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Lolli

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Hello I am new here so Im grateful to anyone who takes the time to respond.

I am not yet a caregiver but will be here soon. My mom has ALS or PLS the doctors cant seem to decide. It is progressing wildly. She is in a wheelchair, has lost fine motor control in her hands and is having trouble with her speech and it has only been a year. We planned to have her move here to my city early next year along with my brother and we were all going to get a place together (including my 4 yo son and boyfriend). This would allow my boyfriend and I to work and my mom to finally quit working and get some disability. We would be making the money and paying the bills and working and my brother was going to take care of our mom while i was at work. Then I would take care of her nights and my days off. I just found out my brother plans to bail and move to another state with friends now that he knows hed have to actually do something for somebody else instead of just living off of her.

Im scared. I want to do everything for my mom. Shes amazing. How am I going to be there as much as she is going to need and still go to work? I dont even know how much more it will have progressed by then. She is all there mentally and God it is a beautiful mind. I eould never dream of putting her in an assisted living facility. I have to be there for her but how do I support my family financially if she needs me to be there? I dont know how I am going to do this but I know I want her in my life and in my sons life and she deserves everything. Any tips would be appreciated.
 
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JimInVA

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Greetings, Lolli!


I'm sorry that you have to find yourself, here, but glad that you found us nonetheless. I'd say that you are about to embark on a "most unexpected journey"... but if the truth be told, you're already on it. There are some very good "stickies" within the top of major sections the might provide you with some initial information. Knowledge will be helpful... sometimes for knowing what to do and at other times for knowing what not to do. Unfortunately, there will be other times when you'll find yourself in some circle or maze that seems to have no proper direction or desired exit.


The best I can tell you is to be flexible. Take each day as it comes and do the best that you can. It says much about your character that you've elected to be your Mom's caregiver. It is not an easy task and will be full of times when you'll search out some dark corner to let some tears fall. But there will be many other times when you'll come to realize that you've just made your Mom smile or laugh again... or you've shared some special story that makes this a moment to last a lifetime... or you find some new way to do something that was thought impossible to again do.



I believed that I knew "love" and what it was all about. I've been on the ALS journey since Nov of 2012... and I've never loved, felt love or experienced love as I have in these past several years. When you have successes, I hope you'll come in here and share them. And when you feel lost, also let us know so we can help keep you pointed in the right direction. Collectively, we have experienced many, many things. But we won't have all the answers, either. But, just perhaps, something that one of us might post and say will give you an idea that becomes the seed that grows into the answer of the question you'd been struggling with.


If I could offer one parting thought, it would be to "trust in yourself". From the little that you've already presented to us, I think you're going to find your way... even if only a step at a time. Again, welcome!


My best...


Jim
 

Narrowminded

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Hi Lolli and welcome. You will find this is a little piece of heaven on earth.

First, breathe. Right now everything seems overwhelming. You need to take things one day, and sometimes even just one minute at a time. Take some time to read a bunch of the stickies. Lots of great info there.

Make sure you check into any available help. Such as palliative care, home health and whatever she might be eligible for. Reach out to the ALS Assoc in her area and find out what is available. The social workers there are invaluable with their information. They can guide you.

Don’t be afraid to get help with Mom. I know you want to do it all, but you need help. Going it alone, some of us have to at times, but it’s definitely not recommended.

And come here, ask as much as you like. We are all here to help each other.

Hugs,
 

lgelb

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Hi, Lolli, sorry to welcome you. Also sorry to hear about your brother bailing but truly, better now than later. Maybe you can put all the numbers together with your boyfriend and mom and consider if you or your boyfriend, whichever one earns the least, can forego working outside the home so someone can stay with your mom, factoring in her disability benefit. One or both of you could still do some freelancing.

Taking care of your son is no small task, either, but some people do manage both, often with the help of their social network. Some people bail, others step up. You will never know who's who until you make the situation known.

My guess with the progression you describe is that your mom is more likely dealing with ALS than PLS. And it's completely normal to be scared. Fear is only a problem when you don't act on it. Lay your plans, make sure your mom's legal paperwork is done if not as yet, and you've at least got a running start that makes you feel more confident, even when you have to make a left turn later.

We'll support you however we can, Lolli.

Best,
Laurie
 

KimT

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Hi Lolli,

As a PALS without a caregiver, I admire your love and sacrifice for your mom. You have already shown great character.

Perhaps your brother could pitch in with some funding to help pay for in-home care for your mom. Every little bit helps. The idea that PALS need highly skilled care is just not so. Local community colleges and vocational schools probably have students willing to gain experience for very little money.

Don't try to have all the answers at once. You need a good support system and you need to take care of yourself and your child. Maybe people at work can offer some advice on how to handle the care needs. I have a page on LotsaHelpingHands that gives people the opportunity to volunteer for "activities" such as taking me to the doctor, grocery shopping, running errands, etc. Some of my friends have offered to help me when the time comes. I think it would be a big help to find someone who can cook simple meals, do light cleaning, and laundry. That would save you a lot of time.

Please let us know if you need answers to questions that pop up. Someone is always listening.
 

Atsugi

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Maybe it will be useful, Lollie, to see my own perspective of caring for a PALS we love.


Maybe.


When my wife was diagnosed, I stopped a lifetime of thinking about myself and started thinking about her for a change. What did she need?


Since death is inevitable, I decided that my mission in life from now on is to make her final months to be as pain free and worry free as possible.


I quickly saw the toll on the family, and realized that I had to work for them, too.


ALS will inevitably destroy one life, don't let it take yours, too.


In a manner of speaking, your son has detached. He's saving his own life. Maybe you can connect with him with that knowledge, so he can be some part of this care-giving effort without sacrificing more than he can stand.
 

affected

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Sorry to see you here Lolli.

Some great suggestions on keeping a connection to your brother and seeing if he can help in some way, financially would be super. Otherwise could he come and give you all a weekend off each month or something.

The panic is very real, especially when you get the shock of the diagnosis. But somehow we bumble along and tackling one day and one issue at a time helps.

See if you can work out what has to be sorted first and just work on that for a start.

The wealth of information here is huge and then the support of people real time is priceless.
 

beauty4everyone

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Lolli, Consider doing some research on the following: It's in your area and listed online as a Certified ALS Association Clinic. I don't think you can get much higher than that.

The Indiana University ALS Center at IU Health
355 West 16th Street
Indianapolis, IN 46202
Medical Director - Robert Pascuzzi, MD
Phone: 317-963-7385

Dr. Robert M Pascuzzi MD Reviews | Indianapolis, IN ...
https://www.vitals.com/doctors/Dr_Robert_Pascuzzi.html

Jan 01, 2012 · Dr. Robert M Pascuzzi is one of the best neurologists in Indianapolis, IN with over 12 areas of expertise, including Alzheimer's Disease, Stroke, and Neuromuscular Diseases. He's been practicing for over 37 years. (Check more about him and see his photo online.)

I am close to a similar clinic. In addition to proscribing needed medication, they have the expertise and know how to get equipment you need before you need it. It's a multi-discipline approach with a clinic where you meet with social workers, respiratory, ALS Assoc.. individual, etc, for comprehensive managed care information. They measured me for, ordered, delivered and instructed me on the use of my electric wheelchair. (Covered by Medicare). I'm getting by with a Transport chair right now. The other is for near future use so I don't have to wait three months for the paperwork, etc.

Regarding Riluzole (Rilutek) and Baclofen pills When you have the prescription, call every pharmacy within easy driving distance. The cost difference for me, if I paid cash: $1,700.00 to $150.00 for the same number of pills. Sometimes meds. are cheaper for 3 months rather than 1. Ask!

Mayo Clinic online has helpful information, too.
Sometimes, trained medical students volunteer to sit with a person for a couple hours as part of their practicum. No sitter is permitted to touch or treat patients. Registered nurses can, though.

This may give you enough information to get started. Getting a referral to the clinic probably would be your best starting place.

May all go smoothly as you plan the care for your mother. May blessings abound. B.
 

lgelb

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Beauty & all,

The MDA and ALSA both certify centers of excellence. It's a pay-to-play thing and great centers can be designated as either.

Please don't paste info, especially promotional writing, out of Vitals or other sites. It's hard for many of our members to scroll/read.

As we often mention, there are many resources for recruiting unskilled helpers whom you train. People with credentials such as CNAs, NACs and the like are often helpful, as are students and the semi-retired.

Remember the search box at the top right of every page -- it can be your friend. Don't forget to sort by date if the information has evolved.
 
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