Old 12-23-2015, 11:30 AM #1 (permalink)
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Default Helpless and scared

My mom was diagnosed with FTD in February of this year and then diagnosed with ALS in September. We were told that it's rare for the FTD to happen first but not unheard of. We started noticing changes about two years ago and after taking her to numerous doctors we were told its FTD. I feel like we had just began udjusting to the FTD and then ALS started being mentioned and months later we are sitting in a great big hospital hours away from home with the kindest Doctor telling us my mom has ALS. As of a few weeks ago she lost her ability to talk. It's so frustrating to not know what she wants or understand what she's trying to say (she still tries and the beginning of words come out but we can't decipher it) we tried flash cards, having her type on the iPad, having her point at pictures of common things on the iPad but no luck. Then, last Thursday she was having difficulty breathing and we rushed her to the ER. Turns out she aspeirated. She's been in the hospital since, is now in ICU because she coded. Yesterday she was doing really well and the doctor thought it was time to wean her off of her breathing tube, she did great until the tube was fully removed and she coded again. We are now looking at a tracheotomy and feeding tube. This completely scares me because I don't want my mom to need tubes to live. I want her healthy and back to normal. I had been handling all of this relatively well but now the tears just don't stop. It doesn't help that I'm 7 months pregnant with their first grandchild and I keep thinking that I want my mom to talk to about pregnancy, to see her grandchild, to hold her, to have a relationship with her granddaughter and this can't happen. I know the tracheotomy and the feeding tube will tremendously help her and she still walks and likes to sit with us and hear us talk so she has some quality of life but I somehow feel so guilty for filling her with tubes. I want to get to the place where I fully feel that this is the right decision all around not the right decision because my dad and I aren't ready to let go. My aunt assures me we are doing the right thing because my mom still walks and interacts as best she can with us. I just don't know how to handle so many changes all at once. I think this turned more into a rant than anything but either way, thank you for just reading.
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Old 12-23-2015, 12:04 PM #2 (permalink)
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Default Re: Helpless and scared

So sorry. My mother had FTD first. Know several others.
What matters of course is what your mother would have wanted when well. These decisions are not slam dunks. I don't think I want a trach/ vent at all but I certainly don't want one if I become demented. Others may feel differently.
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Old 12-23-2015, 02:08 PM #3 (permalink)
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Default Re: Helpless and scared

I'm so sorry too Corina.

FTD most commonly does come before ALS or around the same time.
My Chris was bulbar ALS with FTD.

Like Nikki I can only say what I would want for myself having been through caring for someone with this disease mix and I would never want to be kept alive that way.

Only you and your dad can really make that decision, and we are here whatever you end up choosing.
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Old 12-23-2015, 02:52 PM #4 (permalink)
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Default Re: Helpless and scared

Corina,
I'm sorry about the new and unexpected situation your family finds itself in. I very much agree with Nikki -- if at all possible, this should not be a decision that you/your aunt/dad make, but one that your mom made some time back. Is there anything on paper or in memory about her wishes in this situation? Something she might have said in reference to other people's situations?

I do not think you can assume "the tracheotomy and the feeding tube will tremendously help her" in terms of her own priorities. They can help her stay alive. As you rightly note, being alive doesn't mean quality of life to the extent that the person would want, possibly extending for years. Your family must also consider its own 24-hour/day commitment in terms of time, care and finances that a trach entails, not to mention your mom's likely diminishing mobility.

Consider also that your mom may not be able to communicate with you in the future any more than she can now. And both the ALS and FTD will progress. Is that how she would want to live out her life? I do not doubt that you are right that she enjoys being with you now, but a trach adds some level of discomfort (for some of our members, more than they ultimately decided to continue with; in FTD, that informed decision, if not hers, would fall to you) and with FTD the longer she lives, the less she may understand the rationale for suctioning and other care. You could end up with daily battles; I'm sorry, but this is the reality. The ALS+FTD+trach scenario is rare, for many reasons, and deserves all the consideration that can be provided.

I would also make a real effort to ask your mom what her wishes are, FTD notwithstanding. She can still nod and shake her head, or blink, I presume. She can see video/live demos of what a trach is, what a feeding tube is. It is first and foremost her life and her choice.

Most large hospitals have an ethics person of some kind. You might ask for a consult with whatever resources are available, to ensure that questions and concerns that should be voiced during this difficult time see light. You and each of your family members are going through a very emotional period and it is hard to think clearly, as you voiced. This is the kind of situation that bioethics often addresses.

To inform your mom's consideration, I would ask her primary clinician to sit with her/everyone and discuss the "best guess" prognosis beforehand -- how much longer will she live with/without the trach, how much longer will she walk, be as aware of circumstances as she is now, etc. This could occur in conjunction with an ethics consult so you have a third party who can help ask the right questions of the doctor(s) and observe your mom's reactions and ability to understand.

Again, I'm sorry, Corina; there are no "good" choices but you have a real opportunity to do right by your mom when she needs you to help implement something very hard to do, either way. To help someone with their own best life and death is an awesome responsibility, but I know you want to step up for her.

Best,
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Old 12-24-2015, 12:05 AM #5 (permalink)
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Default Re: Helpless and scared

So sorry Corina. The decisions the family have to make are so hard and heart breaking. The thing we as CALS have to remember that the big choices have to be up to the PALS. That is so hard and I deal with this struggle almost daily with my husband. A trach is a bid decision that has so many different opinions but I think it is the most important decision the PALS face. I wish you the best and hope you can listen closely to what you know your mother would want or wants. I feel for you and I know how hard this is. My heart and thoughts go out to you and your family.
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Old 12-24-2015, 12:53 AM #6 (permalink)
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Default Re: Helpless and scared

God Bless You and your Mother, honey.
I'm sorry.
So sad.
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Old 12-24-2015, 05:55 AM #7 (permalink)
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Default Re: Helpless and scared

Corina, we are not dealing with FTD, but you've gotten some very informed advice from people who have. I think Laurie's point that at some point your mom won't understand why she's being suctioned, and may therefore feel she's being mistreated when it happens, is one to seriously consider. I agree that our PALS get to make their own decisions, but I think the hardest road must be when they don't truely understand... I'm so sorry you are dealing with this, especially while carrying your first child. This is supposed to be a joyful time for you. Please try to allow yourself to feel the peace and joy of your child, especially at this time of year.

Please feel free to rant any time. This is what we are here for.

Big hugs,
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Old 01-05-2016, 03:36 PM #8 (permalink)
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Default Re: Helpless and scared

Thank you all for your responses. My dad decided to go through with the trach. My mom is actually doing really well, has been breathing without help from the ventilator for two days now. She should be transferred to a rehab facility soon. I'm happy she is doing well but still hate seeing her with tubes. Her personality is shining through little by little though. When I walked into her hospital room over the weekend she immediately smiled and reached for my belly. I've come to the conclusion that there aren't any easy decisions when dealing with ALS/FTD and that my dad is only doing what he feels is best and I need to be superlative and trust that he won't make wrong decisions that will ultimately make her suffer more. All in all I keep going back to the feeling that none of this is fair.
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Old 01-05-2016, 07:48 PM #9 (permalink)
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Default Re: Helpless and scared

I am happy to be hearing back from you Corina. I am also happy that your mom is doing better. It is hard seeing the tubes and there are no easy decisions. As loved ones we want to take measures to ease the pain our loved ones are going through and the Trach decision is such a hard decision and what is right for one is not right for another. I think your father did great as clearly your mother is doing better and is happier. I am glad that you can trust your father and know he will do whatever is best for mom. You are so right, none of this is fair and ALS /FTD should not happen to anyone.
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Old 01-06-2016, 01:07 AM #10 (permalink)
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Default Re: Helpless and scared

Thank you, I fell out of touch with most things. These were our first holidays with my mom being so ill. Christmas and New Years in the hospital was definitely not ideal. It's all such a harsh reality that I wish weren't happening. My aunt spent Christmas with us and we tried to be as normal as possible but it's so tough. At one point my aunt said that she absolutely hates the disease and it occurred to me that there really isn't a simpler way to describe my feelings about it. It's ironic how something I knew so little about a year ago became something I detest so much.
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Old 01-06-2016, 02:16 PM #11 (permalink)
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Default Re: Helpless and scared

Corina, I can ditto everything you are saying. A year ago I never dreamed we would be in this situation. It is a very harsh reality. It tears the families soul part but it can also bring us closer together. When we do come together it is so much easier. Detest and hate are strong words but they are not strong enough for ALS. My thoughts are with you, your mom and family.
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