What to do?

[Pat dog]

Mum was diagnosed 12 months ago. Since then she has been in denial and talks about wanting to die. That's just one issue. She has always been a negative and manipulating person so the least I saw her the better our relationship. So is there anybody else who has a difficult mother who also has ALS/ MND?

She has been living with me and making feel miserable. I treat her with dignity and respect. My son says I should kick her out because of the way she treats me. The other issue is I' m caring for her but I'm also disabled and live with chronic disabling pain. Looking after her is making my pain worse. I need to say that for 8 years I couldn't walk without an aid and spent most of that time in a wheelchair. I went through periods of not being able to dress myself, struggling to eat, really struggling to do most everything. I know ALS/MND is much worse than what I went through but I understand somewhat about the struggles. I have always tried to find the positive in the most difficult situations.....which is the opposite of my Mum who finds the worse but she is suffocating the goodness within me.

Mum doesn't want to know about what her future hold, she said she would rather starve than have a peg tube inserted. She would rather fall than use inside walking frame....she wants to fall and hit her head and hopes it kills her. She has various aids but won't use them but then complains when she can't to a task that would be easier using the aid, eg has an aid to help with turning taps but won't use it but then yells and swears blaming me for turning the tap to tight!

Some days I just feel so empty. I was told by professionals not to leave her unattended so every day I have to be around to watch her. Is there anybody else in a similar situation to mine?

 

[Janie H]

I am so sorry for your situation, sounds like your mom needs medication and fast! No one should have to be abused, sounds like she is not in the mindset to appreciate someone who is willing to take care of her. maybe you could get something from the doctor and put it in her food since she probably wouldn't take it. I feel so bad for you because there are people out there with this disease that don't have anyone who cares. I would take her to the doctor and speak with them alone.

 

[zoohouse]

Pat I am so sorry about what you are going through. I also have an extremely negative mother, but she does not have ALS. She lives on her own, and has 5 grown middle aged daughters, and we do a tag team effort to visit. I have to admit that is one positive thing about my husband having ALS, as I can honestly say I am too busy. She does need a lot of help, but no matter what is done for her she complains about it. I am very thankful to have my sisters, as we can joke about it with each other. It is hard enough to do the intensive care that a PALS has to do, with someone who never forgets to say thank you, and I love you, I don't know what I would do if that person was like my mother. I will be praying for you. On my wall I have a decal that says.............

I can do all things through Christ Jesus who strengthens me.
Phil: 4:13

Paulette

 

[Atsugi]

Through the years on this forum, I have read that some PALS have been very destructive of their families. No one talks about that much, but it happens.

Pat Dog, I do understand your situation, because my mother was a complete narcissist with nothing good to say about anyone, She literally stayed up nights planning to make other people miserable. Then she got Chronic Heart Failure and refused to help herself, so I made her meals, sat with her, and helped around the house. My reward came when she called the police to investigate me for elder abuse and theft!

At some point I had to say that she made her own life miserable, and was attempting to make my life miserable as well. Eventually I realized that she was a grown woman, and she was the one responsible for her life, not me. I could not let her destroy me as I have kids to look out for. As she could not care for herself, we had her committed to a long term care facility, and we visited her until she died.

Your mum is a full grown adult, so you might stop caring for her and let her live her life out as she chooses. Or you might have her committed to a care facility against her will, and let professionals assist her. Or you might simply take care of her as you can stand it, letting her cope with her illness half the time while you attend to the rest of your own life half the time. Either way, I personally would support you. You've done plenty for her, you'll do more, I'm sure. It's a shame she has a fatal disease, but don't let her bring you down with it.

 

[Pat dog]

Thank you all for your support and kind words. I've have told every Doctor who treats Mum that she is not coping well, shows sings of depression and talks about wanting to die. Have also told them all how hurtful her words are at times. Nothing has happened and I feel let down by them all. One Doctor gave me antidepressants to take and I'm thinking why are they treating me when I trying to get them to address my mother!

The psychological/emotional support is just as important as lung function test results, measuring muscle loss and swallowing reflexes. Mum was once offered to see a neuropsychologist but she refused the offer.

Thanks again

 

[SMP51]

Atsugi gives good advice

 

[MaxEidswick]

you may also want to familiarize yourself with ftd.

http://www.theaftd.org/frontotemporal-degeneration/disorders/ftdal

 

[lgelb]

"...she is suffocating the goodness within me."
"...I have to be around to watch her."

Clearly this is not a good situation for either of you and both of you are suffering in your own way, so I would try to find her another place to live, though I don't know what the options are in Australia. I have a minor league version -- my husband has never been a Pollyanna and rarely feels real happiness any more. Then again, he has been ill his entire life. Still, without our son here, I could not stay. If you don't have a third person around, I don't think it will result in anything but more suffering.

Sorry to be negative. Meanwhile, hug yourself for the good work you are doing in extreme adversity, sip some wine, listen to some music, watch the sky.

 

[tinyandme]

I agree, perhaps long term care would be best. No one wants there mom in a "home" but if you can't take care of her and yourself something must be done. If it changes her outlook she can always come back home. Were not the prisons the media makes us out to be. There are some really nice centres w great staff who care. Good luck!

 

[Pat dog]

I have shown Mum a few Aged Care places but she doesn't want to be around "those old people", mind you she's 80. Had a bad morning listening to her saying " let me die, someone kill me, I want to die" over and over again. She was struggling to get dressed. I asked if she needed help but was told no. She is still able to walk, dress and feed herself.

She is just so negative on everything she can't do instead of embracing everything she can still do. I know I can't expect her to to find something good and positive, I know it's her journey....not mine. But is she entitled to make everyone around her feel as negative and miserable as her. I'm really worrying that after this disease has ended her life will mine resemble anything like I had before she started living with me.

 

[Barbie]

Pat, I hate to say it but I think you need to disengage from your mom. You are not forced to take care of her and she sounds like a miserable person. give her a deadline-- you have two months to find another place to live, period. if she doesn't like the aged care homes then she can get an apartment and a caregiver. you will have to be tough and hard hearted because she will try to make you feel guilty. do in now, while she can still get around and help herself.


I would preface the discussion with letting her read this entire post.

the thing is, this is not going to get any easier physically or mentally on you. have your son stand by you when you give her the news. you will need someone on your side because she is going to be very angry and try to guilt you and make excuses for her behavior and you do not want to give in.

good luck!

 

[MaxEidswick]

I agree with Barbie, but I would add/suggest you get her to read the CALS 'pity party' thread to better understand the real situation. ...