My husband

affected

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Lost a loved one
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05/2013
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Kiwi, finding the best way to get through a whole week is fantastic.
Yes, ok, in reality, it totally sucks that this meant losing yet another part of your relationship, but we get it.
One day at a time ...
 

patientkiwi

Member
Joined
Jul 22, 2019
Messages
17
Reason
CALS
Diagnosis
07/2013
Country
NZ
State
SI
Hi Just wondering if anyone's PALS was formally diagnosed with FTD. I have asked my health professionals at the MND clinic and they said it is very hard to diagnose, so I was wondering if anyone had had a formal diagnosis and if so, how was it done.
Thanks
 

affected

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We have had some formally diagnosed, they are all past CALS now tho I believe.
My husband was not because there is no way he would have agreed to submit to testing, and he would have been so furious with the diagnosis I felt it was a moot point.
I was not going to spend the last months of his life arguing with him.
His paranoia was huge, and I was not going to escalate it. He would say to me - "don't worry I'm not going to end up with dementia as well".

It is hard to diagnose if they try to directly test the PALS.
It is easier to diagnose if they choose the route of working with the CALS on the changes they are witnessing.

Keeping a diary of behaviours could be a wise thing for you to do, but you may need to do this very quietly.
 

patientkiwi

Member
Joined
Jul 22, 2019
Messages
17
Reason
CALS
Diagnosis
07/2013
Country
NZ
State
SI
Thanks Tillie. I have been keeping a diary of the progress of his MND right from the start and have therefore kept notes on the changes in his behaviour (not all of them but enough that I can put them into a separate page with dates and behaviours and take them to someone medical). The GP I spoke to (the one from the MND clinic) was very helpful and supportive but they just don't seem to have anyone on the team with any experience with FTD and the team psychologist suggested that his behaviour could just be emotional issues relating to diagnosis that haven't been dealt with. I know my man - well, the man he used to be - and I am confident it is more than that. I only would like to know so that I can deal with the behaviours appropriately. In the meantime, I am just watching everything I say and trying to avoid any topic that could trigger the outbursts. This doesn't of course stop the lack of empathy. The other day I cut & bruised my hand; it was very painful and I showed him the injury expecting a little sympathy but he just looked at it with no expression at all and carried on watching TV. I have spoken to the manager of the rest home where he goes for respite care (in confidence) and explained some of the issues I have been having so she is going to do her best to make sure he has no cause for complaint while in respite so that he cannot have any reason to refuse to go in. Because of his paranoia, that may not stop him having the perception that there is cause for complaint but we can only do our best.
Thank you again for your support. I don't know if you realise just how much it has meant to me to have heard from someone who actually understands what it is like.
 

affected

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@patientkiwi I do understand what it means. When my Chris was showing all these behavioural changes I don't know how I would have coped with it had it not been that online I had 3 other CALS that were experiencing the same. We couldn't believe how identical the types of behaviours were as any one of us would recount something that happened that day.
I broke my toe one day, rushed into the bathroom and kicked the leg of the chair he would sit on to do teeth etc
Same thing, just a blank look at me, then impatience at waiting for whatever he wanted done.
But in this instance, I then had weeks to heal. He became furious that I asked 2 of his adult children to come and help me the first weekend. How dare I expect them to give up their precious time off - I could just leave anything I couldn't do and the home care staff that helped during the week could do it Monday.
I can say this to you and you can laugh, because I would never have said it to him in truth but I thought - oh ok, so I can just leave you in bed til they come Monday can I?

Anyone that helped me at all during that time got huffs and eye rolling from him.

Now, the point is not those things I just wrote. The point is that it was so startlingly opposite to his normal personality.

May I ask, did you notice behavioural changes before the ALS symptoms?

That is a big one for me because Chris began behavioural changes before the ALS symptoms began, so it wasn't a response to ALS.

That does however make diagnosing FTD difficult, because of course there is an element of all the shock, depression, anger and grief. We as CALS are battling that as well, but we should not exhibit a full change of personality and behaviours.

I tried not to analyse Chris too much, and in the end what did it matter what was FTD and what was response to his situation anyway? It's not like if we could diagnose this we could cure it.

What I concentrated on was treating him with respect, keeping his dignity, and still giving him the choices and advocating for his choices. I did not get into arguments, particularly ones of logic. I especially knew that as his memory was completely intact, and his paranoia was high, it was best to say as little as possible on hot topics or situations as he would filter them with paranoia and stack them on the pile and remember them no matter what other details he lost.
 

patientkiwi

Member
Joined
Jul 22, 2019
Messages
17
Reason
CALS
Diagnosis
07/2013
Country
NZ
State
SI
Thanks Tillie. And you are right - if I just focus on treating him with love & respect even though he is not reciprocating and is treating me with anger & indifference, hopefully I will provide a stable anchor for him. That is my goal anyway - often easier said than done but I will do my best.

In hindsight, I believe that there were subtle changes occurring prior to his diagnosis. About 18 months before the physical symptoms became apparent, I had seriously considered leaving him because I felt he was becoming very controlling. It is too long ago now (about 9 yrs) with so much that has happened in between, that I can't recall what other changes there were, if any. In the end, I decided to stay with him because I wasn't convinced that I wouldn't regret it if I left and now I am glad I did because I could not have lived with myself if I had left him and then this had happened and he was on his own. And his current behaviours are so different to the man I have loved and lived with for over 40 years. He was always a loving and romantic husband, very caring and supportive; never raised a hand to me and seldom raised his voice even when we had the occasional argument. I wonder if that isn't what makes his current behaviour so hard to deal with - because I have known such love and support from him and that has all gone.
 

affected

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yep, the behavioural changes start very subtly and build slowly and insidiously. becoming controlling is a common thing to notice in the early stages. At least you now have support as you try to deal with it all with love. You won't be perfect and always succeed, but you can have that as your goal 💜
 

Narrowminded

Extremely helpful member
Joined
Apr 30, 2016
Messages
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Reason
Lost a loved one
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07/2007
Country
US
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Kiwi I’m so glad that now that you know what is causing the issue it has made it a bit easier to understand and deal with.

I don’t think my husband had FTD as badly, but I do think he had some. Your mention of the behavior changes prior to physical symptoms is very much like what happened with my DH. Problem was, we own a business and at the time I was chalking those behavior symptoms to work. I too had contemplated leaving, but like you decided to stick it out and was so thankful I did.

Hugs to you as you navigate this very treacherous route you are on.
 

patientkiwi

Member
Joined
Jul 22, 2019
Messages
17
Reason
CALS
Diagnosis
07/2013
Country
NZ
State
SI
Hi Everyone Just thought I'd give an update. Have had 3 fairly peaceful weeks (one of those weeks he was in respite care) - pretty much because I am learning to avoid anything that I think will set him off. However, I can never relax and I find it exhausting to have to think about every single thing I say before I say it in case it might cause an outburst. I feel I am losing "Me" because I am trying to be who he wants me to be just so that it keeps the peace. I have been in email contact with one of the doctors at the MND clinic - she is very supportive and is going to talk to my husband's neurologist to see if he can have a 'review' appt during which the neurologist will do a discreet assessment. He hasn't seen the neurologist for about 4 years so the plan is to have a thorough review because it has been so long. Will let you know how it goes.
 

Jrzygrl

Senior member
Joined
Feb 14, 2017
Messages
554
Reason
Lost a loved one
Diagnosis
08/2014
Country
US
State
NJ
Thinking of you, Kiwi! Glad you've had a few peaceful weeks. I get you when you say how exhausted you are and that you're losing you. I hope the review goes well and they can help you in some way.

Sending huge hugs!
 

affected

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Joined
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Messages
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Reason
Lost a loved one
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05/2013
Country
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It really is exhausting and the worst part is seeing the person disappear.
Some places do a lot of the assessment by interviewing the CALS as they can offer insight.
I hope you get somewhere, keep us posted and vent how you need 💜
 

Narrowminded

Extremely helpful member
Joined
Apr 30, 2016
Messages
2,515
Reason
Lost a loved one
Diagnosis
07/2007
Country
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State
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Good luck to you with getting a discreet assessment. Always tricky. Happy that you will see the neuro too.

Hugs
 

patientkiwi

Member
Joined
Jul 22, 2019
Messages
17
Reason
CALS
Diagnosis
07/2013
Country
NZ
State
SI
Hi Everyone. Just another update. Haven't had any dramas for several weeks and he has been quite stable. Now I am second guessing whether he does have FTD or not. If they have FTD, can they control their behaviour? His behaviour right up until a few weeks ago was so much like FTD that I had no doubts but I just don't know now. So I am just enjoying the relative peace while it lasts. There have been other periods where he has been stable (personality wise) but usually for a much shorter period of time. Hope you are all doing well.
 
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