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      CommentAuthorSusan L*
    • CommentTimeSep 25th 2010
     
    We need to bring back our Cruise Thread. I think I'll go look for it! Cap'n Phranque are you ready to cast off?????
    • CommentAuthorCharlotte
    • CommentTimeSep 25th 2010
     
    We have had a relaxing time parked at our friends. We were going to leave last Tuesday but our friend sounded disappointed, so we have stayed on. She has a very controlling husband. They have been married 35 years but when he retired last year they had to start spending 24/7 together which was harder than just evenings and weekends. It is strange as we were not real close but friends in Christ and had not seen each other since the mid 90s. But it has been an enjoyable visit - we both like The Young and Restless so I have someone to chat with about that show.

    I posted on Facebook that sometime this next week I would be back to good wi-fi therefore back to playing the games there. My phone just does not have enough strength to play the games with all the graphics. Anyway, she said something and sounded disappointed again that we would be leaving. I told her about two weeks on our black water tank is max but tomorrow I think I will check it to see how full it is. If it is not too full may stretch it a few more days or find a place to go dump it then come back. Art said he doesn't mind here cause it is relaxing and not stressful. He can stay to himself or visit - no pressure. Technically speaking - we are on a 110 power source and should really be on 30 amp at least.

    It is nice to have someone to talk to and not about Alzheimer's. Most of the time this site is the highlight of my conversations except with Art. We all know how limited discussions are with our AD spouse! I am realizing just how much of the decision making I am having to do. I have to think of the future - what is the best for him and how far am I willing to go (like drive the MH). Neither one of us are ready to go back to the stress at my sister's, but I need to find a place to park for an extended time until I decide whether to go south for some sunshine this winter. I have to decide how much of the money I have saved up (th $7000 we got from his dad's IRA) do I want to spend on traveling like he wants to do (I want to also) or keep being a tight wade? So far we have not had to try living on just his SSDI but my unemployment stopped a few months ago so we are getting close to that.

    As all here - I hate having to make the decisions all by myself. He does give his input but I still have to decided. I have to look at the whole picture, just not the moment.
    • CommentAuthorCharlotte
    • CommentTimeSep 25th 2010
     
    I forgot - our cat loves it here too cause she can get outside where in the RV park she can't.
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      CommentAuthormary75*
    • CommentTimeSep 26th 2010
     
    Well, not only did my husband's daughter cause him (also me and the Care Facility staff) distress last week, but he has developed a pressure sore. So, in addition to notifying the lawyer re. daughter, I've hired a care aide for him for an hour a day to help with his evening meal. If necessary, I'll up the hours for additional help. Less for the kids to inherit, better care for Eric, and less stress for me. I had a major meltdown last week (and at age 80, I don't need that), and I've promised myself I'm never going to put myself in that position again. New motto: don't give a damn.
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      CommentAuthorCarolyn*
    • CommentTimeSep 26th 2010
     
    Mary, I can sympathize with you. Step-daughters are a major pain in the butt!! I took the advice of my friends . Stay away from her. I sent her an e-mail and told her the same. From that point on, she is the "evil one". LOL
    • CommentAuthortherrja*
    • CommentTimeSep 27th 2010
     
    As the "evil" stepmother, I can only agree that step-children can certainly make life difficult!

    I had a lovely time at the Big E (Eastern States Fair) on Friday. It was hot, crowded and fun! I love seeing the interactions of the people along with watching the various people trying to seel their wares. I actually bought 3 Christmas gifts so am happy to have that begun. The day away was such a wonderful thing for me. I find that as he progresses deeper and deeper into the disease, I need more time away to cope.

    I read a story yesterday that kind of hit home. It was about aliens taking humans and treating them as pets. It was told in first person. There were four "pets". They lived to be old and three died suddenly of a flu like disease. The fourth one stopped eating and was miserable without the other three so with permission of the owner, the "vet" gave the fourth one a shot and euthanized him. Did not see that one coming at all. It struck home though. As far gone as my husband is in stage 7, I trust that when it is his time, he will go. There are days though where I can understand why spouses of someone who is horribly sick will kill them. I even understand why as a society we think that this behavior is wrong. However as I watch my husband struggle to eat and as we struggle to keep him comfortable, I look forward to his being at peace someday. This is a torturous time for both of us in different ways.

    So after that, all I could think about was the story and cry. I did find an answer though. I started another book to give me something else to think about.
  1.  
    It is hot here today..well over 100..heard 113 in LA today. whew..DH is happy in the kitchen reading everything while I gather up things for the donation truck tomorrow.
    • CommentAuthorElaineH
    • CommentTimeSep 27th 2010
     
    I am so frustrated. Why can you have one good day that lulls you into thinking that, "maybe it isn't so bad." But then of course it all falls apart shortly after. And then when you think about it, the day went well because you did your best not to say anything that might set him off. Yesterday was that day. After a pretty good day he was pretty tired & wanted to go to bed around 7PM. Of course I wasn't ready & that set him off. I usually go to bed when he wants to, but when he decides to go to bed too early I just don't want to & he doesn't like it. That's when the angry little boy comes out in him. We seem to be having the same situation tonight. He's been back & forth to the bedroom (after asking me where we sleep) a few times. Now he is sitting on the couch across from me giving me dirty looks telling me that he is going to close it down (meaning turn off the TV, but he can't work the remote anymore). I hate this roller coaster ride!
  2.  
    Today things are definitely worse. DW is having more difficulty walking, taking very small steps, and being a bit unsteady. Then, when I went to get her in bed, she had trouble getting into the bed for the first time. If this keeps up I'll need help.
    • CommentAuthortherrja*
    • CommentTimeSep 28th 2010
     
    I had a good reminder over the last few days. I wasn't feeling well - not really sick just not well. I was not exercising due to it and not getting other things done. Well, the lack of exercise really showed - not only was I not feeling well, I now realized I was feeling more depressed than normal. What a nice wake up call - exercise good - no exercise bad........... Now I am feeling better and am doing more moving around and exercising, I notice that my mood in general is improving. The mind and body do go together (at least for me). Gotta keep doing the exercise to get me through this disease.
  3.  
    marsh,
    This is what my mom did..got iffy on walking and the nest morning forgot what her legs were for..it was a wheelchair after that. This may be closing in on you sooner than you think.
  4.  
    Elaine--when my husband wants me to go to bed too early, I tell him I have to stay up "until my food goes down" or I'll have indigestion (partially true). He then goes to sleep and I can stay up as late as I want. Would your husband believe something like that?
    • CommentAuthortherrja*
    • CommentTimeSep 29th 2010
     
    Marsh, many of my DH's losses, I had no problem accepting. When he stopped walking - that one was hard. It was one of the big symbols I had in my head about the disease. When they first put him in a wheelchair they had the footrests on it and he just sat there. When I noticed that he was moving his feet, I worked on the staff to remove the footrests. Did he ever start moving around after that. That kept him moving and looking at things another year. I was very impressed with how well he managed to figure out how to move himself wherever he wanted to go. The staff used to joke that one minute he would be in a specific spot but the next he would be gone.

    Good luck finding the right solution for your wife.
  5.  
    Here in South Fl. we were lucky. The tropical storm abated and while we got lots of rain not a lot of wind or flooding.
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      CommentAuthormary75*
    • CommentTimeSep 29th 2010
     
    We're having few days of summer weather again, warm enough for my husband and me to sit out in the courtyard in the sunshine. We can't sit too long because he has a small pressure sore between his buttocks. I get him to lie down on his side on my visits to take the pressure off sore and I bought him a coccyx pillow for his chair. Anyone have any other suggestions?
    • CommentAuthorKadee*
    • CommentTimeSep 29th 2010
     
    My husband also had a pressure sore recently, besides the pillow for the chair, I also purchased a Lambs Wool Pad for the bed. I bought it at the Medical Store in our town, I think it was around $25.00. With those 2 things and medication, his healed very well.
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      CommentAuthormary75*
    • CommentTimeSep 29th 2010
     
    I'd forgotten about the lamb's wool pad, and I have one somewhere; I'll dig it up. What medication are you using? As far as I can see, the Care Facility is cleaning the pressure sore with normal saline, and that's all. I could take him to see the doctor, but I think he'll say it's a nursing problem. I feel like I'm walking on eggs here not to get back into a battle, and I've been biding my time, to see what is happening. Also, the day nurse, who is good, has been on vacation, and I've been waiting for her to get back to talk to her. Thanks, Kadee.
    • CommentAuthorKadee*
    • CommentTimeSep 30th 2010
     
    Mary, I can't remember the name of the medication, however, I will ask when I visit today. I also, love the day nurse...wonder why they are always the best ones?
  6.  
    A gorgeous day here and a productive one too! Had to take the car in to check the temp coolant level - light came on; and the tires. They fixed it all - no charge! Returned shoes that I bought yesterday - then stopped at the new Burke's outlet just opened - and found shoes almost like the others - but these fit so much better and were $30 cheaper! Been dragging DH around with me since 8 a.m. After lunch, started to do the self-cleaning oven thing since my kitchen door is right next to the range and I could keep it open today. Took the shelves out to clean and DH wanted to clean them. I told him to go for it. Took him almost two hours, but kept him busy and I didn't have to do it, and he did a really great job. One more thing I can ask him to do! He always wants to help. Now he's playing on his laptop and I'm here. Good days do happen - sometimes. LOL
    • CommentAuthorKadee*
    • CommentTimeSep 30th 2010
     
    Mary, The name of the cream used on my husband was Calmoseptine. The nurse thought it could be brought over the counter.
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      CommentAuthormary75*
    • CommentTimeSep 30th 2010
     
    Thanks, Kadee, much appreciated. I get him to lie on his side part of the time when I'm visiting, and the coccyx cushion helps him, too. But I will be glad when the day nurse is back from her vacation; she gets things done.
    The eldest stepdaughter still acting childish (though she's 54). She removed the calendar from the room with my scheduled visits on it and wrote a note saying she would be visiting at 1:30 on Wednesdays, thus intruding on my visits. Lawyer has advised me to repost my visits (nurses have requested them, too). Social Worker at Care Facility had said she would talk to the daughters after last week's upset to Eric. We'll see what happens and take it from there.
  7.  
    Mary, you have been on a roller coaster with his ex and kids for years....I think justifiable homicide is in order!!!!!

    The weather here is in the 80s during the day and 60s at night and the sun is shining!!! I wish I could be outside enjoying this beautiful Fall day!!!

    My motto since the 1970's is more needed by those of us here every day....I want to share it again:

    WHEN YOU COME TO THE END OF YOUR ROPE, TIE A KNOT AND HANG ON!!!!

    I have two little strands of thread left, but I've tied another knot, and I'm still hanging on!!!!!! May your knots be strong!!!

    Love to all,
    Mary (Red)