How much of Dad is still there?

[KinzaDAF]

My Dad doesn't seem to be too "with it" most of the time. He gets "confused" about things, like what day it is. For example, he went out to the car and was ready to go to my sister's for Christmas Eve, BUT that was FOUR DAYS AWAY! He has done things like this on more than just that occasion. He cannot speak and refuses to use any kind of communication device. ( It takes a lot of persuasion to SOMETIMES get him to write SOMETHING on a white board but this rarely happens. ) I know it is difficult to sort out denial and depression from dementia but I think he has not been "right" for a long time. He never seemed to grasp the seriousness of his diagnosis and refused to do his speech therapy exercises early-on, as well as just looking at us blankly when we had a speech machine that we were trying to show him how to use. He just kept trying to talk to us, no matter how many times we told him that we just couldn't understand and could he PLEASE write down what he wanted to say. He denied having any shortness of breath ( SEVERAL times ) at the doctor's, even when he very clearly was having difficulty, after which he got his BiPap ). The few times we have succeeded in getting him to write something on his white board ( and ONCE on a computer ), he'd write something and then erase it, seeming to want to get things "just right". What happens is, a word or two will be "clear" ( readable as an actual word ) but then others will just be a mish-mash of letters, not real words at all. What is it that is so "off" in his brain that he will write "nonsense" as though they are words? Is some of his unwillingness to write because he "knows" he cannot write "real" words? This has been going on since last February. ( When he was diagnosed with bulbar palsy, was having a lot of trouble speaking and swallowing. ) Dad seems to be decling fast. That he refuses to communicate has been very tough on my mom. There are "moments" when I think Dad understands what we say to him but most of the time...he seems confused and just can't seem to grasp what is happening. ( May be a blessing in a way? Sigh. ) He wakes multiple times during the night, having to use the bathroom. He refused using a urinal. Mom was at the end of her string. Dad didn't ( or couldn't ) see it. Now an indwelling catheter has been put in so that Mom can ( hopefully ) get some sleep. Those who are familiar with dementia and ALS. please help explain to me what is going on. We are all so sad.

Debbie

 

[brooksea]

Debbie,

I'm very sorry about your dad. I cannot offer you any advice about the dementia, although it does sound as though he may have it from your description. Your mom is an angel and I hope she can get some peace. Has he been evaluated at the clinic for dementia? Sounds like she may need to call them and perhaps have hospice help out. Has she had any respite? The ALSA may be able to help in that regard.

 

[serenade]

Debbie,

I am so sorry that you are all having such a difficult time. I hope your mom will accept some outside help and not wear herself out.

Keeping you in my prayers
Judy

 

[Blubear]

Hi Debbie, I am familiar with dementia. My aunt who I visit in a nursing home for people specifically with all forms of dementia has that same communication problem. She has her good days and her not so good days when it comes to confusion. Both my mom and I think that she knows what she is trying to say but it just gets garbled up when she goes to say it. She just turned 94. I would suggest you get him to the doctor to get this diagnosed. Having ALS and dementia would be extremely demanding on you and your mom, and it would be good to know what your options are in the way of getting extra help etc... I dunno, if I were ALONE and had ALS, this is the way I would want to be (just to out of it to know what is all going on), but I wouldnt like it if I was putting extra stain on my family. Good luck hun!
Hugs, Kari

 

[mare]

Debbie-

I have no experience with FTD, only what I have read.
I do have experience with Alzheimer's, as my FIL had this for 10 years before he died.

I am not diagnosing, or saying he has this or that. But, as I read your post I thought that is exactly like my FIL.

He too had difficulty knowing the day/date in the beginning. Forgetting things- we at first explained "he's 75 and still working; I forget things!"
As it progressed, when out to dinner, after "holding the menu" (note that I didn't say reading the menu) he would say "I'll have what she's having" (meaning my MIL). The family thought that was sweet- I thought he's not reading the menu, why?

Eventually, he could not write either. when asked to sign his name, he would start & maybe get his first name down, but could not finish his last. This is common with ALZ- expression in all forms- speaking, writing.

He also had the "denial" thing. (which wasn't denial like you think). He was in the hospital with pneumonia; when family came to visit he would seem fine, but as we left to leave, he would attempt to get up & come with us. On explaining that he was sick, he would say, laughing, "no I'm not". It was not denial, he was not aware of what was going on.

The difficult thing about dementia, especially when it first begins, is that the person goes in & out of reality, so to speak. They can be lucid & fully aware one day, and really off another. Even at the end of my FIL disease, when he was totally incoherent all the time, he had one night when my MIL said he was so coherent, they stayed up all night talking & reminesing about their life and family. He was 85 at that time! She knows that was a gift! He died 2 years later.

I don't know if your Dad has ALZ or FTD; I'm not sure if it is important to put a label on it. I would discuss this with his family doctor. It might have impact on decisions that have to be made.

My best to you & your family- this stuff is so hard!

 

[KinzaDAF]

Thank you everyone for your replies. My mom has been Dad's sole caregiver though I HOPE she will begin having someone come to the home to help her this week. ( She contacted an agency...they are "looking" for a nurse/caregiver, hoping to have someone start this week. ) Only four weeks ago Dad could get around using a walker but now he can barely hold a half-standing position ( when lifted up by a gait belt ) and make the tiny pivots he needs to so that he can move from wheelchair to recliner or chair to commode. The physical work involved is very hard on Mom, as has been the waking up 6 or 7 times a night to help him to the commode. ( This latter problem *should now be solved since Dad had the catheter put in. ) Mom has been reluctant to call in help, I guess feeling she should be able to handle things herself, but she is finally at the end of her rope and has called an agency. ( Dad is 79 and Mom is 77. ) Which ( if it matters ) doctor should we ask to check out Dad's mental status? ( Family doc or ALS doc ? ) Knowing Mom, I bet she'll tell me that she doesn't think there is any point to having him evaluated. Sigh. What could I say that might persuade her to ask the doc about Dad's mental status?

Debbie

 

[Katie C]

Debbie... what you could perhaps say is that the doc may be able to give your dad appropriate medications to help his mental status.. they won't bring "your dad" back, but might help him be less agitated and maybe happier.

The lack of understanding of his condition is classic FTD.. and it's frustrating as h - e - double toothpicks! Glen can be choking on a piece of food and putting more food in his mouth at the same time. He is actually capable of eating most anything so long as he eats slowly and carefully. But that doesn't happen, and so we spend days listening to him cough.

For a truly clear explanation of FTD I recommend this page: http://www.webmd.com/mental-health/dementia-amyotrophic-lateral-sclerosis


Maybe letting your mom read it can help clarify some things. Glen takes a combination of anti-psychotic, anti-depression and anti-anxiety medication, monitored by a very caring psychiatrist. It took some pushing on our part and the part of the neurologist (a saint on earth) to get us to this point. It's not perfect.. but it keeps him more functional. Good luck to you, and feel free to e-mail or PM any time if you have any other questions.

 

[mare]

Debbie-
Boy, this stuff is so hard, isn't it? Any of us who have had to deal with this with our parents knows & understands your frustration in this matter.

But to answer your question, I would say start with your family dr. because presumably he /she would know your Dad more if they have been patient/dr for a number of years.

 

[Ellamay]

I found this article and it helped me understand Tony's FLD.

 

[Katie C]

There is a similar FYI from ALSA that is aimed towards patients/families.. it has a little less of the study information slightly more practical info. If you go to the ALSA website and do a search on FTD you should find it.

 

[Ellamay]

Katie,
I was unable to find the FYI that you spoke of.. .. I did get this PDF FYI from ALSA website but was unable to find one more suited to families and caregivers. I did give this to his dr and other caregivers for better understanding of FLD.

 

[irismarie]

so so sad.
Send you love

 

[Katie C]

Ellamay.. this is the link: http://www.alsa.org/files/cms/Resources/Cognitive Changes(1).pdf

If it doesn't work, go to alsa.org and search for cognitive changes a guide for families and patients

 

[Ellamay]

Thank you so much KatieC
It worked..

 

[Cereus]

Hi Debbie and all on this thread,
My husband (61) was recently diagnosed with bulbar onset and dementia. Debbie, I'm sorry you are seeing this in your dad too.
Katie, thank you for the link. I'll use it to educate those around us. I've found that almost all of the ALS info we have received so far completely ignores those who also have cognitive changes. It makes a huge difference in managing the disease and decision-making. After 3 neurologists, I'm hoping #4 will address both diseases. Do any of you know if there is a group or place on this website for those of us in the same boat?
Thanks,
Paula