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.

Late Night Ramblings

It's 11:30am. I went to sleep about 10 but then was awakened by my mom walking down the hallway. I got up and found her in the kitchen. She was looking for "Homer", an old boyfriend she used to see after our dad died. Homer has since died and I guess he's easier to remember than our dad is since he died 2 years ago and our dad died 9 years ago. Anyway, I got her back into bed and about 15 minutes later she got up again and said her mother was bringing her something and wanted to sit on the porch and wait for her.  Her mother died about 66 years ago. I got her into bed again. Hopefully she'll stay in bed this time and fall asleep and I can get some sleep too. I'll say it again, I wouldn't wish dementia/alz on anyone. It's horrible. I hope other care givers all over the world can get some sleep tonight to face another day in purgatory. There are bright moments to be sure but they are few and far between since her disease has progressed. She was such an independent, regal, smart, tireless and optimistic person that it's heartbreaking to see her deteriorate. Sometimes I pray for her release and then feel bad for doing so. Thank goodness for my husband who helps me get through each day and also our children and grand children who offer the support they can. Friends too, like Elaine. They all are angels and I couldn't do this without them. The posting says I posted this at 9 something pm, I wonder if the blogpost server is on west coast time? Cause it's almost midnight my time.

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.

Updating in April

 

Derick dressed for work. He's sharp. :-)

Frank working out with the walker. He's doing well, the next appointment with his surgeon is in May.







Thoughts, prayers, good vibes go out to the people of Boston, Mass. and West, Tx. Both tragic events. Kudos to the police and to the brave first responders and volunteers at the Boston Marathon and to the agencies that caught the culprits so quickly. Also heartfelt thanks to the volunteer firemen who lost their lives in West and the young officer at MIT who lost his life responding to a call.  To all who raced in to help, thank you.


The following information contains excerpts from care giving sites. There are many of them out there, some too commercial, some just places for venting, and some that provide great information and also helpful tips and comfort from other care givers. I've adjusted the talking points with facts that fit my situation. The quoted sections are answers I've found. The info I did not find pertinent I left out.

1: I find myself correcting information my Mom gets wrong even though I know she gets facts confused because of her Alzheimer's. Arguing is counterproductive and  oft times just becomes upsetting to her and to me.  Experts say I should agree with her statements no matter how outlandish they seem. This is difficult but I've been trying to do this and misdirect her instead of correcting her.

"Admittedly it's hard to listen to people you once admired for their wisdom make bizarre statements, so your reflex reaction is to correct them. Also, you may feel that "lying" to your parent or spouse is wrong. You may even feel that agreeing with them when they are wrong is condescending.
It's important for you to change your thought process. Accept the wisdom of those who've studied the disease. They will tell you that when you validate your loved one, you are showing compassion. Conversely, arguing only increases the person's agitation and decreases their self-esteem. Your loved one with Alzheimer's disease is living in a reality that is different than yours, but just as real to him or her. You are the well person, so it's up to you to try to share your loved one's reality. When you adapt to this way of thinking, life will be easier for both of you. (Read: 10 Tips for Talking to Someone With Alzheimer's)"

2: Sometimes I'm angry with family members and the few friends she has  because they won't make any attempt to see Mom. It's true that she often doesn't recognize them and forgets they have even been here, but I feel they should try to visit anyway. I don't understand how people almost always make time to attend a funeral for their friends and 'loved ones' but don't find the time to visit or call them. Flowers and words of comfort and love are for the living since the dead can no longer hear or benefit from them.

"As unfair as it seems, there are many reasons why they don't visit. Try to understand why they don't  feel their visits are meaningful. To visit someone who doesn't remember who they are and will forget their visit as soon as they walk out the door seems like a waste of time.
Then suggest that they visit whenever they can for their own sake. Let them know that you understand that it's hard for them and it may seem like a lost cause. Offer them the perspective that they will  probably feel better emotionally after she is gone because they know that they did make an effort to visit and comfort her while it was still possible." 

3: I've so happy when Mom is content that I feel hope she will recover even though  her doctor and the visiting workers say this is not possible.  Alzheimer's (and pretty much other types of dementia)is a progressive disease.

"You deserve to take time to enjoy the fact that your mom has moments of  'normalcy'.However, care giving needs can change quickly. It would be wise to give yourself a deadline to begin researching the next step in her care. I'd suggest that you go online to your state website and type "aging" in the search box. By doing so, you'll be led to many resources that your state provides. This process will help you develop a plan for your mom's future care."

4: I keep putting off making an appointment for my physical and my mammogram because Mom has so many medical appointments. This is time consuming, and I get tired of sitting in hospitals and doctor's offices,

"This is your time to take care of yourself. Your mom has professionals looking after her most of the time. Yes, you take her to medical appointments, but you still need to make time for your own. As I mentioned above, care needs can change quickly. Use this time to get caught up on your own care – physical and mental. If you do this, you'll feel more prepared for changes in your mom's care needs.
Now, it's time to write out your own lists. Delete the suggestions above that don't apply to you and then add your own take on things. Maybe you'll only have one or two negative areas that could use improvement. Maybe you won't have any. It's still a good exercise to think about your routine from time to time in case you can upgrade your own quality of life and maybe even that of your care receiver. What better time to do this than spring?"

Sometimes not sleeping

Sitting here at 1:22 AM listening to my mom talk nonsense in her bedroom. Was awakened by her about an hour ago. She was walking up and down the hallway talking gibberish and I got her back in in bed and she quietened down for a while. Now she's talking again. Don't know why some nights she doesn't sleep and meds have almost no effect on her. A pill that would knock me out for a few hours rolls of her like water off a ducks back. I don't know what phase of her disease she is in. She saw the doctor a week ago and her blood work was fine except for low vitamin D. She is losing more cognitive skills though. He prescribed an patch for her to wear but she pulls them off and we find them stuck to various things around the house. No help there. This disease is brutal and sometimes I find myself praying that God will take her and then crying because I don't want to lose my mother. What a sad mess. I wonder how many other care givers around the globe are feeling the same way tonight and every night.

Healing is Progressing

One week after surgery

One and a half weeks after surgery

Things are looking good on the broken leg front. Healing is moving along nicely. They still don't know why it broke. All the tests came back good. The best was no new cancer found! No osteoporosis either. They put a titanium rod from knee to ankle so it should be stable. They think a possible reason is because it looked like the bone was not used much and deteriorated and broke. The cause for that could be that he has no triceps muscle and just too much pressure put on it without the help of the muscle to cushion the pressure made it weak. The other reason could have been what Dr.   Williams said..."you're just an ornery old man".
;-)
On the other fronts my mom is doing okay. She is having more moments when she doesn't know exactly who I am and sometimes she gets sad and cries because she misses her mother. Her mother died about 67 years ago but I guess in her mind not that much time has passed. She is eating though and still likes to spend time outside. It's take one day or one minute at a time with her. We keep her clean and comfortable. We try to talk with her but she's taken to talking to herself more and more, even when you are sitting beside her.

Two weeks after surgery

Two weeks after surgery, exercising with elastic band

So we just roll with the punches. I'm okay and try and take things as they come. I will say that without our granddaughter living with us I would most likely have collapsed of exhaustion by now but she has helped me bear the load and it helps, it helps. Our family is strong though and they help in any way they can and so do our friends. Nice.

It's always something

It's been a crazy busy four days. Busy with lots of hurry up and wait times. You see my husband broke his left tibia in two. The break is just below his knee. He had surgery twice before  on that leg, the first one because of a cancerous tumor, the second one because he broke the rod they put in it to give it strength. He also had a hairline fracture of his tibia that didn't require surgery.  So we are now in the waiting room waiting for them to give us the news on how it went. Thankfully we have great family support and great support from some terrific friends, and you know who you are. Keep us in your thoughts and prayers please because it's going to be long rehab for him.  I'll keep you posted on his progress.