MarciaA
Distinguished member
- Joined
- Mar 13, 2006
- Messages
- 118
- 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.
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
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.
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
