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jessielf

Active member
Joined
Dec 26, 2011
Messages
66
Reason
Lost a loved one
Diagnosis
08/2011
Country
US
State
WI
City
wis rapids
I called my mom today and she told me she fell. She had to call my dad at work to come home and get her up. Right now she is using a walker w brakes that she can sit on too. I told her she should get a scooter chair and comes up w excuses. She has a wheel chair but I don't think she is strong enough to wheel herself around


She is waiting for a lady that is case worker but she hasn't called her since she came over to my parents house to see what my mom can and can't do. She is still semi mobile but is getting weaker. She has an appoint in Feb w her neurologist. My dad takes her to them but I don't think my parents see the big picture that their house needs to be more assailable for my mom and that my mom will need more help sooner than later. I think they are being stubborn. I'm thinking of going too to the appointment. She has to have a blood test taken because her muscle enzymes are high. Anyone else has or had that problem? They have been like that since last year and no one is doing anything about.

My dad thinks he can do everything for my mom and I really don't think he knows what all is coming. She told her case worker that she doesn't want to be put in assistant living when she was asked. My parents live in the country. Afew of my aunts live near them but they work during the day. Luckily my dad's work is very understanding and is about 10-15 min away. I'm just worried that if my dad wasn't in the office then what? She said she would have to wait for my dad to come home from work. My grandma also called her and my mom told her what happened, but she was on the floor waiting for my dad to come home. I really don't know what to think except I think I will have to start making meals for my dad, so she won't have to. But if she falls while I'm there I won't be able to get her up being pregnant, but at least while I'm there she will be sitting cause I will make her. I know in Walmart she uses a wheelchair and my dad pushes her.

My mom knows what can happen to her as she gets worse and hopes to go before she gets too bad. Its so hard just seeing wanting to still do everything but can't. She is still witty has a good attitude about things most the time, but I think sometimes she doesn't get it all the time. She can tell when she gets worse but is in shock when it told by a dr.

She also said my grandma is avoiding looking at her and thinks she doesn't want to see my mom go down hill. I feel for my grandma she lost my uncle when he was 27, he was diabetic, lost an infant daughter (still birth) and she lost my grandpa in 2010. My mom has one more sister but she isn't in the best health either. Now she will probably lose my mom too. She keeps telling her that she prays for her and my mom thinks she is mad because she isn't getting better.

I don't know what is instore for my mom since this disease is very unpredictable. I hate seeing all these stories of families being torn apart due to this disease its so heart breaking.
 
jessielf, I don't know how old your Mom is, but falling is the most dangerous part of her daily life at the moment... insist on getting a scooter for her, I LOVE mine, use it around the house all day long. Not so good on rough terrain outside, but sidewalks are ok. I don't want to get an electric wheelchair until I absolutely have to! Call your local ALSA or MDA chapter to see if they have one in their loaner closet, mine was a gift from an organization called CCALS here in Mass.

No one really knows what their progression will be, and that's scary. Your Mom seems to have a good attitude, and that's important. If she's online at all, introduce her to our site and she can find answers to all kinds of questions... as well as you, there are plenty of people here with a lot more info than you'll ever get from your doc's office.

I'm not sure about the muscle enzymes being elevated, but think that is probably attributed to the muscle death, which raises them. Some of the others can correct me if I'm wrong here... :)

Sorry you have to be here, but glad you found us.
 
We don't have anything near her only a local aging facility that has bars, camodes to use. I try to tell her often to get a scooter chair but she is so gosh darn stubborn! She doesn't have online access either. Helen how is getting on and off your scooter chair like to go to the bathroom and that? Thats one of her excuses not to get one. But later if she is in a wheel chair anyways she is better off getting the scooter chair. Is it pretty simple to use?

Really glad I found you guys. There isn't anything around for my mom as any organizations and the case worker only dealt w 2 other cases w ALS. But now my dad's boss's friends wife just found out that she has als and is her age. So I'm trying to get her to contact the lady, but the lady lost the use of her hands.

Jessie
 
Sorry for the dilemma that you find yourself in. My sister also thought she'd go before she got bad, but she didn't. My sister was stubborn too. Kind of comes with the territory for some, I think. Our Lions Club has a convalescent unit and often has some durable medical equipment that they will loan out. The ALS loan closet was also a lifesaver for medical equipment. If she is thinking of a power chair, need an evaluation by an occupational therapist of the home and of your Mom if you want to have Medicare pay for it. Her dr might have to do a referral for this (not sure--my sis was still on COBRA benefits from work). Better sooner than later.
 
mysticunicorn66, the power chair is more of my idea. So I don't even know that she will bring it up to her Dr. And my mom doesn't have medicare either just my dad's insurance through work. Still waiting to see if she will get medicare. She thinks she will be in a wheel chair by summer. She can't stand or walk for long.
 
Is she on Social Security Disability yet? My sister was on SSD and once she got her diagnosis, I got a copy of her medical records (I was her POA). I made an appt with Social Security office and took her medical records with me and applied for Medicare on her behalf. It was less than two weeks for them to process the paperwork and we found out she had Medicare. If she hasn't applied for Social Security Disability and has a diagnosis of ALS, I strongly advise that she apply for Social Security Disability and Medicare. This disease has many curves it throws at the people who have it. Nobody progresses at the same rate. The sooner that this gets done, the better because you run into a lot of things that need to be paid for. Remember though that Medicare has rules though on what they will pay for as far as wheelchairs and power chairs. We rented a wheelchair for her for a short time while I was in the process of getting my sister's annuity released so we would have those funds. Once we got that money, I bought her a manual, folding wheelchair that reclined and had elevated leg rests. I left the power chair for the Medicare benefit if my sister needed it, which she didn't because she could not stand to be in a sitting position too long and became bedridden rather quickly. Maybe you need to accompany your Mom to the doctor and ask some questions that maybe she doesn't ask. Maybe if she hears it from the doctor that she needs something, she would be more inclined to get it. Praying for you as you weather this storm.
 
Hi Jessie, I live in Milwaukee, and was wondering where your mom's ALS Specialist is located. Also, as you don't have many resources near you, it would be well worth a trip to Waukesha where the ALS Association has a very well stocked loan closet. I would also highly recommend going to the MDA Wisconsin website and order the books, which are free, entitled, "MDA ALS Caregivers Guide", and "Everyday Life with ALS A practical Guide". These books can also be downloaded or read online, but having them on hand is better. They are invaluable resources for care, and explain all the equipment you may need. From the loan closet we received the following: electric recliner with remote (invaluable and very comfy), toilet riser with hand bars, bedside commode, sliding shower chair, walker, wheelchair, hospital table, and transfer board. You can call the WI ALSA, and let them know what you will be needing, and set an appointment. I realize you may not have the time or a vehicle to do this, but if you can find some help you can get what your mom will also need for the future.

ALSA has a series on living with ALS in booklet form, VHS, and DVD--all free. They also offer Flex grants ($500 2x per year), and transportation grants ($250 4x per year). Call and request info about what they offer. You can never be TOO prepared for what's to come. You stated that your parents may not be seeing the big picture. These are some things you can do to help that will only take a few phone calls, and visits to websites. Good luck, and just ask if you have any questions.

Laura

P.S. We had the non-emergency phone number for the fire dept., that I had to call a couple of times when I couldn't get my mom off the floor. Check with yours, and also your mom to see if she'd be agreeable to using it.
 
I am in the same situation as your mom at this point...same walker...falls as well. Only difference I guess with me is I ...so far...have been able to roll over and manage to get up or crawl to a couch and push myself onto it. I would suggest maybe at this point to get like a 'l i f e a l e r t' button or something similar in your area where someone can help her up if that situation comes again.

Stubborness is a part of life, and she will know when she needs more help. Start filling out the forms for a scooter and by the time it comes, she might have changed her mind about it. as a PALS, one of the biggest problems is feeling that your independence is going down the tubes. Explain that a scooter will give her that independence back because you know she will be safely seated and not falling! Overall, she has to come to terms with it...and often , at least I found in my case, that is when you are on the floor wondering why you have gotten there again when you were just trying to walk down the hall. Good luck to you.
 
Just a word of advice...Falling can cause serious injury. Broken bones, skull fractures, rotor cup/shoulder injuries...just to name a few...can be very much more costly and disabling to the ALS patient. Please do not be so stubborn when it comes to your safety. My sister has been injured several times severly due to falls. We have heard of other ALS patients having back and shoulder problems that could not be alleviated by surgery because of the anesthesia. So these patients suffer. Please be very cautious. We CALS LOVE YOU very much!

Kaye
 
Laura, thanks for the info! My mom goes to Madison, since I posted the original post she seen her neurologist and told her to make an appoint because she is getting worse so she is going in March again for the 2nd time other than that she just sees her neurologist.

She hasn't worked since she had me so I don't know if she can get even get social security disability but they are working on getting her some other type of help. She won't get the life alert thing only if its covered by something. I do bring up the scooter chair all the time. I can see her get weaker but still insists to walk even though she can't get off a chair sometimes by herself. I think she is slowly coming to terms that she will need more stuff like putting up ramps and that and finally is thinking of a scooter chair but is just waiting to see what kind of help she can get. Like you said kmendsley, she is afraid of losing her independence so she does everything she can to feel normal.
 
Jessie, tell your Mom that the scooter doesn't end your independence it keeps it alot longer! I zip up and down my ramp and freak everybody out as I have to go fast so it doesn't get stuck at the top. But I couldn't even pick up my house with the walker, as I had to hold onto that sucker so hard. With the scooter I zip around my kitchen, do my laundry, pick up the dirty boy socks and all still. My hands are bothering me more, so can't open up those potato chip bags, etc so easily, but I keep a pair of pliers and scissors handy...
 
I think she does want a scooter she is going to ask her Dr at her next appoint. I think she will like it and it save on her energy. I for see giving my kids rides with her when she gets one LOL I also told her to ask her dr about something to communicate to us w. She can still talk but it has gotten worse to a point where her dr had her do all these things now before her voice goes.
 
My grndkids love to ride with me!
 
It's very common for people who are ill, especially with degenerative diseases, to put off getting adaptive equipment or accepting that they just can't do something anymore. I saw this with my parents and Annie.

There is a strong psychological impetus to continue living like they always have because to change means having to accept that a big part of what they have know as life is permanently gone. There is a hope that, though I fell today, I'll rebound and be more careful from now on.

The need for adapting to changes is much more apparent to the caregivers.

You might want to consider getting a calling device that your mom can activate with a pendant. Annie got one early on, just in case. She wore the pendant all the time - even in the shower. If she needed help, she could push the button and a machine would go through a list of pre-programmed numbers to dial. When someone answered, it would play a pre-recorded message telling people that she needed help. The first number on the list was my cell phone. If I hadn't been in the near vicinity, I would have called someone else who was to help her.

We also provided a number of folks with house keys so they could get in to help her.

The machine also had a microphone and speaker, so if she was close enough she could actually talk to whomever answered. Fortunately, she never actually needed it, but it was nice to have just in case.

Other systems call a help center when the button is pushed. They are better, but more expensive and I think you pay an on-going subscription fee.

As a generalization, I'd suggest getting equipment that is reasonably predicted to be needed as early as possible. She doesn't have to use it, but it is there at a moments notice. Because the often put off accepting the need for it "now" way beyond when they actually do, by the time they see for themselves that the need it, they really need it badly. So if it hasn't already been acquired, a lot of grief can be had waiting to get it. Experience taught me that if you're not ready to accommodate a disability, you won't have time to get ready if you wait until it's essential. In other words, prepare ahead of time.

I think there is a psychological benefit to that as well because you can make the case to go ahead and get it without pressing the point that the need it now - so you're not fighting the battle of convincing them of their current state of need, but just showing you're trying to be prepared so that when they think they need it, everything is already in place. Plus, they can ease in to using it without thinking it's all or nothing. That avoids the psychological hurdle of accepting the permanence of a loss which prevents them from using the equipment when they really do need it.

In my experience, the patients retrospectively always come to see that they delayed too long in accepting their needs.
 
Oh Phil, you are so right about that!
 
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