FTD With ALS Advice

[affected]

Welcome keri.


There were a couple of things that stuck out to me from your post:

1. that he was a good actor - it's often not realised about FTD and was one of the absolute hardest parts of it for me at the time and even now after he is gone. When anyone was around he was Mr positive "I'm fighting this", and people were in awe of him. Same on fb he would only post occasionally but always positive stuff and people would say he was their hero.

For me, that meant that if I were to step up and say what was really going on it was like I would have exposed him as a fake or something. That's how it felt anyway. Now that he is gone it feels like I would be trying to destroy the 'good' memories others have of him if I were to talk about it.

2. a person with dementia has one important thing all the way to the end: feelings.

That really struck a chord with me. No matter what was happening to Chris, I knew that his feelings were really important to me. I couldn't stop his paranoia and I couldn't truly soothe his rage, but I could try to look for triggers and avoid them. I hated the most to think that he lived in a world where he thought such paranoid thoughts about me in particular, but about everyone and everything that was happening.

 

[3Grandboys]

dear all, I am finding a dilemma as a caregiver for my husband with ALS-FTD. I am trying to enjoy the moments of today, because as of today we are ok and managing, but the doctors keep telling me to prepare for the near future because his is a fairly rapid progression. I am to prepare for wheelchair, get house ready, and eventually feeding tube and breathing machine. I have felt so anxious hearing that a week ago. How do all of you handle the sweet moments of today while fearing the sorrows and challenges of the near future?

 

[dalvin]

Think one of the 'secrets' is to prepare for the future while enjoying each moment. That way you can plan each adjustment in a calm way instead of having to rush around at the last moment hoping your getting it right. This also allows for minor adjustments to what is being done.

 

[MaxEidswick]

> How do all of you handle the sweet moments of today while fearing the sorrows and challenges of the near future?

damned difficult some days!

 

[affected]

You've brought up the biggest question we face both as CALS and PALS.

As a CALS I think it's our job to try to stay one step ahead of progression and avoid crisis. But we also need the balance of enjoying the sweet moments of today.

How do we do that? I wish I could give some formula that's guaranteed to work. I felt like I bumbled on through each day, whilst people watching me thought I was amazing and in control.

I did have this way of pushing everything aside for a time and could just 'be' in the moment or the day, then the reality of progression and my fears would get me again. With FTD it was even harder as I lost the ability to just relax into Chris and let him make the decisions and come up with great ideas.

You will find a way through, and you will find sweet moments and blessings, but this tough road is not going to be gentle I'm so sorry to have to say.

Please do get moving on the wheelchair, house and everything else. I often had stuff in the garage well in advance of him being willing to use it. Things can take time to organise and equipment arrive, so if you don't have them ready in advance you can suddenly be in crisis.

Lean on us

 

[3Grandboys]

The epitome of my life with a husband with FTD was last evening at dinner. I seriously choked on some food and coughed like mad, while he did not even look up and continued to eat his soup and never asked how I am or hold my hand or anything kind……...

 

[Molly90]

Hi Again to you all,

I haven't been on here for a while. I have been asking many questions and reading up on FTD and MND. I am slowly coming to terms with hubbys diagnosis. One of the most challenging things I am finding to deal with is my husband easy going is not in the least interested in his health or his needs. All the decision making has to come from me. At first I thought this was a good thing, because he doesnt think about the consequences of MND and therefore doesn't get depressed. But as things slowly change I am finding it more difficult to make decisions. For example his breathing is getting gradually worse and so he is being admitted to hospital at the end of this week to see if he needs BIPAP and to try him on it. I am staying with him, but am not sure how he will take to the mask he loathes anything over his face, they keep saying they will not push him its his decision but I cant get across to him the alternative if he doesn't use bipap is that he will keep deteriorating quicker. Also he is finding it very difficult to clear his throat as he hasnt got the strength in his muscles, he has developed a slight cough but will not go to the Doctor and says they will sought it out when he goes into hospital. I just find the decision making for him is very daunting and I fear I may make the wrong decision.

 

[Molly90]

The epitome of my life with a husband with FTD was last evening at dinner. I seriously choked on some food and coughed like mad, while he did not even look up and continued to eat his soup and never asked how I am or hold my hand or anything kind……...

Hi Grandboys,

I empathise with you and if it helps understand totally how hurt, annoyed, upset and all those other emotions you feel, when our husbands have no feelings towards our plight. I was told on Friday I am borderline diabetic, no big deal but when I told my husband he just said Oh. The Doc rang yesterday to invite me to the Surgery for more tests and hubby said are you going to bother going. He would never ever have been so detached of caring and emotion a few years ago.Its very ahrd to come to terms with isn't it. :?

 

[affected]

Molly and 3GB - the total lack of empathy is so hard to deal with

Molly, this is going to be so very difficult but if he won't tolerate the mask, somehow you are going to have to just accept this. Chris only finally started asking for bipap in his last weeks of life. He knew full well his breathing had declined significantly and he would have benefited from it 6 months earlier, but it was his FTD way to deny symptoms and insist on these being his decisions.

 

[patgayle]

Molly, do not be afraid of making the 'wrong' decision. Know in your heart that any decision you make, you are trying your best. My husband refused most aids. He refused a breathing apparatus and feeding tube. Yes he may have passed away sooner, but, it he may have made the decision based on there wasn't much left to live for and he did not see the point in prolonging the pain and suffering. His breathing issues became most obvious while sleeping with short breaths and then a very large one often with a grunt. As for swallowing, he too found it hard to swallow his spit and flem - finally he agreed to a suction machine, don't be afraid of it it is very easy to use and made the world of difference, and quite frankly I was not surprised that he was having trouble, when I saw how much we could get out from the back of his throat. Sometimes he would choke a bit while we were using it, but that actually helped bring the stuff up.

As Tillie says, get ready. I bought a hospital bed to make him more comfortable and my job easier. I slept in it for weeks before he would use it. The wheelchair was the tough one, he sat in one in the store and cried till I just took him home without one, but we eventually had two. This is a tough road you are both on. You will manage somehow.

 

[Libbylu]

Tillie, this is Libby Lu. It has been awhile since I have visited the Forum. I know I have questioned the FTD forum before, although I went into ALS Forums and Not Sure if it is FTD. I noticed that the blog was closed, however, there was a mrvaughan that spelled out exactly what I am going through with my PALS. I was wondering how to get in touch with mrvaughan...similar circumstances in that husbands both on ventilators for over two years and experiencing a mania; not sure if FTD, but obvious personality changes. He hired a Personal Assistant in August while I was helping our daughter settle into a new school in a new city. He has grown increasingly close to this PA in that he defends her first and throws me under the bus constantly. We have gone to marriage counseling, since I feel this PA is a wedge; they are in constant texting contact, and he basically tells her "my wife doesn't understand me". So,it is two against one. He has told me he is giving her a down payment on a house. Also, will be taking her to Atlanta for month for the winter, because he prefers her company over mine. He has told me for the last month that he wants me out of the house, because we cannot coexist in the home. I have been trying to "stick it out" at home, but my nerves are shot and have lost 12 pounds over their shenanigans. I moved out yesterday to my Mother's...cannot take it anymore. There are so many caregivers and practitioners coming and going constantly with the front door always unlocked. I am at my breaking point. Feel terrible wishing he were dead, although the man I married is already dead. Advice? Legals in place.....

 

[affected]

I'm sorry Libby Mary (mrvaughan) left when her husband passed away which is very common.

I wish I could give advice, but I really don't know anything about the laws over there, except that they are very different to Australia.

I would have said get solid legal advice BEFORE moving out of the house however, then you can be sure you plan your moves wisely.

I'm so sorry it's still so awful, I can't imagine your situation.

 

[Libbylu]

Tillie...thanks. Have not totally moved out...just packed some bags. Will be seeing an attorney later this week. Even though I have done as he wished and moved out, rest assured he has hired enough people to care for him. Although, I am sure he will be telling people I bailed. Just wanted to give him the peace we both need. Can't stand fighting and tension anymore. So many people coming and going, not much for a wife to do anymore. His P. A. Running his show, just the way he wants it. I wasn't involved in any decision making anyway. Will keep you posted...

 

[Lixen]

Hi Libbylu. I'm a long time lurker of the boards and a little late to the party. I just wanted to ad that I also observed personality changes in my PALS similar to what you're experiencing. I am speaking from my personal experience which may or may not be relevant to your case, but with my PALS his lack of empathy and complete personality change was due to the antidepressants he was given shortly after diagnosis. I don't know if he had an atypical response to the meds or what but seeing as how I had been on them before, I saw certain behaviors in him that I also exhibited when I was taking them. While they are a lifeline for many they aren't for everyone. I don't know if this even applies to your case but I wanted to mention it.

 

[affected]

thanks for that input and welcome Lixen!

Anti depressants actually took the edge of the rage that accompanied my husbands FTD. So you are correct that these meds interact and react differently with each individual. He only accepted them finally because he was told they may help him sleep - and they did!