Need "Planning Ahead" Advice

[MaxEidswick]

>Our landlady refused to allow modifications to her house, So I took a sledgehammer and widened our doorways anyway!

like your style, Mike!

 

[Atsugi]

Adapt. Improvise, Overcome!

--Clint Eastwood in Heartbreak Ridge

 

[Santa joe]

Mike have you heard the old saying - better to ask forgiveness than permission. You sound like a determined man. I like that.

I had contractors over here at one point for bathroom renovations. For some reason Joe was not for it. As it turns out, he became bedridden and vented and that would not have worked for us. However, being prepared is the key. I bought so much equipment that he never used but like Tillie, was here if he needed it. Be prepared.

For all my CALS out there - I also encourage you to do pre-planning on funeral arrangements. That's something none of us want to face but with ALS is a reality. I am so glad that was handled. I didn't want our sons to deal with that and I knew I would be in no shape to make such important decisions. I was exactly right. The only thing I had to handle was the flowers on his casket. I am giving my children a gift and taking care of mine next week.

Debbie

 

[cheerleader]

Mike, what ups and downs to be on this forum! Crying one minute and laughing the next! Thank you for your humor- your determined spirit obviously served you well during your ordeal. And thanks for your honesty In your sharing. Not sure I'm up to sledgehammering, but the philosophy is great! If only there was a crystal ball to predict- would know better what to do! Glad our van will come next week ( and then a 4 week wait for modifications.). Appreciate your words that it was worth it, as we have debated for weeks whether he would even use it. Decided he wouldn't have a choice if we didn't have one so----want as many options as possible for him! Thanks again- talking to you folks who have walked the walk is such a help. You are truly appreciated for the laughter and the always solid advice! Donna

 

[cheerleader]

Thanks, Debbie. Good advice. It is on the ever growing "to do" list!
Donna

 

[SMP51]

I will never regret the $$ spent on the bathroom, we made it a wet room. I can spray down the entire room if need be.
and pocket doors are wonderful! they disappear out of your way.

the van is great. can not do with out it.

the hoyer lift, power chair., shower buddy chair, and a good recliner that lays all the way to a prone position and has heat and massage.

ramps, getting in and out of the house is important. we went through a series of making the one step into the house shallower and shallower till we/he gave in and let my brothers and dad ramp it.

so far these are the life changing biggies. .... oh and our sleep number bed!

 

[affected]

It was really odd. I had chosen the funeral home months before, but not made any real plans with them.

In his last weeks we kept kind of missing getting an appointment set but finally made a date to meet for a coffee in town on Tuesday after Easter ...

I emailed him Easter Saturday and said I won't be going out on Tuesday, he is actively dying, so he said he would come here.

Of course Chris passed at 3am on the Tuesday, so around 6.30 am I emailed him again and let him know that it was a pick up too.

So simple, he brought the paperwork (I did have all the plans in my head at least), we signed it all. He then took Chris body to the GP for death certificate on his way to the funeral home, and it was all very simple.

Would NOT have been so simple if I had to start contacting funeral homes that morning to ask for quotes and procedures and for someone to come out and have no idea what I was doing.

So do make those plans in advance too. Once again, try to avoid crisis by being a step ahead.

 

[cheerleader]

What helpful advice from all of you. Sure many of us reading this thread will use it to guide us! Thanks.

 

[Santa joe]

I also wanted to add something. CALS make a folder titled important papers. Have your pals birth certificate, marriage license (if applicable) and will. Every state is different but you will have everything in one place if needed. Hope that helps.

Debbie

 

[MaxEidswick]

>I will never regret the $$ spent on the bathroom, we made it a wet room. I can spray down the entire room if need be.

Meg do you have any pics?

 

[Barbie]

you would think that after all these years facing ALS me and my husband would have had it all taken care of...NOT! It is soooo hard to talk about.

We have the wills, insurance, surrogate forms POA. but the DNR...not filled out or signed. can't sign it now anyway. funeral plans...nope. I asked him once what he wanted and he said that he sincerely didn't care--it would be for me and the kids and to do what made me feel good. I feel awkward even bringing the DNR and the funeral up...

But I do have the funeral idea in my head--since we are not religious I would like a wake at the house and I would love to have people speak about him. going to have our family videos playing on the TV and lots of food and drink and I hope laughter with the tears. I want everyone to write a wish or prayer or memory on a small note. he will be cremated (me too) and I want to bury 1/2 in his family plot, and take the other 1/2 to his childhood home on the coast of Maine and release it at a favorite spot of ours. then I want to put all the notes that family and friends gave us, and send them out in a floating lantern. That to me will be his private funeral--me and the kids saying our goodbyes to him in a place we all loved, that he introduced us to. Oh, I am getting teary-eyed thinking about it!

Funny--I have never told him any of this!

 

[Atsugi]

Those are beautiful plans. I'm very heavy-hearted, now, having read them. I think there's really no need to discuss those plans with your hubbie; I suspect it would be difficult for him to keep a dry eye.

The DNR and all other papers can be signed by proxy. I recommend Julie Kronhaus, an elder law attorney in Casselberry near Winter Park. She did a house call for us and instantly prepared all estate and power of attorney papers just in time.

 

[Santa joe]

Barbie, that sounds so special and beautiful. Everything you talked about was so hard to discuss. In fact I snuck around. One day, early on, I just came out and asked him what his wishes were. Pretty much what I had planned. Even though he was vented, he wanted DNR papers. That was done at the hospital on one of his trips there. I taped that on his oxygen tank. When I called 911 when I knew he was passing away, that is the first thing I told the ENT when they arrived. My pals who had gone thru so much pain, was NOT going to be revived. Those were his wishes.

Debbie

 

[cheerleader]

Debbie, what a wise decision about taping his signed DNR to the oxygen tank. It is my understanding that something like a DNR bracelet or DNR dog tags will not be honored. You have to produce signed papers, so my husband wants us to carry these wherever we go. Don't know if this varies depending on where you live, but my friend had this experience this summer and was told the paramedics must resuscitate unless papers are produced. Maybe some of you have had experience with this and can share it. Again, the information shared here is invaluable!
Barbie, your plans will surely honor your husband! What a beautiful tribute!
Donna

 

[Atsugi]

In Florida, the DNR papers are required to be on yellow paper, and suggested to attach to your refrigerator door. I carried the DNR in my pocket wherever we went, as we went to the emergency room several times for breathing issues.

One time, we were at the movies when Krissy said she had a hard time breathing. I wheeled her into the parking lot, and judged that we could get her to the hospital faster than an ambulance could arrive so we drove. On entering the ER, I went straight to the triage nurse, interrupted her work with another patient, and said firmly, "We have a terminally-ill, paralyzed patient with extreme difficulty breathing. We need to go ahead of the line." We were seen immediately.

The problem with driving yourself to the ER is that you're low priority. Arrivals by ambulances always get in first.

But one time, I was in the ambulance with my PALS (we were inseparable) and the ambulance got lost. I had to navigate his way out of my neighborhood to the hospital!