mom in denial...what should I do?

[Limegirl]

Hi. I have been on the forum for a few months now, but have never posted. My mom was diagnosed officially in Dec with what the doctor's think is advanced ALS (although officially they still call it probable because she does not meet all the criteria yet). She is diagnosed as bulbar onset, (although we can remember weakness in her arms and legs as far back as 4 years ago). She is unable to swallow, but Her speech has been okay, and has only now started to get a bit of a voice change. She appears to be declining quite quickly from what I can tell. She now needs help with all her daily activities, is unable to turn herself in bed, had a PEG tube inserted in November as she was not eating enough for about 2 months and just last week started to complain of thick mucous that she has trouble clearing. It has been a difficult journey thus far for our family, especially my dad. He is her main caregiver as I live 2 hours away. Both of my parents are in their 70's, and he is completely exhausted. I have tried to arrange help for my mom and dad, but it appears they do not qualify for home care without having to pay for it themselves. My mom also feels that my dad is doing a good enough job and that it really is not for anyone else to worry about. They like their privacy and do not want strangers in the house. He collapsed from exhaustion 2 weeks ago. I am now coming over once per week to sleep the night with my mom so that he can sleep the night through.

A big issue that my dad and I are dealing with is my mom's denial. She feels this is a pinched nerve in her neck. We have seen 2 ALS specialists and both agree on the diagnosis. I have a medical background, and from all the test results that I have seen, and that have been explained to me, have to agree with them. As much as I wish this were not happening, I wish to approach this head on and be one step ahead of the disease. My dad and I are frustrated by her denial. We can have no conversations with her as she gets angry with us for "not being positive". Just the mere mention of the words ALS sends my mom on a crying spell that can last quite some time. She gets furious with my father anytime he wants to talk to her about it.

On my last visit, a mucous plug blocked her airway. Only after I stuck my fingers down her throat, was it cleared by her gagging. My dad has had to do this 6 times already. My fear is that a much worse outcome will happen in the future and we do not know any of her wishes as to what care she wishes or does not wish. Her decline seems very rapid to us, and if it continues at this pace, my dad will no longer be able to manage on his own with her. I can see this happening in a couple of months. I am trying to get them to move closer to me. My husband and I are even willing to sell our home and buy one with a basement suite so that I can be a daily caregiver for them. I have 2 young children, one of whom is in school, and as such can not uproot them to move closer to my parents. My mom says she will not move until "she is better". Any suggestions on what I should do? Part of me says if she wishes to cope with denial, then I should just let her as I think that this is the only thing keeping her going at the moment. However, if some things don't get discussed, decisions will end up happening in an emergency situation that will be overwhelming for all involved, especially my dad. Any input would be greatly appreciated.

 

[Blubear]

Oh Limegirl, I am so sorry about your mom's diagnosis! I hope that she at least hits a plateau soon so you can have some room to breathe. Denial is a survival mechanism. Its natural not to want to deal with this particular disease. I would suggest you contact your local ALSA and see if they can get a social worker out there to help with your situation. Eventually, there is no denying this disease. I know that she wants her privacy, but she needs help and so does dad! If your mom is on medicare she should be covered. I am sure that Kay Marie (the wizard of oz shoes avatar) or Brooksea will respond to this thread and the know tons of ways to get the help you need. You are a wonderful daughter to offer to move closer and also be there for her and dad too. They are so lucky to have you. Also, WELCOME TO OUR FORUM FAMILY! We are here for you, each offering something different, but mostly we dont want you to ever feel alone with this. This forum has such wonderful, compassionate and loving people on it. There is a TON of information here too if you just search the threads. ALS is a rare disease and it is a Godsend that you have found us. We will be here for you anytime! Hang in there, and support is on the way with your post, just wait and see!
Sending you a big warm HUG!
Blubear

 

[indigosd]

awww Kari, Tussen Takk for the praise. I don't know the answers but I am soul willing to share the experience. Limegirl, she may have the Dementia that is sometimes associated with ALS. It is ok for her to be Denial if that works for her. My suggestion is that you get legal permission to act on her behalf and solve this with your Dad's input. There unfortunately comes a time when you just have to pull on the big girl panties and make decisions because they are just not capable to make them. It sounds like your Dad needs your help to make the best decisions for your Momma and his wife. So....talk it over with your Dad and then if he agrees, get the legal stuff out of the way that makes you the legal guardian-truly does simplify things as time goes by-have your name put on their financial accounts, medical, etc so that you have the right to have the information. Oh, just noticied that you are in Canada! It maight be different there?

Practical stuff, does she have a SUCTION MACHINE? If not, get one ASAP. Is she on BiPap? Is she on a antidepressant? Paxil is excellent for PALS. Don't even ask her if she wants it. Just give it to her in her PEG- she needs it. Remember that all meds must be crushed and dissolved first. :] I don't know how the medical system works there but from all that I have read on the forum it is EXCELLENT! I know that our Canadian friends will be on and give you the practical assistance that you need.

Is it possible for you both to sell your homes and buy another that will allow you to do that? GREAT IDEA! Remember that this is a FAMILY disease and it does effect all of you. Make it as easy as you can on yourself and take care of yourself so that you can be strong for the journey. Must run and drop the boyo off at school-will check back later. HUGS to you! You are showing such love and wisdom for your Momma and Dad. Kay Marie

 

[Zaphoon]

I agree with getting a social worker from either MDA/ALSA involved. Your mom needs to come out of her denial in order to be able to make the kind of decisions you are looking for her to make. It is a very tough thing to face, the fact that you will not get better.

Kim

 

[indigosd]

Kim, sorry but I have to disagree with you :] Denial is a coping mechanism for the individual. Not very good or effective for the family but works very well for the person in denial. Some people never get beyond denial and that is ok. Maybe she has FTD along with the ALS like KatieC's Glen or Shelly's husband, it is possible right? I think that is infinitely more critical for Limegirl and her Dad who are not in denial to put into action taking care of stuff before it is a medical emergency and sounds like that could happen any moment. Not everyone is able or willing to process the end of life issues. :[ Social worker for Limegirl and her Dad would be helpful if they can assist them through the legal maze. Just my 2 cents worth. Oh Kim, are you still in mourning or is the dancing helping?! [inside stuff about the passing of Gumby's creator for the rest of you that don't know]

 

[Blubear]

My father likes to live in denial too. However, he is forced to go to all the doctor visits, and then he is confronted with it. The doctor visits wear him out and make him angry because he just does not want to deal with the fact that he has this disease all the time. Still trying to have a life. He is not so bad yet. Not good, but not bad bad either. Everyone is different.
Hugs, Kari

 

[Zaphoon]

I did think of the possibility that her mom could have FTD and you're right, it could be that she cannot get passed the denial. In any case, it is sad for those who must deal with her but a possible benefit is she may never come to the knowledge she has such an awful disease.

Gumby has mush for brains and cannot remember anything further back than 12 hours ago.

 

[Gelthling]

My mum is still in denial - she blames the nurses for putting her on the level 3 thickness of fluids and says she has trouble swallowing because of the thickness - not for the fact her swallowing is getting worse. My father and I know she will never come out of her denial - I was trying to explain this to one of the nurses who told me they are trying to get her to communicate things she wants to say to us now, before she cant communicate anymore - We know this will not happen! I don't think everyone finds that "Peace" before they realise its too late and believe my mum will be in denial till the day she dies and that is her way of fighting and coping.

I'm sorry you are going through this with your mum. I had to become Mums legal medical guardian due to the denial because she was refusing carers etc to the point it was unsafe for her, so this maybe something you need to consider.

As I am told nearly every day, with this disease everyone's journey is different - I believe that in their coping mechanisms and the way they handle this disease too.

 

[DgtofTNfan]

Limegirl,

First, I am so sorry for your Mom's diagnosis and what your family is going through from this disease.

As Kay Marie mentioned denial can be a good thing. It is a coping mechanism that allows us to deal with only what we can handle at the time. One psychologist I worked with use to say, "The first step towards acceptance is denial."

Having said that it can impede the immediate work that needs to be done. As a discharge planner, I don't know how many times I had this discussion with patients. Have you tried the approach that we need to get some things in order for the time being to handle your current needs and if/when you don't need them anymore we will send them back? This could help make sure she gets the equipment and supplies that she needs as well as agreeing to increase the amount of care as a "temporary" measure.

In regards to her health care decisions, what if you all discussed your Living Wills openly in more general terms. Can you talk about what each of you would want so that the attention was not just on your Mom? Start a discussion, if (fill in the blank) happened to me then I would want... then ask "Dad how about you?" and then ask your Mom.

Just a couple of suggestions.

I really feel for you. You must be exhausted yourself with trying to manage your own home and caring for your kids as well as all the worry over your parents and commuting to help out. I will be thinking of you guys.

 

[indigosd]

Great suggestion Dana!

 

[Momma]

Being a 43 year old with this awful disease...my opinion..let your mom deny all she wants. I hate admitting this is what I have. Move closer and help out..your child will survive changing schools and it will all be worth it in the end. As far as trying to take care of things before she dies...they aren't important enough. Nothing matters but life itself. Everything else will take care of itself.

Good Luck

 

[Limegirl]

Thanks to all for the quick replies. I will think about all of the suggestions and come up with a game plan for my father and I. I think I agree with letting her be in denial, and only discussing the necessary things with my dad for now. We have a meeting at our local ALS clinic on wednesday, and I will talk to the nurse or social worker there to arrange some needed equipment and more care for them at home. I am hoping there is something that we may have missed in terms of care for them. I will take the suggested approach that we will take the equipment only "for now, temporarily". I think she might be responsive to this. This is such a terrible disease, and it is so sad that it effects such wonderful, young people. I appreciate you all taking the time to help others in crisis, especially to all the PALS out there. Very brave and wonderful of you! Take care...

 

[indigosd]

Just wondering how all of you are doing?

 

[laurel]

I'm sorry about your mother. I am a retired registered nurse and worked in mental health for 30 years. There is no benefit in confronting over the issue of accepting the diagnosis. She knows and she is making a choice to deal with it in the way in which she can cope with it. It does sound like a more urgent issue is getting some help in for them. That is an area that social workers and the ALS team can assist with. It's okay for your mom to deal with her emotional issues in the way she chooses, but the social worker can work with your dad and help him accept outside help and help him convey to your mom that he needs assistance. I am thinking of you and saying a prayer.
Laurel