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    • CommentAuthorRodstar43
    • CommentTimeOct 23rd 2017
     
    You got that right bobbie. Looks are deceiving. People look at me, see me smile, see my stature and assume I am in good health and mind. Even family can make that mistake. Maybe we are real good at hiding the real us.
    Made through another neurotomy today. Rough, lying down early. In past it took a day to really hurt. Not today. Procedure only took an hour, felt like a day. DIL to our rescue. I also had a free hour of no responsibilities.
    • CommentAuthorRodstar43
    • CommentTimeOct 26th 2017
     
    It seems that cancer is already beating on the door to wife's life. Changes coming fast??????
    Will continue to be here for her and do my best. Thanks for this sounding board.
    • CommentAuthorLindylou*
    • CommentTimeOct 26th 2017
     
    We are surrounding you with love, Rodstar43.
  1.  
    I am here, Rodstar. Thinking of you and your wife this morning--sending all good thoughts, support, and care and love through ESP. Hope you are receiving it.
    • CommentAuthorbobbie
    • CommentTimeOct 27th 2017
     
    Rodsta r43,you are fighting so many enemies. Knowing one of them will win. Prayers that it will be the kindness one. I think we have a "costume" we put on when we
    are around people and do try to "look good"=----they they leave leave and we collapse, pull it off and crater!
    • CommentAuthorRodstar43
    • CommentTimeOct 28th 2017
     
    Bobbie, you got that right - again! I completely concur.
    • CommentAuthorbhv
    • CommentTimeOct 28th 2017
     
    Rodstar, another thought. Did you know that you can hire people to come in and help you even in assisted living? The agency I am going to work with is called LivHome. But they will go wherever your home is. You might want to think about hiring someone to come once a week for four hours or something like that to take your wife downstairs to sit and crochet or participate in activities or walk around.... Giving you some alone time in your space.
    FWIW
    • CommentAuthorLindylou*
    • CommentTimeOct 28th 2017
     
    Bhv's idea is a good one, Rodstar. One thing you may need to keep in consideration, sometimes your loved one will need a few days to get accustomed to a new person before they will go off with them to programs or something. You might sort of need to ease into it.
    • CommentAuthorRodstar43
    • CommentTimeOct 29th 2017
     
    bhv, good idea. I will check with the ALF manager for local help.

    My big problem is I can' t get away from me. Some weeks the chronic pain I suffer is so great I really don't won'to to do nothing. At 3, 4, or 6am or any time it is there. Pills only do so much. It has zapped my motivadtion a lot. DW for most part, puts up with it which is a blessing. There are a lot of things AD has caused but increased pain is not one. she is sleeping a lot more. Any relief - non, zelch.

    So induring pain (gone on 49 years) is not her fault. But, it has allowed me to be there for her. As things change in her stage 6, and the cancer takes,hold I will have to do something.
    • CommentAuthorMim
    • CommentTimeOct 29th 2017
     
    Rodstar, just my opinion, but I think I've heard this before....all of the burdens you carry & the stress you are enduring, your pain can magnify a hundredfold. One's body cannot work properly that way...something's gotta give.

    Please don't misunderstand, I know your pain is real, I just think these things can increase the level.
    •  
      CommentAuthorCharlotte
    • CommentTimeOct 29th 2017
     
    I will testify that stress makes the pain worse, at least for me. I believe stress can even bring on diseases. I definitely will attest that stress can cause weight gain! When I get more stressed my shoulder hurts more, my back pain gets worse, and we all know stress can bring on headaches.

    Glad to hear from you Mim. How are you doing?
    •  
      CommentAuthormary75*
    • CommentTimeOct 29th 2017
     
    I've appreciated your posts today, Mim. I needed to hear what you have to say. Keeping you close to my heart.
    • CommentAuthorRodstar43
    • CommentTimeOct 30th 2017
     
    mim, I know stress can make things worse. I have felt the stress with pain more and then level most of the time. My pain seems to stem from rear of neck and head. Muscles in neck are get physically sore when pain is high. I had the mifortune of having C3 and C4 fused together when I was born and a 50% reduction of spinal cord diameter in that area. Then, a severe wiplash injury long ago started my fun trip down the chronic pain road. You name and I had it done to releive pain.
    Patients with that has given me the charactor and patients with the AD issue. However, as stated before, I notice things that I have either lost or just don't care for anymore. I have been in this "bunker mode" since before AD.
    • CommentAuthorRodstar43
    • CommentTimeJan 3rd 2018
     
    ttt
    • CommentAuthorRodstar43
    • CommentTimeJan 3rd 2018
     
    I just get tired of answering the same questions for tenth thousandth time. Having an adult conversation about anything outside our life might be interesting too. When you live in long term care with your wife and are still the caregiver has it's limitations. I am talking about a Assisted Living Facility.
    •  
      CommentAuthorCharlotte
    • CommentTimeJan 3rd 2018
     
    I got so I just did not answer all the time. It was much easier and he never seemed to notice I didn't answer.

    Yes, conversations outside the dementia world is nice but rarely happens. I find I really have little to say.
    • CommentAuthorpaulc
    • CommentTimeJan 4th 2018
     
    A few years ago I was told that almost all people who move into an ALF with a spouse with detention move out (the spouse stays in the ALF). While the ALF makes some things easier, the well spouse still does not get a break. And staff will get the well spouse to do stuff that staff will normally do themselves.
    • CommentAuthorRodstar43
    • CommentTimeJan 4th 2018
     
    ..My problem at the. time we moved her two years ago I had had the most medical probllems. Tthe bad ones. i had calmmed down except for 24/7chronic pain in rear of head. My wife'AD advances and. now terminal cancer.
  2.  
    Rodstar: Same question as I asked you on the other thread: Where is the staff? I agree with paul c that it is very typical (and wrong) for the staff to just let one spouse take care of the other one. But you have health problems, too. And surely they can see that you need a break from her. Maybe you need to ask the social worker to call a team meeting (with you included) to discuss this issue and find some ways that your wife can be cared for by the staff so you can get a break. They are supposed to be taking care of you as well as your wife, although I realize her needs are different.
    • CommentAuthorRodstar43
    • CommentTimeJan 4th 2018
     
    In another week we will have been here at this Assisted Living Facility on my nickle. When we came here I was the major concern. The previous one and a half years consisted of two near death events, one a severe sepsis infection and another 18 hours of unconscious ness with a TIA and very high blood pressure. The wife did not know I was in trouble. Before that 3. other TIAs and Bel Palsey. and of course thr daily chronic headaches.
    • CommentAuthorRodstar43
    • CommentTimeJan 4th 2018
     
    The wife only had sizzures and alz. Well, the doctors and kids strongly adviced getting off our small ranch in the Texas boodocks and move to an ALF close to one of our kids. Thus Jan 2016 here we are.
    They do have a memory floor here but, I chose to keep trying to be the caretaker. Money. Plus she was not incontinent or had loss of bowels ....yet. Just memory and cognition.

    I complain but in on way it keeps me going. Yea, they have invied her to visit second floor, play bingo, cards ect. but she want go wit out me. My daughters, when the visit can get her conjoiled into a few things .
    Now she hs terminal cancer. Another path. I have third stage kidney disease now.
    Charlotte's words, stick like Velcro is a good discription.
    Hospice is around the corner but for a few more months I hang on and try to keep sane.
    • CommentAuthorCarolVT
    • CommentTimeJan 5th 2018
     
    Rodstar 43, from what I read (no personal experience), a good hospice can offer wonderful support even in conditions where death is not imminent. It is not only for the time when end of life is in view. You might ask for an assessment. Perhaps there is palliative care that can be offered and equipment that might be helpful. I think ALFs allow hospice when they might not allow other outside help. I think nonprofit hospices are considered "better" than for profit, but it depends on the group. You may have a choice. You don't need to wait. Hospice can assess if they can help you.
  3.  
    Hospice might be an option. It would be a good idea to look into that, even if it's a little early. I found in Ohio that not every Hospice insisted on a six-month prognosis. Your ALF social worker probably knows how to hook you up.
    • CommentAuthormyrtle*
    • CommentTimeJan 5th 2018
     
    Great suggestion. Hospice says they are not just there for the person who is dying; they are there for the family. They also have volunteers.
  4.  
    I was told when I inquired about Hospice that if one doesn't approve you, another might. Since there are about 7 different Hospice groups in my area I called one that had spoken to our AZ support group. They approved immediately. All I had to do is get approval from his doctor. That was done immediately by fax. He had an aide here the 2nd day after the initial visit. He was reassessed in 6 months and again 3 months later. I worried they would take it away but they said not to worry. They could see he was going downhill.
    • CommentAuthorRodstar43
    • CommentTimeJan 5th 2018 edited
     
    I have met with the director of one Hospice agency. I like them and have good referencies. The Terminal cancer will do it. I Have watched them in action - next door even.
    • CommentAuthorlindyloo*
    • CommentTimeJan 6th 2018
     
    In addition to other support, hospice will most likely allow you some freedom to leave your apartment for an hour or two of respite. It has sounded like you need more time for yourself. Being on call 24/7 is the most wearing thing there is.
    • CommentAuthorRodstar43
    • CommentTimeJan 9th 2018
     
    Where did every go?
  5.  
    Just a quiet day on the forums. They're all recuperating from the holidays!
    •  
      CommentAuthorCharlotte
    • CommentTimeJan 9th 2018
     
    Not much going on. I did get his day care changed from Friday to Thursday. They were coming at 8:15 vs 9 the other days. Thursday will be around 8:30 which is better. The 8:15 he hadn't even eaten when they arrived.
    • CommentAuthorRodstar43
    • CommentTimeJan 9th 2018
     
    There is no vacation from chronic pain and AD. There was a day back 2002 I could call a vacation day but, that was before AD.
    • CommentAuthorRodstar43
    • CommentTimeJan 9th 2018
     
    Charlotte, how do yo get him to stay by himself wen you go out side or on errands?
    •  
      CommentAuthorCharlotte
    • CommentTimeJan 9th 2018
     
    I do errands when he is at day care or I take him with me. Taking him with me means I don't get out of here until noon. The only time he stays home is when I have doctor appointments. He will go and sit in the waiting area but I also try to schedule appointments when he is at DC. There are times I schedule them in the morning. Since he often does not get up until 11 or noon, I can often be gone and back before he wakes up. I also leave notes on the mirror by the bathroom sink, the microwave and on the TV telling him where I went. There is no problem when I go outside with the dog - well a few times he follows me out. He will come find me if I go next door or visiting with other where he can see me - he has to come listen in but since he doesn't remember anything or can really follow a conversation it is more annoying than anything.

    He will sit watching TV and I will either put my headphones on or go watch the bedroom TV to get away. When we wake up in the morning the throw rugs are usually a mess due to the cat loving to play with them which bugs him. I also leave her toys on the floor out of the way but they are there. Tonight I went looking for the cat's toy - a stick with a string with a bell and feather on the end. I can't count how many times he picks it up and I can't find it. Tonight was one of those times. I searched all over for it. After about an hour and getting really ticked off at home I decided to look in the closet - where it was.

    the resentment towards him just eats at me. I have to work so hard to let it go especially when he does things like put the cats toy somewhere or follow me around. At the store he really irritates me following behind me and not bagging groceries how I want them. Last night I had made the bed making sure the covers were even on both sides. He remakes the bed when he goes in - when I went in he had them pulled to his side. If I had another bed or couch I would be sleeping on it.
    • CommentAuthorRodstar43
    • CommentTimeJan 10th 2018
     
    Charlotte, sure is different trials for different caretaking spouses.
    • CommentAuthorRodstar43
    • CommentTimeJan 15th 2018
     
    ttt
    • CommentAuthorRodstar43
    • CommentTimeJan 17th 2018
     
    ttt
    •  
      CommentAuthorCharlotte
    • CommentTimeJan 18th 2018
     
    ttt