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]

my dad experiences...

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]

als and demential

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]

als and dementia

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. :!: :-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.

 

[Katie C]

Wow Lee.. you just described our situation perfectly.. and used exactly the same words! While fighting to get some answers, I kept saying to people, "Either there is something very wrong, or he's just turned into a jerk!" For me, it's the loss of spontaneity and emotion.. If I get angry, he just stands and stares. It was much more infuriating when I thought he was just being annoying... in some ways it is a huge relief to be able to say "OK, he can't help this, so we'll just deal with it."

 

[lisaann1170]

This is an interesting conversation that I haven't yet had the emotional "nerve" to approach in my dad's situation. I'm dealing with the ALS diagnosis, but I've been wondering about dementia.

My dad's physical symptoms have progressed rapidly and steadily (in my opinion). I saw him in late April and he walked normally. May, he used a cane because of a limp/drop foot. June, he got a walker. July, I took him to see the 4th of July fireworks in a wheelchair. I should note that he doesn't use the wheelchair regularly; it's primarily for events that require walking more than a few minutes. He has bulbar symptoms, too.

I've noticed that he has become very forgetful. He's aware of it, too. (My mother gets so frustrated by it that she reminds him of his forgetfulness a bit TOO often!) He makes a point of noting when he DOES remember something. For example, he'll reminisce about his days in the military in the '60's or talk about his first job and he'll say, "See, I haven't forgotten everything!" When he and I talk about current events, I find that I have to share the same information repeatedly. He forgets that he told me about an appointment, or he'll forget the information that the VA gave him over the phone. Similarly, he has difficulty processing information. He was always a very bright person, but lately, it's a struggle for him to understand the insurance paperwork or the information presented to us about power of attorney. Granted, it's complicated stuff, but he would have been able to deal with it in the past.

This gives me something to consider.

 

[Gelthling]

Hi All,

I too have these issues with my mum. She also doesn't know she has been diagnosed with the FTLD as we thought why worry her anymore than she already is as her mum had Alzheimers and that would crush her even more. We notice it when she goes on a tangent and wont be swayed what so ever, or when asking questions for her superannuation about where she's worked etc she just shrugs her shoulders, or if I ask her where papers such as Tax etc are in the house, again I get shrugged shoulders - all stuff she would not have forgotten previously. If I get upset, she just sits there and stares at me. The other day I had a total breakdown tears and all in front of her (it had been a bad day as they told me her swallowing is much worse and she may need a peg sooner than later - but she wont discuss) and she didn't even bat an eyelid. Today she sent a text telling me she has Gastro again so "Don't bring the kids"! I don't want it either! I haven't seen her get angry - but she also cant talk. And she is emotional but not at unusual times, it just takes her a long time to stop laughing at something funny or stop crying at something she is upset about.
Definitely a roller coaster!