Status
Not open for further replies.

Tedstehr

Distinguished member
Joined
Aug 25, 2017
Messages
174
Reason
PALS
Diagnosis
08/2017
Country
CA
State
BC
My father-in-law died of FTD/ALS shortly after my diagnosis of ALS. We knew he had FTD, but had no idea about the ALS until I started researching the disease. When I found this sub forum, I strongly suspected what had happened.

My father-in-law, Yan, was an incredible man. He was a GP and practiced medicine for almost 60 years. His patients loved him and he took the time to understand their lives so he could fully treat them as patients.

We got his diagnosis of FTD, but we couldn't understand the spasticity, the loss of speech and the difficulty swallowing. And everything happened very quickly at first. He was concurrently found to have a large pancreatic tumor and given weeks to live. He lived another year.

We learned a lot from this experience - hopefully I can share the most important thing we learned to help CALS in this situation.

First, have a frank discussion with your PALS about their end of life wishes as soon as possible. Because as the diseases progress, they will not be able to tell you. They may be able to speak, but not understand. Yan told us he did not want assisted dying, but he didn't want heroic measures to save his life. He had a series of urinary tract infections. But does giving someone oral antibiotics constitute heroic measures? We didn't know. In retrospect we should not have asked for them and let nature take its course. We thought it would alleviate the pain and he would pass quickly from the pancreatic tumour. I think it may have prolonged his suffering. Had he been clear about this, it would have made my wife's decision less difficult.

Some people want to be kept alive at all costs, even if they are locked in, and some would prefer to pass away as soon as they lose their quality of life. I think it is the middle ground that needs a lot of discussion.

I don't know if this is always the case, but once things started to degrade, they went downhill fast. Yan lost his ability to speak and then move very quickly. He went from someone we could help to needing full time care in a few months. And then ultimately into care a few months after that.

In short, discuss end of life as soon as possible, and talk about the details as much as you can.
 

KimT

Forum Supporter
Extremely helpful member
Joined
Nov 18, 2014
Messages
3,418
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
Ted,

I always value your thoughtful posts. Thank you for taking the time to explain your FIL's situation.

My wishes have changed since I was first diagnosed and, unfortunately, is based on my finances and the lack of family caregivers. However, I can imagine that wishes do change. When I was first diagnosed I could still run (a little) and walk just fine. I was working and very busy with life. Now that my income has been drastically reduced and I have more time to think and much less energy, I find myself pondering what use I would be to others or myself if I took measures to prolong my life.

When I see the PALS who are really making a difference and a contribution, I see them surrounded with loving people and caregivers who provide for their needs.

So I have the documents prepared and the directions that I don't want a memorial service. If anyone wants to honor me, they can give to the poor or to the Gleason Foundation.

Certainly your post applies to the majority of PALS but I think PALS cannot call all the shots alone because it's the CALS who are the ones making the sacrifice. They need to have "the conversation" and reach an agreement. The CALS I've met here are so dedicated to their PALS that they would move Heaven and earth to care for them and abide by their wishes. God bless them all.
 

bigmark1954

Senior member
Joined
Jan 31, 2014
Messages
995
Reason
PALS
Diagnosis
01/2014
Country
US
State
utah
Interesting topic........For me it has been a roller coaster of thought on this dynamic.

My ALS clinic stressed the importance of Advanced Directives from the beginning. At first I said my preference was to be treated medically for things(UTI's, Pneumonia etc) in the final phase.Advanced Directives can be altered at any point in this disease progression, as long as the PAL is coherent.

I am not having fun with my progression and am thinking very seriously about changing to a strict DNR status, especially if I end up with FTD. The deeper I get into this, the more I feel like I am just existing with a disease that completely defines my life.
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
11,870
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
home
Thanks Ted what you have said is terribly important. When FTD is involved it is such a game changer. It is not something that develops at the end of ALS Mark, it is another disease process. Usually the FTD begins before or about the same time as the ALS, but I've never heard of FTD developing years after ALS or at end of life. I know you have a real fear of it, but it's worth saying again that FTD is not an end of life process.

Such a good point Ted that it is the middle ground where CALS are most often stumped. Our health directives here are able to be quite specific on a lot of that middle ground stuff.

I was always so thankful that we did all these papers very soon after diagnosis as Chris's FTD took hold rapidly and he would have been unable to do them within only months. It allowed me to let him make decisions all the way through on all the middle ground stuff, regardless of my opinion on how good these choices were.

When it came to the end, the moment he said no more hospital, I knew where we were at, and I was able to fully honour what I knew the pre-FTD man wanted and palliative care fully supported me in giving him the kind of end of life we both knew he deserved.

This is such an important topic Ted because you are talking specifically about the issues for CALS following the wishes of a PALS when they have FTD and cannot make good decisions. Interestingly with FTD, for a while there Chris's wishes changed from minimal life supporting measures, to doing everything possible to become the longest living PALS in history. After a few more months, more physical and FTD progression he became simply withdrawn and uninterested in most of everything. When a PALS is unable to engage in life, and suffers rage and paranoia, what kind of quality do they have? I know Chris was caught in a living hell inside his FTD brain, let alone the hell of his body failing.

These discussions are difficult, but it's why we constantly recommend that these documents are done as soon as possible. As Mark notes, if the PALS is of sound mind they can change them at any time. It's better to sign these early, and change them a few times, than not fill them out because you are not sure what you want and the CALS is suddenly in a situation where they have to make decisions without clear direction.
 

lgelb

Forum Supporter
Moderator
Joined
Nov 5, 2009
Messages
7,662
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
WA
There is no form that can cover every base, so the early conversations are key, as is listening to [and hearing] what the PALS has to say, whether with words, expressions or blinks.
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
11,870
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
home
Laurie a big problem with FTD is that the PALS often will simply refuse to engage in a conversation. So there is an issue and the CALS and Doctor explain that XYZ is happening and there are a couple of options - what would the PALS like done? The PALS looks blankly and says nothing, or says I don't care.

That's where directives done early can allow the CALS to feel they are making good choices for their PALS.
 

lgelb

Forum Supporter
Moderator
Joined
Nov 5, 2009
Messages
7,662
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
WA
I am not arguing against advance directives. And I understand that FTD and other potential ALS features impede communication. I am agreeing with you and Ted to have the conversations early, but I am also saying that with most PALS, even with FTD, there are tea leaves along the way, and they are owed reading if/as they emerge. Our partners and spouses are not strangers, so, as you say, there is a pre-ALS persona to tap.
 

Tedstehr

Distinguished member
Joined
Aug 25, 2017
Messages
174
Reason
PALS
Diagnosis
08/2017
Country
CA
State
BC
Laurie a big problem with FTD is that the PALS often will simply refuse to engage in a conversation. So there is an issue and the CALS and Doctor explain that XYZ is happening and there are a couple of options - what would the PALS like done? The PALS looks blankly and says nothing, or says I don't care.

That's where directives done early can allow the CALS to feel they are making good choices for their PALS.
Tillie, that exactly is what happened with us. How frustrating when the man you love, who spent almost his whole life dealing with end of life issues could not express his own wishes. We will never know if he was just too confused by then or he simply refused to confront his own mortality or there was some other reason we cannot understand.
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
11,870
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
home
I'm so sorry you went through that with him Ted. You just can't explain it to anyone who has not dealt with FTD - they think they understand but they don't. I couldn't have understood truly had I not watched my husbands personality and everything that made him 'him' erode away and he did indeed become a complete stranger.
 
Status
Not open for further replies.
Top