Mom has "given up"

[Kim C]

Mom was diagnosed two weeks ago. She was fairly advanced at diagnosis. She is basically an invalid, can walk a little but she is a high fall risk. We're in process of procuring a wheelchair. She has a very limited use of three fingers on one hand. That's about it. Otherwise there is nothing she can do but sit. She is 80. She has basically "given up" and I really can't blame her but I don't know what to say to her when she sits and cries and tells me how useless her life is now and how she wishes she would "go on". She is quite depressed but won't hear of medications. She can barely eat because she can't grip the utensils despite us getting adaptive utensils. However she won't hear of being fed. So any advice or encouragement would be appreciated.

Kim

 

[vickim]

Kim

I am sure your mom is still in shock and she is grieving her losses. It is a process everyone here as had to face and everyone takes different amounts of time to come to terms with their situation. If she is a religious person you could have a spiritual leader come for a visit or family and friends visit to remind her how loved and important she still is. There is life after diagnosis. I am so sorry you have to go through this. I am sending cyber hugs for you and your mom.

 

[Kim C]

Thanks Vicki. Right now we're having trouble finding "life after diagnosis". I appreciate the cyber hug. This is really hard.

Kim

 

[vickim]

You will have trouble for a little bit, its only been 2 weeks. It is hard on everyone. Just remember you are not alone.

 

[pearshoot]

would she use a straw and a good health drink? I have mixed my own health drink for 3 1/2 years and have held my weight. doping this requires fiber drink also.

 

[TGB1]

Hi Kim, I am so sorry to hear about your mom. My mom is 86 and was diagnosed in 12/2012 with bulbar onset als. She can't talk, can't eat, but is still pretty strong and walking around. Like your mom, she does not have much will to live and gets little joy out of life. We don't go out anymore because she gets tired pretty easily, and she just feels too conspicuous with her lack of speech and frequent drooling. I read these forums everyday but I just don't post that much anymore because in my mind, this disease is a completely different ball game for people in their eighties than it is for younger people. My mom has seen her kids grow up, she has seen her grandkids and even a couple of great-grandchildren now, she is tired and ready to go. She shouldn't have to come to the end of her days with this horrible disease. My mom did agree to a peg tube because she can't swallow anymore, and she is in the process of getting a bi-pap for if/when her breathing becomes an issue. But even getting her to use and understand these devices is a chore. I mean absolutely no disrespect to pals who are younger than my mom, because this disease is absolutely awful for everyone. I just wish I could tell you that your mom will find 'life after diagnosis', but I truly can't. Take care, Trina

 

[Kim C]

Trina-I think the same thing: Mom shouldn't have to end her days like this. I completely understand her feelings. She has always been very active, and now to not be able to walk, barely able to feed herself, can't bath herself...it's awful. MOm's is progressive quickly, don't know if that is related to her age or what. I wish I could close my eyes and make all this go away. Yesterday she fell and had to get x-rays. No breaks but I was surprised when she got home her spirits were maybe a little better than before the fall. At 80 she has the right to decide her course. She doesn't want a vent, doubt she will allow a PEG even. The PEG may have to occur but I would not push her at all for a vent. The other breathing machines probably will happen but we don't see the ALS clinic until Sept 16.

 

[crow330]

Hi there-

This is a really interesting thread to me - my mom has similarly 'given up'. But she is only 66. I'm not sure age matters when it comes to the will to live. My mom has actually attempted suicide 3 times in the past year to just end her suffering.... It's really a horrible place to be for her and for me. I send a hug your way as well as a nod of recognition of the situation.

Good luck to you - I'll be thinking about you and your mom... Wish I had advice. This is a great forum and place to vent.

 

[Kim C]

Crow330-Sorry you are in this situation too. My mom was always very active, walked every day, walked the dog, busy all the time. This inability to do anything for herself is killing her. I know she doesn't want to go on living like this but I pray she can find some peace somehow to get through this.

Good luck to you and your mom. Hope she has as good a day today as she can. Really big hugs to you.

Kim

 

[adozi]

As Vickie says, it's only been two weeks. It takes time, unfortunately. I'm really sorry you all are dealing with this. Personally, i really recommend feeding tubes. That way, no one has to feed her. I am basically in your mom's position. I am completely immobile, but i have lots of assistive equipment, thanks to my fabulous PT and the ALS clinic. I hope your experience with them is as good as mine, and gives your mom hope. In the meantime, i recommend a therapist. Call whoever is running your clinic (ALSA or MDA ALS ) and ask for advice and literature. I can give you links, but i want this to post tonight, so i won't include them, as it will go to a moderator. My best to you both.

 

[Daisy2182]

I could really use some advice about my mom... She was recently diagnosed with ALS. She was referred to an ALS center but hasn't made it to an appointment yet. We've scheduled 3 for her and have had to cancel. She refuses to go. When she was diagnosed she became very depressed... Depression and anxiety are things she's struggled with for most of her life... She's 58. She's afraid of what the doctors will tell her. I guess I'm just wondering, what is she missing out on? What can the center do for her that the hospital can't? I know in time she'll need things, for mobility or speech... Can she only get these things from an ALS center? I'd like her to go, but I can't force her. And I certainly don't blame her for not wanting to hear that she may only have a certain amount of time left to live... Has anyone experienced this?

 

[ottawa girl]

Daisy,

I so understand your Mom. The thought of going to the clinic petrified me, primarily because I was going to see my own future, in the eyes of other ( maybe more advanced) ALS patients. The clinic nurse assured me this would not occur. On her promise, and with the support of Casey (Cgars) - I made it. The worse part was hearing I have ALS. Of course, I knew this, but hearing it again was tough. BUT, going to the clinic was (and is) absolutely my BEST decision.

A hospital typically doesn't treat you as a WHOLE person. Hospitals treat parts. We have a rare illness - hospital staff generally just don't see ALS often enough to adequately help a patient. The team in charge of me is just plain wonderful. I'm a people - not a case. We were given a ton of practical information as well as each team member's direct line and email address. Your Mom will not get this level of service at a hospital. Nor will you. If one must be on this trip, one must have the best help. Not only for the patient, but the entire family. You wouldn't run a marathon wearing wooden clogs - you'd be donning your Nike shoes to just
" do it" ! If your Mom needs more incentive, feel free to PM me and I can exchange emails with her to ease her mind.

Paying it forward - I leave you with the wisest words I received from another PALS (Cgars) in response to my fear of the clinic:


" Not sure how your clinic is setup, but where I go it is almost informal.
I have my appointment with mt ALS Neuro and his assistant, we shoot the shit. I tell my Dr. I still think he's wrong, he tells me I'm progressing... blah, blah, blah.

I then see the "blow girl" as I call her, and she tests my breathing, then we chat with the ALS Ontario girl, really about nothing, then maybe hit up the social worker for some more free parking, then make a new appointment!
All in all We are there for about two hours.
My wiife then steals whatever magazine she was reading, and we go home.

Pretty painless really".


My visit wasn't quite like that... But close. I stole the magazine!:razz:

 

[Barbie]

she will get support and help at the clinic from people who understand what she is dealing with. they can give her a script for her anxiety and depression==that is common . make the appt. and make her go! ask her to just give it a chance. her fear of what they say will be worse than the truth.