Losing our daughter

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New member
Feb 2, 2023
Loved one DX
South Jordan
Our 43 year old daughter was diagnosed with bulbar onset ALS with FTD in December 2021. She has 2 young daughters and her husband is her primary caregiver, but my husband and I have her with us 3 days a week while her husband goes into the office to work. She can still walk, but is unsteady and tires quickly. Her hands have lost a lot of ability and are curled up most of the time. She can no longer speak and is very childlike. She sleeps with a Bipap, but doesn't use it during the day. She has trouble chewing and swallowing, but indicated early on that she doesn't want a feeding tube or to be put on a ventilator. Lately, it has been hard to get her to eat or drink very much. Occasionally, I have noticed a look of terror in her eyes and she clutches her chest. Then it passes and she relaxes. Most of the time she is smiling and laughing, though she is often confused about things.

We have agreed to have our daughter in our home when the time comes that she needs fulltime care, so her husband can work and care for their daughters. He has been wonderful to care for everything so far and we really appreciate him. We are glad to have her here with us for the end of her life and he will bring the girls to see her every day. Our main concern is what to expect as she declines and gets closer to passing. Back in September her husband was told she probably had 3 to 6 months left, so we know her time is short. I would love to hear other CALS experience as their loved one approached death and passed away.
Hi Chris
I'm so sorry you have to see your own daughter go through this.

My husband had bulbar onset ALS with FTD. He did have a feeding tube, but never really adjusted to taking in enough calories.
He did not use bipap at all as per his wishes.

He had a very peaceful passing at home. He did however have an aspiration pneumonia a month or so before he died. This really started the beginning of the end as it took so much out of him.
After that he said no more hospital.

I used palliative meds with great support from doctors and palliative nurses and he was gone within 4 days of stopping all fluids and nutrition voluntarily. He was the most peaceful he had been for a long time in those last days.

We can walk this with you.
I'm very sorry about your daughter, Chris, and so glad she has you and your husband as well as her husband and daughters.

If she needs the BiPAP during the day and is not using it then, she will probably become increasingly confused because she is retaining CO2, and eat less on that account, as well as her chewing difficulties. Lack of nutrition will further contribute to the confusion and may cause mood swings and changes in her behavior. Your eyes rather than the doctor's estimate are your best guide as to how long she may have.

In all likelihood, ultimately she will sleep a lot, though at the very end she may be more restless. To the extent that you can, I would want to know her wishes as regards medication as the end nears, or think about what she has said in the past about quality vs. quantity of life. This is something you could talk about with her husband to make sure you are all on the same page.

Likewise, the three of you could agree on your own "bucket list" for the rest of your daughter's life -- the things you/her daughters want to do and see with her, that she would be in a position to appreciate in some way, with sooner better than later. If she is able, you could take her into nature, for example, in a transport wheelchair with a hip belt for her protection.

Not knowing how old her girls are, I would also consider whether they will need counseling, making sure their teachers/principal are aware that their mom is near the end of life if they are in school, and being honest with them, because her body is being overtaxed and therefore she could die in her sleep without warning. She could also choke or aspirate while attempting to eat or drink. So the end could be more sudden than you anticipate.

I know that you have been and will be there for her. We will be here whenever you need us.

Chris. You and your daughter and all of your loved ones are in our thoughts and we walk with you in spirit. Perhaps now is the time to care for your daughter full time. It would be less stressful for her daughters to make the shift now while their Mom is aware of them and happenings. And. It would allow their dad to focus on them and their wellbeing.
Peace and hugs.
Sending love.
Thank you for replies to my post. Our daughter did a medical directive when she was first diagnosed and indicated that she does not want a feeding tube or ventilator. Her husband has talked with us about her wishes and his. Their daughters are 7 and 9 years old and are in counseling. At this point they have more understanding than their mom. The youngest one said, "Grandma, some people with ALS die." I said, "Yes, I know." Then she said, "I hope my mom doesn't die." When I said, "me too, but she might," our granddaughter said, "don't tell her, ok?" That little girl has been such a comfort and strength to her mom! The 9 year old has had more fear and gets frustrated when her mom can't do things. She also has trouble sleeping at night.

Our son-in-law has been great to do lots of things as a family this past year that the girls will always remember and our daughter has loved it. Now it is getting harder. They have a walker and a wheelchair from the ALS Foundation, but I'm not sure her hands are capable of holding onto the walker is she started to fall. She has loved doing diamond art paintings to give to people and completed many this past year. We were glad she had something to do that she loved, but now her hands don't work well and her mind won't focus on it, so the last one has been half completed for a month. She likes to have movies to watch, but loses interest quickly, like a child.

We are hoping she will continue to be able to get up and walk to the bathroom, but getting up is getting harder for her. Is it possible that she could pass before losing the ability to walk? Our son-in-law does not want to move her into our house until she is mentally at the point that she wouldn't know, but if she can't get up to go to the bathroom and needs someone with her all the time for that, I would rather have her here with us. They live 10 minutes away from us, but their home is small with stairs that she can no longer handle alone. Right now she still wants to be home with her family and gets ready to leave here when she knows they'll be home from work and school. She would not want to be here all the time at this point, but it will be necessary eventually, unless she passes before that.

We are in our 70's with some health issues ourselves, but we so want to do everything we can for her. It's just hard to watch her decline and feel helpless. I love hearing her voice on old videos. I miss her before she is even gone.
I am not sure she will get to the point where she doesn't know she is being moved from one house to the other.

I am always a little worried when someone is helping someone on the stairs. We converted a family room to a downstairs bedroom for my husband. Perhaps your daughter and son in law could sleep downstairs.

You are a wonderful family and I feel for you having to watch the pain of decline. Please be comforted in knowing that you are doing every thing you possibly can for your daughter.
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Your whole family are doing amazingly well in a terrible situation.

We can't really answer your questions as each PALS is different.
I can just tell you a little about my PALS who was much more rapid in progression than your daughter.
He walked to some degree for quite a while but started to have serious falls and some awful injuries. He refused to stop walking until he literally could not.
He never lost his basic understanding of who and where he was.
With FTD it is very different to AD. My husband had a different variant to your daughter, but still some similarities.
She is more likely to lose interest in where she is as the CO2 builds in her system. This could be partly why she can't focus so well now.

I did not completely agree with my husbands wishes, but I stuck to them totally and advocated for his right to have those choices.

However, there were a couple of things he had to compromise on, as CALS, our care has to be sustainable.
This may influence the timing of decisions you all have to make on when your daughter comes to live with you. The worst part is that you can't explain the details to them. My husband would go into rages and was paranoid, and he never forgot a thing.

In some ways, we just kind of muddle along as we can't fully predict what is next.
She may pass before she stops walking completely, but losing her legs is not life threatening, so progression there is not really a factor in longevity EXCEPT it could cause her to fall. Deaths from falling do happen as do serious injuries that never heal well and leave a lot of pain. That is what would concern me most about her being at home with the young children. Safety when upright may be what you all need to focus on now as you figure the longer term things.
I agree that the stairs and bathroom may be a limiting factor in where she can safely live, and you are wise to consider this. Maybe you could set up a new routine where the girls come straight to your house after school and stay until dinner or homework time. I am presuming there is not room for everyone to temporarily live at your house. I don't know if a short-term swap would be possible.

With bulbar onset, yes, it is possible that she could pass while still able to stand/walk, but there is no guarantee of that. Having her sit in higher chairs, placing existing chairs on a base, or using a stable riser may help for some period of time.
Dear Chris,
Sending you my good wishes also. I am so sorry about your daughter and have so much admiration for your whole wonderful family. Glad you have each other.

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Chris I am sending huge hugs. I'm wondering if it is possible for you to stay with her at their home during the day for now, vs her coming to yours. That could keep her home longer and still allow their family time with her and something that seems a bit more normal to the children.

When my DH who had limb onset (legs) got to the point of not being able to do the stairs, we moved our bedroom down to the main living area. While it is an inturruption, it would not be for long and the safety reasons far outweigh the inconvienience.

I'm praying for you and your family.

Last Wednesday our daughter, Amy, had 3 episodes of just freezing with a look of horror on her face. She doesn't make a sound when these episodes hit because she can't breathe or move when it happens. These each seemed longer than in the past and she seemed dazed when she finally relaxed from them. I asked her if it has happened other times when nobody notices and she nodded. If you're not looking at her, you wouldn't realize what was happening. Her husband has not seen these episodes, maybe because he is working nearby, but not looking right at her during the day when he's with her. I hope that her daughters won't see one of these episodes, because it's scary to see the look on her face when it happens.

Amy is also very restless and can't focus on anything very long, so she gets up to walk around, even though she isn't very steady. Last Friday she tripped and fell. She was shaken, but not hurt, and even laughed as I tried to help her up. When I was about to call someone to come and help, we finally got some leverage and got her onto the couch. She was too weak to do it without a lot of help and it was difficult for me to help her. Meanwhile, her daughters were wailing and screaming because it scared them. What a crazy scene we were!

Our son-in-law is looking for a home to buy because the lease on their townhome will be up soon. Hopefully, he will find something without stairs that they can afford near us.

Do any of you have experience with these breathing episodes? Do they get more frequent and longer lasting? Are they a sign that she is closer to passing?
I really am not familiar with this, but do you think she is having a seizure during these episodes or do you think it is as if her respiratory muscles become paralyzed or is it as if her lungs are not being triggered to take a breath?

I do hope your son-in-law is able to find a place to live without stairs. I wonder if trying to find a rental would be faster than the process of purchasing a home. Amy really needs to stop using the stairs now. Looking back, I believe we did every stage longer than we should have. Stairs, walker, driving, and so forth.
If these episodes are when she is not using the BiPAP, she may be experiencing transient apnea, where the brain and/or muscles are not geared up to keep her breathing at a certain rate. The use of a backup rate (failsafe) on the BiPAP, which begins the inhalation process for her, would be the best strategy, if she can tolerate it. I would try to make it clear to her what the tradeoff is here.

Not knowing what the set backup rate, Trigger and Cycle settings are, and the minimum/maximum times set for machine-controlled breaths, these settings may need adjustment. I'm always happy to help. However, the machine cannot breathe for her, so depending on the extent of her weakness and which muscles are involved, she might still have difficulty breathing, though likely less so.
It could just as well be petit mal seizures, or some respiratory issue.

Whatever, it sounds like things are fast moving to a place where she needs care all the time, and walking is dangerous unassisted. Does she refuse to use a walker? My husband had FTD and he would not take any real regard of safety. Falls are so horrible, especially if her children could be around.

Let us know if she gets this checked or bipap helps.
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