Saturday, September 5, 2015

Notice....



This blog is on sick leave. Indefinitely.  And I’m not the patient.
I find it comforting in a way to understand that at different times as we move along in our lives each one of us is given a burden to bear.  Comforting?  Because I know I am not alone.  How we deal with what we are given will be determined by how we were raised and how we choose to live our lives.  A terminal illness has struck my family. It doesn’t matter if you come from the poorest family on the face of the earth or you were the President of the United States, Alzheimer’s disease does not discriminate. In fact in a recent survey, Alzheimer’s was listed as the most feared disease among American adults, second only behind cancer. Dementia is also well documented as being the most costly disability in the world.  It is a death sentence. 
I first realized my mom was ‘losing it’ when she would tell me the same cat story over and over again.  Every time we’d get in the car to go shopping, she’d say, “Did I tell you what the cat did today?”  And inside I’d whine and think, “Not the cat story again!”  Then she couldn’t do her checkbook.  Then she would confuse her dates and months.  I moved from Massachusetts to Florida but mom didn’t want to come with me, stating she preferred to stay where she knew her surroundings and neighbors. That made sense, so I didn’t push her.  For months she would ‘present well’ when we talked on the phone, but one day the police called to tell me mom couldn’t find her way home.  And it hadn’t been the first time.  That weekend I flew up to take her to the doctor. Mom was diagnosed the late stage Alzheimer’s. And so my eyes were opened to what was really happening to her, and I began my journey as her caregiver.  That was this spring.  I really didn’t know what I was getting myself into, but I couldn’t turn my back on my mother.
Alzheimer’s disease is an irreversible, progressive brain disorder that slowly destroys memory and thinking skills, and eventually the ability to carry out the simplest tasks. Estimates vary, but experts suggest that more than 5 million Americans may have Alzheimer’s. With staggering numbers like these, more and more of us will become caregivers in our lifetimes. Caring for a person with Alzheimer’s disease can have a high physical and emotional cost. The demands of day-to-day care, changes in family roles, and decisions about placement in a care facility can be difficult, if not crippling to the family. Here’s where I come in.  I am ‘the family’.  I’m an only child.  I must help my mom get through her last days.  I have found that it is exhausting, emotional, and stressful and I’ve only just begun this journey. It is imperative that I put aside some activities, even those I enjoy, especially if they are of the ‘deadline’ type as these activities now create stress for me, and my life is already too full of stress.  My only option is to cut out what I can.
Becoming well-informed about the disease is one important strategy, which is why I attended an Alzheimer’s Support Group meeting that was given in my community by the Southeast Florida Chapter of the Alzheimer’s Association.  The first meeting was a PowerPoint discussion focusing on the topic of how to tell the difference between dementia and memory loss due to normal aging, something a lot of us worry about.  Something I worry about.  The speaker highlighted the ten warning signs of the disease, and answered questions from the group.  I saw my mom in all of those ten signs.  She’s at a stage 5 of 7, 7 being bed ridden and close to death. Informative, calm and reassuring, this lady set the stage for what is to be my new life caring for my mother until I am no longer able to. I have no delusions about how much I can handle.  There will come a time when I have to move mom to a facility. I know that.  I accept it.  And when that time comes I will do it and know it is best for both of us and that I did the best I could. 


But currently, mom lives with me here in Florida in my condo.  She has to.  My days are filled with answering the same questions over and over. And I do it with a smile. My goal is to make her laugh every day, give her food she loves to eat, and make her feel comfortable and safe.  I’ll give you an example of how my days go.  Mom fears the overhead ceiling fans.  She thinks one of the blades will come loose and chop her head off.  She really believes that.  You can’t reason with her, because she has lost the ability to reason.  She can’t put two and two together because this disease has robbed her of that.  When I explain the stability of the blades, show her the four screws holding each one in, she’s fine… for a day to two.  Then I see her worried face, watching the fan.  So I disabled all the ceiling fans.  I don’t want her to worry or have fears.  We now use floor box fans and she’s fine.  She has forgotten that you flush the toilet after use.  So I check once in a while and flush.  She always says she’s not hungry. I accepted that for a little bit, but now I just put the food in front of her and she eats.  She doesn’t really know if she’s hungry or not.  She can’t tell.  Each week there’s something new for us to figure out. It’s going to be a long journey.  The doctors can’t tell me how long she’s got.  It could be two years.  It could be ten.
I thank you for understanding that I must concentrate on this most complicated, emotional and sometimes overwhelming task of my life and give up some of the things that used to be fun but are now too time consuming.
I wish all of you great success in your writing endeavors.  I hope to see your names on best seller lists and awards lists and by-lines in WW.  Most of all, I send you all my love and my wish that you never have to undertake my journey.
Jody


54 comments:

Bernadette said...

I'm very sorry to hear about your Mum. You have been very wise and brave in your actions so far and seem to be aware of your own limits and what will have to happen when you reach them. My dad had the same illness and it is terrible indeed. But the people we love are still in there.

Don't forget that it's not just your mum who needs looking after and make sure you take care of yourself too.

With very best wishes xxx

Bettye Griffin said...

I'm so sorry, Jody. My own mom is here several times a year. She's 97 and wheelchair bound since a fall the day after her 96th birthday (although she can walk short distances with a walker). She does not have Alzheimer's, but she is hard of hearing and quite forgetful, constantly asking the same questions. May God bless you AND your mother and keep you strong. You are doing a fabulous job in a difficult situation. Sending cyberhugs.

Tracie Rae said...

Jody,

I work in a nursing home and see what you have described on a regular basis. I can't imagine the heartache of living through it with someone you love.

Please know my prayers are with both of you.

Tracie Rae

Tamara said...

We often quip when forgetting something, "Early Alzheimer's, you know," with little thought to what that actually entails when it happens. Your experience reminds us that it's no joke. I hope there is enough joy and fun in your life to lighten this undertaking somewhat; hopefully knowing the good that you are doing your mom comforts you. Meanwhile, I am going to miss your witty, delightfully sarcastic, and informational critiques of WW's mystery stories.

Jody E. Lebel said...

Bernadette, Thank you. I am always surprised at how many people I know have Alzheimer in the family. The numbers are staggering. Let's pray for a cure because our generation is next.

Jody E. Lebel said...

Bettye, Thanks. Wow, 97! She gets to be a little forgetful. Heck, I rush into a room to get 'something' then stop in the middle of the room wondering what I'm in here for and your mom's got 30+ years on me. :)

Jody E. Lebel said...

Tracie Rae, thanks. I know you have a story coming up and I'm sorry I won't be slicing and dicing it. I KNOW you look forward to the bloodbath... lol. Keep on writing. You're my hero with WW.

Jody E. Lebel said...

@ Tamara. Thanks. I do have a 6-year-old granddaughter that brightens my life. I will cope with this, help my mom live well and easy and have fun for whatever days she has left, and then I'll rebound. Family comes first, we all know that. It's just my turn to step up to the plate.

Elizabeth said...

I'm so sorry about your mom, Jody. With a daughter like you, I'm sure she'll have fun & live well. Is your granddaughter close by?

Jody E. Lebel said...

Elizabeth. My granddaughter, Kayla, lives 42 miles from me. A close jump on the Turnpike. We also Skype and talk on the phone. She's a doll. I'll post her picture (I'm such a grandma, right?)

Mary Jo said...

Jody, I am so sorry you and your mother are in this situation. Daddy had dementia (it says "Alzheimer's" on his death certificate), and the doctor was amazed that Mother was able to keep him at home. He said so many people warehouse the patient.

Nevertheless, caring for someone with failing mental health is a 24/7 job and you should not do it alone. Try to find someone who can help with her care in your home. My brother found a great girl, Paulette, who came during the day, and that made a big difference.

Life goes on. Don't lose heart.

Elizabeth said...

Little Kayla is adorable! And your mom looks happy working on a puzzle in the sunshine. Do take some time to pamper yourself in the middle of all this. As Mary Jo says, try to get someone to come in & help you. Best of luck to all.

Jody E. Lebel said...

Mary Jo and Elizabeth. I work at home. There are times when mom is doing her puzzle or taking a nap and I can get work done. She also likes to read... joke books. I guess the short funny paragraphs are things she can handle. Sometimes she'll read me one. Of course it's the same one she read me yesterday. Funny but not. And she goes to bed early and that gives me a few hours at night to work also. But I know our current schedule will change and things will deteriorate. There is a support group nearby that has information on respite for me. I'll be sure to use every drop of help available when I need it. I've also put her on a list for funding to pay me as a caregiver when she gets worse in case I can't work. Hopefully that will kick in when I need it. One day at a time. That's my new mantra.

Chris said...

Jody, I just wanted to add my two cents to the heartfelt messages of sympathy above. What shines through in your account is the love, patience, understanding, and sheer gutsy determination you have to do what's right. I'm going to miss your column and all the conversations I've enjoyed over the past year or two and if it's okay with you, I will drop you the occasional email, just to keep in touch. You are a strong person, no question, but don't think you can carry the whole load on your shoulders. Be kind to yourself too. Take help where you can find it.

Thinking of you. That sense of humour of yours will really be coming into its own right now.

Jody E. Lebel said...

Chris, thanks. We have had some fun conversations, haven't we? I'll leave this blog up and running. No telling when I'll be back and 'how' I'll be back, but you (or anyone else) can always leave me a message here or through my e-mail ladyrprter at aol dot com. I'd love to hear from you. You're right, my sense of humor will get me through. Mom and I laugh a lot. I get my funny side from her. There are dark days ahead, but I'll get through it. I promised her and myself.
PS I've volunteered to be in some clinical studies for Alzheimer. Since it's in my family, maybe I can aid in unlocking the key to understanding this awful disease.

Joyce Ackley said...

Jody, I am so sorry to hear about your Mom. I know it must be very difficult for you, but you've stepped to the plate and you are doing your best to make her comfortable and happy. I hope as time goes on you will be able to find and utilize resources that will make the days easier for both of you. You are in my thoughts and prayers.

Jody E. Lebel said...

Joyce, thanks. I'll miss everyone. ):

Mary Ann said...

Jody, I haven't checked in here for awhile. My father-in-law passed away a few weeks ago and he had severe dementia on top of cancer. He was in his 80's and had lived a good life, and spent just the last month or so in an assisted-living facility that turned in hospice care. I know how hard it is to take care of someone with those types of issues. When you talk about the repeated stories, I completely understand. Seek help when you need to and keep your sense of humor about it all. I hope you find time for yourself when you need it. Our thoughts are all with you.

Jody E. Lebel said...

Mary Ann

Sorry about your loss. Me and mom... we're a day by day adventure. This week? She's refusing to take a bath. Just says simply "I don't need one." When I tell her, yes, she does, she gets angry. So... know what I did? I put her in her bathing suit and we went swimming. After that in the locker room, I got her hair done. Looks like I'll be swimming weekly. Oh well, it's good exercise. And when she refuses to go swimming? Don't know yet. We're a work in progress here.

Chris said...

A little bit of lateral thinking and you turned a difficult situation into a fun one. Good on you, Jody. That's the way to do it.

Jody E. Lebel said...

Now if I could only get her to stop watering my plants 2, 3, 4 times a day. Even the plastic ones.

Chris said...

at least the plastic ones won't die from over-watering. Rot, maybe...

ginnyswart.com said...

Hi Jody, have just picked up on this blog after being away fro a few weeks... Im so sorry to hear about your Mom. she's lucky to have a daughter like you. There'll be hard times ahead for you - Im glad to see you recognise that you probably can't manage on your own forever. Take care of yourself too...and come back when you can, we will miss your great comments...Cheers Ginny

Jody E. Lebel said...

Ginny... thanks for the shout out. We all take turns in life handling something difficult. It's my turn. I'm going to journal as I go along with my mom. Maybe my muse will let me weave a lovely story of a mother/daughter on a difficult journey... but I hate to write sad stories. I much prefer comedy or snark. I guess my job will be to make readers cry and laugh.

It'll be a BIG hit.

I'll get on the New York Times best seller list.

I'll become famous.

I'll donate the large and overwhelming royalties to Alzheimer Association.

Maybe I'm getting ahead of myself. I haven't actually written a page yet. So far I don't find anything very funny.

Tracie Rae said...

Hi, Jody,

Just wanted to let you know I'm thinking of you and your mom. Hope you find some joy among all the chaos.

Blessings,

Tracie Rae

Tamara said...

Injecting humor into a serious or grim situation is a talent, and you are talented. I could see you writing about this experience and indeed having a bestseller.

Jody E. Lebel said...

@Tracie Rae... thanks, gurl. :)

Jody E. Lebel said...

@ Tamara, I'm going to be tested on Monday to see if Alzheimer is in MY future. It's a little unnerving. I want to know. I don't want to know. It could be a twist in the story....

Mary Jo said...

Is there a definitive test for this disease? It may be they are just trying different methods to look for it.

Jody E. Lebel said...

@ Mary Jo. As I understand it there are certain signs that a person has Alzheimer as opposed to some other form of dementia. For example my mother looks at a clock and doesn't know that it is or what it's for. When you tell her it's eight o'clock, that means nothing to her. This is an Alzheimer thing, not a senile thing.

Mom and I went to the Alzheimer Research Clinic to sign up for trials. They gave us each, separately, a series of tests; memory, ability to draw, ability to write a full sentence, some math, recognizing items, etc. An excellent score is 50. A person with a 50 has no signs of Alzheimer's -- no known signs. Mom got an 11. She's a bit low even for the trials. They are going to try to work with her a bit and get her scores up so she can qualify for the trials. I scored a 59. They kicked me out.

There are some MRIs that can see the tangles and problems in the brain. Mom has already had those tests. At my score, I was not offered that. They do have some 'prevention trials' coming up next year that I can inquire about. The funding is still being approved for those at this clinic. This facility does not charge you nor your insurance for any medications, testing, or brain scans you might get. It is all funded by the big drug companies that are vying to be the first to release an Alzheimer cure, preventative, or aid in slowing down the disease.

So that's what's been going on here. This week mom gave away all her books to the cleaning lady. (The condo where I live has a lady that comes around and sweeps the outside porches, dusts the outside windows for spider webs, that sort of thing-- this is not my personal cleaning lady.) These were books she loves to read and re-read. We had to go buy all new copies of all her old books.

Chris said...

Very interesting to hear about these tests, Jody. Your above average score is surely an indication that you are safe for a long, long while. A relief, I'm sure.

The cleaning lady would have understood, wouldn't she, if you'd explained your mother's situation and asked for the books to be returned? It would have to be a very hard hearted person that refused to give them back. It sounds like you need eyes in the back of your head right now.

Tracie Rae said...

Jody,

I am so happy about your score. I'm still praying for your mom, though.

Tracie Rae

Jody E. Lebel said...

@ Tracie Rae... thanks. I was a glad of the score. Very glad.

And I was disappointed I couldn't participate in some way with the work Dr. Watson is doing to try and find a cure. But I'll get over it... lol.

Jody E. Lebel said...

@ Chris

My mom loves to sit out on the front porch now, too, as well as the enclosed back porch. This cleaning lady comes around every week or so and I don't always see her. But my neighbor, who is a wonderful and kind person, said she knows her and will talk to her about not taking any more books from mom. I'm sure the cleaning lady has no clue mom is ill. Mom presents well and is very pleasant... lucky for me. It also makes her feel good to give something to someone, so it's a Catch 22 for me. From what I hear from my neighbor the books have been passed on to various people. I'm not going to try to get them back. By the way these are joke books. Mom's attention span is short but she enjoys a laugh. I can hear her giggling out there. They're like Readers Digest Funniest Jokes kind of thing. I've replaced them.. lets see if we can hold on to this batch.

Jodi P said...

Jody, I wanted to thank you for putting together this blog. I work with seniors who have dementia and we have our mystery club once a month. Together, we solve the mysteries that you post here. It is a wonderful brain building exercise and my folks love it. Please know that your efforts have been greatly appreciated.

Sincerely,
Jodi in Idaho

Jody E. Lebel said...

Jodi, thanks for dropping by. I had fun doing this blog and maybe I'll get back to it someday. It's nice to hear it's also useful... :)

Tracie Rae said...

Hi, Jody,

Just wanted to let you know that I'm thinking about you during this holiday season. Hope you still have some time for writing -- I want to see your name in WW sometime next year!

All the best,

Tracie

Jody E. Lebel said...

Thanks Tracie Rae,

I was going to try to work on an old novel that I have in the drawer, where I have 5 good chapters already done, for NANOWRIMO but it doesn't seem to be happening. I'm just glad to get in some day-job work and still care for mom.

She's now refusing to change her clothes. It took me a couple of days of frustration to figure out that all I had to do was take her old clothes when she was asleep and put new ones in their place and when she gets up she's none the wiser. Little wins.

We're going to my daughter's for the holidays. Mom loves to see 'that little girl, meaning my granddaughter, even though she doesn't know who she is.

I don't think WW is in my immediate future...but I KNOW I'll be seeing your name in there next year. :)

Mary Jo said...

Jody, it seems you check back here once in a while. Maybe you have found someone to help with your mom by now. I miss all the reviews you posted and hope you can get back to the blog now and then. There is so much going on the world right now, it is hard to know where we are headed. I hope you are holding up all right and can enjoy the holidays. Thinking of you and wishing for the best.

Jody E. Lebel said...

Mary Jo, thanks for stopping by to say hi. I'll get you some coffee... well, it'll have to be cyber coffee. No, I'm still winging it with my mother. We've shuffled into sort of a routine now, and it's working at the moment. I let my subscription run out on WW, so I'm quite out of the loop. Whenever someone, you, posts on it, I get an email telling me I have a comment and that brings me back to the blog. I also miss it. I just saw the list of all the countries that have read my postings and it made me smile. I'll get back to it one day.

Wishing you and yours a nice holiday. Mom and I are spending it with my daughter and granddaughter, who wants to make Oreo turkeys for the table. It should go well, and I won't make mom stay overlong because she gets antsy. I don't usually put up my Christmas tree until after Thanksgiving, but mom enjoys seeing the neighbor's tree through the window and she calls me out on the porch to look at it several times a day. So I put up ours for her this week. She actually clapped her hands when we lit it. Score. :)

Jody E. Lebel said...

For my regulars...

Check this out. http://www.freedomwithwriting.com/freedom/uncategorized/51-magazines-that-pay-writers-250/

Mary Jo said...

I checked this listing, Jody, and it is for non-fiction writing. The site states that they have deliberately left out creative writing. Why? Probably because there really is none, at least in the popular genre.

Jody E. Lebel said...

@ Mary Jo. Why? Probably because the person who made up the list is a non-fiction writer. Even tho - I sometimes find I can tweak a story I already have to make it fit somewhere in the non-fiction world.

Mary Jo said...

I don't know how that would work. I do not do well with nonfiction because I tend to embellish the facts.

Jody E. Lebel said...

@ Mary Jo. Sometimes you have to fudge it a bit. Let's say they need a story about a shelter dog and they want personal essays. Make up a lovely, touching,story, put yourself in it, and make it your story. There's no story police going around checking facts. Sort of like the Trues... they used to say it had to be a true story, or at least sound like a true story. They don't really care if it truly happened to you... they just want a good story. So, got a story about flowers? Find a gardening magazine and make it fit what they're looking for. Got a story about angels? Find a spiritual mag and work it in. Got a story about traveling? Some of the airline magazines might just love you.

Julia said...

Dear Jody,

Just got back to "work," reading your blog, trying to get into writing again. Was so sorry to learn of your mother's illness. My long absence from reading/writing/living (sort of) was due to the death of my beloved nephew, who died of tongue cancer at the age of 48, leaving behind 5 children in addition to his wife, broken hearted parents, cousins, aunts and uncles. He was a one in a million kind of guy, charming, vibrant, funny, and alive right up till the end. He never stopped fightingto live, but, once he knew he was in stage four and there was nothing more to be done, he chose to die at home among the people he loved, rather than in the hospital. It's been a hard time for our family, but the decline and death of a loved one is always hard to bear. You are doing great work keeping your mom happy with her books and her puzzles and the sunshine. She raised you well. You are a wonderful daughter and I am proud to "know" you, even in this little way.

Jody E. Lebel said...

@ Julia,

Thanks so much for the lovely comment. It brought tears to my eyes. Really. Mom is holding her own at the moment. I do go to caregiver's groups and pick up little ways to cope with the 'situations'.

I'm sorry to hear about your loss. I didn't even know you could get tongue cancer. Good grief. How awful. And so damn young.

I hope you're writing again. If you've been on the WW group you know that Johnene retired and Patricia Gaddis is now fiction editor, and we have a new submission technique.

Sending my best.

Kate Willoughby said...

Jody, I just now read your post and I'm so sorry that you're having to go through this. I'm heartbroken for you. My father suffered a major stroke about a year ago. He lost the use of his right side and the power of speech. While he's in a nursing home, it's still difficult. I do have a sister and two brothers, so the burden is shared but I feel for you since you're the only person your mom has. Stay strong and know that you are a great daughter.

Jody E. Lebel said...

Thanks for dropping me a line, Kate. It's not easy. I jumped in because I had to but it's not easy. Life has handed me a lemon for sure.

It's funny but after I got the contract from WW for my mystery story I was thinking, "well, at least I don't have to worry about getting sh*t from people on my blog about my own story". lol

Tamara said...

Hi Jody, I just read this week's mystery and noticed your name at the end. Maybe that provided you with a much-needed lift. Cute story, too.

Jody E. Lebel said...

Thanks, Tamara. I've had a bit of luck this year with WW. Take care.
Jody

Tamara said...

What a nice surprise to see your name again as the chosen story this week. Good clue, too.

Jody E. Lebel said...

Thanks, Tamara. I also have a Halloween romance coming up in issue #44, even tho we are now competing with Harlequin writers for that spot. Nice to hear from someone from the 'old group'. How's your writing coming along?

Tamara said...

I'm highly disappointed that I've had no success with WW this year. Beginning last October, I sent two new stories and several that Patty Gaddis had previously approved and Johnene didn't care for, thinking Patty might have liked them once.....well no luck on any of them. I have completed a 109-page romance story, though, and submitted it to a publication I found online. Glad to hear about yet another success you have coming up.