Family not getting needed help for mom with bulbar ALS/FTD

[lastdaughter]

Hi all,

This is my first time posting and I'm glad there's a supportive community here. I'm posting because my mother has Bulbar ALS with FTD. She was diagnosed approx 2 years ago and as of now, cannot eat (has a PEG) right hand almost useless, left hand getting there, extremely slurred speech (cannot understand her 90% of the time), is continually coughing, has a BIPAP, cough assist machine and suction machine. Most days she just sits on the couch.

The problem is that my father is her caregiver, and isn't doing too bad of a job, but she is now needing support with showering, grooming, getting changed, etc. Also, because of her FTD, she's not making the best decisions. For example, she didn't want to wait a few minutes for me or my father to change the dressing around her PEG, so she decided to try it herself and pulled at it, making it bleed. She has a shower chair but she doesn't want to use it. She does things that are bad for her and suck up her energy, like trying to hold the blowdryer with her left hand, barely able to. She says she doesn't want help and my father says she doesn't want help, but she really needs professional help to help her with all of the machines she's continually using and to help her with dressing and other basic daily needs. I'm currently and temporarily at home and can do a bit to help, but I'm working from home and will be moving out within a couple of months. It's extremely difficult for me to work and assist her when she needs assisting, which is all the time! I'm so frustrated and I've tried to interview some caregivers, but my the men in my family (father and brother) has been obstinate about getting her help, even screaming at me when I tried to set up those interviews.

This is really adversely affecting my mother. She needs someone next to her at all times, and while my father tries that, it's not always possible. He's also not helping her with the showering and grooming needs. I do when I'm around, but that's not often enough. Also, they have more than enough money to pay for someone to come in 6-8 hours a day, which would be enough.

Any advice? I cry with frustration at times.

 

[krnNdug]

I am so sorry for your situation. I don't have any suggestions, just feeling your pain. As a PALS I don't want to be a burden on my wife, or anyone else for that matter. I am trying to do things as best I can, but have been slowly getting the point that I have severe limitations. I still lash out sometimes when my wife does something I think I can or want to try. It isn't fair to her and I need to try to not do that. I think as we lose control we try to hold on to whatever we can, at least I do. I was sort of a handyman around the house (pretty decent too) and now I have to allow friends or hire people to do things. That stinks!

I wish you well and will pray for you. I know there will be some good suggestions given and I look forward to seeing the replies as I will need to apply it to my life (except we don't have $ for hired caregivers, but lots of family and friends nearby).

Doug

 

[lastdaughter]

Thank you for your prayers and kind words, Doug. I appreciate it. You're lucky you have lots of family and friends nearby. When help is divided, it's a lot easier on those who want to help. I can't even begin to understand how difficult it is slowly losing the skills you've always had and having to try to gracefully accept help.

Lots of love your way,
lastdaughter

 

[krnNdug]

We love going to San Diego. That is a memory our whole family will have. We used to rent a home for a week in Oceanside for a few years. Lately we have used my in-laws timeshare and stayed across the street from Balboa and the Zoo.

Hope you haven't moved to far from San Diego, or is that where you live and your family live elsewhere.
Doug

 

[affected]

I wonder if you should get in some help from the health professionals that look after your mum to get discussions going with the rest of the family and your mum about strategies.

If they can be convinced that help is needed, it is probably a good idea to start small, say look for an hour or two each day for some basic things. It could be that as they all get used to someone coming in to help they become more open to the hours of help being extended.

Someone like an OT would be really useful to advocate for you. This then takes some of the pressure off you and gives some weight to the concerns. It's easy for your dad and brother to just brush your concerns off, but not always so easy for them to do the same when someone professional lays out the realities...

 

[starente15]

So sorry for your situation. I know how you feel. My dad has bulbar as well and is having trouble coping and giving up control. He commented to the visiting nurse today that he was going to clean up the yard. He was also told to start using a walker and he told my mother he's working on getting stronger instead. It's so hard to watch this unfold not knowing what's next. It's great that you're there and trying to be proactive. Don't give up because your moms health depends on it.

 

[affected]

He was also told to start using a walker and he told my mother he's working on getting stronger instead.

That makes me want to cry

 

[lastdaughter]

Thanks for the suggestion, Tillie. I'm having the speech therapist who comes in weekly suggest to my dad that my mom might needs some help with these daily tasks. And she'll have a few referrals ready for him.

Thanks for the encouragement, starente15, I'm trying but it's really hard to watch this happening, especially since I'm not a natural caregiver myself, the situation is like living hell, both my mom's decline and my father's denial of the seriousness of it, thereby shortchanging her in care.

Doug, I'm currently at home with my mom in San Diego. I'm glad you have those memories of visiting with your family!

 

[affected]

Sometimes you just have to go behind their backs and talk to their health professionals about your concerns. This can take you out of the equation (or seem to).

Then that person can ask direct questions of them because they know something is a problem and needs to be addressed, and as you said can come armed with some ideas, resources or suggestions.

It is incredibly hard to watch, I was constantly stunned that this was truly happening before my eyes.

 

[starente15]

I know Tillie. I was distraught the rest of the evening after hearing that.

Lastdaughter - I agree with Tillie that sometimes you have to go behind their backs. I have had to do this a lot to make sure we don't end up in a bad situation and to push things forward that wouldn't get acted on. Neither of my parents can cope or accept this (it's been 3 months since diagnosis). For now, I've compartmentalized things so that I can be the driving force to ensure he has what he needs when he needs it. You're right, it is living hell for everyone.

 

[skipper66]

Lastdaughter: I read your post and I would have responded exactly like Tillie did. You are wise to be talking to the health professionals and getting their help in convincing your dad and the rest of the family that more outside help is needed. You sound like a very caring and loving daughter. Your mom is lucky to have you in your corner. Sending you a hug, Kim

 

[Barbie]

Welcome last daughter. it sounds like your male relatives are sort of relying on you and in denial that it is only for a little while. I have experience with a sick mom and a caregiving dad and will give you my take on the situation even though it was not ALS;

My mom had Alzheimers and dad was the caregiver. I use that term loosely... she was really out of it mentally and I think also had other health issues going on so she was going down hill fast. I was only able to help slightly because of my husband's ALS. my dad would not help with her grooming or hygiene and just would leave her in the house with the TV while he spent the day outside in the yard puttering. long story short she got a skin infection and ended up in the hospital (and died a few months later). He loved her, but could not accept that being a caregiver for a patient with alzheimers (or FTD) is a huge undertaking and not a parttime job. especially when you add in limited mobility and age. I Had to lay down the law on my dad and insisted that he get in help. He did listen to me especially after I told him he had to start bathing her and checking her butt after she went poo because it was hygiene issues that caused her infection and she was not capable mentally. he also had the money for a caregiver but complained non stop about spending it for her care.
If you have talked to them and they do not listen, then perhaps before you move out in a couple months--go away for the weekend and leave them to care for her. 2 or 3 days of caring will probably make them appreciate the situation, and when you get back you can remind them that you will be gone for good in 2 months. that would be the time to suggest again that they get in even a parttime caregiver. I appealed to my dad's desire to have time in the yard doing his own thing--perhaps your dad will want that too.

I feel for you!

 

[Mike in Maine]

Welcome Last Daughter,
Have you thought about maybe a little counselling for you and the males in the family. Being a guy and a hardheaded one at that I understand that they may resist this, but if you can pull if off maybe you will all be able to get on the same page. The ALS Association Homepage - ALS Association in San Diego may be to help. Good Luck

Mike

 

[lastdaughter]

Dear Barbie,

Wow, thanks for sharing your story. I can relate -- especially the part about my dad puttering around in the yard and not wanting to do the grooming for her. I will be going away in a couple of weeks to do some house/dog sitting for a friend, so we'll see if that will be enough to get him to change his tune. My thoughts go out to you, especially as you have a husband with ALS.

Dear Mike,

Thanks for the advice about getting counseling. I'll suggest it, but not sure how they will take it, as the problem isn't only a male one, it's a cultural one. We come from a culture where you don't admit you need help and you take care of everything within the family as much as possible. But I will try. Thank you.

 

[lastdaughter]

And thank you for the hug, Kim.