als with dementia...question

[beccag]

hello everyone,
becca here...i am wondering if any of you care for someone who has als that has caused dementia. my mil has this and i am interested in learning from your experience.
she started w/leg issues, then hands etc...now, she recently was in the hospital due to a small bowel obstruction.. that has resolved but since the hospital stay she has lost use of her legs...she can't move them anymore. her swallow eval seemed okay, and she is not actually on bipap yet.....our concern is whether she might plunge downhill. it seems with this disease, with her anyhow, new symptoms appear with just slight recognition, and then, they suddenly get much worse, and it is shocking .i wonder if the involvment of the dementia is speeding the process......
reading this forum i have seen that many of you have experienced no real gradual decline patterns...most seem like large sudden changes and it is alarming. any info you have on als that is linked to dementia would help us.
thank you and my best to all of you.
becca

[beachbaby]

I have noticed that my dad forgets little things like times that I have called him or conversations we've had he seems to forget that we already had that discussion. My father is progressing rapidly. He was diagnosed five years ago, but it seems that every week it gets worse. It's different for everyone though.

[theo541]

My sister shows some signs of dementia. She was diagnosed in April 2008, and she has gone downhill very, very quickly. A month ago, even though she was slurring her speech and had some difficulty walking, she was driving herself and walking with a cane. Last week she could use the walker to go to the bathroom; now she need to go in the wheelchair. As for the dementia, I'm not sure if it is caused by the disease, the fact that she barely eats and has refused a feeding tube, or the lithium she is taking.

[leegardens]

My husband was diagnosed March 18 with bulbar onset ALS and frontotemporal dementia. Due to his breathing problems he was put on the bi-pap at night immediately. Some days we deal with ALS, some days it is the dementia, and sometimes its a double whammy day.

Looking back to when he started having slurred speech in October of 2007, I was really aggravated at him for being selfish, now I realize that his behavior was due to the dementia. He would be mean and uncaring if I said my feelings were hurt. He would laugh at me if I said I was upset. I was really mad at him and we've been married 38 years. When you're married that long you really know the other person well and it takes a lot to get upset. Well I was angry, embarrassed, and hurt by some of his remarks and behavior. When we got the diagnosis I actually felt better knowing there was a reason for him being a jerk.

Now I know that the FTLD is behavior based- problems with judgment, and unexpected laughter or tears. I also find that he gets really stubborn about doing things or taking advice that would help with his health. Definitely there is memory loss, he forgets where I was born, forgets what he said, forgets what others tell him. He has periods of confusion. He repeats himself a lot and we have the same conversation more than once. My PALS has hit me a couple of times in the last eight weeks. My dad died at the age of 83 with dementia. He was ill for four years before he passed. One thing I learned from that experience was that you take it day by day. Sometimes you have a good day or a good hour. Then it can go downhill; then it can be good again. It is an emotional rollercoaster. Having experienced that with my father makes it easer to deal with my husband. I don't have false hope but I just enjoy it when things are good. Don't hold a grudge when it is a bad time because your PALS doesn't mean to be that person. I do find that the dementia aspect can get in the way of doing what is best for an ALS patient. He gets stubborn about the wrong things. I am concerned about taking care of him when the dementia gets worse.

Back to your question, except for the breathing issues, currently I am not noticing a rapid change. I think we are in a plateau. Of course tomorrow it could be a different story. My husband knows he has ALS, he doesn't know he has dementia. I see no point in telling him at this time. Because he is so self absorbed and selfish due to the dementia, I do not think he is suffering as much emotionally as does the average PALS. We went to an ALS support group meeting here in Atlanta and a brother and sister who care for their brother told me after the meeting that they could tell my husband has dementia and that they thought it was easier emotionally than what their brother goes through. I am taking that as a good thing with this dreadful disease. So it is harder on me maybe, but it is easier on him.

Lee

[fiddleplayer51]

Wow, Lee. What a great answer! Thanks for spelling it out so clearly. I'm sure it will help many CALS.
I hope you have more good days than bad. :cry: :!: :-D
Jane

[ZenArcher]

The laughing, smiling or crying at inappropriate times is more than likely emotional lability not FTLD. Although FTLD can effect everyone differently emotional lability occurs in many PALS with bulbar symptoms. I smile like a fool at inappropriate times. I know I'm doing it, I know I shouldn't be but there's nothing I can do.

FTLD tends to make more pronounced behavioral changes such as people who were once shy become outgoing or vice versa. Do a search for Pick's Disease.

[judylyne]

My husband had the dementia and he never got angry or demanding. He got forgetful and confused about directions. He disease progressed rapidly but everyday he made sure he told everyone he cared about how much he loved them.