May...still a difficult month for me

Don't know if I can post tomorrow or not so I'm posting this today. Tomorrow will be the second anniversary of my mom's passing. She is greatly missed.
I find myself wondering why getting over her death has been harder than getting over the death of my father. I've come to the conclusion that when my dad passed (Feb. 8, 2004) we had mom to worry about and take care of so there was little time to think and little time to mourn. Mom had been ill with Alzhiemers for about 7 years and the last three years of her illness where intense and then suddenly she was gone and I had nothing but time to mourn and comb through her belongings and see all the things that she had enjoyed. We're still finding things that I don't know what to do with. It's crazy. Because of this I have given away things of my own that don't have particular meaning for anyone so our kids won't have to go through the same task.
The old saying that time heals all wounds are wrong. It just dulls the pain.
On a happier note we have been having some good rain and Austin is green again.

Still Struggling

It's been a long while since I've posted anything here. Still struggling with the loss of my mom and it's been over a year now since she left us. I guess the years of care giving have made it harder because taking care of her was my purpose in life and suddenly it was taken away from me. I love my family and they have made it possible for me t function as normal as possible through all that has transpired in the past few years. I feel for all those people who are having to go through the same thing that we went through. All I I can tell them is that it too shall pass.
We have done a few fun things, like go to movies, take a short trip to Shreveport to gamble a bit, etc. I want to go to the gulf but so far we having worked out a time to get there.
I've tried to get back to painting and writing but so far it's been a no go there. I have started reading again, thanks Stephen King for being so prolific and writing novels and short stories that take me away to other places. Looking at social sites like FB have taken my mind off things from time to time but quite often I find that we wade through many posts that are the same due to all the sharing that goes on. Still, it's been a way to keep up with people who don't use snail mail or make phone calls.
Not much else to say right now but hopefully I will get up to speed again and get on with life.

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!

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.

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?"

Time flies even when you are not having fun

Geez whatever I thought of posting has fled my mind. Guess it might be because my husband and I got to go out and eat at the Olive Garden, alone, and had a nice time. Our daughter Cyndi came by to sit with my mom and we thank her for that. Also got a break last weekend when our eldest daughter Pam came down and we got to scoot out of the house for a couple of hours to shop. It was nice.
Mom's skilled nursing is over as her orthostatic hypotension is now under control. A speech therapist came by on Friday, not to assess her speech, but to evaluate her swallowing. Mom coughs when she drinks any kind of liquids and it seems you use the same muscles to swallow that you do to talk, or something like that. Anyhow she put sent her report to her doctor and they will come and do an x-ray of her swallowing here at the house! Who knew they could do that? Not us for sure. It's better to have medical people come to the house because it is easier on my mom. We took her to the doctor this past Monday and aside from her having low potassium she was doing as well as can be expected. So I'm giving her liquid potassium once a day for three weeks and then they will repeat the test. My days are filled with care giving, doctor visits, health care nurses (now over) and the like. At least I know what is happening to my mom and she's not scared and alone in a strange place. Sometimes she doesn't think she lives here and thinks I'm someone else and I shudder to think what she would do in an unknown environment. End of life care especially when complicated by dementia of the Alzheimer's type is very hard but I draw strength from my family and that certainly helps. One thing I sorely wish for is for mom to let us bring in a paid home health care aide but I don't see it happening anytime soon. She barely let the nurse in the house and sometimes she had to see her out on the patio.
One day while helping to prepare dinner I had left mom on the patio and checked on her every fifteen minutes or so. Well while I was getting pans out from the cupboard we heard a knock on the door and it was a lady that said there was an elderly woman tyring to flag down cars (thankfully from inside the fence that had a locked gate). She told the lady she had been kidnapped and that we were going to kill her. Thank goodness the lady in question said she had gone through something similar with her dad and knew what was happening. So mom has to be watched much closer than I thought. Oh well you do what has to be done.
So kudos to all you caregivers out there. It's a tough job but one I think is doable. Just give yourself a break now and then, easier said than done, but something that is needed.
On a more upbeat note Frank's brother Richard came by for a nice visit and the two bros got to chat and chat for hours. It was fun having him here and listening to their stories. I know it did a world of good for Frank. I'll post a picture or two later on.

A Quite Saturday Morning

I found this question on site I visit quite often agingcare.com. This question could have been asked by me with just a change in the wording  from 'father' to 'mother'. The answer gave me some insight, so I hope it might help others deal with someone suffering from dementia too.
The past week has had it's ups and downs. Yesterday was going pretty well until my mom started yelling and scurrying down the hall that a 'lady' had told her to come out into the hall so she could tell her that she was going to be arrested so she could get her house. Somehow the thought of losing her home weighs large inside my mom's mind and she comes out with different scenarios about people trying to take it away from her. We do our best to reassure her that all is well and most times we can calm her. All I can think is that at times it must be hell inside her mind. The 'long goodbye' is indeed a cruel disease. I hate it.
The lines marked in red are what we identify with the most in the article.
Q: It hurts to see my father with Alzheimer's deteriorating before my eyes. How can I accept the decline?
A: Many people who have experienced a loved one's dementia have said that given the choice, they'd rather deal with almost any other ailment, no matter how painful or debilitating. There's little we can do to fix the deterioration of memory, communication skills, and reasoning that dementia steals away. Few experiences are as frustrating as watching a once-vibrant person deteriorate into a confused stranger. It's not fair, it's not right, and it's hard to accept gracefully.
Try to remain calm. Pain and helplessness breed anger, and anger about the situation may spill over onto the person. Answering the same question 20 times in one afternoon or hearing your loved one recite a skewed account of events for the hundredth time can make you want to scream, but losing your cool helps nobody. Remind yourself that your father did not develop dementia to annoy you: He's not doing it on purpose, and he can't help it. And it isn't your fault, either. It just happened.
So change the subject. Suggest that you go out on the patio together and look at the flowers. If all else fails take a break, and do something that will help you regain control. Take a walk or grab a cup of tea. Call a friend. If you can keep your wits about you, remain in control, and take care of yourself, you'll be more "present" (and pleasant) for him, and you'll both benefit.

---

Robert Bornstein, PhD, is Professor of psychology at Adelphi University, and co-authored "When Someone You Love Needs Nursing Home, Assisted Living or In-Home Care."

Regarding the horrific events in Aurora, CO. All I can say is that our hearts go out to the families of the victims.

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.

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?

A First For Us

Today a home health aide is coming in for the first time. She will be here for hygiene, company, respite care, etc. Hopefully mom will accept the care and not be freaked out by a stranger coming into the house to help care for her. She'll come for four hours a day, two days a week if all works out. Keep your fingers crossed for us that all will go well. I really need the help to get over the pinched nerve thing and to take care of myself. I have cardio-vascular disease, moderate, am pre-diabetic, and it takes some doing on my part to beat these diseases back and keep them at bay. Poor mom, she's had to suffer indignities this past week with her constipation problems that resulted in a mild impaction landing her in the ER where she had to wait 4 hours for treatment. I believe this problem might have been avoided had I known what signs to look for and how to treat it. We did call the doctor's office and get advice but I think by then the problem had progressed to the point where immediate professional help was necessary. I've had to do things for my parent that I never thought I'd have to do and it's certainly been a learning experience for me, well it has been one for all of us here at home. I guess girls do take care of moms and boys take care of dads which is good because there are things only a daughter or woman can do for a mom and I'm sure that only men can take care of some things for sons and dads.

Speaking of my pinched nerve. I'm coming off of my second round of prednisone therapy and I feel like a puffer fish and look like a chipmunk with his cheeks full of nuts. I was told that the swelling will go down now that I'm finished with the pills. I hope so. I worked to get my weight down and now I've gained 8 pounds since I've been on those pills. Weight, so easy to put on so hard to take off! Well the puffiness takes away the wrinkles. ;-)

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.