It's interesting to me that finding information about Frontotemporal Dementia (FTD) directly from the patients who have it is hard to find. Part of this might be because a lot with this diagnosis suffer with word problems making communication more difficult, or they are in denial that something is seriously wrong. Who would want to admit that their brain was failing them? I'm sure very few of us would raise our hands! There is also a condition called anosognosia in which the patient lacks an awareness or insight that there is a problem at all.
My husband is in denial quite often about his condition. He tries to "cover" things a lot, speaking in circles or using generalizations to answer a question or confront a problem. He will very, very rarely admit that he has forgotten, got confused, or can't work something out in his head. Today we had a discussion about his anxiety and agitation issues. He told me that he feels that he lives in his own world where his brain tells him things that do not fit with my world. He said it is getting more and more difficult to bring the two together. The things his shrinking brain tell him are false a lot of the time, and he of course feels that they are true. This has to be tremendously hard to deal with mentally. I think this is a big part of the reason he feels the anxiety and stress... stuck somewhere between "normal" brain and "dementia" brain and never being fully in one of them.
I also asked my husband if he felt that he got enough love and affection. He seemed puzzled and said that he doesn't really know what that means anymore. He was having a hard time explaining, but from what I understood it seems that the human need for intimacy and affection is gone, meaning he doesn't need an expression of love any more. With this, of course, it means that he does not show affection to those that he loves. This has been going on for at least a few years. I told him a few months ago that when this life is all said and done, that I needed more love in Heaven because I didn't get enough in this life.
The other thing we discussed today was why he follows me around. He does this often and from what I understand, so do many FTD patients with their spouse or caregivers. Having never fully understood why, I asked him today since he seemed to be willing to talk more candidly. He told me that it's because he never feels safe. I guess, sort of like a child will follow a parent around, he follows me around to feel more secure and safe. This makes sense even if it is hard to deal with sometimes!
Showing posts with label bizarre behavior. Show all posts
Showing posts with label bizarre behavior. Show all posts
Friday, August 9, 2019
Monday, August 5, 2019
New Normals
A little dejected today. The last few nights have been rough. Last night wasn't good. Husband is getting very confused on waking and urinating everywhere but the toilet, and doing bizarre things. Last night he fell asleep early and woke needing to use the bathroom, headed straight for the laundry room in the hallway across from our bedroom. Luckily I was awake and managed to redirect him to our master bathroom, but he stopped at the tub and turned on the faucets. He said he needed a shower (we have separate tub and shower), then just stood there uncomfortable before exclaiming "wow I have to pee!". Steered him into the toilet room finally. Then after, he got back into bed and started choking violently and gagging. It was very worrisome and he vomited a little into a container I grabbed. In the confusion, he tipped the container over onto the carpet and spilled it. Got that cleaned up while he watched and didn't say much.
The apathy erasure in my husband is complete, he doesn't apologize or feel bad that I have to clean up his messes, but I understand and it's ok. I feel this is the beginning of another "new normal" with this stupid FTD. How long will it take to adapt to this one? It took forever to adjust to the mean, angry stage. Funny how we adapt.
So my plan at this point is to place down towels and/or pads from the bed to the toilet and leave lights on in the toilet room. Hopefully this will help to "guide" him to where he needs to go and he won't get as confused. I've also read that having those little plastic urinals like they use bedside in the hospital can be helpful. Maybe it's time to get some of those as well.
The apathy erasure in my husband is complete, he doesn't apologize or feel bad that I have to clean up his messes, but I understand and it's ok. I feel this is the beginning of another "new normal" with this stupid FTD. How long will it take to adapt to this one? It took forever to adjust to the mean, angry stage. Funny how we adapt.
So my plan at this point is to place down towels and/or pads from the bed to the toilet and leave lights on in the toilet room. Hopefully this will help to "guide" him to where he needs to go and he won't get as confused. I've also read that having those little plastic urinals like they use bedside in the hospital can be helpful. Maybe it's time to get some of those as well.
Saturday, July 6, 2019
Oh, The Bizarre Stuff
Frontotemporal Dementia is not kind. It's not kind to the one suffering and it's not kind to their family. Last night was not good. This morning was worse.
I wish I knew what caused some days to be worse than others. Some days my husband doesn't seem to be there at all. Last night was a blur of trying to sleep through him turning on the bedroom light, leaving the master bathroom light and fan on, and him trying to figure out how to put a blanket on himself. He seemed to do everything but cover himself with his own blanket. He tried to steal my blanket repeatedly and then bark at me when I needed it back. He pulled up the comforter that was folded under our feet and pulled out all the sheets. He managed somehow to get the top sheet pulled up the wrong way and slept (if he slept) like that. At one point when I needed my blanket back he raised his voice and said "who are you?" "I don't know you!". It's difficult to tell if he was serious or being a turd. Is he failing to recognize me?
This morning he had arranged for some landscapers to come to our home and straighten up our yard. They arrived at 7 am and didn't leave until after 11 am. This seemed to be very taxing and overwhelming to him. It's like my husband is struggling to try and be the productive man he used to be, and failing miserably.
Halfway through the landscapers being here, my husband had an episode of incontinence. Now, I am being brutally honest here, but this is our life. This is where things really started to go downhill. He yelled and cursed at me like it was my fault he soiled himself, the floor, the rugs, the smears down the bathroom sink. After I cleaned, sanitized, and washed everything I saw that he was walking around without any bottoms on. No underwear, no pants. He then went out to our pool and got in naked. Keep in mind the landscapers were still working on our yard. So I (walking on eggshells of course) asked if the landscapers were still around and he said no, they left. Of course, they had not left, nor had they been paid for the day.
Fast forward a little after I had convinced him that the landscapers were still here, and he walks into the house naked. This moment was terribly puzzling to me. He sat on the bed and kept picking up various articles of clothing and acting like he had no idea what they were. He attempted to put a shirt on as underwear. He put on an actual pair of underwear then put on a second pair before taking them off. He managed to get a tank top, socks, and flip flops on.... still no bottoms. While this was happening the landscapers were ringing the doorbell (because they were done and looking for the day's payment) and my husband was cursing and yelling at me to not get the door. Very stressful!! Still struggling to put on clothing, he managed to get a pair of pants on.... yay!...then put on a second shirt, a polo shirt, backwards over his tank top. It was about this time I realized that the money for the landscapers was in his poopy pants from earlier, sitting in the washer. The landscapers I am sure thought it was very bizarre that he came to the door with 2 shirts on, one backwards, to pay them.
What happened next was a series of condescending profanity and threats toward me. He told me to get back in my room and stay there, through a series of terse profanity and putting his shoulders toward me in a threatening way. Always trying to be calm, I told him firmly he cannot speak to me like that. It never works, but I try. I think the hardest thing is dealing with the awful mean hurtful way he treats me sometimes and the horrible things he says to me, and trying to remember that his brain is shrinking and causing the behavior. How does one continue to be a caretaker, day after day, with the constant belittling, rude comments, and delusional thinking taking center stage?
UPDATE: Days later and he does not remember any of this behavior. I am sure it is somehow related to the extreme anxiety he experiences. Perhaps the landscapers were overwhelming. These blackouts are happening more frequently.
I wish I knew what caused some days to be worse than others. Some days my husband doesn't seem to be there at all. Last night was a blur of trying to sleep through him turning on the bedroom light, leaving the master bathroom light and fan on, and him trying to figure out how to put a blanket on himself. He seemed to do everything but cover himself with his own blanket. He tried to steal my blanket repeatedly and then bark at me when I needed it back. He pulled up the comforter that was folded under our feet and pulled out all the sheets. He managed somehow to get the top sheet pulled up the wrong way and slept (if he slept) like that. At one point when I needed my blanket back he raised his voice and said "who are you?" "I don't know you!". It's difficult to tell if he was serious or being a turd. Is he failing to recognize me?
This morning he had arranged for some landscapers to come to our home and straighten up our yard. They arrived at 7 am and didn't leave until after 11 am. This seemed to be very taxing and overwhelming to him. It's like my husband is struggling to try and be the productive man he used to be, and failing miserably.
Halfway through the landscapers being here, my husband had an episode of incontinence. Now, I am being brutally honest here, but this is our life. This is where things really started to go downhill. He yelled and cursed at me like it was my fault he soiled himself, the floor, the rugs, the smears down the bathroom sink. After I cleaned, sanitized, and washed everything I saw that he was walking around without any bottoms on. No underwear, no pants. He then went out to our pool and got in naked. Keep in mind the landscapers were still working on our yard. So I (walking on eggshells of course) asked if the landscapers were still around and he said no, they left. Of course, they had not left, nor had they been paid for the day.
Fast forward a little after I had convinced him that the landscapers were still here, and he walks into the house naked. This moment was terribly puzzling to me. He sat on the bed and kept picking up various articles of clothing and acting like he had no idea what they were. He attempted to put a shirt on as underwear. He put on an actual pair of underwear then put on a second pair before taking them off. He managed to get a tank top, socks, and flip flops on.... still no bottoms. While this was happening the landscapers were ringing the doorbell (because they were done and looking for the day's payment) and my husband was cursing and yelling at me to not get the door. Very stressful!! Still struggling to put on clothing, he managed to get a pair of pants on.... yay!...then put on a second shirt, a polo shirt, backwards over his tank top. It was about this time I realized that the money for the landscapers was in his poopy pants from earlier, sitting in the washer. The landscapers I am sure thought it was very bizarre that he came to the door with 2 shirts on, one backwards, to pay them.
What happened next was a series of condescending profanity and threats toward me. He told me to get back in my room and stay there, through a series of terse profanity and putting his shoulders toward me in a threatening way. Always trying to be calm, I told him firmly he cannot speak to me like that. It never works, but I try. I think the hardest thing is dealing with the awful mean hurtful way he treats me sometimes and the horrible things he says to me, and trying to remember that his brain is shrinking and causing the behavior. How does one continue to be a caretaker, day after day, with the constant belittling, rude comments, and delusional thinking taking center stage?
UPDATE: Days later and he does not remember any of this behavior. I am sure it is somehow related to the extreme anxiety he experiences. Perhaps the landscapers were overwhelming. These blackouts are happening more frequently.
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