Mental confusion

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sydney6060

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Hi

My mom was just diagnosed 2 weeks ago with ALS and is progressing quite quickly. Due to some other health problems over the last 3 years (spinal stenosis being one of them) the doctors feel that the ALS was masked by this.
My question is that she has been suffering from confusion and although the doctors feel that it may be due to the meds she is on, I was wondering if anyone knows if this is a symptom of ALS? It is really hard to see her confused: she was a school teacher for over 40 years and always sharp as a tack. She knows us all but gets mixed up on details.
I am so appreciative of this forum. So much great and helpful info.
Thanks so much

Sydney6060 from Nova Scotia
 

Al

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Confusion is not a usual symptom of ALS but as the doctors say "Everyone is different" How old is your mom? It could be early onset of dementia which is quite common in the elderly or possibly early onset of Alzheimers Disease. I have met one woman who was young looking (I didn't ask her age) I would presume she was mid 40's that has ALS and appeared to be in the condition we are talking about. Might be a good idea to get a second opinion. Good luck.
 

Carol Deboer

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Hi There,

I agree with Al. Usually the mind stays sharp with als. However, maybe with all the meds, they maybe affecting her. Henry stayed sharp until the end. With age does come some confusion, not in all people, but with some. Hope you can get things straightened out with her doctor and maybe get to the bottom of it all. Good luck. Welcome to our little corner of the world. We really enjoy all new members and look forward to you joining us in the future. God Bless.

Stay Strong, Carol
 

dana

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My dad is 51 and has early symptoms of als. (the bulbar form) He also has confusion. He is a very smart man. He started a multi-million dollar business, always made business decisions, and now has been told by doctors that he should not be making any major decisions now due to the confusion. His confusion is more along the lines of forgetting simple things. For example, he might repeat a question after just asking it a few minutes before. Or, he might ask for seconds at dinner, and when you give it to him he says "no thanks...I'm full." We have noticed that his driving skills have gotten worse too. He has never been the best driver, but now he is running red lights and stop signs. The confusion is a tough thing to handle, especially when you are so used to them being the decision makers. Having his speech nearly gone is a tuffy too. But, I do feel blessed that he is still able to golf, walk around with my son, feed and bathe himself, etc. I try to look at the brighter side with this disease, but it is hard. My dad leaves tomorrow for a clinic in Colorado Springs, CO to receive treatments for Lymes Disease. The Mayo Clinic doesn't think that he has Lymes, but he did test positive from another clinic, so we will see if this works. Wish us luck!
Dana
 

Al

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Hi Dana. There has been a lot of information about Lyme disease posted here recently. Some of the symptoms are the same as ALS so if your dad had tested positive that may be a good thing if he has found a clinic to treat him. Keep us posted. Take care.
 

Timshelper

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I have to agree with Carol and Al on the subject of confusion. Since Tims diagnosis his mindset has become even stronger. Its like when a person goes blind there hearing becomes more acute. With Tim he knows what everyone is saying where he has left every little thing, what he has said what he needs from the grocery store. He has do this because he really only has himself to rely on. Actually before Tim was diagnosed his mind wasnt as sharp as it is now.That extra sense has now kicked in because its all he has left since his disease is progressing so rapidly.If there is confusion there could be an underlying problem or a side effect from a drug or even supplement. Just because we use alternative medicines DOES NOT mean we can not have side effects with them too. This is very important to know especially if we are mixing them with other RX drugs or alcohol.
Kim
ALS About Loving Someone
 

sydney6060

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Thanks for all the replies. My mom is 71, and the confusion has been in just the last week. The doctors seem to think it is the meds too, or possibly that she has had a small stroke, but Dad doesn't see any other symptoms with a stroke. It's time that she's seem to lost. Still thinking that I still live in New Brunswick (haven't since early 1990's), that my brother is still in college (he graduated in 1993). She knows my dad and everyone else including the nurses. Because it has come on so strong in just a matter of days I think it is the meds too. She has had to get shots for some pain in the leg. I think she needs to get home and out of the hospital. She's been there for 4 weeks now. Too long for anyone, but they won't send her home until they know for sure whats causing the confusion. They are starting by removing a pill at a time and see what happens. I hope the confusion doesn't last. At least we were able to talk and remember all the good times we had.
I'm going back to Sydney tomorrow to be with dad. I live outside Halifax and my brother is in Ottawa.
Thanks again,
Sydney6060 in NS
 

sydney6060

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:( Hi everyone.

Sadly my mom passed away on June 20. She had only been diagnosed with ALS 3 weeks before. The confusion I had mentioned had become quite bad: hallucinations, constant talking, not sleeping. This bad episode lasted from Thursday to Sunday. She was very paranoid, didn't want any men around her including Dad ( which devastated him), talking about Satan. It was just horrendous to see her like that. On Sunday she asked me my name. She had gone back into her childhood also. It was very hard to see her like that. She finally let Dad stay with her on Saturday. And then she seemed to come out of it on Saturday evening. But when we called the hospital on Sunday morning she was right back into it. We only spent about 5 minutes with her before she shooed us out of the room. And when we went into see her on Sunday night, she was so aggitated that we didn't stay. They were giving her resperitol (not sure of spelling) and Haldol and she was still quite aggitated. She hasn't had the use of her legs in over a year, and on Saturday she tried to climb out of the bed. She didn't sleep for over 48 hours and mom always enjoyed her sleep. Finally around 2 on Monday morning they got her settled down. My dad and I went up to the hospital at 7:30 in the morning and she was sleeping so peacefully. We were so relieved that she seemed to come out of the mess she was in. However, around 8:15 her breathing started to change, and finally she passed away at 8:35.
It was a complete shock. We knew the ALS was progressing quite quickly as the doctors feel that she had it for about 6 years. But we thought that we would at least have the summer with her.
As we promised her that there would be no more testing, or intervention of any kind we don't know what happened exactly. But her palliative care and family doctors seem to think that she may of had a brain aneuresym on Thursday or at least something seriously went wrong in the brain.

Everyone says that we have to have some peace about her death, as she didn't suffer the terrible ravages of the disease. She was still able to swallow without too much difficulty and still able to feed herself. She was supposed to come home the day after she died. The bed and lift had been set up by ALS Halifax, and she had been zooming around the hospital corridor in her new power chair the week before.

But it is still difficult. She was a smart, vibrant lady who taught grade primary for over 45 years. The mental state she was in is very hard for me to deal with. Some of the things she said and the way she acted was just not my mom.
Dad keeps telling my brother and I that we have to be thankful that she did go so peacefully in her sleep. I keep telling myself that but it still doesn't make things easier.

Anyway, thanks for taking the time to read this. I'm sorry it's so long, but I needed to get it out. I hope to take part in the walk for ALS in Sept.
I was wondering if the ALS society has those bracelets that people wear for awareness. (the ones like Lance Armstrong has). I would love to have one to wear.

Take care everyone and god bless.
Susan
 

Granny

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Dear Susan,
I am so sorry to hear about your mother's death. I know it must be hard to go through what you did with her dementia. It seems like that might not have been part of the ALS. Later on, you will be able to remember the good times with your mom and the great things that she did. If it helps, post here again and don't worry about how long the post is. As a PALS, I am helped by reading everyone else's posts, both happy and sad, and I will be praying that you and your family will find comfort in the fact that you did whatever you could for your mother, and that you have a loving family.
Take care of your Dad, and as Carol says, stay strong.
 

Carol Deboer

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Dear Susan,

My heartfelt condolences go out to you and your family at the sad passing of your Mother. You will miss her terribly. She sounded like a wonderful woman with many years of giving of herself to others. Carry that with you, always. She will live on in your heart forever. Again, I am sorry to hear of the sudden passing, however, she is now resting peacfully in the arms of her dear Lord. Stick around, we will try to offer you comfort and help to get through these difficult days. Stay Strong.

Love, Carol
 

Timshelper

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Dear Susan,
My prayers and sympathy are with you and your family tonight and the days to come. I am so sorry to hear what a terrible time for you and your family and your mother were on the last days of her life. Mental confusion and paranoia are such a terrible thing to watch and to go through so I am hopeful that is why God wrapped his arms around your mother and has taken her to be at peace. The ALS seems to be a secondary condition but that does not make it any less important to us on this forum. We will always be here for you anytime. I think your ALS bracelet is a good idea if there is such a thing I just got my Lance Armstrong bracelet today. Peace be with you tonight
Kim
ALS About Loving Someone
 

dana

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As everyone else has said, you are in my prayers. Death is such a difficult thing to deal with, no matter how you look at it. It is comforting to know that the suffering and anguish is now gone for your mother, but then comes the selfish part of you all missing her terribly. I dread having to face either of my parents passing away, but I do know that it is in the Lord's hands. I pray that you will find peace soon, and that the hurting you feel will be replaced by the happy memories you have of your mom.
Dana
 

sydney6060

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Thanks so much for the kind and helpful words. Mom had a tremendous amount of faith, and I know that she is finally at peace. She struggled a long time with her health. She had spinal stenosis surgery in 2001 and things just went down hill from there. She was determined to get some upper body strength and was at the YMCA in April using weights, pulleys, and going around the gym in her wheelchair. This was before we knew the ALS diagnosis. Everyone was surprised that she wasn't making any progress. Of course, we now know why. She was 71. Young people at the Y were amazed with her.
My brother left Dad in Sydney yesterday to go back home to Ottawa. When I spoke to Dad last night, he sounded down. (I live outside Halifax.) He said that it seems that people have stopped calling and visiting. But he realizes that people have to get on with their lives. He did attend a berevement session at the hospital on Thursday and he is looking forward to the next one. He may even volunteer at the hospital he said.
I'm so glad that I can come here and get some peace about things. It helps so much to read what other people are going through and that we all suffer the same things.

Take care and God bless
Susan

"The song may be over, but the melody lingers on!". The quote we are putting on her headstone.
 

Al

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Susan I am so sorry to hear of your mothers passing. It is never an easy time whether it is expected or comes on suddenly. Keep in touch with your dad as much as possible. The friends and family usually do stop calling after a few weeks. Sometimes because they are getting back to their own lives or sometimes because they just don't know what to say. Try to keep him interested in something. It won't take his mind off things completely but it is good to have something to focus on.
I'm not sure if the other provinces have adopted a bracelet design but ALS Canada has a really horrid white one with purple writing.
ALS Ontario has the Lance Armstrong style in the purple color of the top of the forum here. The logo is HOPE 4 LIFE and it has www.alsont.ca on it as well. You can contact them for some or your brother may be able to get them or send me a private message with your address and I'll send them to you. They are $5 each.
They are made of silicone and may contain a bit of latex for the allergic type's information.
I haven't taken mine off since June 11 and shower with it on and it is holding up well. Take care.
Al.
 

sydney6060

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Hi Al

Thanks for the info about the bracelets. I emailed the ALS society here in Halifax and they do have the bracelets and also the Blue flower seeds. I am going to get some from them.
I appreciate all the replies about mom. It truly does help to be able to talk to other people about it. I was worried because I haven't been crying as much as I think I should, but today the dams opened and I let loose. Her birthday is on Friday and I know that will be hard.

Take care eveyone,
Susan
 
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