning her fridge to OFF to save money and then getting sick from the rotten food she was eating. Her upstairs tenant said he came home one day and Grandma was standing in the middle of the driveway with her keys in her hand, crying because she was locked out. On Easter she gave him a hug. That night she called the police yet again because she didn't know who he was and thought a stranger was in her house. One day she woke him up at 4 in the morning by banging a snow shovel on his door and then asking him to take her to buy a new car (this was after a police officer point blank told my Dad to take Grandma's keys).

We finally realized we had to get her to move. She was living entirely on her own and insisting she was fine but obviously she wasn't. We tried moving her into an assisted living facility nearby. We were clear and upfront with the staff about Grandma's issues but they still thought she'd be fine for assisted living. She wasn't.

Grandma is now in the locked ward of the alzheimer's facility and we're now seeing how bad she really is. Alzheimer's patients often stay up all night but did anyone tell us that? We knew the late night calls to family and police were really ramping up the past six months but no one, not her doctor, the social workers, the neurologist, no one told us what that meant. Now that she's in a facility with staff there 24 hours a day we're finding that she's literally up ALL NIGHT LONG. That explains her getting up later and later and napping in the middle of the day more and more.

We put off this decision so long because of the societal attitude toward "putting away" your loved ones. As a matter of fact a few weeks ago on a homeschooling board I sometimes post on someone spouted off her derisive opinion of the people who choose nursing homes for their family. It's attitudes like this that keep people in unsafe living conditions, trying to make things work when they obviously don't, just because being "put away" is so bad.

A week ago my Grandma was up all night alone in her house, insisting she was fine. We knew she was hallucinating music and when she'd get riled up enough she'd leave long abusive phone messages on my Dad's phone and call the cops to complain about things.

Now she's up all night in a facility with trained staff and other residents to talk to. Since it's an alzheimer's wing, she's not the only one who stays up all night. And when she starts hallucinating or walking the halls looking for her dead husband at 3 am, there is someone there to talk to her. To reassure her, to calm her down or just to simply chat. She's already made friends (Grandma is very social) and is planning a vacation with one of the residents. She also cleans a lot because that's what she does.

Well, I'm rambling as usual. My point though? There's help out there for anyone who needs it. Ignore the people who spout off about things they know nothing about. If you're dealing with someone with alzheimer's and you've come to realize you just can't do it on your own, there's help out there.

The internet is a godsend. After a year of flailing around, finding no help whatsoever from the people who should be helping, I finally started searching online. First I found the Alzheimer's Association Online Community. SUCH a help. When the assisted living Nurse was telling us that she'd never had a patient like Grandma and making us feel like she was some unique specimen, I went here and read story after story about how normal this all was (the assisted living Nurse deals with the regular residents, not the alzheimer's ones so she's aparently pretty clueless when it comes to this disease). I read so many posts on here with other people dealing with driving issues, care issues, anger, staying up all night and the decision to move the alzheimer's patient somewhere to get better care. Grandma is not unusual in the least. She's pretty normal for alzheimer's. Would have been nice if one of the many doctors we saw could have told us that, huh?

Then someone on another message board told me to check out the book Learning to Speak Alzheimer's. It's a GREAT book. We were doing it all wrong with Grandma. This book really helps you understand that you can't reason with someone who has lost the ability to reason. Alzheimer's isn't just memory loss, it also changes how your brain functions. It would have been nice if someone had told us this earlier but after trying to reason with Grandma for all that time I read this book and started using the ideas. She screams that no one cares about her, I don't reason, I just tell her I'm sorry she feels that way. She says that I haven't visited since Christmas, I don't try and remind her she's wrong, I just apologize for not visiting. The difference was huge. I definitely recommend this book for anyone dealing with this.

(And for the record, a week ago my Grandma was telling people my sister hasn't visited in 5 years, she hasn't seen my kids since Christmas and she's going to starve because she has no food and no one ever visits her. People who don't know any better and take these delusions seriously are why so many stories about abandoned elders get started. I don't deny that some elderly are abandoned and not visited but my sister visited a few weeks ago, Grandma saw my kids at the birthday party I threw for her at the end of February and not only did someone come to her house every single day but when she let the police officer in to check that she had food he found her cabinets and fridge stocked to the gills. She told him yes, but when THAT food is gone she'll starve).

Our final blessing was actually meeting the alzheimer's ward staff. These are people who know alzheimer's. They deal with alzheimer's patients every day. They UNDERSTAND. This decision that we put off so long (even a month ago I was telling my Mom I thought it was a mistake) turned out to be the best thing we could have done. Now she is not only safe, she's got more of a chance to actually be happy. My Grandmother has never been a particularly happy person and does have other mental issues, but still, I'm hopeful. But if you are dealing with alzheimer's, don't ask your regular doctor, don't go to an assisted living staff. Try and talk to people who actually deal with alzheimer's. Even asking someone with "geriatric" in their title isn't as good if they don't actually know about alzheimer's. Trust me, we learned that the hard way.

Unfortunately, the side effect of the past year is that my opinion of medical authorities is at an all time low. You'd think someone would have actually told us what alzheimer's meant and how we could deal with it but no, we had to find the information online. As usual. Pregnancy, childbirth, nursing, raising children, dealing with depression and now alzheimer's - all of these issues real live doctors have completely let me down and instead I've gotten help from regular old people online.

Ok, that was disjointed, sorry. I don't mean to sound defensive (because yes, there will always be guilt about forcing her from her home) but I wanted to put this out there in case there are others who are dealing with stuff like this. Maybe if more people talked about this there wouldn't be such a stigma about it and people could actually get the help they need.