I wanted to write-up a quick thank you to to everyone who took a moment to send me an e-mail or comment on my Facebook link or directly on the blog after my last post. I know it's been several weeks but I want you all to know how very much I appreciate all of your thoughts, well wishes, and offers of help. Although there really isn't much anyone can actually do, it's been helpful to me and I feel so much better getting it all out there and letting people know what's (been) going on. So listening is the best thing and I appreciate you all doing that for me. :o)
I do want to address just a couple things brought to my attention after my post. The first is that I would be remiss if I didn't mention what a big help my aunt Ruby has been. As I mentioned and as some of you know, it can be quite difficult dealing with my mom during her more unwell spells and even as her daughter I sometimes find myself unable to get myself to visit or call as often as I should. My aunt has been a big help in many ways since my mom's health began declining and I want her to know how much I and my sisters appreciate it. Her visits often give my dad a much needed break, (even allowing him to be able to actually leave the house!), and give my mom a change of pace, too. I know it's hard for her just like it is for the rest of us but I so very much appreciate her willingness to still come down spend time with my mom.
The second item is a question, one that surprised me and came from quite a few people -- how am I dealing with essentially not having a mom now that I have a baby? And honestly, that's something that hadn't even crossed my radar until I was asked because by the time I found out I was pregnant, my mom was already sick and I knew she wasn't going to be able to help me with the kinds of things she would have been able to in her healthier days. I actually talked about it with my therapist a long while ago when my sister, Michelle, first broached the topic with me and we came to the conclusion that, because I had no expectations of having a "traditional" mother around to ask questions of or to come over and help out when I had a baby, I felt no sadness or disappointment when none of that happened once I had Mallory. And that totally makes sense to me. I will say that I felt sad when I first discovered I was pregnant; Robert and I went to Disneyland the week after we found out and I remember seeing lots of grandparents with their grandkids and feeling sad that my children will never have that experience with my parents. But that's really the only time I can recall feeling down about my mom's illness with regard to my pregnancy. I would, of course, love for my mom to be able to have a more active presence in Mallory's life but I have my sisters and they have been a ginormous help with all things baby! And I've had several moms in my extended friends and family network who have offered to help out or answer questions and that's very kind, too. :o) I think because I sort of made peace with "losing" my mom and all that she was and could do well before I got pregnant it hasn't been a big issue. And in a weird way I am thankful for that.
Thanks to the ever-helpful and informative Interwebs, I discovered earlier today that it is World Alzheimer's Day. As such, I've been motivated to dust off a post I started several months ago and try to finish it up. Here's what I had: __________
Okay. This is the post I have started and rewritten hundreds of times
over the past year, usually when I can't fall asleep because my mind is
whirring at a rapid pace, that is the big explanation and mea culpa as
to why I've sort of dropped off the social grid. At this point, it's
been so long and so much has happened, I don't know where to even start
or how in-depth and detailed to be. It's very tempting to make this a
thorough purging and chronicling of
all the things that have happened but it's all a mish-mosh in my mind.
Certain events stand out but I can't always place them in the timeline.
And little things that feel important to me are probably not critical to
the overall story. So forgive me if this post is really a bit too "Dear
Diary" - I'm trying to streamline as I go! At the very least I'll try
to paint an entire picture as
clearly as possible. It's a long post... apologies in advance.
So,
what is this mysterious post about, you ask? Well, nothing fun and
nothing nice, of course - it deals with Alzheimer's disease. My mom is
currently suffering from AD and it is and has been an excruciatingly
painful experience for my family. It's truly like a death and it's
beyond difficult to put into words just how cruel a disease AD is and
how it affects each member of the family, both mentally and physically. I
follow the Alzheimer's Association on Facebook and earlier this week
watched a video that I found really helpful to explain the symptoms of
the disease and I think that's what's kind of kicked me in the pants a
little bit.
Now, I don't know if I'd call these "warning signs" of the
disease - my mom hits every single one and she's pretty far into it. But
I'm assuming if your loved one displays only one or two of these signs,
it means s/he should be checked out. My mom's diagnosis has been a
long, unorthodox one, impeded by outlying factors but we've been
operating under the assumption of Alzheimer's for over a year now
(though in doing a little digging for this post, I see that things
started declining a bit more rapidly at least around January 2013).
She's actually on a medication sometimes used for Alzheimer's patients
(Seroquel) that has helped a LOT, but lately she's been sliding backward
and I think a change of something is in order. That's also probably
helped push me into finally writing this post... She's been on my mind a
lot lately.
__________
This really could be a LONG, long post -- I have about a million things frantically swirling around in my brain, wanting to get out but I just don't know that I have the patience to form them all into a chronological, coherent post! Plus, it's actually fairly exhausting rehashing all of the depressing details, even if just to myself. So I'll start in February of last year and then try cover the bigger chunks of importance.
In February 2014, my mom had a major setback in her health; unbeknownst to us, her kidneys were not working properly and her pain medication began to build up in her system. She wound up having what amounted to a morphine (what she takes for pain) overdose and wound up in the hospital. While trying to get her health and medication under control, it became clear that her dementia was perhaps the worst it had ever been. My mom was in the hospital for a couple weeks and while none of the following things were constant, they all manifested at some point and some much more often than others. She didn't recognize my sister, Michelle. She thought I was in eighth grade. She didn't know where she was. She couldn't form certain words. She couldn't carry on a coherent conversation. She was hostile and belligerent with hospital staff, causing either my dad or my sister to have to go down in the middle of the night and sort things out. I am forever and immensely grateful to Michelle for coming into town because I was a mess, I didn't know what to do, and I didn't have any idea how to handle my mom in such a sickly state. My sister knew how to take care of my mom; she washed her hair for her and styled it, she painted her nails and even brought my mom coloring books and Crayons, which my mom loved. I would never, ever have thought to get such things for my mom. She's my mom! She may be sick but she's not a little kid. But, sadly, at that point in time she was.
When it was time for my mom to be discharged from the hospital, it was shockingly apparent that she would have to go to an assisted living/rehab facility. We talked to the hospital doctors and reached out to various homes and finally found a place where we thought she could stay. It was themost heart-breaking experience of my life. I had known this stage of her illness would arrive someday but I wasn't at all expecting it to happen so soon and so fast. Robert was my rock and my sister, my dad and I all leaned on each other to get through the darkness. There really isn't any adequate way for me to describe how difficult and how painful it is to get yourself mentally reconciled to the fact that the mother you knew, that you loved, that took care of you is not here anymore. Her body is here but SHE is gone. It's almost an insurmountable task and having to do it in fast-forward is unbearable.
My mother did stay in the rehab facility for a short while, (less than a week), but ultimately my dad decided he couldn't bear to keep her there. Over the months my sisters and I have gone around and around, wanting my dad to take care of himself and get different kinds of help for my mom but after lots and lots of discussions, we've all come to the conclusion that it's his decision and we just have to support it. I don't know what it's like to have a spouse with Alzheimer's so I can't force my beliefs onto him -- he has to do what feels right to him. But I do know what it's like to have a parent as a caregiver to someone with Alzheimer's and it's almost as painful to watch as it is to watch Alzheimer's steal your other parent. My dad's physical health has deteriorated over the time he's been taking care of my mom and it hurts me to see it. To say nothing of what tolls it takes emotionally and mentally. One very good thing that has come out of my mom's illness is that my dad and I are incredibly close now, so much closer than we would have been had my mom stayed healthy. And my sisters and I, as well as my dad, have been able to engage in open and honest dialogues about everything and that's brought us all closer together, too.
I have to admit, though, that my heart and mind have closed a bit where my mom is concerned. It sounds terrible to say, I know, and it feels terrible to say but I think it's a self-preservation thing. After I had pretty much reconciled myself to my mom's prognosis, I didn't change my thinking when she began taking the Seroquel and improved. And I think that's because I don't want to have to go through all of the pain and sickening heartache when she deteriorates to that point again, because it's a question of when, not if. If I keep her distant emotionally and mentally, I'll save myself a little bit of pain. It really hurts my dad that I approach my mom this way and I'm sorry for that. I do still love my mom, of course, and on the outside our interactions are just the same as they were. But inside I am protecting myself. Not at all a conscious decision but when I forced myself to sit down and think about why I approach her that way, that's the answer that makes the most sense to me.
As you know, I have been dealing with depression and anxiety for over 10 years now. And, of course, dealing with all of this hasn't made either of those issues any better but I won't waste time getting into that! The main thing I noticed is that my natural tendency to isolate myself was only intensified by dealing with my mom's illness. I sort of dropped of the social grid and was harder to get a hold of than usual. No blogging, no visiting, no emailing. I just didn't feel like talking to anyone and I think a big part of that was because I didn't want to have to talk about my mom all the time. People are kind and want to know what's going on but, as I mentioned earlier in the post, it's tiring rehashing such depressing stuff all the time. Somewhat around the time I was dealing with all of this I had two close friends who lost their fathers to cancer. And in talking to them I realized that I was not alone in my isolating tendencies -- no one with a sick or dying parent, it seems, really feels like talking to anyone. I am grateful to them for the knowledge that I was not alone. I am incredibly sorry that my own issues prevented me from being a good and supportive friend. Dealing with my mom's Alzheimer's is oddly consuming and so I'm sorry I've been even more distant for such a long time.
When the Oscars were on last year, one of the nominated songs was Glen Campbell's "I'm Not Gonna Miss You." I broke down into tears about 30 seconds into the song because it so accurately captures what families, including the one with the disease, go through when Alzheimer's invades your lives. I'm not sure if any of my family members have heard it but I recommend it -- it's a great song on many levels.
And here's a video I really like that tries to help you understand what it's like to suffer from Alzheimer's. It's really fascinating. Over the years my mom has had episodes of hallucinations, both visual and auditory; paranoia; she has physical impairments like foot numbness and hand spasms; she can't follow conversations or trains of thought; she suffers from Sundowning; she organizes things obsessively but she doesn't put things where they belong -- she puts remotes in the freezer or paper in DVD cases; she gets mired in the minutiae of what she's doing so she'll spend hours sorting her shoes when she was supposed to be getting dressed or counting grains of rice when she should just be eating dinner. It can be incredibly frustrating dealing with my mom sometimes and that makes me feel incredibly guilty. Logically, of course, I know she has no control over what she's doing but sometimes, if I'm already irritable or tired, dealing with her can be downright infuriating. Caring for an Alzheimer's sufferer takes a reserve of patience that I do not possess. I can see that it's frustrating for her, too, in her more lucid moments and that makes me exceedingly sad for her.
I do apologize for this post being so wordy and rushed but I wanted to take advantage of World Alzheimer's Day to share my story with those of you who didn't yet know it.
