"End Stage MS"

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"End Stage MS"

Postby Sisterluke » Thu Aug 05, 2010 6:53 pm

Hello all, My mom has something called "end stage MS" and she currently stays at a long term care facility since summer of 09.

I guess to sum up my mom's story short, she's had symptoms of MS since having me in 1984, and she wasn't officially diagnosed until 1992. She had a progressive form of MS because she as she weakened(need a walker then a wheelchair) within a 6 month period she just kept getting worse until she didn't have any moments where she could walk again.

As the years passed, her eyes worsened and she was diagnosed "legally blind" so she couldn't drive.

I can't state every single medication she was on because I didn't know them all when I was a kid. I can say though that every 3 months she would go to get these "infusions" which were some kind of medication they would run through an IV to her for about 3 hours. She stopped using that after a few years and I don't know why for sure, my dad would probably know.

She would take a steroid long term called Predisone(sp) I guess it was supposed to help with her spasms and she never wanted to go off them for some reason even though she still had the spasms. I think she thought they were helping her and who knows, maybe they did help her in the beginning.

She took Paxil for anti-depressant.

The weirdest part of her disease was probably the last 7 years she lived with us, she started having uncontrollable bits of laughter and crying and it used to freak me out. I would always ask her what's wrong or, and she would get upset at me for for asking her.

I learned to deal with those moments she had, but then she started "hearing voices" and talking to herself and I knew something wasn't right. I always told my dad when she goes to see the Neurologist to ask him about these issues she's having. She would always deny that she talked to herself saying that she had the ability to communicate with ghosts or invisible people. She also developed paranoia and she told me numerous times each day that the neighbors were after her and that she needs to move out of the house. She would have the doors locked, windows locked every single day, and it was very difficult for me to care for her at this point. I didn't what else to do or who to turn to. My dad was always saying she's fine and there's nothing wrong with her.

So this last year, she was pretty much bedridden(she had overcame a serious skin ulcer that developed from her sitting in her wheelchair and having limited mobility) and she started getting really weak within a month span she lost her ability to use her voice and lost her ability to swallow on her own.

The result has been that she currently at a long term care facility, on a feeding tube, she seems to be awake and breathing normally but she's not able to really move her limbs anymore or her arms .

The story is very depressing, but I don't know where else to post this and see if I get any sort of answers or comments. I dont really know where to go from here, she's on hospice care right now and that's been fine I guess. I just want to know if anybody else knows any people that have had this very severe form of MS or know anybody with these type of MS and if you do, what does the family do to cope with this?

I really don't understand how she got so bad since 1992. The neurologists don't seem to have any answers for me or my dad, the doctors don't even understand it. It was so difficult to just find her a long term care facility because nobody wanted to take her in. The hospital rejected her as soon as she's out of ICU and it's very upsetting for the family to go through.

I really don't know anybody who has gone through this except for I know a lot of MS patients I meet, they are walking and talking and look like they don't have it. It really makes me angry because I always ask myself how come my mom can't be like them?

Again I'm sorry for the long rant but I just wanted to put it all out there and see if people had any information they could share for me or knew anything about End Stage MS so I didn't feel like my mom was the only one who was suffering from this.

Any response is appreciated and thanks for reading
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Postby KateCW » Thu Aug 05, 2010 10:11 pm

I really don't have anything helpful to add, ut wanted to tell you I am sorry and let you know that I read your post.

Aside from MS, could your mother have a psychiatric illness that may be causing her paranoia and delusions? I di know of people in long term care facilities with MS, but none have the psychiatric symptoms you describe. Perhaps medications to treat a mental illness could help?

I think I have heard of the emotional lability (crying, laughing, euphoria) as an MS symptom.

Are there social workers at the long term care facility that you could talk to about your concerns? Good luck, please keep us posted.
Kathy, 49 with PPMS,full time scooter.
Married to a wonderful man, mother to a darling 9 yr old boy
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Postby elyse_peace » Thu Aug 05, 2010 10:58 pm

Slsterluke,
I'm so sorry for the difficult situation your Mom's health has brought to your family.
There are many on this site who are more informed than I, but here is a thread ( http://www.thisisms.com/ftopict-12566.html ) from this site about a woman who was unable to move her legs or to speak. She has had the Liberation Procedure to open obstructed veins (CCSVI), and is now in a facility where she is getting physical therapy. She can now move a bit and speak. Physical therapy is so important.
Please don't despair. It will take a lot of work, but your mom can be helped, at least a bit.
Visit this site. Read posts. Learn as much as you can. There is much information here.
Blessings to your mom and you and your dad (he probably says she's fine as a bit of denial: if you don't recognize it, it doesn't exist.
Please try to be her advocate. Ask if the facility offers physical therapy to her. If not, maybe you can get them going.
Good luck to all of you.
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Postby lyndacarol » Fri Aug 06, 2010 5:55 pm

Sisterluke -- You can be sure that many people will read your posting here, although not everyone who reads it will respond. Also be sure that each of us understands your situation and feels so sorry for your mother. We each hold our own unique ideas about this disease; we know there are no proven answers for us yet. We want to answer any of your questions that we can; unfortunately, without a definite solution to this problem, the best I can offer you and your family is my prayers. May you find the love, support, and courage you need in this difficult time.
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Postby scorpion » Fri Aug 06, 2010 6:12 pm

lyndacarol wrote:Sisterluke -- You can be sure that many people will read your posting here, although not everyone who reads it will respond. Also be sure that each of us understands your situation and feels so sorry for your mother. We each hold our own unique ideas about this disease; we know there are no proven answers for us yet. We want to answer any of your questions that we can; unfortunately, without a definite solution to this problem, the best I can offer you and your family is my prayers. May you find the love, support, and courage you need in this difficult time.



Well said....
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Postby Sisterluke » Fri Aug 06, 2010 6:48 pm

Thank you all so much. It's a pretty dire situation and I've yet to come across anyone with the same case. I don't want to give up just yet, I will find something for her.

It's hard to "move on" so to speak when the neurologists are like "well nothing can be done". It's not something anybody wants to hear about their loved one.

The best I can do is just spend as much time as I can with her day by day.

Again thank you for your comments. I'll keep everyone updated on my mom.
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Postby Persistent » Fri Aug 06, 2010 7:14 pm

Sisterluke....very sorry to hear about your mother. Just a couple of thoughts. Use them as you feel right. The brain damage from late stage MS can cause both the pseudobulbar affect ( uncontrollable laughing and crying ) and Psychosis ( auditory and visual halucinations ). Additionally the Psychosis can be worsened by steroids and also by narcotics that may be used for pain control by the hospice team.

You might want to discuss with your mother's doctor treatment options available since these are somewhat limited. If she is still on steroids ask if these still need to be continued given the stage of her MS. Ask if any narcotics used by the hospice team could be minimized to help the pain but no more. Discuss if Dextromethorphan might be an option to treat the pseudobulbar affect. If all of this fails would antipsychotic medications be indicated.

Given that your mother is on Hospice care it is hard to know what all they might want to do.

Again, very sorry to hear about your mother. Hope she can stay comfortable.
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Postby Persistent » Fri Aug 06, 2010 7:33 pm

One more thing. A urinary tract infection ( UTI ) can worsen the Psychosis. Ask if she has had a recent Urine analysis ( UA ) and if not would they consider doing one.
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Postby erinc14 » Sat Aug 07, 2010 6:54 am

emotional liability like laughing at inappropriate times is common , i did that often but not so much now it was very embarrassing as i had no control . . bouts of depression and crying easily are also common (thankfully i didn't have those }. as for seeing and hearing things it sounds to me like it could be bipolar disorder . a psychiatrist or psychologist would knew much more not a neurologist. there is very good help for that :!: i wish you all the best .
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Postby erinc14 » Sun Aug 08, 2010 7:03 am

I wanted to also mention extreme paranoia and thinking people are after you are typical of bipolar disorder . I know this because I live with someone with this condition and that it is treatable .
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Postby MSmama » Tue Aug 17, 2010 1:39 am

Hi Sisterluke,

One of my dear MS friends who is wheelchair bound developed a urinary tract infection and whilst in hospital was put on a medication and developed a psychosis- she thought her visiting husband wasn't her husband and that he was there to kill her. When the meds changed her behaviour normalised. I think the offender was a sedative or pain reliever but not sure.
All the best.
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Postby Jenmo » Fri Aug 20, 2010 10:28 pm

Hi,
Your post really struck a chord with me. My mother also suffered from MS that was progressive and eventually became "end stage". She too suffered from loss of vision, mobility and control of her bodily functions. As her disease progressed she to lost the ability to control her impulses and social reasoning. It was a result of the MS scaring and brain atrophy - which is organic in nature. My mom simply did not have the ability to completly control her behavior. It was a very difficult thing for most people to understan. It was a very sad journey for my mother. She was a single parent who sucessfuly raised two children (we both went to college and obtained advanced degrees) all while suffering the devasting effects of MS. Circumstances (like almost burning the house down and allowing strangers to live in her home) forced me to obtain guardianship over her during my senior year in college. We kept her at home as long as we could but we were eventually forced to place her into a nursing home facility.

Over the past couple of years it became difficult for my mother to swallow. We refused to make her drink thickened fluids as she hated them and food/drink seemed to give her pleasure. We did this knowing that she could aspirate her food/beverages/saliva and develop aspiration pnemonia (sp). In April of this year that is what happend. She was hospitalized with respitory failure. Instead of taking heroic measures, we allowed nature to take its course. She passed on April 12, 2010. She is now free.

I write this to share that I understand what you are feeling. I also feel some frustration when I see ads and promotions that seem to depict MS as something that can be controlled. For most - that might be true. But MS has the ability to cut short a person's life and devastate a family beyond words. It is a wicked disease. All we can do is obtain the best care we can and to just be there. I had a hard time accepting what was happening to my mother. Finally - with the help of counseling- I learned to not see my mom as she was but to accept and appriciate her in the moment - no matter how bad things seemed. I was just able to "be" with my mom. Seemed to help...

During my mother's struggle, I was diagnosed with stage 4 colon cancer AND MS. I try not to compare my disease with my mom's - but it is hard. I just try to live everyday. I just recently went on "sabbatical" from my employment due to my MS. (And everyone thought the cancer would get me first ;-)

Just know that my thoughts and prayers are with you. I do understand what you are going through and how you feel. Just be there for your mom the best you can and don't forget to take care of yourself. MS sucks and we need to find a cure!

Jennifer
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Postby dlb » Sat Aug 21, 2010 8:35 am

Oh Jennifer,
First of all.... Welcome. Words can't express all I feel for you and all that you have/are going through. I know how difficult it is to be dealt a dx of MS when you have an intimate knowledge of the devastation. I have a strong family history as well and there have been some harsh outcomes. That alone is difficult & you've had to face a double whammy personally as well as the tragic loss of your Mom. I think you will find much help and knowledge here. Best in your journey for wellness....
Deb
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Postby elyse_peace » Sat Aug 21, 2010 7:09 pm

Hello Jennifer,
I am so sorry for your loss of your mother and all the pain that led up to it. Also for your new struggles, now before you have even had time to stop reeling from the last assault.
I wish you strength and healing.
Elyse
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Postby LR1234 » Sat Aug 21, 2010 11:40 pm

Hello Jennifer and Sisterluke,
My sympathies go to both of you. I also have a first hand account of what this terrible disease can do to people (my aunt had MS).

@Sisterluke It must be so hard to see a relative go through this and I wish you and your mum the best care and the help she needs.

@Jennifer After being through everything you have been through I can only imagine how much strength was required to get through each day. You are one brave lady.

I hope for all of us there will be better treatments and stem cells to regain loss functions as none of us deserve the struggles this condition can bring.
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