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newfienurse2u

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Loved one DX
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02/2012
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CA
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NL
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Hi everyone, I am new to this. My mother was diagnosed with ALS 2 weeks ago. She progressed from no symptoms to 90% wheelchair bound , difficulty breathing and swallowing, weakness in both hands and severe speech difficulties, all in a span of 11 months. I had been suspecting ALS since last Oct. I am a nurse myself and in my heart I felt it was ALS. My cousin passed away from ALS Nov 2011 as well (He was my mother's nephew). At present my mom and dad are in a retirement home but her level of care will soon be too much for this facility. I am the youngest of 5 and all my siblings think I should move my parents in with me. I have mixed feelings about this. I want her to be surrounded by family but I know the pressure this places on me and my husband. None of my siblings live near us. Just wanted to ask a couple questions, with a fast initial progression does it continue to progress quickly? (My cousin lived 8 months from diagnoses, 1 1/2 year in total) and also What does everyone feel about nursing home vs home. I am sure I will be on this forum many many times asking for support so I just wanted to say hi.

Jennifer
 

brooksea

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Hi, Jennifer. I'm very sorry about your mother and that your cousin passed away.

My husband's progression started slow and remained slow until ALS reached his diaphragm. From what I have seen, usually the fast progression remains so, just as the slow. But, ALS is so different from individual to individual.

I do not know how the healthcare system works in CA, but in the states hospice can be called into the nursing home. Taking on your mother's care would be most admirable, but it will be a FULL time job, as I'm sure you know. Make sure your husband is really on board with a decision to move your mother in under such circumstances, as ALS affects everyone involved.

I'm very sorry you find yourself having to make these decisions, especially with siblings not living nearby to share in the care and decision making process.
 

Katie C

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CJ ya beat me to it!

Jennifer.. again this is from a US perspective but worth looking into... My mom had been living in a lovely assisted living apartment for several years when she developed aggressive lung cancer. Once she opted against chemo and radiation the doctor ordered hospice immediately. Hospice came to the apartment and they took amazing care of her. Yes we as family had someone there as much of the time as possible but it was much less of a strain on the family than if one of us had her living here .. which of course is what we had with Glen. If the place your parents are living offers at least some level of assisted living I would sit down with them about the possibility of combining with hospice care.. which has the added advantage of leaving your parents with at least some semblance of independence.
 

Miss

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Ok, CJ and Katie beat me to it!

As CJ said, caregiving for someone with ALS is a FULL TIME job. It will put more than just a strain on things for you and your husband. I'm guessing that, since you are nurse and ahve lost another family member to ALS you already know this deep down.

With progression that fast, it will likely continue to be fast. I would definitely look into nursing homes with hospice care.
 

Jason's Dream

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Jennifer,

First, let me say how sorry I am to hear about your Mom.

My husband started having symptoms in December 2009, and was diagnosed with ALS in April 2010. He passed away on our daughter's first birthday, November 6, 2011. His progression was fast and continued the same pace throughout. First month he had tingling and weakness in his left hand to loss of fine motor control skills. Second month it attacked his speech. Third month it was his emotions attatched to his speech. Fourth month he was falling. It did not let up.

That being said, every person with ALS has a different progression rate. Some only last 6 months, and there are some cases where it was so slow to where it went into "remission", and some cases as long as 20 years. That being said, from my experience, whatever rate they start at, for the most part, they continue that same pace through out thier ALS journey.

Taking care of someone with ALS is a FULL TIME job. Because it attacks thier speech, having someone else watch them, is hard, because other people simply do not understand thier special language.

Social Security Disability and Medicare, once she has her diagnosis can be fast tracked and can be retrograde.

One question I think hasn't been addressed, is... what does your Mom want? At this point, her wishes should be primary. Have you talked about hospice versus nursing home? Have you talked about DNR things such as Ventilator, Trachea, PEG feeding tube, etc? Have you guys talked about POA's, living and last wills? Have you talked about where and how she wants to die (ie: at her own home, at your home, in a nursing home, with/without heroic measures, etc)? And another conversation, might be to pre-plan the funeral.

I know all of the above paragraph sounds a bit morbid, but with her progression, I would say, now is the time to talk about all of that while she can still talk. She will never be able to communicate her wants and desires better, then right now. More then anything, understsand, she is going to lose ever human decency known to man. I would think that her wishes would be what should be the answer to your questions, and the questions that you should be asking now, is.. how can I make her wishes come true?

My husband pre-planned his funeral. I know that sounds a bit morbid, but he did it for a few reasons. 1.) He wanted to take away that burden for me and take care of me after he was gone. 2.) He wanted to make sure it was his wishes, that way, his family would not try to change the way the funeral went. 3.) He wanted his funeral to be about the 3 greatest loves of his life... his sweetheart and his two children.

One of the things that I am most proud of, is that I honored his wishes. He died at home, without heroic measures, in hospice without a vent or trachea, with his sweetheart at his side.

Know that this is a very hard journey, as I am sure you are quite aware of.

I hope you are able to honor your Mother and her wishes as she walks the most heartwrenching part of her journey of her life.

~ Becca
 

newfienurse2u

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Joined
Feb 18, 2012
Messages
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Reason
Loved one DX
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02/2012
Country
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NL
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Grand Falls-Windsor
Here in Canada where I am located the government will provide approx 10hrs a day of home care if she comes to live with me and our local ALS society will loan any equipment we would need. I have plenty of space in my home. I am hoping if she does come with me that we will be able to find a live in caregiver to cover the nights when she gets to that point. My husband is a stay at home dad so he would also be home mostly but I will have to continue to work. She always said that she never wants to go to a nursing home so that is why the decision is hard. My siblings just don't realize the level of care she is going to need. I work at the local nursing home but if she goes there my Dad cannot go with her because he is not at that level of care yet and he does not drive. They would be separated after 55 years together.


What makes this so hard is that she had a MRI last month and 3 weeks ago her neurologist said she had a severe cervical stenosis that required surgery and he said he felt that her arm and leg problems was related to this but scheduled an EMG the following week and diagnosed her with ALS. So we went from being estatic that she just needed surgery and rehab and all would be fine to the next week being told ALS. Her neurologist said that the stenosis would not cause her speech, swallowing, and breathing problems and "something just didn't fit" so he did the EMG.
Thanks for everyones comments.

Jennifer
 

HelenL

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Jennifer, so sorry to hear of your Mom's diagnosis, and faster progression... Honestly, IMHO I wouldn't bring her and your dad home unless you're totally prepared for 24/7 care... you didn't mention how old your kids are, but what about them during this process? Your husband and you will probably not have the level of help at home that you will in a nursing home. And if you work there, Dad can go in daily with you, and your husband can pick him up, etc. But you won't have to sleep with one ear to the breathing; someone else can do that. Another factor to consider is how accessible is your home for wheelchairs, lifts, etc? Since you do have a large enough home, and you're a nurse, you may be feeling guilty about NOT taking her home; but you also have siblings that can and should be helping... perhaps Dad can move in with you, and you have a guest room for the siblings to stay in for a week here and there while they come to help?

I'm not at that point yet, and I do know that I don't want to torture my family any more than necessary... I also don't want them to feel guilty about not being able to do something. You don't know if how fast your Mom's progression is going to be, and what impact that will have on the kids either. Hospice can do al ot for you whether she is at home or nearby in the nursing home. And as long as you're there every day anyway, I would imagine that she may even get better care there, than your hubby and yourself trying to do it all.

Good luck in whatever you do, and definitely ask your Mom what she would prefer in the long run. Maybe she can be with you until she reaches a certain point and then it would make more sense for her to be moved to a higher level of care that she'll need. BTW, I also plan on making my funeral plans, etc.
 

Chase_Corin

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Joined
Nov 24, 2010
Messages
135
Reason
Loved one DX
Diagnosis
11/2010
Country
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State
On
City
Perth, Ontario
I know the decision you are struggleing with. And it is admirable to want your mom to be surrounded by family. I know that it is a hard thing to think of, you parent being in a nursing home, or palative care unit.

Right now my family is copeing with the massive changes that need to happen with us and our home. We never even drempt that one of us would become disabled or end up in a wheel chair. Our hallways are not wide enough, the bathroom isn't equipt and the bedroom isn't outfitted with enough space for the equipment that my father needs.

I am also in Canada and the ALS society here is amazing lending out equipment and providing home care. What you havn't experianced yet is being home alone with your mom when she falls. My dad fell last week and my mom was here I arrived a few minutes later and was screamed at to get my ass downstairs. Neither my mom or I could get my dad up from off the floor. It was embarasing for dad and compleetly eye opening for mom and I.

My mom will not leave the house or dad for any period of time includeing going to the end of the driveway to get the mail. When I am working she puts herself on "dad duty" and when I get home we share until she does to bed then I take over. I have a baby monitor in my bedroom that broadcasts any noises from mom and dad's room so that I can help if there is an issue at night. Because mom has the tendancy of tuneing him out.

The impact on the caregiver is a great one, would one of your siblings consider moving back closer to home? Perhaps you should give them some more information on what to expect from this disease because I can assure you that you will NEED the support of your family. My brother is a long haul truck driver and has changed jobs to be home more often to help us take care of dad. The more shoulders you can have around you to spread the load the less chance you have of becoming burnt out as a caregiver.

Somthing you also need to look into if your father is not able to act as her proxy is a POA for you to make decisions in her stead if you are to take over her full time care. Currently we are broaching the subject of a "Living will" wish list that dad wants. None of it is easy to talk to your parent about. I am only 33 I never expected my dad to be so ill at 66 years old.

We see our parents throughout our life as immortal, never changeing and perfect the way they are, to see them fail and weaken is the hardest thing we can do in life, but being their support makes us stronger in the long run.
 

tammyg

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md
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baltimore
Sorry you are here Jenn. I know in your heart you already know the answers. Spend as much time with her you possibly can.
 

momap53

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Joined
Jul 2, 2011
Messages
1,663
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PALS
Diagnosis
05/2011
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GA
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EGA
Jennifer, I'm so sorry that you and your family are facing such a difficult decision. I'm praying for guidance and peace for you whatever you decide.
 
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