Falls

[lisaann1170]

I suspect falling is common among ALS patients, however it gives me nightmares.

My dad has use of his left leg and has a drop foot on the right. It's increasingly more difficult for him to lift his leg to walk. He has a brace, but doesn't wear it at home. Nor does he use his cane, walker, or wheelchair in the house. He fell tonight and I know I'll be reliving this in my dreams for months to come. (Fortunately, he fell on carpet and didn't hit his head on anything.) He's lost use of his right arm and can't right himself once he's on the ground.

Honestly, I recognize that he wants to maintain his sense of independence, so I'm not being insensitive. I've told him that I'm uncomfortable with him walking as much as he does, using the steps in the house daily, and standing in the shower. His neuro told him he should not be using the steps or standing in the shower under any circumstances. He's very strong-willed and I appreciate that he wants to be independent. I simply don't know how to balance his independence with my fear for his safety!

I realize I don't have a question here. This is simply my vent to a crowd who may understand.

 

[brooksea]

Lisa,

My husband should be wearing a foot orthotic right now, but refuses to get one. It was prescribed months ago. He will use the electric wheelchair occasionally just to go visit in the neighborhood, as he can't walk that far any more. But he has almost pin wheeled into a collision between head and tile floor many times. So far, he has recovered nicely - from the pin wheeling I mean.

I know it is so hard for you to sit by and watch your father deteriorate and lose his mobility, but he will eventually realize it is time to take it easy! My husband is getting to that point mentally and it is very difficult for him and us. But he will still push the limits!

Very loving of you to care so much about your father. I'm sure y'all will work this all out when he is ready.

 

[Ellamay]

Lisa,
Every day Tony says... " I try". I have come to honor everytime he tries... to stand , to lift a foot, to place his hand on the walker, or swallow a sip of water. Tony says "That one day he won't even be able to do that so every day I try" It is so hard to let them do the things that you know is using up all their energy and risking falling. I have had to watch when his tries are unrewarded and I must assist him. His disappointment shows on his face and he is sad. I remember when he used to try to race down the hallway seeing how fast he could run with his new walker. Imagine my horror but now those are my fond memories as he cannot even barely stand. Allow the independance and honor every "try". Tony never listened to any dr's either it was like a personal challenge to him and even now Tony shouldn't be able to swallow a sip of water yet ... somehow he can... So somtimes their determination can achieve impossible things

Just so you know .. I was always poised and ready to jump in and assist each and every time! So I became his shadow sometimes... that's how i balanced safety with independance...

 

[Gelthling]

Lisa, My mum is very stubborn, but I too worry about her safety. She had a fall at 12:30 last night - I have no idea why she was out of bed at that time, but pushed the emergency button which called my brother,my uncle and me...long story. She will text me (lost her speech) that she is too tired to cook (a few times a week now), or has trouble getting off the toilet - but then when you bring it up with her in person she shakes her head and points to herself and you know she is saying "no I am doing it myself" because she is trying desperately to remain independant, but I too ave had to say to her not to do something as I am worried you will hurt yourself and kinda use the guilt trip on her a bit - she uses it on us! She actually told my brother the other day when she didn't like an answer he gave her to "not be mean, Im not here for very long"! Who does that to your children. Sorry, went off track, but yes I worry about my mothers safety - but I say to myself it is her choice to do things her way and I will not feel guilty if she hurts herself!

 

[hope_faith]

How scary. I'm so glad he was on carpet when he fell and didn't hit his head.

Falling is my BIGGEST fear with my husband. He took a really bad fall last month in the bathroom and hit his head on the floor and lost a ton of blood, had to get nine staples in his head. I will never get the image out of my head that night of him laying in a pool of blood when I found him 30 seconds after he fell. I had to call 911 for the first time in my life. I thought he was going to die in my arms. Needless to say, since the fall, I have been extremely afraid of it happening again and I hate to even leave him alone. Just after the fall, I was following him around like a puppy dog everywhere he went, now one month later, not so much, but it still worries the heck out of me.

 

[mare]

Lisa-

It is very difficult, from both sides. We hate to see our loved ones struggle, and put themselves in a situation that jeopardizes their safety. It IS scary to watch, as a CALS.

The flip side is, the PALS is trying to maintain his independence, as the others have said, and you have acknowledged. Knowing it & accepting it can be two different things.

Remember, this is still very new- your father has not had time to take it all in (as I'm sure you know the feeling!) And, I would think he doesn't like his daughter telling him what to do!

When my husband started with some tripping, I "told him" he needed to get AFO's. He didn't appreciate my suggestion! He felt he didn't need them yet. But, I would notice he was being very careful when walking. It was only after having a near-accident (almost fell on the sidewalk- able to catch himself, but none too gracefully, as he said his arms were flailing everywhere), that scared him enough. Mostly, I think it was the idea of not being able to get up on his own, as well as embarrassment when out in public.

I went out that day & bought a cane, "just to use when he is out". When he tried it. he admitted it did help with balance & within the week was using it at home as well.

When I showed him the thread where people talked about their AFO's, he did ask about them at his clinic visit. I think instead of me "telling him", it helped to read what others said. We have a walker, it sits here & he has only used it a few times (at home only); but just the other day, he said "I think I have to start using the walker."

Maybe if you talk to him coming from a different angle. Tell him how it makes YOU feel- that it frightens you that he may fall & seriously hurt himself. That you love him, and hate that this is happening to him; you just want to feel like you can do something to make things a little easier for him. Perhaps a tender request from a loving daughter can change his attitude.

I think the important thing is that it is his choice! He should have some control over the things he can control! And, yes, some are more stubborn than others. Some need a few falls to decide "ohhh, that hurts!" (there are plenty of stories here that attest to that!)
And that again will be their choice!

Although, I did say to my husband (who "didn't think he needed to use his cane" when going to the bathroom in the middle of the night)- if you fall, don't wake me up! You'll just have to stay there 'til the morning! LOL

He now uses his cane! I guess in the end, threats can work! LOL

 

[BarryG]

Although, I did say to my husband (who "didn't think he needed to use his cane" when going to the bathroom in the middle of the night)- if you fall, don't wake me up! You'll just have to stay there 'til the morning! LOL

Wow mare that is telling him! I am very glad that MY wife doesn't read this forum cause she would definitely get some (bad) ideas. I have no problems walking (other than floppy feet) so far and haven't fallen but I do tire easily so I am being careful when I am on my feet. I just got a walker and lift chair from the ALS society and the chair is very comfortable, I can lay right out in it and it does make it easier to get on my feet. The walker is another story, the ALS rep and the OT recommended that I get one and use it when I am out and about. For me it is a huge step, being seen out and about using a walker is something that I am having a huge time getting my head around. I have a cane and I'm OK with that but I will have to be a lot more wobbly before I use the walker or the wheelchair that I also have. Maybe I'll use the walker to carry my talker, at least that way I'll be able to tell people why I am using the walker. It is hard in a small town.

Every step in this horrible progressive disease is another process of acceptance for me. First it was the talker, then it was the PEG, then it was the quitting working. The cane, walker and wheelchair are the next steps. I just keep telling myself "just get over it" and "who cares what other people think".

Staying vertical for now,

Barry

 

[patricia1]

I fell and end ed up in icu with a brain bleed.:-(i am taking no more chances

pat

 

[Blackpool]

It is harder for some than others admitting that they need aids to walk etc. When I was working and saw people with a walker or oxygen I always admired them for not giving up and how couragious they were.I really think most people feel this way, so hold your head up high(if possible)and yes Barry the walker is great for carrying things around,I am looking forward to the chair and bed that the als society is getting for me also, I will admit I said no at first it is hard to get your head around it.

 

[KeeKer]

I think that everyone wants to keep their independance as long as possible. I tried to look at it from his point of view. I woud fight all the contraptions that would make me seem weaker as long as possible. Barry, have you thought of getting a sit on scooter? My brother used it for getting around outside and the walker inside. I think he viewed it as more of a motorcycle . You know, the guy thing with the obsession with motors, brakes, steering,etc......?

 

[lisaann1170]

Update - I said nothing to Dad about his fall. I sensed that he was embarrassed by it. Today, he's wearing his AFO and using his cane in the house. I think the fall scared him as much as it did me.

I'm still following him like a puppy as long as I'm visiting.

 

[mare]

Barry-

Jim knows it was "tongue in cheek" when I said about not picking him up until morning.
Please don't report me for "abuse"! LOL.

Wow, I would think the talker & the PEG would be harder than the walker & the cane.
Although, the walker is difficult for Jim; I think it is seen as an "age-related"thing. He would rather use the wheelchair outside than the walker!

Also, as Keeker said, the scooter is way cooler! And, it gives more of a feeling of independence; Jim seems to accept it better!

Lisa- good for you; now try not to "hover" so much. He will learn on his own!

Patricia1- wow! that is really learning the hard way!