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  • Well I started my Christmas shopping today. Bought a good bit and will probably do most on line. I was still nervous leaving him today. I've got to stop that. Something could happen even if I were here. I guess the more I get out the more relaxed I will become. How was your day?
    Yes. Thank goodness. Going to start Christmas shopping for my 4 grands. Like I'm in the mood. Life goes on and they didn't ask for this ALS to come into their lives. Woke up 3 times with secretions. Ugh.....one of those nights. Glad your mom had a good night. Did you get to rest yesterday, I hope so.
    Because of some cuts with medicaid the rt now comes every 3 months that's just crazy so sometime this month she will be here. No suctioning last night. Her secretion don't have an smell im keeping an eye on them. Will u be going out today
    Bless your heart....do you think she has an infection? When you change the inner canulnar does it have an odor? That is always a sign for me. I can't figure out the secretion process. Somedays it's a lot other days not so bad. Only woke up once to suction him so that was good. Please try and get some rest today. It can take its toll. Some days I wake up and all I can think about is laying back down. When is the RT coming over?
    See what I mean - no one in my hospice program was allowed to touch the vent. Maybe they can at least bath her for you. When Joe is bathed, I have to stand by him in case the tubes come undone on the vent. I guess some help is better than none. Wouldn't it be nice if they would handle things so you could rest? Not going to happen....when he was hospice, he was prescribed morphine. I would give him some before he went to bed. His home health dr doesn't like using the morphine now. I think he doesn't want him to build up a tolerance so when the end comes it will be more effective. He didn't come out and say that but that's my opinion. The good news with hospice is you don't pay for anything.
    They are also going to evaluate her every few months to check progression of her condition. They also spoke to me about pain medication if my mom ever needed stronger medication they will have a kit here at home with a liquid medication that is given by mouth 5 drops. Did they give I this kit when ur husband was in hospice
    Oh boy I was gonna tell u not to worry but I know thats easier said then done we will worry no matter what. I think those r the worst days for me when Im up all night suctioning. I t doesnt happen that often but I remember when I used to have three or four days in a row like that I would cry and think to myself I couldnt take another night like that. Hospice came over today they explained they can give me a cna four hours a week but they cannot suction or touch feeding tube just sit here and watch my mom so I said I will let thwm know when I need the cna since that person cannot suction. They explained they will send a nurse for wound care
    Well - so much for the lack of secretions. I was up 3 times last night suctioning him. Tired, tired, tired today. Did hospice come over?
    The CNA only stayed long enough to help me put him in the chair for 30 min and back in the bed to bath him. I sent her home. Not a good fit. Have another new one coming over on fri. Hope she is better. Everything is ok. Loosing is ability to speak more and more each day. For some reason his secretions are not as bad. Do you think I should be worried? Worried when they are bad worry when they are good. That's just me. How r u and your mom?
    Did they send that cna back or a new one... an intake nurse is coming tomorrow from another hospice program she said to do an evaluation on my mom. I will let u know how that goes hope all is well with you and your husband
    As a matter of fact I might be able to go out Friday and Saturday for a couple of hours each. I don't know how to act. I'm so tired I think I'd just like to sleep. My CNA has the flu so they sent someone new over today and what a nightmare. She didn't do a good job on the hoyer lift and he was so irritated. That makes me a nervous wreck.
    Glad you had a good time with your daughter. You deserved a break. I remember when Joe did the gasping thing. He had an infection. glad the RT is coming tomorrow. His oxygen stats were low so I'm curious as to what's going on with your mom. You said your mom had a bed sore. My husband has a sore on his back. The spring on the piece of junk mattress Medicare paid for came thru the mattress. I though we had it under control but the RN came today and made this face. She's calling a wound care nurse to come and look at it. It's always something.........I've tried so hard to avoid bed sores. Of course I feel bad.
    Yes you agreed to help with your mom but you also have a life. I wish there were something I could do. Please enjoy the time away today and enjoy your daughters B-day. Have fun. Yes I did remember about the time. I guess I do have a little bit of brain cells left.
    Long term care insurance helps pay for nursing home care. I'm only 63 and I hope I won't need that for a long time. I just don't want the burden of taking care of me on my sons. My oldest son called the other day and asked if it were ok for he and his family to go to Disney world this coming Christmas. His dad and I don't want he or his brother to put their life on hold in anticipation of.....he might go tomorrow or he might last a couple of more years. Only the good Lord knows.
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