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.

More on Care Giving

I found the following information on the Family Care Giver Alliance site. Some good information here. The sections I've put in red are some of the very things we've been dealing with. I've also found good support and help on other care giving sites. It's great because you learn how to deal with the problems you and your loved ones are facing plus you know you are not alone in this fight.
My mom has been having episodes of severe anxiety the last few weeks and first I try to talk her down but sometimes I have to resort to one half of an Ativan pill. I have an appointment set up for mom next Tuesday and have lots of questions for her doctor. For one thing mom actually didn't know who I was two nights ago and went to Frank to ask her where her daughter was. She also ask me today how to eat a peanut butter sandwich. These are all signs that her symptoms have worsened.
I must state again that taking care of my mom since her dementia has gotten worse is far harder than I thought it would be, but thanks to Krystal who helps out and my husband Frank who is as patient as the day is long with her my task is much less stressful than it would be without them. Thanks to Cyndi and her boyfriend Michael for taking her out dancing and coming in to sit with her now and then and to Pam for her expert medical advice and to Evie for her support and holistic medicinal suggestions to the situation we are all facing together. Also thanks to our son Frankie and his wife Sandy for their unwavering support and always hosting such nice family get togethers to get us out of the house and be able to feel normal for a while. I'm going to try again and get a home health care worker in here again but it's going to be difficult. Wish us luck!
My neck problem is still there but the pain is tolerable so I'm not going to go into that problem for now.
I hope you find the following suggestions helpful. I know I did and hugs and good luck to you in your quest to be a care giver to a parent, spouse, or other loved one.

1. Being Reasonable, Rational and Logical Will Just Get You into Trouble. When someone is acting in ways that don’t make sense, we tend to carefully explain the situation, calling on his or her sense of appropriateness to get compliance. However, the person with dementia doesn’t have a “boss” in his brain any longer, so he does not respond to our arguments, no matter how logical. Straightforward, simple sentences about what is going to happen are usually the best.
2. People With Dementia Do Not Need to Be Grounded in Reality. When someone has memory loss, he often forgets important things, e.g., that his mother is deceased. When we remind him of this loss, we remind him about the pain of that loss also. When someone wants to go home, reassuring him that he is at home often leads to an argument. Redirecting and asking someone to tell you about the person he has asked about or about his home is a better way to calm a person with dementia.
3. You Cannot Be a Perfect Caregiver. Just as there is no such thing as a perfect parent, there is no such thing as a perfect caregiver. You have the right to the full range of human emotions, and sometimes you are going to be impatient or frustrated. Learning to forgive your loved one as well as yourself is essential in the caregiving journey.
4. Therapeutic Lying Reduces Stress. We tend to be meticulously honest with people. However, when someone has dementia, honesty can lead to distress both for us and the one we are caring for. Does it really matter that your loved one thinks she is the volunteer at the day care center? Is it okay to tell your loved one that the two of you are going out to lunch and then “coincidentally” stop by the doctor’s office on the way home to pick something up as a way to get her to the doctor?
5. Making Agreements Doesn’t Work. If you ask your loved one to not do something ever again, or to remember to do something, it will soon be forgotten. For people in early stage dementia, leaving notes as reminders can sometimes help, but as the disease progresses, this will not work. Taking action, rearranging the environment, rather than talking and discussing, is usually a more successful approach. For example, getting a teakettle with an automatic “off” switch is better than warning someone of the dangers of leaving the stove on.
6. Doctors Often Need to Be Educated By You. Telling the doctor what you see at home is important. The doctor can’t tell during an examination that your loved one has been up all night pacing. Sometimes doctors, too, need to deal with therapeutic lying; e.g., telling the patient that an antidepressant is for memory rather than depression.
7. You Can’t Do It All. It’s OK to Accept Help Before You Get Desperate. When people offer to help, the answer should always be “YES.” Have a list of things people can do to help you, whether it is bringing a meal, picking up a prescription, helping trim the roses or staying with your loved one while you run an errand. This will reinforce offers of help. It is harder to ask for help than to accept it when it is offered, so don’t wait until you “really need it” to get support.
8. It Is Easy to Both Overestimate and Underestimate What Your Loved One Can Do. It is often easier to do something for our loved ones than to let them do it for themselves. However, if we do it for them, they will lose the ability to be independent in that skill. On the other hand, if we insist individuals do something for themselves and they get frustrated, we just make our loved one’s agitated and probably haven’t increased their abilities to perform tasks. Not only is it a constant juggle to find the balance, but be aware that the balance may shift from day to day.
9. Tell, Don’t Ask. Asking “What would you like for dinner?” may have been a perfectly normal question at another time. But now we are asking our loved one to come up with an answer when he or she might not have the words for what they want, might not be hungry, and even if they answer, might not want the food when it is served after all. Saying “We are going to eat now” encourages the person to eat and doesn’t put them in the dilemma of having failed to respond.
10. It Is Perfectly Normal to Question the Diagnosis When Someone Has Moments of Lucidity. One of the hardest things to do is to remember that we are responding to a disease, not the person who once was. Everyone with dementia has times when they make perfect sense and can respond appropriately. We often feel like that person has been faking it or that we have been exaggerating the problem when these moments occur. We are not imagining things—they are just having one of those moments, to be treasured when they occur.

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.

A Quandary

MRI revealed that I have cervical spine stenosis (stenosis meaning a narrowing) with nerve encroachment. Have to make an appointment with a neurosurgeon to get his opinion (I'll tell you right now no surgery for me unless it's a last resort issue which it isn't right now) for the best course of treatment. My symptoms are what I wrote about before so I"m thinking it'll be physical therapy or a watch and see what happens kind of thing. I'm just wondering if I'll be on the gabapentin for a long time and what will happen if I go off of it...like will some pain come back. Tis a quandary for sure.
Mom is still not taking to well to the home health aide but I must admit I like having her here and having a few hours a week where I don't have to worry about taking care of my mom. Still some guilt about that but if I want to be healthy and take good care of her I have to take care of myself and this requires some time to myself. With a few health issues of my own that I have to attend to this is important. After reading countless articles on the Internet about taking care of an ageing parent with dementia (or just an ageing parent) I learned that care giver burnout is a huge issue that thousands are dealing with. Somehow it just makes me feel better to  know I'm not alone on this issue. There are rewards though. I find that my mom is a funny lady and there are more fun and happy moments then there are low disturbing ones. I wonder sometimes about my grandchildren's generation and what will happen to them since some studies have shown that they will live shorter lives than their parents. What will become of them?

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.

Mussings about Dementa/Alzheimer's

If you don't know anyone with Dementia/Alzheimer's disease or have  parents or another loved one with Alzheimer’s disease you will soon do so. Statistics say that  5.4 million Americans have Alzheimer’s disease and another 14 million or so act as unpaid caregivers. It is a horrid disease that takes away independence, steals memories, and rips away most all  dignity. 70% of people with Dementia have Alzheimer's. It effects a lot of elderly people but is not  a normal part of being elderly.
My mother, my family and I have become part of this growing number, especially in the three years or so when our mom began exhibiting some of the typical traits of the disease.  She was no longer able to balance the checkbook or pay her own bills and started talking to herself even when people were in the room with her. The most obvious symptom, repeatedly saying the same phrases and asking the same questions came early on.
These days I've gone from being a daughter to being a caregiver, helping her change clothes, shower, brush her teeth, and get in and out of bed. Thankfully she can use the bathroom by herself as well as feed herself. There are many times when I think she won't make it another day and then there are times when I think she's getting better. This roller coaster of emotions is something I was not prepared for because I go from anger to joy to hopelessness in the wink of an eye. I have to shake myself mentally and remember that this is about her, not me, and try and understand how it affects her, a once sharp and creative woman who could do anything she set her mind to. Now I sometimes weep at the loss of my mother but am careful not to let her see the tears. Today is one of those days. She had a hard night last night, waking up three times trying to remember something that needed doing, then wanting to be in her own bed (she was), then waking up wanting to know if everything was off. Now she is sleeping and I can't get her up to go outside, which she loves to do. This worries me. To be honest I worry if she sleeps too much and worry if she sleeps too little. I fret over the fact that her appetite has become non-existent despite her medications to give her more appetite and a calmer mind. At least the horrible delusions and auditory hallucinations have gone away thanks to her meds. She is also on Aracept but I couldn't tell you if it is doing the job it's meant to do because like I stated above some days are good and some are bad. And yes I've talked to more than one doctor and nurses and health care workers and read hundreds of articles on the subject. And what I know is still not much but every little bit of information helps and you never know what tips will work to make your loved one more comfortable or easier for you to do your job. It's a pick and choose what works world.
 We no longer plan “spur of the moment” things or get away for even one night but this is the road I've chosen and most times I'm not sorry for it. She took care of me when I was a babe and now it's time for me to care for her. I will state here that my husband and granddaughter are a tremendous help to me and so is the support of the rest of our family. I couldn't do it without their help and love.
Care giving is a demanding job, a 24/7 job. Our goal is to keep Mom safe and comfortable at home for as long as we can. How long will that be? No one knows.  For now we will take it all one minute at a time. Incidentally Medicare/Tricare do not pay for in home elder care, only care that involves a medical problem like cancer or diabetes, etc. Incontinence, hygiene, feeding, etc. is all on your own dime.
I do still walk in the morning, most mornings anyway and spend some time on the computer when I can. Some days I just get to read email and once in a while I get to write on my blog. I know that it is recommended that care givers take care of themselves too but sometimes it's hard to do. Still I have a great support system and hopefully in the future we can work something out and get some professional home health care people in to help us out. 
That's about it. Remember to give your loved ones a call or drop them a postcard or a video (my brother and his wife and our daughter in Seattle make videos for my mom and she loves them).  Communication helps and it makes everyone feel like they are doing something for their loved ones.

Cedar pollen on the way out!

Cedar pollen is on the way out! Yea! Took my early morning walks outside all week long. Had a couple of cool mornings but it felt good. This morning it's cool but the sun is out so I imagine it'll heat up some.
Since our we've had a non-winter this year everything seems to be blooming early and it all looks pretty. This would make me happy if I didn't know that a long hot summer was coming our way. Hopefully with La Nina ending soon we'll get back to a normal weather pattern and get some more rain.
My Mom has been having some memory problems and I've been talking to people about it like her doctor and nurse and our daughter Pam who is a nurse that has extensive experience with elderly patients. Their advice is most welcome and helpful in allowing me and our family to give her the best care possible. I've found some good sites online too. One of them is shown here.
http://www.helpguide.org/elder/alzheimers_disease_dementia_support_caregiver.htm
Took some more photos while I was out and about, hope you enjoy them.

2012 Frankie with his new van and his dad

daffodils blooming in our front yard Feb. 2012

roses blooming in Feb. 2012

the park was full of runners getting ready for marathon

Spring comes to Austin

Winter has gone and spring, well almost summertime temps, have come to Austin. SXSW, the Travis Co. Rodeo, the Texas boys high school basketball championship and a few demonstrations at the capitol have made for super crazy traffic which includes not only the four wheeled kind but the two wheel and foot kind. It's nuts. The parks are a dizzy crazy quilt of fences and cars parked in every little niche they can find. Celebrities have descended en masse to sell their latest projects so if you thought you saw a famous face on the Hike and Bike Trail you probably did. Thankfully SXSW will be over after this weekend and we'll only have the rodeo until the 26th and the Cap Metro 10K on the 27th.
I've kept up my walking routine but I think I gained some weight recently. I would increase my mileage but when I go over 5K a day or an extra day a week my left hip starts hurting. But my weight tends to go up and down 5 to ten pounds and while it was cold we made a lot of heavy comfort food type meals in the crock pot so hopefully I'll lose it now that salad and lighter meal days are here with the warmer weather.
Photos: 1. Mountain Laurel, 2. Wisteria 3. Wisteria  and red leaf hedge outside our bedroom window 4. White Iris in front yard 5. Bright pink geraniums and St. Francis statue off the front porch
Between the Mountain Laurel and Wisteria the yard is full of heady scents!