Status
Not open for further replies.

turnip

Member
Joined
Jan 24, 2016
Messages
17
Reason
CALS
Diagnosis
01/2015
Country
US
State
OH
City
OLMSTED FALLS
wow, how awkward to make final arrangements for a spouse. Talk about the last thing I wanted to do in life. He is adamant that his body go to science, ALS research like his mother and grandfather before him. Dr. Pioro at the Cleveland Clinic took charge of his mother and now my husband. These people call for a follow up, and it is surreal. I know they are doing a job, saying what they have to say, but it doesn't make it easier. No, I don't want to know where his brain will go, or his spine. Yes, they will send his ashes back in 4 to 12 weeks. Yes, they will pay all expenses for transport and cremation. I didn't want to have this conversation and it rocked my world. The things we do for love. It is what he wants, but it is not what I saw myself talking about as I aged. Anyone have experience with giving a loved one to science?
 

Atsugi

Legendary member
Forum Supporter
Joined
Jan 11, 2011
Messages
5,200
Reason
Lost a loved one
Diagnosis
12/2010
Country
US
State
FL
City
Orlando
Yes. My Krissy wanted to be donated, so we brought it up during our second opinion at Mayo Jacksonville and got signed up.

On the evening Krissy passed, I made two phone calls: to the funeral home and to the donation hotline. The funeral home sent a hearse to our house and took Krissy away to meet the Mayo people. Her brain and brain stem were donated. A couple days later, we had an open casket ceremony at the church, and had her remains cremated, so they sit beside our fireplace today.

I know it may be weird and emotional, but for me it wasn't. Her passing and ceremonies after were the best possible.
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
10,532
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
Larry was cremated, so a pathologist came over to the crematorium first and snipped his brain and other good bits for research. These were shipped to the National Disease Research Interchange in Philly and then forwarded to two research groups.

While alive, he had given hair, nails and more to the ALS Biorepository pilot and blood to a Marfan gene bank so all part of the same thing, really.

T, the comfort I feel, and you will too, in time, is in knowing that some of what can be learned from his suffering will in fact be realized, rather than dying with him.

Best,
Laurie
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
13,781
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
No mine didn't, but I still had to discuss arrangements with funeral directors and get quotes etc. My husband had FTD and he would have NOTHING to do with his funeral arrangements, and I mean nothing. Even though his first wife had died of cancer and he had been her carer and had been through all this as a carer, he simply opted out. Told me he didn't care what happened after as he would be dead. Wouldn't even tell me what he thought of the funeral home who had looked after Lisa's body, or who they were.

So I had to just flounder about making my own decisions and having those discussions, and then not discuss them with Chris at all.

It all turned out really quite bizarre. I had done all the enquiries and comparing and had decided on who I would go with and had my head and heart settled, but hadn't done the final formal meeting and agreement with the funeral home I chose. I knew I had to, but kept putting it off. Finally I organised a meeting a couple of weeks in advance. We were going to meet in a coffee shop as I couldn't imagine him coming to our home with Chris knowing I was with the funeral director and yet refusing to be part of the conversation.

It was set for the Tuesday after Easter, 2014. On the good friday I knew Chris was actively dying and that I would be going nowhere on the Tuesday, I would not be leaving him with care staff even for an hour or two. So I emailed the funeral director and said he would have to come here.

Chris passed away 2am that Tuesday morning, so I again emailed him and said he needed to come in the hearse. We did all the paperwork, phoned the GP together, and he took Chris's body to the GP for the death certificate and returned the ashes to me.

I know it feels so strange to be doing this organising. But it is better to have things in place. At least I knew who I was going to deal with, and they knew what was going on!

Some months later a local CALS friend had a sudden decline and death with her PALS, months before she thought he would go. She was suddenly phoning me madly asking for funeral director phone number as she had nothing in place!

It was certainly nothing I had imagined in my 50's!
 

Atsugi

Legendary member
Forum Supporter
Joined
Jan 11, 2011
Messages
5,200
Reason
Lost a loved one
Diagnosis
12/2010
Country
US
State
FL
City
Orlando
"It was certainly nothing I had imagined in my 50's!"

Indeed, it was a bit disorienting to be 55 yro and alone like an 80 yro.
But then my attitude improved when I figured I could fit an entire new lifetime, school and career, into the next 30 years.
But this morning I went to breakfast at 6 am downtown. The whole restaurant was filled with 70 yro men, each by himself. I guess the women don't wake up that earlier.
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
13,781
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
Nah Mike, the women wake up heaps earlier and have already done half a days work by the time you are at breaky ;)

Oops, don't mean to hijack this away from the topic! :lol:
 

Vincent

Senior member
Joined
Dec 30, 2013
Messages
992
Reason
PALS
Diagnosis
08/2014
Country
CA
State
ON
City
Barrie
I went out and did my own. Kind of creepy arranging my own funeral. I don't want anything big, closed casket, no embalming, pine box, sort of torn about cremation or burial. I had no idea how hard it is to find a pine coffin in Canada. I look around me and all I see is pine trees. It saved my wife from the pressure of having to do it herself after things wind down for me.
Vincent
 

Ells

Distinguished member
Joined
Oct 26, 2015
Messages
206
Reason
PALS
Diagnosis
03/2007
Country
XYZ
State
MY ACCOUNT
City
PLEASE DELETE
Turnip,

If you don’t mind hearing a PALS’ pov…

I signed up to donate my brain and spinal cord about 1 year after diagnosis simply because it was something proactive & positive I could do. It’s something about which I have strong personal feelings. I discussed it with my husband, my parents and sibling who were all in agreement with my decision. Now my kids are older, I’ve told them too. I just don’t want any issues when I die.

I don’t underestimate how difficult it is for you and it’s not what “normal” couples find themselves discussing. I wish you both all the best.

Ells.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
11,012
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
Thank you and your husband for doing this. It helps it really does. I told Mike when I was at the big MNDA symposium there was a presentation on findings made by Mayo JAX using their c9 donated cohort of which Krissie was one ,which are really helping advance the search for a cure. I told him she is still helping people and it is true of everyone who gives this final gift.
Thank you to everyone who is doing this or has done it
 
Last edited:

pittsburghgal

Senior member
Joined
Jan 7, 2016
Messages
564
Reason
Lost a loved one
Diagnosis
11/2011
Country
US
State
PA
City
Pittsburgh
My husband will not discuss final arrangements with me at all. I brought it up once and he said that he didn't want to talk about it and did not care what I did.
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
10,532
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
Not to be cold, Pitt, but if he really doesn't care, you can do what feels right for you, which might entail donating for research for the reasons outlined here. And you can share that with him now still as an FYI if/as you choose in the moment; sometimes even when people say "I don't care," it helps them to hear.

Larry said "yes" to everything I signed him up for but would not have researched on his own.
 

Atsugi

Legendary member
Forum Supporter
Joined
Jan 11, 2011
Messages
5,200
Reason
Lost a loved one
Diagnosis
12/2010
Country
US
State
FL
City
Orlando
My husband will not discuss final arrangements with me at all. I brought it up once and he said that he didn't want to talk about it and did not care what I did.

PittsburghGal, one of the things that "final arrangements" does is it makes the survivor's life easier and better toward the end and afterward. If I were you, I would definitely make all the final arrangements that you can, without his involvement, and maybe get him to sign a paper or two if it needs a signature.

In our case, I decided that my PALS should not have to be bothered with the morbid task of doing her own final arrangement. Instead, she would prefer to use her final months playing with our children, talking with her sisters, and generally relaxing as much as possible.

So I did all the research, the final arrangements, everything without her being involved. At one point, because Krissy couldn't make a signature, I had a lawyer come in to the house and get Krissy's permission to "sign" the documents. It worked out real well.

Don't forget, ALS has two victims, the PALS and the family. I personally believe it's the CALS responsibility to do the post-funeral planning, and to arrange for their own best life possible.
 

BillH

Active member
Joined
May 2, 2015
Messages
53
Reason
Lost a loved one
Country
US
State
ID
City
Ada county
I'm a huge fan of having those conversations and making those decisions well before they are needed. Final decisions don't have to be left until the end. Good on you for tacking them in spite of how they make you feel. They are so tough.

My wife knew before we were married that I have a fALS family and the possibilities have always been openly discussed. If it comes we won't be surprised and we will already have the thinking done. Her Mom just passed away so we have had a fresh chance to have these conversations again, unpleasant as these things can be to think about.

Donating to research would be high on our list... we've had so many family and a few friends go from ALS that if there is any help to be had for the research in such a donation then we will go for it. My Mom died before our family gene was identified but I like to believe her donation and those of some of the family might have played a tiny but helpful role in progress against the disease.

I appreciate Mike's decision to do all the arrangements for his wife. When my wife was diagnosed with breast cancer I was prepared to do the same if her treatment wasn't successful. But if I ever get that ALS diagnosis I will make my own arrangements with her inputs as soon as I can while I still can. We all do it different.
 

KatB

Active member
Joined
Mar 3, 2015
Messages
62
Reason
PALS
Diagnosis
02/2015
Country
US
State
FL
City
Oxford
When I was at Jacksonville, Mayo for my second opinion, I must have been too distraught or caught up in hearing only what I could handle at the moment. I vaguely recall them saying something about donating (I did donate blood for research on that day) and If you had not brought this up I would have forgotten all about it. My heart jumped when I read your post, my brain went Ah Ha! I don't want to talk about it but it will have to be discussed. I don't relish talking to my kids about it, it was hard enough bringing all of the Will, DNR, Living will info up, I could see the look in their eyes........but since I can't speak......it falls onto my strong broad shouldered husband or a mechanical voice from Tobii. I'm so blessed he has had experience with dying and illnesses and saving lives too. He held my mom's hand and talked about the good times as her body shut down and her heart gave out, what an inspiration he is to me! He is a Vietnam veteran, a EMT, a 33rd degree Free Mason, and a loving caring man. Thank You for this reminder, I don't know where it will go but it's a good thing!!!
 

pittsburghgal

Senior member
Joined
Jan 7, 2016
Messages
564
Reason
Lost a loved one
Diagnosis
11/2011
Country
US
State
PA
City
Pittsburgh
Laurie,

I would very much like donating his body for ALS research. Would I be able to make this decision since I have power of attorney and he told me to do what I want? I would like to discuss this with him but I don't think he will do that.

This discussion has been very enlightening to me and thanks to all of you. I guess I had planned on waiting until it looked like death was close at hand but now I see the value in planning ahead, as painful as it is.

Sharon
 
Status
Not open for further replies.
Top