The saddest holiday I can remember....

Hi everyone...I'm so sorry to be sad during what is usually my favorite time of the year....and really, for the most part, things are looking up more than I had recently imagined that they could.

The thing is....I'm afraid I'll be losing my mom soon.  She now has a 3rd UTI and the bacteria culture shows that it is Vancomycin Resistant Enterococcus, or VRE, for short.  For you and I, even though it's a bacteria that's resistant to most antibiotics (but not all), it really doesn't affect us, because our immune system(s) can take care of it.  But in people with weak immune systems, it is very hard to get rid of.  The nurse practitioner at the nursing home says that she thinks that my mom may get better temporarily, but we will probably never be "rid" of this infection.  She is being treated with Macrobid, which is one of the very few antibiotics that have proven effective against this bug.

Sadly, despite the antibiotics, which were started four days ago, I am not seeing that she is "getting better" much.  Yesterday she seemed to be alert for about an hour.  Today I went to supper with her, and got her to eat a little bit, but then suddenly, she couldn't stay awake any more.  I left feeling so very down and heartbroken.  I haven't wanted to write this post, because I've been afraid on some level, that I might "jinx" things--even though I know I really couldn't, somehow, I'm still strangely superstitious.

Here is what I am seeing/thinking, and I am very much hoping that I am wrong, and willing to be wrong and admit it proudly....but.....

My mom is still not eating much.  She eats more when I am able to be at the meal with her and coax her to take a few bites.  Based on my "career" with trying to become a size 5, I can guesstimate that at the meals where I am present, she is only eating about 100 calories or so.  And I'm told that she "eats better" for me than for the aides.  Many times when I cannot be with her at mealtimes, she refuses to eat at all.  I'm a little confused about this because of the dementia.  I know that when someone "stops" eating, it's a clear sign that the end will be coming soon.  But with Alzheimer's, I'm not completely sure if she has stopped eating because of that reason, or if she has stopped because she doesn't feel the hunger, doesn't remember why it's important to eat....?  I don't know if it even matters....Even when I'm feeding her, she gets to a point where she absolutely won't eat another bite--I guess when the time comes where she is "done" eating before she even starts, then I'll have a clearer idea of what's really happening with that.

I suspect that I may not even have time to worry about that.  These nonstop UTIs have really been wearing her down.  The nurse practitioner says that my mom's immune system is fading and she is no longer able to fend off any of these infections.  So at this point, the eating/non-eating issue may be moot, because of the infection(s).  Especially this most recent one.  I thought my mom would at least "bounce back" a little when they started the Macrobid, but that hasn't been the case so far.

Yesterday, Christmas Day, was very sad for me, too.  I was really torn as to how to do things and I'm afraid I didn't do a very good job.  DD was allowed to come home for a visit.  And since she hadn't seen many of our extended family since she went to the treatment center, I thought it was important that she be able to attend our traditional "family" Christmas and know that she was still included in the family.  But what that meant, unfortunately, was that my mom would be absent from the get-together, because at the moment, she is not able to provide much assistance when it comes to getting her in and out of the car, or in and out of the wheelchair....and my brother's home has lots of stairs, even just to go inside.  So I made the decision that DD would attend the Christmas with DH and I, then we would rush home and I would spend supper with my mom.  And we will have a "special" Christmas celebration on Jan. 1, where my brother has promised to bring his two little boys, so "grandma" can see them opening presents.  I hope she is well enough at that point.  I'm a little worried that, if things keep going the way they have these last couple of days, she might be bedbound by then.  I am so much hoping and praying that is not the case.  But I have never gone through this with anyone before, so I don't really know what to expect other than from here on out, it's probably not going to be easy or fun.

I feel like I've been focusing so much energy on my mom lately, that I (once again) have been falling down in the other areas of my life--you all know I tend to do this, but I don't think my family realizes it yet.....when things are really really bad, I tend to not want to talk to anyone except maybe DH.  So I haven't been communicating with friends who've reached out to me, both from this blog and from my old job that I got laid off  from.....I haven't been living up to my own expectations of myself.   And that doesn't help me feel any better.



I'm sorry I'm so sad tonite.  But I knew I could tell you about it.

Interesting Article--Bipolar Has Many Faces

From health.com: 
Although the symptoms of bipolar disorder can vary significantly from person to person, mental health professionals have identified four main subtypes of the illness that are sometimes referred to as bipolar spectrum disorders: bipolar I, bipolar II, bipolar not otherwise specified, and cyclothymia.

Factors that differentiate the types of bipolar include the duration and intensity of the mood swings. Knowing which type you have can help doctors choose the right course of treatment, according to Gabrielle Carlson, MD, professor of psychiatry and pediatrics at Stony Brook University Medical Center in New York.

The article goes on to describe the similarities and differences in the types of bipolar.

Click on the link below to read the entire article.

Bipolar Has Many Faces

Dangerous Thoughts

I’ve been really concerned lately about my relationship with DH. I know that all marriages have ups and downs, but it seems like this "down" has lasted forever. I get so angry, I surprise myself with the anger, when I come home from work after my 2-hour each way commute and find that he hasn’t done anything at all except eat and sit on the couch. Even if I’ve called him from work to remind him to do something, chances are, it didn’t get done.

DH’s hours have been cut for the winter, due to fewer customers where he works, so he’s home three or four days a week.

I used to be able to tell myself that "it’s part of his illness" and "he can’t help it" and all sorts of stuff like that, but lately it seems like all I feel is resentment and disappointment. I’m tired of having to remind him to do everything, including taking his pills. I’m tired of coming home and having to do three loads of laundry even though he’s been sitting there all day. Lately, he can’t even lift a finger to call me and tell me that "the dogs are out of dog food" or whatever.

And I’m starting to think dangerous thoughts. On occasion, I find myself wishing that there was a man in my life who carried his (figurative and literal) weight. Who didn’t need constant reminders for everything. Who would work with me as a team, instead of dead weight. Who was financially responsible and didn’t incur a bazillion medical bills, dental bills and prescription bills…And when I think about that imaginary man, it feels really good. And the scariest thing is, I know I’m not asking for much. At least I don’t think.

I find myself thinking about how hard it is for me to handle everything at our house and how things would be easier if I either moved back to town, or moved to a city. And I find myself thinking about how nice it would be to live somewhere where I didn’t have to take care of DH all the time.

And I recognize that’s a bad thing. I did marry DH for life. I don’t break my promises. And I don’t intend to. But in the history of our marriage, these thoughts are very new to me. It’s likely that I am sensing that DH isn’t trying like he used to. And I’m feeling really beaten down, like I’m on a treadmill and can’t get off.

I’m wondering if I’m depressed? I honestly don’t have time right now to go and ask a doctor about that. But it’s a possibility. In recognizing these new thought patterns, hopefully, if I can’t go to the doctor, maybe I’ll be able to self-analyze and figure out what needs of mine aren’t being met. It’s clear that I need to do something, because these kinds of thoughts tend to feed upon themselves and poison things. So I’ve got to stop them, but not quite sure how right now.

Mom: A rebound of sorts

My mom has had two "good" (or better anyhow) nights this week, where she ate supper and took her pills without any coaching from me. Yesterday she told me that she went to the exercise class that they have at the nursing home, and that they "throw the ball at her a few times". (They play a seniors version of volleyball with a big beach ball).

I try so hard not to get my hopes up, but what a Christmas present it would be if she stabilized again and was no longer (I’d even take a "most of the time") living in that world where people are shooting at her and she is worried about being hung or convinced that I am dead, etc….I know she’s not going to get "better" by most standards, but if she was not so scared, I think I could handle the rest of it better.

Another thing, though, because yesterday was such a "good" day for her, tonite’ll probably be worse again. It’s just a different kind of roller coaster than the bipolar is. I’m not ready to lose my mom but I don’t think anyone ever is "ready". I don’t know what’s worse—the thought of losing her, or watching her go through this torment.