Sunday, December 26, 2010

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.


Kathie said...

Oh Carol, I am so sorry you are going through this with your mom, but I can totally relate to what you are feeling. Tomorrow, 12/27, it will 19 years since my own mother passed away from cancer. I thought it would be easier during the holidays after so many years, but it isn't. I try to concentrate on the Christmases before she got sick and remember what joy those holidays held, but that last Christmas always seems to rear its' head.

I'm not a doctor, but I'd like to suggest something for your mom...get some good probiotic capsules, and ask her nurses to open one at each meal and mix it into a spoonful of her food, preferably something like applesauce, or even into juice or other cool liquid. Our immune systems are centered in our guts, and probiotics have the ability to protect our gut when we are taking antibiotics as well as help fight off infections. A good probiotic is not cheap (I pay almost $20 for a 30 day supply at Walmart...Culturelle), and you may want the nurses to 'dose' her several times a day (the probiotic is NOT toxic), but if they can help your mom, you will find it is worth every penny you pay for it.

I check your blog every day to see how you are doing, and pray constantly for God to give you strength. You are loved. :)


Anonymous said...

Christmas is such a tough time of year to begin with and to have your mom sick - I am so sorry! I have cancer (we are talking "cure") and am going through chemo and radiation - there are times when I don't want to eat, either - the nutritionist recommended nutritional shakes and protein - whey - powder to mix in anything I can eat, like applesauce. Some of the shakes have over 600 calories. Would your mom be able to drink a shake or, if you froze it, spoon it like ice cream? I'm sure you and the staff have thought of all these things - just wish I could help. I check here often to see how you are doing -you are in my thoughts and prayers.
- Daisy in AZ

In the Pink said...

It is to bad that things are so rough for you right now. My heart goes out to your mom...I do hope the antibiotics help. I hope her appetite grows. I do not know what else to say. Just wishing you all the best this new year. (hug)

Miz Kizzle said...

It's terribly sad to see your beloved mother slipping away before your eyes. Be thankful she's not in severe physical pain.
You've done an admirable job in caring for your mother; you have nothing to feel guilty about on that count, although it's human nature to think we could have done more.
Your mother's life is coming to a close. At this point, her memories of her childhood and young adulthood are probably clearer to her than things that happened recently. She might enjoy seeing photographs of herself and her family that date back to her younger days. You can reminisce with her if she seems up to it.
You're a good daughter, Carol. Your mother loves you very much. I know her mind is muddled sometimes and she says hurtful things but that's the nature of dementia. In her heart she's still your loving mother.

Grace. said...

I don't have anything specific to say, but Carol, please know that you are in my thoughts. This is so hard. I lost my father over the course of 8 months; I lost my mother very suddenly during a surgery she was expected to survive. Neither way was better--both sucked!

Anonymous said...

I'm back to wish you a heartfelt happy new year! I hope your mother has responded well to the antibiotics and that she is doing better. I think you are coping marvelously and being an excellent daughter, mother and wife. I can only handle one crisis at a time and you have such a good heart. You and your loved ones are in my thoughts and I do wish you a good, better, best new year!
- Daisy in Arizona

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