My step mother was dx about two months ago. Her symptoms started Dec 2008 with losing her voice and progressed very quickly. She still trys to communicate verbally and my dad can pretty much understand what she wants.
My question is...She has always been a very kind person, but is now saying things very out of character and cursing at my father all of the time. Could this be a symptom? Perhaps it's frustration and fear?
Today she has made the decision that she wants to go to a nursing home, but her children are fighting that(money) which I feel is very cruel. However, I'm just the step daughter, so I can't say much.
Firstly agressive behaviour has nothing to do with ALS. Most of ALS patients experience uncontrollable crying or laughing seizures but that's it.
So your stepmothers situation is due to her mental state.
Caregiving to an ALS patient is really a very hard task. Especially to the ones with bulbar onset like your stepmother. Bulbar onset ALS strikes suddenly and it's progress is usually very fast.
We always advice ALS patients to stay with their family. Family atmosphere is really important for patients.
Try to convince her to see a therapist. Strong anti-deppresant medications would be helpful.
Also at least two of the family members should get a brief course about caregiving.
Thank you, very much. Your suggestions are very helpful.
Things have been a bit better the last few days. The family has really come together to be with her and that has lifted her spirits. She still says she wants to be in a nursing home. One day at a time.
Thank you again for your support and suggestions.
Sheila
Dealing with ALS is an incredibly hard task for relatives. It's really hard to keep the spirit high as all of you know what's ahead.
I will tell you some of my experiences. Being kind to ALS patients is important but being very understanding and strong emphaty sometimes does not help. OK, she is ALS and you have certain responsibilities. But she has to be aware that she also has responsibilities to the family members who take care of her.
ALS support groups are great. Seeing ALS patients with high spirits really helps. There are a lot of ALS support groups. They share experiences, they talk, sometimes meet and care for each other.
This groups will help her caring about someone else. This is extremely important.
Keeping her mobile and taking her to family and other community activities is really important. Always staying by her side at home helps a little. But main goal is mobility outside home.
And small party's help to keep the spirit up.
Hope these advices will help. And feel free to ask if you have any questions.
While I can understand that the family may not want her in a nursing - for whatever reasons - they should remember that it is HER life and HER death and she has a right to do it however she wants. They should find a way to do this if that's really what she wants.
Thank you all for your kind words.
My step-mother is now in a nursing home. She decided late last week that it was time and that she would feel more comfortable. She was beginning to get very nervous that she was going to fall and get seriously hurt. I agree with her decision. She still has her moments of frustration, but all in all she seems to be in better spirits. Since she's been in the nursing home, there has been quite a bit of humor and she's joking and laughing a lot about the silly things that go on there.
In the last 10 days her condition has gotten worse and she is no longer able to walk or speak and she is also having difficulty writing. Does anyone have any suggestions on communication once she is no longer able to write. We would like to discuss this with her now while she can still ask questions(write) and get everyone prepared in advance.
When my dad lost the use of his arms/hands and speech, my sister made a chart with the alphabet and numbers. she would guide his hand over the chart and he would move a finger slightly over the letter. this was his only way to communicate with us. i hope this helps!!
My step mother was dx about two months ago. Her symptoms started Dec 2008 with losing her voice and progressed very quickly. She still trys to communicate verbally and my dad can pretty much understand what she wants.
My question is...She has always been a very kind person, but is now saying things very out of character and cursing at my father all of the time. Could this be a symptom? Perhaps it's frustration and fear?
Today she has made the decision that she wants to go to a nursing home, but her children are fighting that(money) which I feel is very cruel. However, I'm just the step daughter, so I can't say much.
My mother has been dealing with ALS for just over a year now. She is also a very kind and loving woman, however, she too has had a change in her personality that includes the use of language and gestures that have never been used in my parents’ home before.
The depth of the sadness, frustration, and heartbreak is beyond anything we can try to imagine. She can no longer speak and I feel like using this type of communication helps her vent and feel heard.
The very worst thing anyone can do is to treat her as if she isn't mentally sharp, speak for her, speak to each other as if she isn't in the room, etc. She needs to be heard and feel like people are discussing their feelings, the disease, and any decisions (big or small) directly with her.
We try to laugh and keep things light for the most part and that includes making funny comments about the four letter words...depending on the situation, I like to say "what would the ladies at Sunday School think"...she usually follows that up with the middle finger. I think its ok for her to express herself. She has lead a life of a spiritual woman who has complete faith that God is in control. I'm glad she knows that a few colorful moments don’t take away from that for a minute.
As for the rest of the family that probably is dealing with anger and denial (and perhaps selfishness), contact your local ALS chapter. They will provide you with a social worker who can come to your home and act as an advocate for your mother-in-law.
Thank you all for your kind words and suggestions. This board has been most helpful. As a step daughter, of a woman with the sons, I had to sort of be on the sideline throughout most of this. The decisions on her care are out of my control and in fear of stepping on very sensitive toes, I've kept my opinions mostly to myself. I know that everyone can only do the best they can under these sad and frustrating circumstances. My sisters and I have felt all along that our role was to support dad and to make my step mothers days as comfortable and joyous as possible.
Step mom is now under hospice continuous care and they tell us it is only a matter of days. She is at peace and is ready.
Thank you all again and I'll check back often to see it I can help anyone as much as you have helped me.
Bless you all
