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jalasky

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Mohegan Lake
My husband was diagnosed the end of last summer. His is very fast moving, sept he was walking Dec he wasn't . He has no use of his hands and has very little speech left. He refuses to see a doctor since our last visit to a clinic in dec.. I think he doesn't want to hear bad news...like he lost weight, which he has. Since he doesn't see a dr I don't know for sure if he's has ftd. I was hoping someone could give me their opinion and guidance. He sounds like some of what I reading but not all. He gets mad, at me mostly but sometimes at my kids 22and 25 . Most of the time it's when i am trying to help him. The anger comes and goes and often i don't know what set him off. He seems to remember that he was angry and then becomes very sweet, only occasionally apologizing. Lately he has said he knows he isn't being himself. He sometimes says he had enough and sometimes seems surprised when there is any reference that this is a terminal disease. He fights help from devices every step of the way. He won't let any of our friends into see him and when my brother comes to help, so my kids can get away, he won't acknowledge his existence. Could this be depression or ftd? I would appreciate any advice. If it is ftd what medicines are out there and does it help?
 

patgayle

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Sep 20, 2012
Messages
60
Reason
Lost a loved one
Diagnosis
05/2012
Country
JAM
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Westmoreland
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Negril
I would contact his dr yourself. He may be suffering from FTD or it may just be a combination of him dealing with accepting this disease or the other meds that he may be on. My husband is on an antiphsycotic which seems to make his personality worse but definitely helps him get the sleep he needs. As the disease progresses I am finding that coping with the personality disorder is as difficult or more difficult than dealing with the physical issues. This is not the same person you married anymore, but he cant help it, try to let his anger go in one ear and out the other. I know that it is extremely difficult to do sometimes, but for your own sake - let it go. There are days I hate my husband for what he says to me.
 

mariasb

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Apr 8, 2013
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CALS
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11/2012
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MI
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Plymouth
Hi,
I am Maria and have the previous thread on here "He's gone". First, and foremost, I am so sorry that you are going through this. All summer long I prayed for death and my prayers were answered. it is awful to see a loved one, especially your spouse, having to go through all of this. Not only is he suffering, but the whole family is suffering. In trying to speak with my husband's doctor about whether or not he had brain involvement they would never give me a straight answer. I think that they would have to conduct more tests like an MRI to know for sure. My husband was not angry, in fact, he acted more child-like. He would have "tantrums", scream, and repeat things over and over. He wasn't sleeping well for months until hospice came in and then he was on morphine to settle him down. Whether or not it is FTD, the treatment is the same with antipsychotic drugs. We started with anti-depressants but then graduated to stronger. Definitely call the doctor to see if they will prescribe something to settle him. Our doctor required that we see a psychiatrist first and we did. Your husband cannot help how he is acting but I know that it is extremely difficult to care for someone who seems like a stranger. You are probably tired too as I was and that is when I would start to lose patience and get angry. Good luck and stay strong. It sounds like he is progressing rapidly as my husband did and things changed very quickly. Someone on this forum once said you don't have to pray for death because it comes fast enough and that is probably very true. Make sure you talk to him regularly and tell him everything you want him to know because you don't know when he will leave you.
 

jalasky

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NY
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Mohegan Lake
Thank you both for advice. It helps to hear that someone truly understands. I think the bottom line is that it is what it is...and it is an impossible situation. I will ask for medication to see if something will help. We have Marinol which is pill form of synthetic pot which does seem to help sometimes. It's just hard to get him to take it regularly. I do find the anger and the lack of clarity the most difficult part to manage.When I lose patiences and get angry the guilt follows because whatever I am going through, it's so much worse for him. I do feel that death would be a relief but I know when we get to the point there is a whole lot of pain waiting. He is not ready to let go yet....I look at my kids and I understand. I have called hospice even though I don't think we are at his last days, they did an evaluation but right now I am not sure how much they will be able to help. I hope for peace for you both and a cure for all.
 

Katie C

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UC San Francisco has one of the best researchers in the country concerning FTD. If you look through old threads in this forum you will find links to her and her research. Otherwise, you can do a web search on UCSF's memory program to find a wealth of information. It's a tough road... good luck to you! As far as medications, Glen took a combination of anti depression and anti psychotic meds... we were, under his psychiatrist's instruction, constantly adjusting the amounts.
 

affected

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I struggle with this too, so I want you to know that so many of us do completely understand.

Some days with his tantrums, lashing out at me verbally - for no good reason often (I walked outside to talk to a friend on the phone, I agreed with what a doctor said, he couldn't do something physically that he wanted to), then being nice again suddenly maybe minutes or hours later. If I try to talk about it and cite an example he will give a tiny smile like he knows what I'm saying, but he NEVER apologises.

Sometimes he is so lucid and deeply understanding, and I think, no it's just frustration and anger and I can totally understand. Then other days I truly wonder if there is brain involvement.

He can also turn it on and off at will - if someone comes over he becomes Mr wonderfully positive, and within a minute of them leaving he can be throwing a tantrum. He lies or tells part truths to health professionals, and he refuses to take any medication.

I try not to be hurt by some of what he says, but it can be very difficult. I'm planning to talk to our specialist just before our next appointment later this month to see if he can carefully try to investigate this a little.

I don't know how I would cope emotionally and I try to keep that high in my mind and understand it may just be that he is trying to cope with the most horrendous monster eating his body away a bit each day.
 

patgayle

Active member
Joined
Sep 20, 2012
Messages
60
Reason
Lost a loved one
Diagnosis
05/2012
Country
JAM
State
Westmoreland
City
Negril
When I read these replies I can't believe that there are so many of us out there having to live with the lies and abuse that our PALs put us through. The other night my husband asked me to call his mother (in a different country) told me he wanted her to his voice once more before it is gone completely. I dialed the number and held it to his ear, suddenly he started telling the most outrageous lies to her including that I beat him! The phone was on speaker their end - so his sisters etc heard the whole sorry story. He did apologize the next day, but then started whispering the same lies to his day nurse and other visitors, so the apologies are meaningless. As much as I love him I don't know how long I will be able to take this and only wish that it was over. I know I will miss him dreadfully, but atleast I will then be able to remember the positive things in our life and not have this negative /nasty behavior thrown in my face every day. Not a day goes by that I don't get angry, this is not how I want our final days/ months/years together
 

Barbie

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I don't think my husband has FTD, but definitely has personality changes. I think mental changes are to be expected as this is a NEURO muscular disease. It is only now being recognized by the medical community that it is common and not rare as they will tell you when first diagnosed.

I think if you have medication or MMJ, you need to get it in him everyday by hook or crook. it is for his own good, and he can't make rational decisions if he has FTD.
 

jalasky

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Affected... I could have written what you wrote. My husband won't see a dr. Since our first clinic visit. I had to lie the 2 times I got our family dr to come to the house . He fought with me he didn't want him here....was as nice as can be to the dr. Agreeing with whatever he said...then gave me dirty looks when he was gone. I think it is unbelievable that they know so little about this disease. It feels so good to hear from all of you who understand. I hate that our last days together could be so hostile when we had such a good marriage.
 

affected

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lala land
I can't say much but it has become totally awful here. I know it is not full blown FTD, and some may simply be pain, anger and frustration, but it has really hit the fan.

I don't quite know how to cope when the person I love totally is becoming more and more dependant and I would do anything for him, but he lashes out at me personally and there is NO remorse. It doesn't matter how much time goes by and how much better he is, if I try to talk about the behaviour he is simply this angry person again and I just get another serve.

I believe pain is a big part of his issue, but he does not want to address the pain, feels that he is fighting the disease and therefore pain is just part of it.

He can turn on and off being totally lucid and civil, so when anyone else is around he is mr positive man who can handle anything. When we are alone and it gets to him then he just takes it out on me and says well he doesn't have anyone else to take it out on anyway.

Heartbreaking what this disease can do to a wonderful, caring, kind, highly active person.
 

ottawa girl

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Tillie,

I am so sorry for what you are enduring. Just wondering... How do you feel about putting pain meds in the PEG? It would relieve his pain and maybe decrease the lashing out behaviour. I know it's probably unethical - but gee whiz - the illness is turning him into someone you don't know. At this rate, he will out last you!
 

affected

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thanks Elaine, I hope we can find a pain relief solution together with doctors that will give him the relief he needs which would be much better for everyone :)
 

Barbie

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Joined
Dec 29, 2007
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01/2007
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perhaps it is manly man thing going on--"Real" men don't complain about a little pain. I would sneak it in something just to see--pain can cloud the mind and make bad decisions. maybe he is thinking he doesn't want to get addicted (crazy thinking but a straight-laced guy might wrongly be worrying about that)
 

Katie C

Very helpful member
Joined
Aug 1, 2009
Messages
1,560
Reason
Lost a loved one
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07/2009
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CA
City
San Jose
I flat out lied to Glen at times about what his meds were for. When you are dealing with a medical condition that literally removes the person's ability to make rational, logical decisions (it's called executive function) then you have to make those decisions in their best interest. And remember that FTD exists on a contiuum, it's not an all or nothing thing that you have or don't have. Please don't wait until symptoms are unbearable for your PALS and YOU before seeking help! OK, quietly going back to my corner now.
 

mrvaughan

Distinguished member
Joined
Nov 9, 2013
Messages
101
Diagnosis
05/2000
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MI
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Grand Rapids
I just heard of FTD. My husband has been diagnosed with ALS since May of 2000. He has been on a ventilator and a feeding tube for the past 5.5 years. Just recently he seems to be going "out of his mind" He has always geared his attacks towards me and has hidden his personality from others, but lately he isn't even listening to reason. He has refused all pain meds, but is always in pain. He is insisting on marital relations and cialis, even though I won't since I know he doesn't have the ability. He has gone through a couple of months of insisting that the nurses take off his ventilator for spans up to an hour, and now is talking about divorcing me and moving to Tailand or Jamaica. The good times are becoming further and further apart. The neurologist told him this week that people that are on ventilators for a long time develop a mania, so I am not sure if this is FTD or a mania. Either way, He does not listen to reason, he fixates on things and he things myself and the doctors are totally against him. I know I am rambling, I have never posted on blogs before. This Monday I am going to start the proceedings to getting the POA for health turned over to me. He is only making decisions that are hurting him. take care, stay strong and God love you
 
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