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MarciaA

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116
Reason
PALS
Country
US
State
MN
City
Owatonna
Well, I found out last Wednesday that my sister signed up for Hospice Care (at home). She now is on oxygen most of the time, has a hospice nurse come in for care and information, and has a "comfort care" kit (morphine and other meds). A nurse friend of mine told me that generally hospice doesn't come until there's only about 6 months left or so. I know with ALS it is so unpredictable...but I'm guessing that 6 months is accurate...perhaps even optimistic. Kathy's having a harder time swallowing (even since a couple weeks ago). At least she has the feeding tube and is taking liquids and Ensure through it. She now battles expending so much energy to go to the bathroom and is considering getting a catheter so that she can save energy for other things. Many here have spoken against catheters and in favor of female urinals (or whatever they're called)...do they take a lot of figuring out or a lot of dexterity?

At this point I go back and forth between "not thinking about it" and sobbing at any little thing. I try to stay busy...but if I get too busy, then it's frustrating. But if I'm not busy enough, I find myself thinking about it so much that I break down. When Kathy was diagnosed two years ago, I remember researching ALS and reading and re-reading that the majority die within 2-5 years. Optimist that I try to be, I was going for 5...but it's looking like it will be about 2 and a half. :cry:

I haven't told my daughters about the hospice yet. They're going along to see her tomorrow and we'll probably talk about it then...or at least they'll notice the oxygen then. I haven't decided to tell them that it could be 6 months or less...any advice?

Kathy is the dearest person in the world. She is so loving and so strong. Her husband continues to be an amazing hero through all of this but it extremely tired. They've been married for 30 years and their love is so strong. Everyone should be fortunate enough to have a love like that! I can't imagine what this world will do without her smile...without her wit and wisdom. I know she will continue to inspire people long after she is gone...I would love to have her here forever...but that's not an option. My magic wand must still be on back-order so I can't just wave it and take this all away. Someday I pray that they find a cure for this horrible disease so that others don't have to go through this.

As always, thank you all for listening and for being there for me.

Marcia
 

Beebe

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Joined
May 2, 2006
Messages
319
Diagnosis
4/2006
Country
oce
State
new jersey
City
forked river
Hello Marcia

Hi there Marcia, I'm so sorry to hear about Kathy, there has been so much sadness among our PALS. Jack had a feeding tube inserted last Monday, finally. He is doing well with it. He too has progressed quite a bit lately. I'm here for you, we started here together almost 2 years now. Doesn't seem possible! Hugs to you and Kathy. Fondly, Beebe
 

atorcho

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Feb 17, 2008
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Loved one DX
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US
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MO
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St Louis
I am new here, I was a caregiver to my Mother. It has taken me 5+ years (since her death) to come to a forum like this again, but I started remembering things that I think I could have done better. Hospice can be a life-saver for the family. It allowed my Mother to rest peacefully at home, surroundings familiar to her. For anyone you know that might be in the last 4 to 6 month period, think about hospice at home and PLEASE remember to try to hydrate them. (She had a feeding tube) but my Mother loved small sponges soaked with water, which we realized we could fill with just about anything, we tried coffee (which had been her favorite drink) and I can still see the happiness in her eyes when we gave it to her! The more I thought about it, your mouth can get very dry, especially for those having trouble breathing, remember to swab their mouth with these sponges (w/ water) if they seem to like it. She would suck on them too, and even in the last month it was enough to help her but not too much that she would choke. Sorry for the rambling, hopefully this is the last step in my recovery and might help another caregiver out there......peace.
:)
 

brooksea

Legendary member
Joined
Sep 27, 2006
Messages
5,171
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HM
thanks for the info atorcho! Hope you find peace and happiness...
 

givenin

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Joined
Jan 25, 2007
Messages
109
Reason
PALS
Country
CA
State
b.c.
City
salmon arm
Great idea! I will keep that in mind for sure.

Thanks
 

Icanmanz

Senior member
Joined
Jul 14, 2007
Messages
947
Reason
PALS
Country
Uni
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Texas
City
Tomball
Hi atorcho, thanks a bunch for sharing with us. May God bless you, no doubt, your sweet mom is resting in peace!

Irma
 

MtPockets

Very helpful member
Joined
Jun 1, 2006
Messages
1,528
Reason
PALS
Diagnosis
05/2006
Country
US
State
Ms
City
Gulfport
My Doctor put me on Hospice care about a month ago now. That is one reason I have not been on the forum much. The pain levels in my legs had gotten too high for me to be able to get any sleep.

Now they have me on the pain patches and liquid Lortabs to control the pain. So at least I can now get some sleep at night.

The hospice people have been great to help me get things and organize things to where they work much better, I now have a wheel in shower chair for baths, new pressure stockings for the swelling in my legs, and they have given me much needed information on products for the handicapped and caregivers.

If you are even considering their help ask your Doctor to recommend them.

God Bless
Capt AL
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
I knew Hospice is a great resource, Al. Thanks for confirming it for me. I don't like to hear that you have to use it, though! :cry: Hugs, Cindy
 

hkohlman

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Jan 2, 2007
Messages
42
Country
US
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Montana
City
Billings
hospice care

Hi all it has been a while I know. I have a hard time reading the forum these days because it is really hard for me to know that my dads condition is getting worse and soon we will also have hospice care. Al I am glad you have extra help now. Sorry it has to be hospice though. Everyone please know that you all are in my thoughts daily even though I don't show up on the forums much anymore. I hope you all had a good holliday season and a choc. valentines day.

Take care.
Heather
 

Icanmanz

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Joined
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Messages
947
Reason
PALS
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Uni
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Texas
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Tomball
Thank you Heather. God bless you and your dear Dad! Thanks for posting amidst this nightmare!

Irma
 

jdale949

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Jan 3, 2008
Messages
12
Reason
CALS
Country
US
State
Texas
City
Detroit
Marcia

My mother lived a year and 3 months from the date of her diagnosis. She died peacefully on the 18th of last month. I went through the same roller coaster emotions that you are experiencing. I had hospice care for her and private 24 hour care for her but it was very difficult to see a once vibrant woman go through something like this. I have two young children ages 5 and 10 and I was up front with them all the way. I did not hide anything. If it looked like my mother may not last much longer than I told them as gently as possible. I think knowing everything along the way and seeing her almost everyday helped when the end finally did come.
I am sorry your sister is going through this. Enjoy every moment that you can with her. Tell her stories, make her smile, because that will be the highlights of her life now and those will be wonderful memories that you will always keep with you.

Jenene
 

MtPockets

Very helpful member
Joined
Jun 1, 2006
Messages
1,528
Reason
PALS
Diagnosis
05/2006
Country
US
State
Ms
City
Gulfport
I am so sorry to hear about the loss of your mother Jenene. I pray that you will find peace in the midst of such a time in your life.

I have lost my dad to Alzheimer's, mother in law to bone Cancer, and my mother to a prescription drug overdose. I know there is really nothing anyone can say to touch your heart during such a time.
 

jdale949

Member
Joined
Jan 3, 2008
Messages
12
Reason
CALS
Country
US
State
Texas
City
Detroit
Thank you MtPockets!

Thank you for your kind words. I lost my dad 3 years ago to a sudden heart attack then my grandmother a year later and now my mom to ALS. We must have pretty strong hearts to be able to endure all this heartache huh?

Jenene
 

MtPockets

Very helpful member
Joined
Jun 1, 2006
Messages
1,528
Reason
PALS
Diagnosis
05/2006
Country
US
State
Ms
City
Gulfport
I had to remove myself from Hospice care in order to go to the ALS Clinic in Lafayette, La, this next week. I have an appointment with the neurologist Monday and with the clinic the following Monday.
Please remember us in your prayers as we travel and for guidance and wisdom for all the Doctors involved.

This is the first clinic I have been to since I was Diagnosed on May 11, 2006.
I hope everyone has a great weekend.
 

rick/Wpg

Distinguished member
Joined
Jan 4, 2008
Messages
149
Reason
Lost a loved one
Diagnosis
02/2008
Country
CA
State
Manitoba
City
Winnipeg
Hey Capt. Al
We will be thinking of you this next week and praying for you! You are a blessing!
Look forward to hearing from you on your return
Blessings!
Rick & Joan
 
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