Feeling Help

[JennyC]

Took my mom to her eye appointment today, while we were walking down the hall her rollator got away from her and she started falling forward, my arms were full of her things and I couldn't catch her. I think even if my hands were free I wouldn't have been able to catch her though because of the forward velocity. From now on I'm wearing a backpack when I take her out. I was able to grab her and slow her fall and aim her away from the wall so she didn't hit her head but I still felt so helpless that I couldn't catch her.....luckily there was a wheelchair van driver coming down the hall and he was able to help me get her back on her feet. I don't know how in the world I would have gotten her up on my own......

I'm taking her for a screening for a drug trial next week, its a couple hours from home and we may stay over night and I am just so nervous about her falling and me not being able to catch her or get her up.

 

[affected]

As hard as it is - you should not try to catch her if she falls. Sure if she is kind of sliding you can help direct her down more gently. But if you try to catch her, you risk going down with her and being injured as well, or causing even more injury to her. Then you will really be unable to get her up!

This is a really scary time I know - my husband refused to stop walking and be safe, and he had many falls, two of them causing serious injuries that reduced his quality of life and sped up his progression terribly.

 

[KimT]

Have you thought about using a light wheelchair. It might make it easier for both of you.

 

[JennyC]

I would love it if she would use a wheelchair but she refuses.

How do you not catch them when they fall? It just seems to be an instant reflex? I know I took her to a support group meeting and one of the caregivers fractured her spine when her husband went down and fell on her

 

[faithandlove]

JennyC,

I mentioned this at the ALS meeting I attended, and was told that, if there is fall for someone with ALS, you call the fire department and the firemen would help. Of course, I then said I am going to fall a lot (I've seen the firemen in Reno, NV)

I fell using the walker with my daughter a while back. She ran to me and broke the fall so that I was not injured, and her and her friend helped me get up. Since I had quite a few close calls with the walker,I purchased a small wheelchair on Craigslist for $125. I'm tall (5'9"), and I'm small boned, so this wheelchair was perfect for me. Tell your mother that this has been the best investment I've made since I got diagnosed. I get too tired using the walker and only use it around the house. The wheelchair has given me more freedom because I no longer mind going places and have less fear of falling. I will getting a motorized wheelchair soon and then we have to find a handicap van.

I don't like all this equipment either, but, with ALs, it is a necessary evil.

Good luck to you both.

Hugs,
Deb

 

[affected]

Jen I know it's very hard as it is a reflex.

It is something you have to understand and have high in your mind.

I can tell you there have been serious injuries to CALS who have tried to catch a falling PALS and then the situation is far worse as how do you care for someone when you are injured?

 

[WendyWooG]

Jen,
I am ultra cautious with moving round and use every aid I can, but even with that I have had a couple of incidents. If wouldn't call them full falls more of a controlled slide situation but the look of worry and fear on my daughters face was horrible. Maybe explaining to your mum how much you worry for her and letting her know it puts you at risk of injury would persuade her to at least try some assistance.

My power chair came this week it's very manouverable and comfortable. I find using it much less tiring than trying to walk. Without the exhaustion, I can enjoy outings and activities more. With each loss we lose independence, utilising each aid allows me to regain a little independence back. It's about control for me if I am in control of the equipment I control my ability to do things and am not letting this illness take over.

It's a hard thing for you to do watch her struggle. Hugs to you

Wendy x

 

[Nuts]

Jen, I'll echo what you've already read--don't risk injury to yourself by trying to catch your mom. Explain to her that we've cautioned you--if you are hurt you can't care for her. If she refuses the chair when you are out and about, she is risking a terrible injury that could kill her or hasten her progression.

A collapsible transport chair would be soooo much safer, and far less fuss than calling 911 to get her up off the ground.

Becky

 

[JennyC]

Deb,

Yes I know about the lift assist with 911, I was a firefighter and EMT and we did them quite often, so often for some of the same people that we felt a huge sense of sadness and loss upon their deaths because we had come to know them. Unfortunately my mom is a HANDFUL , she wouldn't even let me go inside to have the office staff get someone to help me get her up. During her appointment time she wouldn't wait in the waiting room, she didn't want to be looked at so they had to find someplace private for us to wait. Honestly its really starting to piss me off.

This next trip to Syracuse I'm thinking of telling her we need my uncle (her brother in law) to come with us, he is a very big guy, 6'2" and he is able to help her easier than I am. I am 5'4" and I have Rheumatoid Arthritis, Fibromyalgia and a few other chronic conditions and autoimmune diseases so I'm not as strong as I once was. When she is holding onto me to walk and she goes off balance it is very difficult for me to steady us both not to mention the strain on my joints. When she goes off balance with my uncle he doesn't even budge because he is big and strong. I just find myself walking on egg shells because I'm not up for her wrath.

I know that I shouldn't take it and I should say something to her but honestly I am feeling so mentally and emotionally weak already from just dealing with her condition and moods and my dads failing health and my grams failing health not to mention my own home life, trying to be a mother and a wife and my husbands health issues and combat PTSD and TBI that I'm just not sure I want to take on a conversation that will turn into a fight.

 

[JennyC]

So I told her we need my Uncle to come with us and she says no that he is too stressful to travel with......she also said "I will try not to fall".....um so am I to assume she deliberately fell last time?

 

[skipper66]

I would flat out tell her. That she either gets in a wheelchair and stays in it while you take her. Or, she can call a ambulance service or something to take her to her appointments. There would be no way I would have let me dad risk falling after the falls he took before we knew he had ALS. Luckily, dad listened to us and used his chair. Your mom needs to understand that she is going to be way worse off if she falls right now. I know she doesn't want to live anymore but a fall might not necessarily kill her and she'll have to suffer with even more pain and discomfort. It's not the way to go. I would insist she use a gait belt to that would help support her a little if you walk directly behind her if she is using a walker. But, they can still take a nasty fall with that. The wheelchair is what she needs.

 

[Nuts]

I have to agree with Skipper. Especially after reading about your health issues and responsibilities, flat out tell her it's a chair or nothing. She is endangering you and everyone who depends on you. Hey, maybe her brother in law won't look so tough if you toughen up . I understand not wanting the conflict, so tell her there is no argument. It is what it is, and she can call you when she's ready to be reasonable.

 

[JennyC]

I know that is what I need to do but honestly I am scared. She and my aunt are like peas in a pod (she is living with my Aunt) and I won't just be dealing with my mother's wrath I will be dealing with my Aunt's wrath and well and they can be very very nasty......I honestly thought I had more balls than this (sorry if thats crass lol)

 

[affected]

Sadly you have to make a choice whether you feel strong enough or not.

Holding your mother while walking when it is not safe for you is your choice. But really, I know this sounds tough, and I say it in love as I dealt with a very unsafe PALS - you need to make a choice and stick to it. Sticking to any choices you make will be the most important thing.

Either you pander to her and do what she wants and suck it up, and take the results of the risk. Or you risk the anger and rage and stick to what you believe is right and safe. Well that's a bit black and white, there will be shades of grey in it all of course.

There may be some frontotemporal brain involvement, or she may just be stubborn and in denial.

It is her choice at the end of the day, but it's your choice how you deal with it. That's what you can really control.

I watched my husband endure serious injuries and huge rages at me, even blaming me for everything that went wrong. It was really hard, but I made my internal choices on how I would deal with what was happening to him, and that got me through.

At times I held back and let him make poor choices, and at times I endured his rage (like refusing to let him walk unaided while he had a concussion, broken bones and other injuries).

Only you can make the call each time, but if you let her badger you into a corner you will feel that you have no control and it will take you down.

Sit down and think about what control you can have, what consequences there will be for choices, and what weighs the scale to each side.

Are you seeing a counsellor? This is exactly the kind of thing that talking through with a counsellor would be so helpful for you to do. It may help you feel you are not just swimming through the mire alone. Mostly with my counsellor we would talk about what was happening then turn and look at how it made me feel, how it affected me, and what choices I had. That was incredibly empowering for me.

 

[JennyC]

I do have a counselor but I haven't gotten to see her in weeks, she was out of town and now her receptionist and I are playing phone tag trying to schedule an appointment. Next Saturday we are driving from NY to IL to visit my dad for a week before his back surgery so it will be at least two weeks before I get to see her.

I emailed my mom and told her that if she won't let my uncle come then she is going to have to use the transport chair because I am simply not strong enough to help her walk or help her up if she falls with her rollator. She sent back "if you must" which is pretty much her way of saying FU but she will do it. My guess though is that she will want to bring both the rollator and the transport chair and she is going to give me shit about using the chair once we are there....

I know I'm strong enough but honestly I'm freaking exhausted and mentally spent.