Not signed in (Sign In)

Vanilla 1.1.2 is a product of Lussumo. More Information: Documentation, Community Support.

    •  
      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
    • CommentTime6 days ago
     
    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
    • CommentTime6 days ago
     
    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
    • CommentTime4 days ago
     
    Just wondering how everyone has changed because of being a caregiver with a spouse with dementia?
    •  
      CommentAuthormary75*
    • CommentTime4 days ago
     
    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
    • CommentTime4 days ago 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
    • CommentTime4 days ago
     
    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
    • CommentTime4 days ago
     
    Why do something to make someone else happy.

    Why go to something orthers say they engoy....
    • CommentAuthorRodstar43
    • CommentTime4 days ago
     
    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
    • CommentTime4 days ago
     
    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
    • CommentTime3 days ago
     
    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
    • CommentTime3 days ago
     
    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
    • CommentTime3 days ago
     
    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
    • CommentTime3 days ago
     
    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
    • CommentTime3 days ago 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
    • CommentTime2 days ago
     
    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 ..........