Death with Dignity… My Thoughts

To my loved ones reading this, I want to say this is not a reflection of my intentions at this time.

It is something I believe most people with a terminal illness like ALS have had cross their mind. At this time a person diagnosed with ALS is aware they are dying, and it will likely be an uncomfortable slow death. I know there are a lot of patients who have chosen invasive ventilation and are happy, comfortable and living a life with quality and purpose. I’m thankful this life extending option is available.

There is hospice. Another thing I’m thankful for. I’ve experienced the care they provide and I commend all nurses who take on this responsibility. They can’t by law intentionally speed your death. They do everything they can to make death as comfortable as possible for the dying while educating and comforting the family. Even with the best efforts it is no guarantee you will have a comfortable death, or that they can predict the exact time or even day you will die.

You can put a do not resuscitate-DNR order in your Advanced Directive or Living Will, but if you’re at home and an ambulance is called because of respiratory crisis, unless they are shown the document, you will likely find yourself on an invasive ventilator no matter how clear you’ve made it to family and your doctor. It’s possible you will be even if they see the document. EMTs are trained to save lives and they do it well. I also commend them for all they do; however if you’re a terminally ill patient suddenly stuck with this life support that you made clear you didn’t want, you’ll surely not comfortable. You can still choose to have it removed, but when and how now has to be decided. Something you may have really wanted to avoid is your chosen legal agent being forced to make this decision. Choosing who can make decisions on your behalf early on is highly recommended so that your wishes are met. This doesn’t mean the decision is going to be easy for them if it comes to that.

I’ve given examples of what can go wrong even if you do all the right things to make your wishes clear, it’s no guarantee. You can still end up vented whether you want it or not.

Some benefits of assisted death: First is that it’s in your control. You know when your quality of life has reached the point of outweighing the benefits of living for you and know you will die painlessly within a few minutes. You can choose to have loved ones with you or not. It also gives your loved ones the ability to choose to be there or not. If it is decided others are to be present, you can choose a date and this gives them time to prepare emotionally and take time off work in advance instead of always knowing the call can come at any time.

I’m aware that one of the biggest obstacles for the terminally ill, even if they’re in a place that allows death with dignity is Religion, even if it’s not the belief of the person dying. Not wanting to go against a loved one’s belief is a huge deciding factor. A dying person usually doesn’t want to do something that leaves their loved ones in emotional despair. So they suffer on.

Many consider death something that should be left in their God’s hands. To me this makes no sense. If you would die without mechanical ventilation, isn’t that overriding God? I just don’t see the logic in it being miraculous to keep a life going that God obviously intended to end, but it’s not ok at all to end the suffering of a life God also obviously intends to end.  There are premature babies born every day with no chance of survival even with advanced technological care. That indicates this is God’s plan, his will, to end this life. When very aggressive methods are used to sustain this life, I never hear of anyone condemning the people involved. They are given hero status and it’s considered a miracle.

How can you rejoice in going against God’s will by saving a life God obviously is ending, but yet you damn a person to hell for deciding to end their life in a humane way when it’s a life that God is also obviously ending? I see no logic in that.

I have important decisions to make. One of the biggest factors is how my family is affected. I believe ultimately I will be supported in whatever I feel is best for me.

I think it’s wonderful we have and use the advanced technology to save a person that will otherwise die.

I also think it’s wonderful to have a choice to end a slow suffering death in a very simple, affordable and comfortable way. I emphasize the word choice.

These are thoughts I’m dealing with amongst many others, and that’s what this blog is for me. It’s an outlet for my thoughts and feelings. I’m thankful to not be progressing super fast, I am progressing though and I do have important choices to make.

Until next time, take care,

April

 

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My Family Knows Now

HEADS UP -  This post is some info about my family. Not much ALS related but I hope you still read on.

I did it!   I told my family about my blog starting with my parents in person.

My Mother gave me her 100% approval and thinks it's great for me. What a relief. She did get in touch with me after going home to read everything to tell me God must always be capitalized. I will Mom. Thanks, I love you.

Dad approved 100% after he read the homepage aloud for everyone here just as I would have myself. Thanks, I love you

Who doesn't want approval from their big sister? She read and got back with me right away and told me she is proud and thinks it's a great blog, and other things great to hear from her. Thanks sis, I love you

All of my children told me they love it, and I have their 100% approval. So much relief. I have a wonderful family and I'm sure most of you may find it strange I'm just now telling them, and especially that it's scary for me. Even if we handle things in a way that is strange to you, we are very close.

I've done a lot of texting and starting to cramp up, not to mention the sun will be rising soon. I'm exhausted, so I'd like to introduce my immediate family now.

When Tony and I first met we both came with two kids and both inherited two more. We both had a son and daughter. While keeping it simple I want to introduce them. I'll go from oldest to youngest.

The oldest is Steven at 28 years old

Next is Tasha at 27 years old

We have Tyler at 23 years old

Last but not least is Amanda at 22 years old

Getting into Grand-kids is so simple yet tricky.

Ya know, there just aren't many "traditional" families anymore. It can get complicated. Half this, step that, uncle younger than nephew and all that stuff. Let's not pretend you all have no divorces, steps, halves and the such. If your family is perfect, you're an oddity. It's OK, Everyone is statistically odd in some way. And there are a lot worse things to be odd about than a long line of intact family.  Either way, Come on now, stop pretending. Your family is only picture perfect on the printed photo, Right? It doesn't mean there is no healthy family love going around.

OK, shooting for simple...

Tasha and husband, Billy, have 3 young boys at home. Jesse, Ethan and Uriah. Two grown kids that have left home, Nathan and Amber. Tasha was a great Mother to teens at a young age. While loving them both, she has a very strong bond with inherited daughter.

Amanda and Jason have our newest Grandson at 9 months old, Brayden, along with an older inherited Grandson and inherited son Amanda loves like her own, Jamieson.

Our boys have kept away from the parenting life so far.

It's birthday time for Tasha's young boys all born close in time of year. Time to hit up Toys R us!

They will be added to my family pictures.

This is my website/blog about my progression with ALS. I will throw snippets of family info sometimes. It helps you better understand the person behind this case of ALS. Respecting my family's privacy is of utmost importance to me. I'm the one opening up online. It's not recommended in general but, knowing my fate, I'm not so concerned about what that next employer might read about me in a few years.

This post is for those interested in the person behind this ALS case.

Most Importantly, this is for my family. I love you all!

Until next time, take care,

April

 

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Deciding when to tell... a rambling post

I feel like I'm living a double life here and will be outed at any moment. I've always been a private person. My family is used to it although sometimes they've accused me of bordering paranoia. So many people have begged me to join facebook. I hate facebook. Tony does have an account so if anything important comes up, he usually tells me. The way I've shunned all social networks from their beginning, they will surely be shocked to hear I'm putting my life out there.

I mean I plan to go all the way. ALS gave me no choice. So tomorrow is Saturday. Since my diagnosis, Saturday is time with my Mom. I like to call it Saturdays with April, but nobody else seems to find it the least bit funny.  It started out as our movie day, I made a review page that I keep in a 3 ring binder, and we wright our little reviews, more so about our experience. The Goodwill is part of our day too. I love the Goodwill. Mom would get a cart and bring it to me to use as my rollator. It's been a blast. A few times when I haven't felt well we rented from redbox and watched a movie from my bed. I still can't believe I watched Magic Mike with my Mother. I can hardly stand watching a kissing scene with her. I do live in the Bible Belt after all and was raised strict Baptist. Maybe more on that another time.

Since I've lost the ability to walk and don't have a wheelchair van yet, it's been more difficult. It's not impossible. Tony can take me and manual chair to the theater and Mom can push me, and tony pick me up. We haven't yet, but my Mother does knows her way around a wheelchair. She took care of her sister for a long time. She had Freidrich's Ataxia. It's a neuro-muscular disorder. Yes, I've checked. There is absolutely no link to my ALS. She had childhood onset which has a faster progression. I remember my Mother and Grandmother giving her a bath after leaving their full time job for the day. I was probably about 5 and couldn't wait for this time be cause I could ride around the house in the wheelchair. I had so much fun. My God, the irony.  My aunt by this time had little muscle control and typed with her nose what she needed done for the day. She was a beautiful, intelligent woman with her life cut  very short. She died in her mid-forties. My grandmother spent many years getting up to turn her every two hours. She worked a full time job at a hospital and she was the wife of a pastor, which in itself is a full time job. I was about 10 when My grandmother came to terms with the fact she couldn't do it anymore and had to make the most difficult decision to have her daughter placed in a nursing home. Another pastor came over to help break the news to my aunt. I still remember the gut wrenching cries coming from that room. Do not judge my Grandmother for that decision. It really wasn't a choice. There was no home health care in those days, no real support at all, and it was way past the point of being dangerous for her to be home. I know my grandmother never fully recovered from that day though. From the guilt she shouldn't have carried.

My Mother spent every Saturday for the remainder of my aunts life going to the nursing home and making sure she was being treated right, She still gave her a bath every week too. About once a month she took her out shopping for things she had typed with her nose. She got her in and out of a wheelchair alone. she was frail but dead weight. She brought her home and took her back every Thanksgiving and Christmas to be with the family, and many young birthday parties were at the nursing home. There was a nice area outside perfect for it.

Now my Mother is the fulltime caretaker for her other sister disabled by Type 1 diabetes. I don't know how Mom does it. She just says she thinks it's her purpose in life. Now her Daughter is dying? She doesn't deserve any suffering. She is so inspiring, a true saint in my eyes.

I feel like I've totally lost track of my post , but I'm not changing it. I said this is where I'll come and say whatever I'm thinking and this is how I think. One thought leads to another. It's like going to the computer to quickly look up a toothpaste brand or something simple, then two hours later you're watching 'funny cat videos' and thinking, what did I come here for?

Oh yeah, my big secret life story with ALS online. Since my first post I've wondered who in my family may have spotted me, if so probably on twitter when I'm tweeting  slightly out of my mind from insomnia that ambien is starting to lose the battle with too. When I see any of them, I'm looking for clues. Are they saying certain things they would only know if they've been reading? A couple of times it seemed like it.

So I think I'm going to tell my Mother tomorrow. I'm nervous. Not so much because of what I'm doing, but the fact I've used curse words. Remember, I'm from the bible belt and spent several years with my 'by the book' pastor Grandfather.

I just want it out though, I've made up my mind, I"ll be who I am here. I know, no matter what she'll still love me. I'm forty. I can say fuck if I want. I haven't told anybody though. Not even my kids, only Tony. I want it out because I would like to bring them up some and show pictures too. I've always asked people not to post things or pictures about me online so it's only right I give the same respect.

I'm nervous, but I think it will make me feel even more free, and will be a relief when everybody knows. So I'll start with Mom, then rest of the family. I will be set free. Nobody worry, I will never post anything hurtful or private about another person without permission. Only about me, I'm the open book.

I have a request for any old friend or family members that if you do start following my blog, please let me know. I'm just curious. I think I've rambled enough and Tony just served me some delicious food. So I'm off...

Until next time, take care

April

 

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House Cleaning

Hello, I decided to use my energy today to clean up and add a little to the site. Please take a look around and don't forget to help spread the word about thealsexpress.com

I appreciate it.

Until next time, take care

April

 

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