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.

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.

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?"

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 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. ;-)

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!!!

Just Posting

Wow, I haven't posted here since March. Time certainly does fly, especially when you're not having much fun. I've been treating a pinched nerve in my neck for three weeks now. The worst pain is gone but there is still numbness in my index and middle finger of my right hand plus a stinging feeling from my neck and down my right arm. It bothers me most at night. Things are better since I've gone from crying on the floor of the living room and writhing in pain at three in the morning cursing God for my lot in life to being able to tolerate the pain I now have. It's put quite a crimp into what I'm able to do but Krystal and Frank have stepped up to help me more than they usually do, which is a lot. Tomorrow I'm taking my mom to the dentist and then I have an appointment with my doctor in the afternoon to see what I need to do next about my pinched nerve business. Next Monday we have an appointment here at home with a nurse from a company that specializes in elder home health care to see about respite care for my mom so we can get some much needed time to shop or go the movie, or just take a shower and rest, etc. I hope my mom is receptive to the home respite care but I'm not sure she will be. Wish us luck!

Meanwhile taking care of my mom takes up most of my time but she's such a sweetie and often times she makes me smile, a lot. She's taking to singing songs like Home on the Range and The Eyes of Texas. She's quite good. :-) Below is a photo of her. Her hair isn't quite as white as it looks here, she still has more of a salt and pepper color but the light was behind her and gave her this glow. I think she's beautiful.

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