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isabel

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my mum has als, she cant mover her body at all and she has started to lose the ability to talk. the prospect of losing her speech is triggering puzzling behaviour in her that are completly out of character . Fear,anxiety, horror show on her face, sheś become incredibly suspicious of everyone around her , including her own children, she lashes out and screams at people when we cant understand her wishes.
She is 72 now and i think she is rapidly slipping into dementia. Last night, she called me every five minutes to adjust her pillow, to give her a drink of water, to adjust the position of her feet , hands , head etc. Being exhausted i decided to take a nap and she didnt stop calling for me for a full hour, saying that i was a bad bad daughter. I tried over and over to reason with her that all her needs have been adressed and she could peacefully go to sleep now, but she wouldnt believe
me. On top of that , and out of sheer desperation and helplesness she screams and shrieks and that is really revealing of the amount of suffering she is going throung.

I am a at loss about how to help her at this stage. Could anybody give some advice? it is horrendous seeing her like that, only two years ago she was still in the kitchen cooking to have her kids and grandchildren over for lunch. please, dont offer me prayers, i am european and i think only good, positive behaviour advice would be of some use.
thank u.
 

Katie C

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You need to talk to her doctor as soon as possible and describe what's going on. Keep notes between now and your appointment with what happened, what time of day, etc. It sounds like she is worse in the evenings... this would be consistent with dementia. I would think some anti-anxiety medication and quite possibly some anti-psychotic medication could help your mom immensely!

Keep in mind that if she is developing dementia... especially if it's FTD... there could be hallucinations involved as well as the loss of how to properly process sensory input. Glen was convinced we had the blue cat people from the movie Avatar living in our attic, that one of the young ladies from church was being assaulted, that there were creatures living on our roof. Now imagine having these thoughts and not being able to clearly express what you're seeing/hearing. I'd scream too!
 

Katie C

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Oh... another suggestion.... I found that if I sat for a while with Glen with some soothing music playing ( I downloaded a lot of lullabyes onto my phone!) he would actually fall asleep, but that if I just said good night and left the room he would lay there stressing or try to get up, leading to falls.
 

isabel

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thank you so much Katie, i have never heard of FTD and it was comforting to tell my siblings that that could be the cause of her irrational demands on everybody. She is on one antidepressant and on one antianxiaty medication. Paliative care team have alread told sth about haloperidol. have u heard of it?
thank u so very much agaiin

isa
 

Katie C

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It's an anti-psychotic and could be very helpful. Work closely with them on getting the right balance of the psych meds. We had to lessen the antidepressent when he started the antipsychotic (in Glen's case, Seroquel). Also, he started with a very low dosage but we increased it several times to get to an effective dose. Good luck! The new med should help.

Also.. if you go to the UCSF website there is a lot of information on FTD
 

rinaric15

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it happens sometime the situation we can't handle even not to think proper what to do. As you mom suffering with ALS and other ailments letting her down . Don't waste time at all go to get the doctor place emergency appointment. Not just thinking to scream, it is just one hard time you would handle and will show your power to cure.
 

SherylJ

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I understand what you are going through. My husband will turn 60 in Feb., he was diagnosed with ALS last year. He is experiencing anxiety, depression, anger. His memory is about gone. It is very frustrating for him, and for me. He believes that his family is taking things from him if he can't find them. He has taken to hiding everything, then forgets where he put them. His doctor has put him on Serequel, it is prescribed for bipolar disorder. It does seem to be helping some. Problem for him is he forgets if he has taken his meds or not. It is a balancing act. I would encourage you to look into something that would level out the mood swings (it also helps in the sleep dept.). I hope this little bit helps for you. It's really hard to know what to do for them. Good luck to you. Sheryl
 

SherylJ

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Wow! These symtoms certainly fit my husband who was diagnosed last year. They did put him on seroquel just recently, apparently used in the treatment of bipolar disorder. It has seemed to help, and am hopeful that as his body adjusts to the meds, he will have his moods leveled out.
Sheryl
 

Katie C

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Sheryl...quick tip for the meds: Get a pill sorter. Sit down once a week and sort the meds by day. If possible leave out one day at a time, hide the rest. Then you'll have an easy visual of if he has take the meds or not. The seroquel is an anti-psychotic, also prescribed for schizophrenia. Glen's psychiatrist told us they typically start an FTD patient on a very small dose then increase. We increased fairly rapidly until we got to a dose that worked. Also, is your husband on an anti-anxiety med like Atavan? That could help a lot with the paranoia.
 

isabel

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Muy mum is dying right now.she has been trouble breathing for a few hours now.she es at home ,doesnt want to be taken to hospital but, but she moans continuously and her breathing is very laboured. What can i do to relieve her suffering
g?
 

ottawa girl

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I am so sorry Isabel,

Do you have hospice? Will she let you call 911? She may have pneumonia or something else which is treatable.

If she has told you her wishes, abide by them. Try to keep her comfortable with her meds- but unless (in my opinion) a trained medical person has seen her, maybe something can be done.

Again, i am sorry I could not be more helpful in your time of need. I will say a prayer for your family.
 

Katie C

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Isabel.. my first question is the same.. is she on hospice? Call and let them know what's going on. They should be able to adjust her morphine/atavan to make her more comfortable.
 

isabel

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We did exactly what you said , we called 112 (Spain emergency number) . They eased their breathing on Wenesday night. The paliative care team arrived on Thursday morning and they started her on the morphine. Monday already and she is still here, hanging on.
What exactly is hospice?

I really appreciate what you are doing for me, at least i have the peace of mind of knowing that is the right thing.
Isabel
 

Katie C

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Isabel... hospice is the American term for palliative care... essentially "dying with dignity". It sounds like calling the palliative care team was the exact right thing, and I'm so glad to hear your mom is more comfortable! Do remember to try to get some rest yourself.
 

isabel

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My mum passed away 19/11/2012 at 20.45.
I was kissing and stoking her forehead when she finally didn't exhale any more. I had been at her bedside since Wednesday,the day she started to slip away. I remember holding her warm hand day in day out, kissing her, talking to her. She would open her eyes from time to time and i'd whisper, look mum this is isabel and the rest of your family is all around you.
My son came on Friday evening to say good bye, he is eleven and was very brave, he stubbornly repeated he needed to say bye to her. He kissed her on both cheeks and presented her with her neck so she could kiss him back, he got no more kisses back.
I can't believe she has gone forever, i still expect the daily phone call in the evening to check on us, when i drive past her house i am amazed the lights are not on, I can't rely on her cooking for me because I didn't have time to get some groceries for the following day, I can't cry on her shoulder, I can't share my life's stories in full detail with her, I can't give her a quick ring to find out about this recipe or another, there will be no balanced mediator between my siblings and me when we squabble ................................. Yes, she still was THE MOTHER, for the three of us. Her name : TRINIDAD ENRÍQUEZ BRONCANO.
I LOVE YOU MAMÁ.
 
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