need help with family

[Jeannie]

Hello all,
I don' t post much here but I read often. My MIL is suffering with bulbar onset ALS. She is only 59. She is declining rapidly and I think my husband and his siblings are in denial. I try to tell him they all need to talk about her wishes with her so we knwo what she wants but it is all falling on deaf ears. I understand it is more that difficult to do but she can't speak and has minimal had function and now her left leg is going. She has recently fallen 4 times in the last 2 weeks and needs help showering. So I suggested getting a home health aid or a nurse and they said maybe. I guess right now I don't know what to do, seeing as she isn't my mom I can't approach the conversation, I just don't know what to do. AHHHHH She is such a wonderful person and this has been so debilitation so quickly.
I just don't know what to do. They say they will talk to her but I don't know. I only want what is best for her (as they do), but I feel like an outsider and no one is listining to me. I am close to my MIL but I don't feel like this is my place.
She is progressing very rapidly and I just don't know how to gently guide my husband to talking to his mom. We don't know if she wants a feeding tube when the time comes, respirator and even her final arrangments.
Does anyone have any suggestions? I really appreciate your time.
You are all in my thoughts and prayer
In friendship
Jeannie

 

[brooksea]

She has a lot of life left and you need to express this to your in-laws! Not like a death sentence, but rather as a choice of how she would like to live!

What do you have to lose by expressing your opinion? You will lose your MIL if you don't speak up! Feelings will be hurt, one way or another, but in the end, you may give your MIL much needed hope from her whole family in knowing they want to keep her around...

Just talk frankly with your husband! I know it is very hard, but ALS is not something that the FAMILY can't live with!

 

[andyvaughn]

Jeanie,
I agree these are very hard conversations. It sounds like your mother in law was recently diagnosed?
I can only tell you our experience, .. my husband was diagnosed 2/20/08. He too won't have the conversations about his progression. He keeps saying "you'll do the right thing", which puts a HUGE burden on me, because I don't know what he wants. In our case, I live with him, so I can manage the day to day details of his care, but he won't have the bipap/feeding tube/vent conversation. What I have found though is that he is slowly coming to accept his diagnosis, and the inevitable consequences of it. For a while he was crazy talking - we are having to sell our home due to the loss of his income (by the way, we FINALLY have an offer in, PHEW, in the process of the negotiations with the buyer now) and he kept wanting to say we could buy a 2 story home, since he won't get any worse, he finally accepted the idea of being limited to a single story. He also said that we will have to remodel the bath/doors etc of what we buy... so, it seems that acceptance comes slowly, at least for us, and that all the things I worried about him not dealing with he is slowly dealing with. I didn't have to force any of it. I don't think a feeding tube will ever be an "emergency"... it will be obvious that she has to think about it as time progresses.
As far as her communication, can she get into the process of getting a speech augmentation device now? There are slews of them to choose from, then you won't have to worry about her not being able to convey her wishes to you? My husband can still talk, but it is getting worse, so we are in the process of getting him a speech aug device, so that he can learn it while he can still talk and ask questions.
I wish you and your family well. This disease is such a horrid monster... it is so hard to be so helpless.
Andrea - wife of Pals Jim

 

[Jeannie]

Thank you for your advise. This is soooo horrific. She was diagnosed in Jan 08 after close to a year of misdiagnosis. She now can not speak at all, her neck and hands are almost gone.
The funny thing is is that she is aware of how little time she has (her lung function is down to 50%. She keeps writting she wants to see a lawyer to get her affairs in order but none of the kids and her husband want to talk about it. She is such a sweet person and I don't want to be the one as the in-law to bring it up but I don't know if my husband and his siblings have the strenghth to do it. I think they are in denial which is so sad and understandable, but she is preogressing so quickly. Even the social worker said that she has never seen this disease take someone with such a vengince. It is just the saddest thing I have ever seen. I can't imagine how she feels and it is so sad that she can't communicate that with us.
She got some sort of device to speak like a laptop but she wrote it is too bulkey.... ahhhh
I am glad that you have a buyer for your house. I wish you the best and your husband. This isn't fair to anywone.
In friendship
Jeanne

 

[brooksea]

Jeannie,

I hope that you will be able to convince your husband to at least take his mom to a lawyer. I know where you are coming from, it sounds like his family is just wanting it all to go away. But it's not gonna go away...

It is just so unreal how this disease takes bits and pieces from each of us.

 

[grizzy]

Hi Jeannie,
I have been a "reader" on this forum for several months. This is my first reply. Your situation is so similar to mine. My mom was finally diagnosed with bulbar-onset ALS last July after nearly a year of running around the country looking for answers (we certainly weren't prepared to hear "ALS"). She is now 63 years old and has had very rapid progression...went from using a cane to being wheelchair-bound in only four months. She has no speech and we are in the process of obtaining a MyTobii eye gaze communication device. We (family and hired caregiver) provide complete care. This disease has totally changed everything in our lives. Unfortunately, my parents will not have the feeding tube/ventilator/end-of-life discussion. I know how hard it is to want to have the discussion (I was a social worker and worked with many terminally ill patients and their families regarding these such issues...it is SO different when it is your own family!). I could continue on and on about my situation, but I just want you to know that I really do understand the profound difficulties you are faced with everyday. I find strength in prayer and know that God has a perfect plan in all of this. Take care.

 

[brooksea]

grizzy,

We could all use your input! Every situation seems to be different and complex!

So sorry your MaMa has ALS.

 

[Jeannie]

Dear Grizzy and CJ
Thank you for your advise and support. Grizzy, I am so sorry about your mom. She seems to be in the same progression as my mother in law. I know what you mean about being a social worker and it being different when it is your family. I am a funeral director and have delt with death issues a thousand times but when it is your own family it is so different.
I hope we can stay in touch and support one another
Jeanne

 

[Want2Help]

Jeannie, I am very new here, but it seems to me that if your mother in law has asked to see a lawyer, then someone needs to step up for her and make that happen. I understand not wanting to rock the boat with your husband, but it breaks my heart to think that your MIL obviously knows what is going on and wants to fix things and has asked for that and can't do it herself. Is there any way you can gently sit your husband down and point this out? Ask how he'd feel in that situation-wouldn't he want you, or one of your children, to get him what he asks?

I would strongly consider getting her to a lawyer myself if her children can't or won't do it. You're only doing what she asked, not taking it on yourself to make her do it. Especially if her children have had the chance to do it and didn't, know what I mean? I believe that someday, her children will be glad that you honored her wishes and did as she asked. They won't always be frozen in grief and denial, and then they'll be glad someone was able to mobilize and do this for her.

I'm so sorry you're going through this, and your MIL is SO lucky and blessed to have you in her life.

Lisa

 

[Jeannie]

Dear Lisa~
Thank you for your support. I have tears running down my face~this disease is horrific. She is comming to my daughters pre-school stepping up ceremony tomorrow and then I will keep her the rest of the day. I think she will try to communicate with me about the lawyer, and if not, we will be able to spend some quality time together. I will let you know how it all goes.
Thank you again for all the support
Jeannie

 

[brooksea]

Jeannie,

If she would've asked you to take her to an attorney's or doctor's appointment before ALS, would you have done it?

I don't have your same situation, but do have to deal with family and in-laws. It can be very daunting!

I so wish you the best in being able to handle this for your MIL!

 

[Jeannie]

Hello all,
I had my MIL over for the day yesterday. We had a wonderful time and she was able to spend time watching the girls (her granddaughters) play. We did sit down together and she wrote to me that she needed my help and wanted to see a lawyer. I got the number and all right then and there. She said if no one would take her would I and I said of course. She started to write about her funeral but we both got upset but I know that the ice is broken there and we will discuss it again. It was absolutly heartbreaking as you all know. She is so aware of everything she just can't verbalize it. She said that she wants to go to the lawyer now because she is getting so weak so fast. I will be there for her to do whatever she wants me to. I feel honored that she loves me so much and wants my help. I am so blessed to have her, I can't believe we are going to lose her. My heart is just broken.
Jeannie

 

[brooksea]

Jeannie

What a wonderful breakthrough for you! Very touching! I knew you could do it girl!

Sometimes you have to take the bull by the horns!

You are a precious DIL to care so much. Don't dwell on the time you and your family may lose with her, rather dwell on the time you still have together. Exude a positive attitude and she will follow I bet!

I've always thought women are stronger than men, even if we do cry. (sorry guys):mrgreen:

 

[Maureen]

jeannie

Hi Jeannie,
You sound like you could use a little help with all of this. I have ALS and I am also a nurse who worked HOSPICE. This is a group who can HELP all of you not just your MIL. Honest I bet your MIL would love to have the kind of services Hospice can provide. At least talk to her about having one of the local Hospice folks come and chat about services.
Good luck with it all.
Maureen

 

[Jeannie]

Dear Maureen,
I am so sorry to hear that you roo are stricken with this horrible disease. I use to volunteer for hospice and I think they are fabulous. My question is with ALS how do you know when you aprox. have 6 months left? She is getting so weak and I think everyone thinks she has a few years left but I don't know. I don't want to be the downer in the family but I just want her to have as much help as she needs. Thank you for your help. I really apprectiate it.
Keep well.
Jeannie