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

 

[subscribe2]

A Gain For A Loss

OK, at the end of yesterdays blog post, I mentioned lifting up a bit. I feel like adding a little sugar to the spice.

When I was first fitted for my AFO, It was so nice to be able to walk with a barely detectable limp. This came with a price I was very willing to pay, actually already paying, my shoe options were limited.

Anyone out there just getting an AFO, I did learn that New Balance and Sketchers tennis shoes worked best for me. The shoe needs to be wide enough for the brace, especially at toes and deep enough at the heel. I don't know if these shoes will be best for everyone. I had a solid fixed AFO. I where a regular 7 shoe size and I have a narrow heel. To the right is a picture of my AFO in my Sketchers.

Now I figured I would be getting my drop foot all fixed up, and this was all temporary. It turned out to be the first of three adaptions to keep me walking. (to follow was adding a cane, then rollator.) so I was pretty disappointed to learn this was permanent. Then, what about my beloved shoes? My choices became steel toed construction boots or tennis shoes that took a lot of trying on to find at first. I'll take the tennis shoe, thank you.

When I recently lost the ability to walk I remembered reading online a while back that the best thing about being in the chair is you can wear  the shoes want. How exciting! I want  to go try on shoes now. I will be hitting up thrift stores on Saturdays with my Mom, and I've been looking at amazing online deals for fun.

I've always been a thrifty shopper, but I do love to shop. If I'm not at a thrift shop, I'm a TJ maxx, Marshalls person usually. I love to shop online too. Now that I can't just hop in the car and go to these place I have a lot of fun shopping online. Budget is real tight right now, so there are no big shopping sprees, but I've always enjoyed real window shopping too. It's just as fun on line to me.

I still have pretty good use of my hands overall, especially my left, but they've gone enough to make putting my contacts in pretty difficult. It's been so long since I tried, I'm not positive I still can. It would definitely be a time consuming chore.

My youngest son, Tyler, was due for glasses not long before my diagnosis. He bought some from an online eyeglasses store, Warby Parker, while visiting home. It's pretty neat because you can look through their collection and chose up to 5 pair you like and they'll ship you the frames with Plano lenses to keep up to five days and then return in the box they send. Free shipping both ways. He chose the Langstons. I really needed a pair of glasses so I bought the women's version of his Langstons. These glasses were just under $100.00. The least expensive pair of glasses I had ever bought. The only downfall is for us aging people needing a little help reading is they don't offer progressive lenses. Now $100.00 seems expensive.

My newest guilty pleasure is buying glasses online at goggles4u.com, they usually have great deals, especially on their home brands. I have bought glasses from there for about $10.00. That includes shipping, and I have a strong prescription. That doesn't include progressives, but they do offer them. I love spending the $10.00 and trying all different styles and colors. I tend to like them on the wide side for my face. There are several online glasses stores that have $6.95 and up. zennioptical.com is another one worthy of checking out. Just be sure to have your pupillary distance correct. If you already know your prescription and don't need an eye exam, Walmart optical is good about measuring it for you on the spot if not busy. That was our experience.

Above is a small collection of my inexpensive glasses.

 

That's 3 ways you can turn a loss into something new. They're fun even if you didn't lose anything.

1.Newly in a wheelchair and no longer need an AFO? Now you can wear any shoes you like, plus they stay clean and won't get worn from walking. Find a nice buy, sell and trade shoe store and you'll get top dollar for your shoes when you take them back in great shape!

2. Have you lost the ability to drive but love to go shopping, or just browse? Get on that computer and shop or browse your heart away!

3. Are you a contact lens wearer and need to change to glasses?  No matter your budget, shop away online!

I hope any of this information is helpful to someone.

Until next time, take care,

April

 

[subscribe2]