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raggedymary

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Oct 26, 2006
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16
Reason
PALS
Country
US
State
ohio
City
norwalk
Okay, new diagnose on Monday, let me catch my breath. My mom has lost feeling in right leg over past year, losing control of right leg, and seems to have back trouble. My dad's health is fragile due to heart and broken leg this summer. I am only child living in state.

Aside from emotional - can't deal with that yet; I am stuck on "practical". They live in a home with stairs and unaccessible bathrooms and big mortgage and market is such that we can't sell.

I understand (and accept, no problem) that I am now the caregiver. I need to make plans for long term care. From what I have found, medicare and insurance are no help day to day. Although not wealthy, I am frugal and can afford, with my husband's help, to leave my job at some point to care for her. I really need to know a time table here.

3-5. Does this mean from diagnosis or beginning of symptoms. She has no trouble swallowing/eating , which I am taking as a GREAT sign that we have time here. Or am I dreaming? I know everyone is different, but do I have a year left before leaving my job? or More? or do I need to start lining things up. If possible, I would like to hire someone to clean, fix meals myself and take them over there, and go from there. Or am I being optimistic?

Thanks for letting me vent
 

Al

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Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hi Mary. I'm assuming it is Mary. Welcome to the forum but sorry you have to be here with us. I wish we could give you an indicator of how long your mom has until she needs real help but there is absolutely no way of telling. The 3-5 is usually from diagnosis but there is a new member here saying he has had it 26 years. Not impossible but he is one of the lucky? ones. There are lots of people here that are in the 5-10 year time frame. Don't lose hope. Be optimistic and hopeful and upbeat. You will need to have a good attitude for what will come ahead. We hope we can be of help to you and your mom. AL.
 

sufernan

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Joined
Sep 11, 2006
Messages
66
Reason
Lost a loved one
Country
CA
State
Ontario
City
Toronto
Hello Mary,
I can only tell you what happen in our case, and all cases are very different. My husband Daniel never had problems speaking, eating or swalling at all. He was walking very short distances and streaching every hour the day before he died. I took a year off from work and it was three months after I came back to work that he passed away while sleeping. It is very difficult to plan when nobody knows what is going to happen or how fast. As Al said, be optimistic but practical. Always check what is going on with your mom and what is becaming difficult for her to do. She will be the one telling you what she will need next.
Take care of yourself so you can take care of your mom!
 

hope

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Joined
Oct 1, 2005
Messages
230
sufernan,

Do you mind me asking how long your husband had the als?

hope.
 

sufernan

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Joined
Sep 11, 2006
Messages
66
Reason
Lost a loved one
Country
CA
State
Ontario
City
Toronto
I am back to answer you

Sorry! I did not check inn for a few days. Daniel had ALS for 3 years. He died December 15 2005. It went very slow at the begining, so we were very hopeful. The last year was a difficult one. Daniel work as a professor in an univeristy in Toronto and he was active teaching and writing when he died. Every story is very different. The only common ground is the name of the deseas and the devastating physical and emotional side of ALS. I really hope someone finds a cure and no family again will have to go through what we went through.
I am here if you need to talk.
Sunny
 

MarciaA

Distinguished member
Joined
Mar 13, 2006
Messages
116
Reason
PALS
Country
US
State
MN
City
Owatonna
Sunny,
I hope you don't mind me being nosey here, but you said Daniel was active teaching and writing when he died and that he died in his sleep. Was he on a BiPap or any sort of ventilator? Did he refuse those devices? My sister's progression is "average" according to the doctors...we're guessing that means about 5 years. Should I expect that her progression will speed up?

Marcia
 

hope

Distinguished member
Joined
Oct 1, 2005
Messages
230
sufernan,

Thank you for answering my question, I hope it was okay. Did you ever have moments were you felt angry and you did not know what way to feel? I try so hard to do everything and sometimes I feel upset and I feel bad when I do.

hope.
 

COlisa

Distinguished member
Joined
Feb 21, 2006
Messages
120
Angry, Angry, Angry

Hi Hope,
I know you weren't asking me, but I will reply anyway :).

My husband has Dx of progressive bulbar palsy (since March 06). I was dealing with it OK for awhile, but lately I have been very ANGRY about anything and everything. I find myself getting angry with him for absolutely no good reason, other than I am MAD! Maybe things are just catching up to me. Maybe this is "stage of grief" (isn't it Denial, anger, etc. ?).

Anyway, I don't like it & I don't like myself when I do it, but I cannot seem to surpress it and don't know how to get rid of it. Maybe it is normal & it will pass & i'll hit the next stage?
COLisa
 

hope

Distinguished member
Joined
Oct 1, 2005
Messages
230
colisa,

I think what is happening is we are angry at the disease and we truly do not know what way to feel. The emotions change minute to minute because the illness changes so much. The anger and frustrations are from trying to keep strong all the time and sometimes we must remember that we are only human and feelings are okay to have. This illness hurts so much, I cannot even put into words what this feels like. I understand how you feel. The tiredness also can make one feel lousy. Trying to do it all is hard. As caregivers it is important to take time for oneself even if it is just to read a good book. Take care.

hope.
 
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