Mussings during the last days of December 2013

Our mom turned 87 in December but we lost the essence of who she was about four years ago.She started repeating things over and over and forgetting where her beauty shop was and small things like that. Then she'd forget a name and could not recognize people that she did not see often. Then June 30, 2012 she did not know who I was and that hurt, a lot.   Now she often does not know who we are but she forgets who she is and does not recognize herself in the mirror or in pictures.  Reality for her has become what she imagines in her head. More than once she has gotten up in the morning and looked for her husband (our dad died almost ten years ago) and she told me her brother was coming to get her; he too has died, many years go. My family and I have learned just to accept and not try and  understand her world because if you try to help her or correct the facts for her she just gets angry and upset. Sometimes in a violent way.   So we listen and do what we can to help her maintain some sense of dignity.
Some find her dementia a bit amusing, I know, because her mental connections (or lack of them) can at times become decidedly different from reality. But her confusion and worry are real to her, as is her pain, and there is nothing comical about that. On some level, I know she knows something is wrong with her though she cannot articulate it. Her increasingly frequent paranoia, delusions, and hallucinations, however, say all that needs to be said. She may have dementia but she has not lost her capacity to feel or fear. No amount of empathy from me can fill the deep hole that has opened in her life, and in her despair she is perhaps most connected to the reality that is here and the reality that awaits her.
I know I am not alone in facing both the helplessness I feel in trying to be of some aid to her and in the guilt that comes with the fact I do not -- perhaps cannot -- do more. Many caretakers and loved ones have it far worse than I do, because I can still talk to her -- though what transpires on a daily basis is more a monologue in which I listen to what she is saying and she ignores whatever I say.
The number of people, some young but mostly elderly, with dementia will rise dramatically as the population ages. This may be my future as well,  should I be fortunate enough to live a long life. At the same time, our ability to fight this disease and give those afflicted some additional years of mental capacity and a good quality of life is sorely lacking. Sadly, at this time no cure exists.
I know, most likely in the not too distant future, my mother will be gone in body as she now is in mind. Dementia will not only continue to overtake her but will, the medical professionals tell me, diminish both her will and capacity to live. I hang on to the thought during the twilight of her life that this is the natural course of things just as I realize that she has lived a long and full life. In that sense losing her carries nothing of the tragedy of those killed in wars or horrid events such as the many school shootings we have had that cut young promising lives short But that does not mean that losing her will come without pain. Amidst the sorrow, we will find ways to let her go and celebrate her life.

October Thoughts

Grrrr...stupid Google always has the dumb pop up ads (that are supposed to be blocked) wanting you to upgrade to Google+ I don't want to do that, so I won't
It's October already and for once we have chilly windy weather here in Austin. Yeah! We've had some nice rain too. Double Yeah! Not drought busting rain but enough rain to turn things green again.
Our mom has been having ups and downs and therefore so have we as her dementia worsens. Yesterday she was on a tear of epic proportions and we did what we could to stay out of her way. She didn't like any of us, would not take her meds, and kept rattling the screened front door and yelling for the police that we were keeping her prisoner. Sigh. Frank finally managed to talk her into taking a lorazapam. He did this by being tricky. She wanted to go out back and sit on the patio. He said he would unlock the door and go sit outside with her if she took her pills. After 15 minutes or so of back and forth wrangling she finally took one. She bad mouthed me while they were outside and gradually the meds took hold and she was back to herself and I was  her 'sweet girl' again. Last night she called me into her room. She had wrapped up her poop and kind of smeared some around on the commode so I had to go in and clean it up. Good thing I have gloves and lots of disinfectant wipes and sprays. So that was two of my yesterdays, how was yours?
Today it's been okay and we're hoping it stays that way. The lady we hired from Professional Caretakers has not come in this morning nor has she called. I wonder if mom scared her off last Saturday because she was kind of wild for half of the morning. Speaking of wild, my mom just came in and told me that some women were in her room taking everything. Sigh. Of course there are not any women in her room but I went and looked and told them to get out and then my mom went to the living room and laid on the couch, still talking about them. Hope that's as bad as it gets today.
On a happy note. Krystal starts a new Internship with the Texas Observer on Tuesday. She's looking forward to it. It pays a bit but the important thing is the experience she will get out of working there. Also the Longhorns beat the Sooners in last Saturdays Red River Rivalry! Yippee!

Summer, blech

August is moving along quickly and soon school will start again and another year will be history. As a kid my memories are of long and lazy summers and even long not so lazy school years. Now the days whiz by as I hurtle towards the inevitable that we all must face. Guess time is relative.
On a personal note I've just be diagnosed with hyperthyroidism and have to undergo a couple of tests next week and start on some anti-thyroid medication after that. This is sort of a good thing because it explains a lot of the symptoms that I've been having. The hard part is that hyperthyroidism is hard to control so they usually get you hypothyroid because that is easier to treat. Ah well like they say it's always something.
On the mom front things are still spiraling down. She's having more bad times and not remembering things she did remember only a month ago like her son. She brought me his picture and asked me who he was and when I told her who he was she said he wasn't her son but her brother.  I think pictures confuse her because she does not even recognize herself in them. She doesn't recognize us a lot of the time either and this occurs mostly between the hours of 1 and 7, or the witching hours as I call them. There have also been times when she will not take her medication and locks her door because she says people are out to kill her. We have a key to the door so the door locking is not worrisome. Also she has had a couple of times where she was really out of control cursing me and actually taking a swing at me.  One thing I did find out by trial and error was not to give her anything chocolate with her medications. It really causes her to freak out. This wouldn't have a been a problem years ago because she never used to like chocolate but now she likes anything sweet including chocolate. Pam told us that as we age we start to lose our taste buds with sweet ones some of the last to go so that is one reason elderly people like sweets and why things like spicy foods don't register. Back to my point of not mixing chocolate with medications like anti-psychotics. We think it affects her that way because of the serotonin in chocolate that affects moods mixing with the medications that also do the same thing. It may be it overloads the system. So we do not do that anymore. I'm going to make an appointment with her doctor and go talk to him as her advocate and discuss her medications and any other treatment options available. We only need to take her in to see him when she needs a physical exam or lab tests. Also home health can come out and help evaluate her. And no, she still does not want any comfort care people to be here. I live to hope this will change.
So that's our summer so far. Hope yours is better.

LITTLE REST LAST NIGHT

Well it was a bumpy night . Mom never did get to sleep. I dozed off and on relying on the baby monitor to alert me if she left her room. She came out of her room a little after 5AM and Frank got up and made her some toast and gave her some orange juice. She went back to her room and came out again a little after seven. All the while even in my stupor, I could hear her talking. Frank made her some oatmeal and she went back to bed but I can hear her still talking and walking around her room. I pray that she surely will have to crash soon.  It is my opinion, based on my experiences in taking care of her that she is 'cycling'. It is a condition that happens every six to seven days that results in extreme erratic behavior. After the behavior ends she crashes into a deep sleep for many hours and when she wakes she is back to her normal self, or what counts for normal given her severe cognitive decline.

ALZ Progressing

My mom as beautiful as ever. We went to Gillis Park on Sunday just for a little outing and she seemed to enjoy it. Alas, after we got home she thought we were some place else and she said her husband was coming to take her home and she sat and waited by the kitchen window for this to happen. For those of you who don't know, her husband, our father, died 9 years ago. Heart breaking isn't it? Needless to say it took some cajoling and just out right lying on our part for us to bring her back to a place where she allowed me to escort her to her room to lay down and rest. ALZ is a ruthless enemy and sadly, at least for now, an enemy that cannot be defeated.  The little brace on her arm is to help with a form of tendinitis that has been bothering her. A home health therapist comes in twice a week to help diminish the pain from the inflamed tendons at the base of her thumb and arm.

Lazy Hot Day

A hot Saturday but it's nice and cool in the house so yes I'm staying inside. Did I mention I hate summer time? ;-)

My mom is sleeping. Once again I've talked to the doctor (I think he's going to disown me as a patient or a caregiver) about my mom's meds. I truly don't like how the anti-psychotics affect her, any of them, but I do want something to calm her down when she's really upset. They prescribed a med just for that and it's to take as needed. A couple of days ago she thought someone was coming to kill her and we should call the police and then she didn't eat her food but said she had put something in it to make the people sick and for us not to eat it. We just roll with the flow with these delusions. I just don't like to see her upset and it worries me. The next day she usually doesn't remember them but last night she asked if I was her daughter and who was the man she saw in the hall...he was my husband. It was late in the afternoon though so I think it was a bit of the sun-downing effect..

The fingers on my right hand are still numb and the muscles in my arm were jumping. Guess I'll find out Monday what's going on with the nerves in my neck.

Did enjoy most of the season finales. NCIS writers are bat rastards for leaving us to worry about the fate of Ducky lying alone on the beach. Sigh. I think the last scene in NCIS:LA was a set up to get the bad guy. No way would G shoot a man in cold blood, at least not in front of thousands of people watchin it on TV.  I really like The Mentalist but I'm sick of the Red John villain and want him gone, gone, gone. Thought it was funny that Hawaii 5 0 and Grimm had the heroes end the show with the same word, "Mom". Once Upon A Time was great and we can look forward to all manner of magic in the next season. Person of Interest and CSI were good too. Now for a summer filled with mostly crap but I do enjoy So You Think You Can Dance and The Closer. Since The Closer starts in July and runs six weeks we can then enjoy football that starts in August!

That's about all for today. Hopefully Ill have something to write about my nerve problem in a few days.

Quick Sunday Update

I know I'm putting some personal information on this blog but I'm hoping that if someone is experiencing the same thing that some of what they may read here might help them as they assist their loved one in coping with this scourge.
First week with a comfort care lady and it's so so. Mom does not seem to care for some stranger talking to her and she won't let her wash her hair or help her in the shower. And mom is talking to herself again even when someone else is in the room with her.  She had been doing that at the dances she went to but I did not find that out until she stopped going to them. One of the ladies who missed her coming called and told me about it. The doctor doesn't like to keep her on the dementia meds for long periods (other than aracept...which I don't think is working anymore) so things may or may not get dicey again. Guess we'll have to wait and see. TV seems to be a puzzle to her too and she does not read much anymore. Just a few headlines here and there. I put the Lady Horns softball game on today and while she seemed interested at first she dismissed the game and went to sleep. I guess as long as she is talking to herself she is entertained and in a world she can control. I can't imagine what's going on in her once sharp as a tack mind. I've been told by many that watching a loved one with dementia is harder for us to watch than it is for them to experience but I'm not so sure of that information. My mom knows something is wrong with her but she's just not sure what it is.
Tomorrow I have to get an MRI and long ago when I took one I found I was a wee bit claustrophobic towards the end of the test. I hope they drug me up or I might freak out this time. Stupid pinched nerve, it's more trouble than anything I've had in a long while. Bah.

3 or 4 more weeks

Yesterday was busy. Took my mom to the dentist where they fixed a broken tooth of hers the best they could (and it was expensive) but they could not crown it because she can't take the amount of water and saliva that happens when they are drilling and doing tortuous stuff like that. Her swallowing reflex is delayed and she chokes really bad if a lot of water is used.So they roughed up what remained of the tooth and built on it with a resin compound. It's weak and may break at which time they will only have one solution for it and that is to pull it.  She did well for most of the visit but was really tired when we left. She didn't sleep though. She sat out on the patio and listened to music. We had hoped that the new med she got which looked promising was all that we had hoped for. Alas she had an auditory hallucination and that was upsetting, for her and for us. As long as the delusions and hallucinations are not scary we won't worry about it. We thought maybe the stress of the dental visit got to her and we're hopeful that things will settle down for her.
Later in the day I went to my doctor and he decided to put me on one more round of prednisone and gabapentin. I improved (in his opinion about 40-50 percent since my last visit) and they took x-rays and didn't see anything but some arthritis around the neck area. If I don't get back to 100 percent after this an MRI is in my future because then they will want to know if I just have a bulging disc or a ruptured disc. My arm still hurts (but not crying hurt) and tingles like you would if you hit your funny bone. This feeling is from shoulder to fingers with the fingers still being numb. This makes me cranky so I try not to let anyone suffer for it. Wish me luck!
It's hot here and the air conditioner is on. I hate summer and oh yes, I hate my pinched nerve!!!