Dementia, Damned Dementia

Dementia has stolen my Grandma!  Despite attempts by some to hide this fact, or to live in denial...she's got dementia.  Perhaps it is Alzheimer's, perhaps something else, it is impossible to know since Alzheimer's cannot be tested until the victim is deceased, from an autopsy. 

So, my awesome Aunt Winnie has selflessly given her time and days and weeks and months to the care of her mother, my grandmother.  Grandma has 11 surviving children, 9 of whom speak to her.  And over 2 dozen grandchildren (approx 34, in real numbers), plus others, all of whom can help take care of her.  She has said she does not want to go to a nursing home, because "I have a big enough family, I shouldn't have to do that."  I would have to agree, that she is correct.  Now, not all the kids or grandkids live in the area, which is a normal occurrence.  Folks grow up and move away.  I was gone for many years, and it turns out we are here for now. 

For me, spending the day with Grandma is a nice blessing, and I appreciate the opportunity!  The reason I am sharing this about the Damned Dementia, is for this very reason.  We spend our lives wondering "what if" and all the other unknown wonderings about how our lives will be down the road.  Here is an opportunity for some, and I sure appreciate the opportunity to get to help Grandma in ways we never could for my own Mom, rest her soul.  Winnie has made Grandma's days go as smoothly as possible.  She fields the things that she knows irritates her, sets up her clothes and any other daily things she needs in places that are logical and easy to find, in her bedroom, the bathroom, the kitchen, the living room, and so on.  Her shoes are always in the same place, for example.  Consistency is key for folks with Dementia, or for anyone going through changes. 

When I fill in, depending on if Grandma is up when I arrive or not, we get her settled and comfortable.  Shoes tied, breakfast served, coffee brewed, meds served, and other routines.  She is cooperative and full of conversation each and every time.  If she asks questions, I have to decide how to answer them, which depends on her mood.  If she is in a good mood, that is bonus.  If she is agitated, then things can go differently.  We try to keep things fun and interesting.  Last weekend, she started the day asking if I saw "Nelson when he left this morning"; Nelson is her late husband, my Gramps.  I answer honestly, and leave it at that.  She has agreed to finally use her walker, which makes us happy.  This is proof that you can make changes in a routine of a dementia patient, and make things work.  She is typically very stubborn and not open to changes she doesn't figure out on her own. 

About a year ago, she finally quit insisting that I leave the dishes in the sink for her to do when I leave.  I have never left her dishes to do, so when necessary, I'd wait till she went to the bathroom, then I'd do them quickly.  Usually, the dishes are from the day, for I would usually cook when I went by.  I think her favorite thing for me to cook is to make and bake homemade bread, specifically "Virginia's Rolls" as someone put in her personalized cookbook.  Through the day, we do a lot of talking and laughing, when she is alert and engaged.  Lately, this is how it's been, mostly alert.  Sometimes she is tired and will nap at the kitchen table intermittently. 

She remembers more than one would imagine, which is likely why some individuals were slow to accepting that she really does have dementia.  Saying she has dementia does not make it so, just like denying it doesn't take it away.  It is what is it.  She just doesn't remember.  The last two times I was there, she was getting really frustrated at not being able to remember names so much anymore.  So I asked her if she knew what dementia was.  She said no, so I gently explained it to her, and told her we were all here to help her out.  She looked at me, said ok, and calmed down.  Goes to show...truth is a GOOD thing.  Of course, the next time, it was a repeat conversation, but again, she calmed down afterwards.

The last time, she knew my name during the day, without being prompted or asking me.  The time before, she asked several times, and still did not make the connection while I was there, or when I left.  I used to feel like crying when this happened, but have accepted the truth for what it is.  And, I have accepted and come to appreciate that I can be an active helper in her schedule, one she doesn't mind, and one that she trusts.  Because, trust me, if she remembers someone's "Story" and she doesn't like you in that story, there is no way you will get in!  Not as a caregiver!  I refrain from adding to her conversations when she is venting about someone, especially since the person is often from way back in her memory, and try to find some way to shift it to being positive.  Usually she will agree and then we move on. 

Often, she blurts out with random thoughts.  Some are funny, some are sad, and some are just not the truth, but they are the truth in her memory.  For instance, two weeks ago, she kept talking about her mother, most of the time as though she was still around.  She also insisted she had just moved to her current house, when in fact, she has lived there over 65 years.  She will be okay, if all who do her caregiving can work together.  That is always the rub, folks having to work together when they don't normally have to do so. 

I could say much about that, and really, I don't care if others are offended or are otherwise upset.  Why?  It comes down to TWO things.  (1) Take care of Grandma, and (2) Take care of her caregiver.  She is taken care of, as best as those who are there can manage.  When I say that, I don't mean that they don't do a good job.  What I mean is that Grandma can be difficult at times.  Sometimes many times.  She whispers on the phone to tell secrets, secrets, as she has done for many years.  Usually that means she is talking about the person(s) who are in the house at the moment.  And it usually means she it talking to the woman who calls her every day.  We don't think that person knows that things have even shifted for her, as sometimes she doesn't even remember her name.  Or even feel like talking on the phone, but then she does, and she puts on her smiley face.  Then, back to the same when off the phone.  Reality Check!  Why would anyone be mean to the person(s) who takes care of you?  Dementia patients sure do, because they don't know what they are doing all the time. 

The #2 part:  Take Care of the Caregiver!!!!  Now, this is a NO BRAINER!!!!  I don't know when folks thought it was okay to put responsibility on one person to live 24/7 taking care of another person, to the degree that they cannot have even half a day to take care of their own needs, to go for a ride, to go to the store, to go on a date, to go visit a friend, to TAKE A BREAK!  Sheesh!  A No Brainer!  Take. Care. Of. The. Caregiver!!!!!!!

No one knows when it's our last day on this earth.  Any of us could check out at any time.  But, when you know someone is ill, needs assistance, and cannot fend for themselves....well, then.  It is time to do the right thing.  She spent her entire lifetime taking care of everyone else.  She does NOT want to go to a nursing home, she has said so on many occasions, including to me several times.  Putting her in a nursing home for any reason that can be avoided is tantamount to speeding up her exit of this world.  Yes, it would kill her.  And, No, she was not perfect, but she did what she knew, and did what she tried as her best.  The least that some of her 159 can do is to take care of her now when she needs it.  Without the EGO, without the DRAMA, and TAKING CARE OF THE CAREGIVER(S).  Come on, folks.  This makes you angry?  Fine, play juvenile and don't ever speak to me again, but get the acts together in the meantime. 

And, one last note, this one just to vent...why on earth would folks do things the difficult way, rather than working together as a team?  Let's just say that all of those involved Quit with the childhood dramas, Quit with the control issues, Quit with the lies and secrets, and so on and so on....imagine the Fantastic teamwork!  Oh, the secrets, secrets, secrets.... those damned ridiculous secrets!  Ain't Nobody Got Time for That!