Old 10-27-2014, 04:23 PM #46 (permalink)
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Default Re: FTD With ALS Advice

3grandboys, look on line for adaptive clothing or handicap apparel. A wide array of clothing easier to put on and use. If he is a vet, believe there is a clothing allowance for adaptive items.
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Old 10-27-2014, 07:54 PM #47 (permalink)
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Default Re: FTD With ALS Advice

>believe there is a clothing allowance for adaptive items.

true, probably in Mike's sticky ....
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Old 10-28-2014, 10:49 AM #48 (permalink)
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Default Re: FTD With ALS Advice

>believe there is a clothing allowance for adaptive items.

Yep, and you have to apply for it yearly.
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Old 10-28-2014, 09:35 PM #49 (permalink)
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Hi all... My Husband told me today that he is choosing his Personal Assistant over me, his Wife. I do not know what to do or say. I am about to give up on this craziness...
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Old 10-28-2014, 10:42 PM #50 (permalink)
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Default Re: FTD With ALS Advice

What is the difference between a Caregiver and a Personal Assistant?
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Old 10-28-2014, 10:43 PM #51 (permalink)
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Default Re: FTD With ALS Advice

And, Husband refuses a Nurse...when is it time for a Visiting Nurse?
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Old 10-29-2014, 12:29 AM #52 (permalink)
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Default Re: FTD With ALS Advice

Libby I know you are distressed but can you explain what he means by choosing his personal assistant over you?

Have you been to talk to social worker and doctors about this since you posted here?

I think you need to talk to your lawyer as well.

If it is what it sounds, you need to get a diagnosis of FTD as it will make all the legal difference in the world.
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Old 10-31-2014, 12:08 AM #53 (permalink)
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Default Re: FTD With ALS Advice

Hello Tillie...he meant he would choose his Personal Assistant as his Caregiver over me, his Wife. We had a wonderful Personal Assistant that we hired together in January of this year. When I helped move our daughter to a new college and apartment in August, he fired her and brought this new Personal Assistant on board without my being a part of the interview. This 35-year old woman is a bad seed and a manipulator. I see her taking advantage of my Husband's illness and money, and she is antagonizing me also in our home. My Husband will not get rid of her...don't know what to do here. Also, Tillie, have been emailing ALS Clinic where he is treated about goings on. Nurse told me yesterday that he has not been declared incompetent by a court and there is nothing that can be done. Said it would play out?! This is wearing me down...
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Old 10-31-2014, 04:17 AM #54 (permalink)
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Default Re: FTD With ALS Advice

Hi Libby, I'm not sure what you were emailing to your clinic.

I would be emailing them and saying that you suspect FTD and want him assessed. This seems like it is important just now.

Do you have all your legals in place? This will be important as if you do and he is diagnosed with FTD, then you are able to sort things out. He won't like it, but if he honestly has this problem you will be able to.

If he does not have FTD, then you have a different problem. He may be very angry and in some denial about the ALS and acting out of character as a way of trying to cope. But then legally he would have the right to do all this.

I'm not saying it is one or the other, I just think you need to have him assessed. Maybe you can make an appointment and go in and sit down with his doctor. Not go into a distressed lot of stuff about what he is doing now, just say he is behaving very out of character, you feel there is some brain involvement and need it assessed.

Often part of the assessment can involve the carer answering questions on changes of behaviour and mood.
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Old 10-31-2014, 09:51 PM #55 (permalink)
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Default Re: FTD With ALS Advice

Thank you Tillie... Have a plan in place for talking with an attorney about financial power of attorney. I am even contemplating visit to State Police about Personal Assistant preying on my sick Husband. Can't believe I am here, but I am! This is nuts!
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Old 10-31-2014, 09:53 PM #56 (permalink)
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Default Re: FTD With ALS Advice

Tillie... I do not seem to be receiving much support from my Husband's ALS Clinic...about behavior or driving!
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Old 11-01-2014, 03:00 PM #57 (permalink)
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Default Re: FTD With ALS Advice

Those legal papers need to be in place before he is diagnosed with FTD and he has to do them, you can't. Usually getting all the legals in place is something a Financial advisor would have done as a matter of course, let alone after a terminal illness diagnosis.

I'm sorry the clinic isn't supporting you, I do think you need to go in and have a sit down appointment with them and focus on what is happening to your husband, not how distressed you are about it. I'm not dismissing what is happening to you, I'm just saying that this is how you need to tackle it. Otherwise they will dismiss a lot of what you say.

You need to keep a diary and write down all his behaviour so that you have something to present to health professionals.

You also need to examine how you are reacting and responding to it all. Behavioural variant FTD usually responds to lots of triggers. So maybe in your own distress you are triggering certain behaviours and could have a little success is not triggering as much paranoia etc


You are not causing the behaviours, but I for example with Chris learned how to not trigger things so much.

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Old 11-02-2014, 11:39 PM #58 (permalink)
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Default Re: FTD With ALS Advice

Tillie, agree with you about triggering of behaviors. I am going to start attracting bees with honey, and not vinegar. I always seem mad and upset. If I start taking care of me, maybe joy will follow. I have lost 10 pounds recently over what is happening to my husband and activities within my home. I am disappointed at lack of support from my husband's ALS Clinic. It is about four hours away, and tough to get him there for an FTD assessment and not a regular Clinic visit. I still cannot believe ALS Clinic nurse said "Nothing can be done, and it will play out". Exasperating to say the least.
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Old 11-02-2014, 11:41 PM #59 (permalink)
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Thank you Tillie for understanding what is happening here...and offering advice.
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Old 11-06-2014, 12:47 AM #60 (permalink)
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Default Re: FTD With ALS Advice

Libby, I have been where you are now, and I am so sorry for what you are going through. But I hope you will act quickly to minimize the damage. I am very concerned both about your husband saying that he is "choosing the assistant" over you and the fact that she is manipulative and taking money. My advice is to get to a lawyer, fast, and without this con-artist or your husband knowing that you are doing so. A divorce lawyer or eldercare lawyer will have experience with this scenario of a person with dementia being financially abused. Please do not underestimate how low these con-artists can go.

My husband was also involved with a financially manipulating person whom he insisted was just a "friend". I think if I had not found out, she would have talked him into divorcing me in addition to the money she "borrowed". My husband insists to this day that she was a "good person", and he could not admit or see how she was using him. We actually separated because of it, and thank goodness I insisted on a generous settlement, because after 18 months apart my husband was sick, broke, and his "friend" was nowhere to be found once the money was gone. My husband had to rely on what I had managed to preserve. This happened before I had any idea about FTD, so I had no other options than to legally separate.You have the advantage of knowing he has FTD, and I hope you realize that this person is totally taking advantage of your husband, and you have to protect both of you.

I would also recommend you ask the lawyer about writing a letter dismissing the assistant for financial irregularities, and get an order to prevent the "assistant" from entering your home, and freezing your husband's assets. You need to get her (and maybe all the other hangers-on) out of your husband's life, and assert your right to your home and your share of assets. With the FTD, he cannot see the ultimate consequences of his reckless spending and rejection of you.

If your husband has already been diagnosed with dementia you can invoke your power of attorney, but a lawyer will advise you on your options. I know how hard and horrible all of this is, but it will be easier once you have control of your finances and home. Good luck!
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