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    •  
      CommentAuthorCharlotte
    • CommentTimeDec 1st 2017
     
    December and end of year already. I got my calendar made up for next year. I put birthdays on it so I remember them - might not send anything but at least I remember!

    Was going through hb medical records from the VA last night. Interesting reading both from the doctor and the follow-ups of palliative care visiting him at day care. From the neurologist she put he had 11/30 on the MMSE but she marked he got the 3 things to repeat and he couldn't remember any of them. Deduct the 3 and that leaves 8/30. The Palliative Care visits say he gets foot care which he has not been. Both times in the last 3 months that he has asked me to cut his toenails they were long. He has so much fungus under his nails they look horrible. I sent an email last night to PC that they are in fact not doing foot care. The report says he seems happy, visits with others, tells them he enjoys it there, etc. They said he has severe dementia. I had to laugh reading his PCP's report. When asked if he has pain, heat palpation's, shortness of breath, depression, etc they say he answers no. Not sure when they asked because I am there with him all the time. This is not the first time there are false statements in his medical records. I even find them in mine. What is with these people?

    Emailed the optical department at the VA. They do not sell bows. Their recommendations: he doesn't really need them for distance so buy him OTC reading glasses or just take them away all together since he doesn't read. I might look into the reading glasses but how to figure out what he needs for the mid range for watching tv.

    Our weather is now getting below freezing at night. Time to start making sure the water doesn't freeze once it gets into the 20s.

    He is driving me crazy - keeps thinking we have 2 dogs so is always looking for the 2nd one and the cat. Our first 14 years of marriage we had two dogs but not since 1985. Gave him some family pictures - his family - and he didn't recognize his grandmother until I told him then he was fine. Had trouble identifying people in them but finally was remembering - at least last night.
    • CommentAuthorRodstar43
    • CommentTimeDec 2nd 2017
     
    Charlotte, little things become big things don't they?

    Help, I met cancer doctor last. week. Good new , no cancer in lungs. Bad news he wet bac to primary standard of care option -surgery. He referred her tlo M D Anderson in Houston. problem; her angiosarcoma is on her face, 3x4 inches left cheek. it involves plastic surgery. This cancer life expectancy with surgery 18 mo to 5 years. I can find lots of info on Alzheimer's and angiosarcoma. BUT not a Alzheimer's stage 5+ with facial angiosarcoma.

    Anyone know or rea any thing?

    Already got first call from MDAnderson. Surprised. They are bige and and a premiere cancer hospital system. They even have just A Sarcoma center.
  1.  
    Hello Rodstar,

    Oh my, I wish I knew something to tell you. One thing, since the hospital in Houston has a specialized Sarcoma Center, it would seem that Dr. Anderson would be able to give you any answers you might need, as well as the best thing for your DW. It is heartening that he gave you a call so soon. Be strong.
    • CommentAuthorRodstar43
    • CommentTimeDec 2nd 2017
     
    For your info, the number one cancer center in the USA is. the University of Texas M D Anderson Cancer Center in Houston.

    For me it is not ghe expertise it is the should I.
    Also, it is 575 miles, not just a quick trip across. town. Two hours and DW is bored of traveling.
    Thinking og getting an up todate psy eval. for her.
    •  
      CommentAuthorCharlotte
    • CommentTimeDec 2nd 2017
     
    If here PCP (or whomever treats her demantia) is familiar with her history and condition, I would talk with him/her. Others here have been faced with decisions about further medical care with the specialist pushing treatment - remember they usually only care about the cancer not whether it will be the best for the patient with AD. These people have spoken with their PCP who knows the patient better overall and whether there is a benefit to cancer treatment.

    The biggest questions:
    will it benefit her quality of life, improve the course of the AD?
    Will surgery get rid of all the cancer without further treatment? Would chemo or radiation still be needed?
    AD is terminal. Cancer is terminal. She has two terminal diseases. Would curing the one cure the other?
    Will she understand what is going on, how to care for the surgical area afterwards or remember why she is in pain or needs to care for it?

    Anesthetics can really have negative effects on dementia patients. All too often they go downhill and never recover. This means the patient was put through what I would consider a needless procedure just for the benefit of the family.

    I am sure others can help with more questions to ask yourself and/or the doctors.

    Bottom line is you have some tough decisions to make. If you had talked about these things when she was healthy that would help making the decision. Hugs and prayers for you during these tough time. May the peace of God give you wisdom in making your decision.
    • CommentAuthorbhv
    • CommentTimeDec 2nd 2017
     
    Ask your PCP about Hospice care. They may be able to help you evaluate this situation and help care for her whether you seek treatment for the cancer or not. Hospice is for the family -not just the patient. And if you don't feel good with the first people you get you can try others.
    It is a good point to think about the after care. Jim's dentist did a couple of treatments before I refused to let him go by himself. I paid for the treatment, but he was unable to follow the after care , completely invalidating the treatments. No more of that thank you very much. However that was not cancer on the face. This is a hard one Rodstar.
    • CommentAuthorNicky
    • CommentTimeDec 3rd 2017
     
    Just wondering how people dealt with the first Christmas without their spouses at home.

    This will be my first Christmas in 47 years (married 44 yrs & dated 3 yrs) that I will not be celebrating with my husband at home - he's been in LTC for 2½ weeks. I don't think taking him out to come home is a good idea - it will create too many issues. We will however, dine with him at the facility - not that he'll even know it's Christmas day. I'm having a bit of trouble getting into the Christmas spirit - bah Humbug... I feel kind of flat...... I have 4 grandchildren from 2 yrs to 9 yrs - 2 in town & 2 out of town - so I just "can't do Christmas". I forced myself to put up my Christmas Village a few days ago & I'm glad I did(even though it took a couple of hours to set up) - my 2 granddaughters loved it. Actually I also always loved my Village - I'd turn on the little lights & I'd feel warm & fuzzy. I still enjoy it, but I did not feel warm & fuzzy this year..... I'm worried I'll get sadder the closer we get to Christmas..... Starting to look forward to January..... The thing is I don't want to be sad - I don't want his disease to ruin my Christmas.... I'm just not sure how to do that.... the sad emotions are so consuming. Perhaps I'll just tell myself that I won't be sad - not sure that will work... Any suggestions?
    • CommentAuthorbhv
    • CommentTimeDec 3rd 2017
     
    Charlotte, I just looked up my hb eyeglass prescriptions. He used to have our eye doctor make him workbench glasses. It looks like she has him at +1 for distance, +2 for workbench, +3 for reading. However, the last batch of reading glasses we got at Sam's club are ust +2.00. He doesn't use glasses for distance or tv. Don't know what to make of all that, but I would look for readers at the drug store or sa's or costco and try anumber between his number for distance and reading. Sometimes they are pretty cheap.

    Nikki. Come to the Christmas lodge and do as much as possible with grandkids is all I can think of. Last year I thought I was doing ok and went to a neighborhood party with my girlfriends. I got there a bit late and two of them came running to give me a hug and it scared me for some reason. I ran away, but my friend Shari talked me down from the "ledge" I felt like I was on. And my hb is still home btw. I decorated last year but got so mad Christmas day everything came down that night. Oh well. This year I almost feel like decorati g at least the tree. But my carpet was supposed to be replaced in November and they havent scheduled it yet. I am getting pissed. Its tough to keep telling yourself not to be sad. Multiple distractions I think are the ticket.
    • CommentAuthorbhv
    • CommentTimeDec 4th 2017
     
    It is trash day again. One reason I lost it last week was when I discovered hb had brought the full trash can back into the yard and we missed the truck. And it had all.the turkey bones and stuff so it was really rank today. I got him to help me put them out last night and repeatedly stressed.that they needed to stay by the street til the truck came. Went through it again about ten times today. Sometimes if I get angry he will.remember what I said. uccess! Yeah. How many people could understand what a big victory it is to actually get the trash can to stay out there til the **!!! Truck comes, eh? Yeah, and he didn't try to steal the neighbor's cans either.

    I actually made some embroidered mugrugs and wrapped them up for mailing today. I havent done presents in decades. Hope this doesn't become a habit. I dont have kids or grandkids, but apparently have adopted a.26 year old niece.

    Might do Christmas cards today. It is windy and cold. Not working outside. Just got done reading Wolf's story at the Christmas lodge. Still smiling. My neighbor's horses are gone again. I like bringing them carrots and Honey likes to lean her head on my chest. So I will bring some carrots to Daisy and Mae later.
    • CommentAuthorlindyloo*
    • CommentTimeDec 4th 2017
     
    This is my first Christmas alone too, Nicky. And I also want to enjoy it. The house is feeling hollow right now and I am feeling hollow inside myself as well. My plan is to try to do something for Christmas every day if I can make myself. I plan to put the tree up tomorrow. And bring the leaves for the dining room table down from the attic the next day. Then maybe start the cards??? And maybe bake cookies? My suggestion to you is to cherish your grand babies. And do things with and for them as you can. Wish I had little ones so I could see Christmas through their eyes.

    I know that last year the virtual Christmas Lodge was my Christmas when my partner and I were spending it alone for the first time. So come and visit there for friendly revelry with other spouses.

    So, Wolf, thank you for the Christmas Lodge. Looks like spending time with our on line friends will be my Christmas again. Thinking of wandering over to the lodge now to sit by the fireplace and watch the snow fall while enjoying the warmth of the fire.
    • CommentAuthorWolf
    • CommentTimeDec 4th 2017
     
    Forget that other stuff. Bake the cookies. Let me give you my address.
    • CommentAuthorlindyloo*
    • CommentTimeDec 4th 2017
     
    Give me your address and you'll get cookies. But just so you know there is smoked salmon and cream cheese and crackers at the Christmas Lodge.
  2.  
    Wolf has his priorities right!
    •  
      CommentAuthorCharlotte
    • CommentTimeDec 6th 2017
     
    Rod - how has this week been going? Did you hear from the clinic in Houston?

    Nights are cold now - low 20s. Today they were suppose to do a craft project for 'ugly sweater'. I sent an old sweatshirt since he doesn't have any sweaters. Didn't come home with anything. Not sure if maybe it was drying or he just forgot it.

    I am finally able to ignore his playing with his glasses for the most part. He is driving me crazy still thinking we have two dogs. He calls the dog a cat and the usually the cat a dog. So sad.
    • CommentAuthorRodstar43
    • CommentTimeDec 6th 2017
     
    Charlotte, got the call. from Houston, missed it. Got second call, MD Anderson left ..msg.
    made up mind, no to surgery. Pcp, Nurse here at ALF, my kids behind me. just anesthesia not good for AD, DW is having trouble with travel 2hour or so. two surgeries two much. 4 inch square on cheek or more and same on leg theigh for transplant - too. much for no guarantee.
    will have to get to hospice, at right time.
    cancer slowly spreadig
    alz icreasing
    • CommentAuthorNicky
    • CommentTimeDec 8th 2017
     
    Just wondering how everyone has changed because of being a caregiver with a spouse with dementia?
    •  
      CommentAuthormary75*
    • CommentTimeDec 8th 2017
     
    I am less patient with people who play games with me.
    I am more patient with people who are having a hard time.

    I appreciate simple, good times with good people.
    I don’t waste my time going thorough polite motions that don’t mean anything.

    I recognize that I have more underlying anger left over than I thought.
    I try to avoid situations where that anger may be triggered off.
    • CommentAuthorbhv
    • CommentTimeDec 8th 2017 edited
     
    Ditto.
    When I see something I like I buy it. I no longer agonize over purchases. Smething I have struggled with all my life.

    I don't pretend to like or enjoy things any more.
    I don't say I'm sorry hardly ever.
    I don't have a spick n span house
    •  
      CommentAuthorCharlotte
    • CommentTimeDec 8th 2017
     
    It is hard to laugh or find things funny even when they are.
    I have little hope for a future after 10 years
    I hate my life more than ever
    Ditto on the rest above
    • CommentAuthorRodstar43
    • CommentTimeDec 8th 2017
     
    Why do something to make someone else happy.

    Why go to something orthers say they engoy....
    • CommentAuthorRodstar43
    • CommentTimeDec 8th 2017
     
    ls it possible to have more than one life? Could one one life be happy??
  3.  
    As mary75* said, "simple times with good people."

    Enduring this disease and all that it manifests leaves one definitely damaged, but that said, it also can help focus on what is important for each individual. It was, and still is actually, easy for me to become absorbed in the suffering in one's own little AD world. By carefully choosing who and when to be around others, it helped me get out of my agony and focus on something else. I found that if I asked a few leading questions, others would open up and their interesting stories would pour out with little effort from me. Sort of like a live book on tape. Wolf has written eloquently about this process in his life.

    I also found that almost everyone over the age of fifty has endured some great tragedy and that while in specific ways our road is unique, in other ways it isn't. My two best friends have had wrenching, awful things happen to them. They were willing, though, to reach out to me and help me through the rough patches. I cannot thank them enough for mustering the energy and care to lend a hand and a light. And I feel that at the right time, I too should reach out to someone else. Pay it forward. Of course, one never knows if the other person is willing to accept, but it is necessary to at least try help others along this dark road.

    We have to be careful to not push or overdo the interactions for we are both tough and fragile. It always helps to have an exit strategy. And keep it simple and good. Well said, mary75*. As usual, your post got me to thinking. . .

    And I wish for all of you still in the throes of AD, that you could see that life can go on afterwards. Not the same. Not what we knew. But with an open mind, hopeful and simple good times with good people, one has to try because what else is there?
    • CommentAuthorRona
    • CommentTimeDec 9th 2017
     
    After travelling on this Alzheimers journey for many years now, and might add after loosing two very close friends to cancer this year, I have learned how fragile and fleeting life is. It has taught me that you never know what tomorrow will bring so I need to try and make everyday a good day and enjoy everyday. I know platitudes but hey it is a goal and better that than the alternative. I have also learned that if you find happiness grab it and hold on to it don't be afraid of what others think or feel it is my life.
    At one of my friends celebration of life her son got up and spoke he talked about the good think about cancer, that lead in was a bit of a shock, but he went on to say that by going through this with his mother it had taught him a great deal about people and about himself and it had made him a better person. It was a wonderful speech.

    And like Mary no time for games, and like bhv why wait for tomorrow, if there is something you want or somewhere you want to go just do it. I don't mean throw all caution to the wind but If I want something and can do it then why not.
    •  
      CommentAuthorCharlotte
    • CommentTimeDec 9th 2017
     
    Well, add another ADL he needs help with. He was taking a shower and evidently left the water running. He was still all soapy with only cold water to rinse with - which he was whining about. I told him, "you are the one that loved jumping in ice cold creeks or lakes first thing in the morning to impress the kids, pretend you are doing that!" Wasn't impressed with that suggestion.

    Either I will have to stand there making sure he doesn't leave it running while soaping up or take him to the park showers which he adamantly says no to. I don't want to stand there supervising his shower, but like with all we do what we have to I guess. Last night he asked what to do about a rash on groin area. Wonder now if it he is not rinsing soap off well because he ran out of hot water. He is slathered down in that area with diaper rash cream.
    • CommentAuthorbhv
    • CommentTimeDec 9th 2017
     
    I've been supervising showers for quite awhile now. For a.long time he just wouldn't take one until I.demanded because he was.so disgusting. I started.washing his hair in the kitchen sink - got a tray to send the water into the sink. His stupid hair is so greasy I should do it every day or every other day, but still.resist that. He has trouble in the shower finding the soap and figuring out how to wash things. I have to put the shampoo in his hand and then tell him to rub it in his hair. Sometimes that takes multiple attempts. Then it is an adventure getting him to rinse it out. Last time I had to clean his butt cause he couldn't remember how to do that and didn't understand my instructions. It is so.frustrating giving about half an instruction at a time. And he is such a baby and whiner. And then keeps telling me to get out of there like perhaps he knew what he is doing. I put soap on.a.washcloth and he has no idea what to do with it. You should.see washimg his hands! Ridiculous! I have to grab his hands and put some soap and then muscle them under the.faucet and rub them together with him resisting all the way. WTF? And I am supposed to not sound angry but be matter of fact tryng to help him and cajole him into letting me help him. Well,........frankly he isn't doing me a big favor by LETTING me help him! This situation just.sucks big time.
    •  
      CommentAuthorCharlotte
    • CommentTimeDec 9th 2017
     
    You have every right to get angry. I would not deal well with fighting like that.

    Unfortunately helping him in our shower is not possible unless I want the floor flooded. It is only big enough for one - probably possible to rinse him with the handheld that we have but still would get water outside the shower.

    Glad you had a good time out today.
    • CommentAuthorbhv
    • CommentTimeDec 10th 2017
     
    I open the door a crack and hand him stuff or pour shampoo in his hand. I know you are working with a very small space. What about a stool he could sit on? You might be able to use the handheld and keep the water in one direction. My nurse friend said don't go too cheap. She said they.need to have a back and handles to help getting up. But in your small.space you.wouldnt need a back. Of course, if he has a rash and can't clean himself perhaps that would be enough to get him placed.
    • CommentAuthorCarolVT
    • CommentTimeDec 10th 2017 edited
     
    deleted as unhelpful
  4.  
    We have a really small shower stall. have a hand held shower head and got a stool. I also put some suction cup hand grips on the plastic wall. Then I offered to help him with washing his feet. Then I moved up the body till I washed all of him. He had not been doing anything in the shower for months. His skin was all scales. I finally realized even his washcloth was still dry when he was finished. The trick was getting his butt before he sat on the stool. He was totally incontinent.
    • CommentAuthorRodstar43
    • CommentTimeDec 10th 2017
     
    You ladies scare me. I am glad I am the two hundred pound caretaker and my DW is the 110 lbs sufferer. and evenat end of stage 6 can was herself, pottie and put makeup on. I am studing. And the angiocancer on face is growing. what comes first. But I Am glad I am a man, at least regarding bathroom duties.
  5.  
    That was when I realized I really needed an aide to help DH with showering--he was doing it himself, but coming out of the shower not at all clean--was washing his hair with my conditioner instead of the shampoo...etc. etc. I was still in the workforce, so had to leave early, but the aide would come in and do his morning care. Oh, the good old days.
  6.  
    Living this crazy new life since my Dear Helen left me has caused me to do a lot of thinking
    about what I need to be be doing and I finally came upon the answer to that big question .....
    .............. I DON'T HAVE TO DO ANYTHING !

    And that's exactly what I'm doing. ... NOTHING! ..... And I feel OK about it.

    Of course I mean "nothing of any value"........... I can eat as much candy as I please ....
    Sleep as long as I choose ...... Play with my computer all day ..... Reminisce the good old
    days with my Dear Helen .......... And write dumb stories like this one.

    It really ain't so bad ..........
    • CommentAuthorRodstar43
    • CommentTimeDec 14th 2017
     
    when will december be over? All this "normal" celebration just adds to depression.
  7.  
    I've been thinking about your posting, Rodstar, and I think it is important for you to do what you need to do for yourself right now...maybe take time for some extra rest and reflection, if you can...it doesn't all have to be holly-jolly wahoo-wahoo if you don't feel like it. Maybe some soft, peaceful music...some good things to eat...buy yourself a present--something nice. It doesn't have to be expensive. Just take a big time-out from what everybody else is doing, and do what is important and meaningful to you yourself for the holiday season during what is a rough time. Another thing I was thinking is that I know it's possible this might be your DW's last Christmas. If there is any little nice thing the two of you can do to give yourself a happy memory--no matter how minor--it might be a good idea.
    •  
      CommentAuthorCharlotte
    • CommentTimeDec 14th 2017
     
    I agree Rodstar - I would be happy to skip from October to January. I just try to ignore it all. Just another day.
  8.  
    When I was a kid at home, my immediate family and also the big extended family celebrated the holidays (Thanksgiving, Christmas, New Year's) very quietly and inexpensively by today's standards. A holiday was a "day"--not a season--and generally spent in your own home, except for Thanksgiving, where we would usually get together with one grandmother and two uncles. And never any travel. I've never felt any compunction to turn myself inside out just because it was "the holidays", and DH didn't either. We weren't grinches, but took it easy and didn't go crazy. My motto was and is that if I don't feel like it--if I'm not enjoying it--I don't do it. And guess what--I usually enjoy the holidays because I only do exactly what I feel like doing. And if that is "nothing"--well, so be it!
    • CommentAuthormyrtle*
    • CommentTimeDec 14th 2017
     
    I think holidays were much simpler when we were kids. Society was not as mobile then. Getting together was easy when I was young because my whole extended family lived in the same county. Holidays are more commercialized now, too. Thanksgiving was one day. When I was in college (100 miles from home), we were required to attend our afternoon classes on the Wednesday before Thanksgiving, so I didn't get home until the night before Thanksgiving. After I graduated and was working in that same city, I (and my friends) had to work on the Friday after Thanksgiving, and we were not able to get home and back for just one day; many of us did not even have cars. It was not a big deal.

    Christmas seems to have gotten completely out of hand. Rodstar, I certainly understand why you are depressed by this constant celebration. I just tune most of it out.
  9.  
    That's what I do, too. Tune out all the nonsense.
    • CommentAuthormyrtle*
    • CommentTimeDec 14th 2017 edited
     
    Elizabeth, I just realized that you've voiced exactly what I've been doing - only what I want to do. I do enjoy some things about the holiday. One is the custom of artificial lights, both for Hanukkah and Christmas. I feel light-deprived at this time of year and I welcome the chance to put electric candles in the windows. They look nice from the street but also brighten it up inside.

    This year, I also dragged in the artificial tree from the garage. It's a skinny tree with lights that looks like it's growing in a square white planter. All my ornaments are woodland animals. I have bears, a beaver, foxes, a rabbit, and a variety of birds. I haven't taken them out in years and I just realized I'm lacking a raccoon, a woodchuck, a skunk, and a porcupine. It's a fun distraction. At the same time, I want to avoid getting too Christmasy so I'm not hanging tinsel or decorated balls on the tree and I'm not playing any Christmas music. Of course, Lucy's stocking is hanging on the mantel.
    •  
      CommentAuthorCharlotte
    • CommentTimeDec 14th 2017
     
    That is one thing I do enjoy - Christmas music. Been playing it since first of November.
    • CommentAuthorRodstar43
    • CommentTimeDec 14th 2017
     
    I do no. enjoy the music, lost it somwhere around start of AD. Never cared much for holidays. No big family social times until I got my family. I was the only child. So, no big holiday deal, only one to make unhappy. Being an only child out in the country sucked but, I. did not know that. When I got married I put on the happy. face for the kids, even enjoyed it some, but that early childhood of being a looner has come back with a vengeance, especially with the slow loss of my DW and my depression up. Going through 49 years of unrelenting pain and no diagnosis will do that two you. Now my DW has 2 terminal diseases plus some minor ones. I haave 2 lower level dieases.
    BUT, I am not ready for the pine box. MRI today on cervical. Who knows, maybe they will find something.

    I just wished Christmas was over. This morning I woke up stressed and a bad mood. I just do not have free time nore want any.
    Ah humbug

    getting better at hucking up bras now. not as much fun as one handed unhooking them!!
    •  
      CommentAuthorCharlotte
    • CommentTimeDec 14th 2017
     
    Rod= my son injured his back in the Marine Corp. He was discharged with 20% which has been raised to 30%. He has had numerous MRIs, CTs, xrays and they have yet to find out why the pain.

    Love the bra comment. There comes a time when you might want to just skip the bra. I am glad winter is here cause I don't have to wear one when I go out - can't tell when wearing a sweatshirt unless I bounce up and down!
    •  
      CommentAuthormary75*
    • CommentTimeDec 15th 2017
     
    Here's a link to copy and paste for those who've found that music matters:

    BBC - Future - The part of my dad that dementia can't take
    • CommentAuthorRona
    • CommentTimeDec 15th 2017
     
    Christmas is a tough time of year for many people. I agree with the above comments do what you want to do no pressure. I have said that to my boys throughout the years. I had them both as a single parent from when they were 10 and 12 even in the beginning where are they going to be for Christmas with me or their mom always being pulled. So I never wanted to put pressure or guilt them in any way. As time went on we had some Christmas days together and some not but we usually managed to get together somewhere over the holidays. This Christmas younger son coming on 22nd with girlfriend older son just text he is in Prague working suppose to be finished on 20th and going to see if they will fly him here instead of NY where he lives. We will see it is always an adventure but hey don't worry about things that are out of your control right! Good luck Rodstar you have a full plate and as was said, do what you want to do and do something nice for yourself.
    • CommentAuthorRodstar43
    • CommentTimeDec 17th 2017
     
    nice for myself'? let's see, not sure what that would be except to have no pain. Oh, can't do that.

    Last 48. hours DW has had sizzures including one at. 5am. She hasn't had those in a while. At leat she forgets them.

    did not go listen to singers, includinding grandson..

    humbug

    rathe watch reruns of 'Law and Order'
    • CommentAuthorWolf
    • CommentTimeDec 17th 2017
     
    Rodstar43, I would do two things.

    First, authorize yourself to tell the truth about how sh***y your situation is. The torturers want you to smile. Up theirs.

    Second, how can you make getting into reruns of Law and Order better for you? A comforter? Popcorn? A few drinks? Feet up? Pulling the TV closer or the chair up closer isn't that different from buying a larger TV up to a point. Turning the volume up a bit can pull you into the story more. Shutting the light off can make it a bit like being in a movie theatre. If anything easy makes it even slightly better, then I want it.
    • CommentAuthorbhv
    • CommentTimeDec 17th 2017
     
    Rodstar, I can't even imagine the kind of pain you speak of. I really like your sense of humor though. Like when you talked about learning to hook up a bra. Not as mch fun as learning how to unhook one handed LOL.

    Wolf. Once again you found the words I have been searching for this week. "The torturers want you to smile. Up theirs" I am seriously starting the process of finding in home help. So I keep trying to state what help do I need? It is hard. Last night I was thinking, again, about PTSD. Only it is not POST. I guess it is just TSD or During TSD. I have the exaggerated startle response now. He startles me several times a.day now. Not sure what the physical effect of that is. Not good though. And this week I realized that this feels like physical pain. I don't just feel sad. This is physical pain.nothing touches it.

    But when I try to list what I do for him it is not all that much. Not sure why I need to hire someone to do it. I signed a marriage contract. It said "in sickness and in health". I was prepared for that. I wasn't prepared to do that for a person who does not resemble to person I signed that contract with, a person who has violated just about every term of that same contract. Why should I do this?I ask the torturers. But,if not me, who else would take this on? There is no one. Need a way to "Take a long walk off a short pier" as we used to say.

    I have been doing just what you suggested for Rodstar. "If anything easy makes it even slightly better, then I want it." I am not driving his stupid truck to the grocery store any more. My car is easier. I bought new combat boots to suppport my ankles when I am trying to clear brush on the hillside. Wow. So much safer. I bought a new purse. Never cared about that before. I bought a slightly expensive one. Never did that before. Low and behold I like it. I bought some new.clothes. I put up the Christmas tree. I turned on the lights.

    I am rambling. Thanks for listening.
  10.  
    bhv, you aren't rambling. You are surviving. The strength of your character and will come through loud and clear as you problem solve this deplorable situation. You are doing exactly what (I've read) POWs do to survive intolerable situations with creativity, humor, and spunk. The visual of you decked out in new combat boots with a nice new purse made me laugh. You go girl!

    Yes, you do have TSD. It doesn't really matter what you put on those forms so put everything you can think of. Get someone in the house for help and then sort out what works and doesn't work. How can you know what you need until you see what alleviates some of this stress? If you haven't gotten your own doctor involved, think about doing it. Call out all of the troops.
  11.  
    bhv, when you start setting up your aide, most typically a nurse will come out from the agency (VA or whatever) to sit down with you and write up a care plan. She'll be making an assessment of what the needs are. It will typically be personal care, light housekeeping, laundry, shopping and errands...maybe supervision of safety. Example: Let an aide do the shower and any incontinent care, tidy his room and change his bed, do his laundry...what you probably need to do is figure out what areas of the house are exclusively his, and let the aide take care of those areas. You and the nurse can get a little creative about figuring this out...so the aide can do enough housework to be useful. It isn't that you aren't taking care of him...you're just taking care of him in a different way. Even if all you do is take a walk, cruise the mall, sit on a park bench, or vegetate at the library...you need some time and space away from him. It is part of your own survival. Sure, you can take care of him. But who is taking care of you? Nobody. There are a million pain-in-the-neck issues that come up from working with aides--I'm sure others here have lived the irritations and aggravations just as I have--but you need to at least try to get a bit of a break from him. It isn't good for you to be with somebody 24/7 who is demented. It's not good for your head.

    The best thing would be if, in addition to the above, the aide is allowed to just keep him company--"socialization" is the jargon word. Or possibly to take him out in her car. I don't know the specific rules for the various types of aides in your area. Private pay aides through an agency can do just about anything you want them to, but Medicaid-billed aides have tighter limits, and maybe the VA aides do, too. Others may be able to chime in on this.
    •  
      CommentAuthorCharlotte
    • CommentTimeDec 17th 2017
     
    bhv -I know how hard it is to figure out exactly what you do for them. The easiest way for me is to sit and mentally go through my day. Do you pay the bills? do the shopping? do the cooking? put his pills out? wash his clothes? he is incontinent so that is a biggie - you try to get him to use the toilet so he doesn't do it in the diaper, you rack your brain until it hurts trying to figure out what is causing the diarrhea, think of all the other things you do to deal with it; you work hard to not do anything that would cause an outburst; you live in fear of the next outburst - will he hit me; do you have to remind him to shower? help him shave(remind or physically help), the list probably goes on. When you do it that way you realize how much you are doing that you have just become use to.

    To have someone come in so you can go shopping by yourself or just go veg out somewhere by yourself. Keep him in the house or busy so you can go work in the brush. I know when hb goes to day care is when I do the shopping - lot less stressful since he never bags things like I want them bagged. Even if I don't go anywhere I enjoy the time alone. I dread when he does come home - I often wonder if he does to. They had their Christmas party on Friday at day care. He doesn't remember it but came home with a Seahawk scarf, Seahawk slipper socks, and a nice sweater. I did not go last year or this year - just don't feel in the party mood. He also now has another cold 3rd one this year which is something he rarely did(get sick) in the past.

    We have talked before about feeling obligated because of the 'in sickness and in health' part of our wedding vows. Some feel even if it means our own heal and possible death before our spouse we need to keep that promise. Others of us believe there is a limit. My husband made me promise after he was diagnosed that I would not keep him home and kill myself trying to care for him like his mother did with his dad. He might not remember but I do and will do everything I can to make sure I keep that promise.