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    • CommentAuthormyrtle
    • CommentTimeJan 18th 2017
     
    Thanks, marche. It's always easier to look at a problem when you've been there.
    • CommentAuthorWolf
    • CommentTimeJan 19th 2017
     
    Myrtle, look at what you went through with breast cancer and how you handled it. If you could take into your repertoire more that although you tend to solve the problems and survive the moments, you also have to wrestle with some panic because that's just how it is for you, it might help you.

    I had a large issue with anxiety. That was part of the cost for me when she went into and out of palliative care three times. I had a massive anxiety/panic attack which then stayed with me for some time. My mind moved to that feeling and went into a spin cycle when certain things happened that set that off. It took many months to develop a relationship with that and begin working with it, instead of being swept away by it. Now I've changed where one of the most important reactions to anything happening is my conscious awareness that I have to manage my anxiety about what is happening.

    I have two immediate jobs when I feel myself being sucked into that vortex of anxiety. First rate the new threat from DEFCOM 1 which the smallest threat to DEFCOM 5 which is life threatening. Second realize I'm going to get worked up about this and have to manage myself through that along with the issue itself.

    You can prove to yourself that you no longer feel panic about things that are solved or assimilated. You can also prove that your feelings weren't part of the thing or the solution, but were feelings you had at the time. You can prove that you simply must be under great strain. Therefore, panicky feelings come with some new threats and those feelings dominate for some time and then don't. The real question is how can I help myself while I'm feeling that and the very first step to that simply has to be taking it in that that's how it is right now.

    I don't have anxiety the way I used to anymore. Mostly the source of the stress stopped pumping out new horrors and instead ended and then some time passed where it was quite quiet and I had time to catch up. Partly though because I got serious about working with the fact that I have it and therefore gotten better at managing it.

    Hope I haven't overstepped.
    • CommentAuthormyrtle
    • CommentTimeJan 26th 2017 edited
     
    Wolf,
    What is DEFCOM?

    No, you haven't overstepped. I think part of what allowed me to get through that experience was the realization that I had to protect my husband. It was at that point, I think -- a year after dx and fairly soon to put oneself on the back burner -- that my husband became my priority. I stopped expecting things of him and so was not angry at him for always gumming up the works. In order to survive I became super-logical and at the same time kind of phony - cheerful and calm. All these years later, I still have the ultra-logical mindset but the veneer of cherrfulness and friendliness has worn off and I am kind of snarly now.
    • CommentAuthormyrtle
    • CommentTimeJan 26th 2017
     
    I'm worn down from 10 days of the flu, which has gone around my husband's LTC facility. I enrolled my husband in hospice last month and was assured that he could stay in the dementia unit unless I wanted to move him to the comfort care unit (a/k/a palliative care unit). Last night, I visited him for 2 hours at supper time and when I got home at 7:00 I found a voice message from the unit's social worker. It said the superintendent had decided to transfer him to the comfort care because he is no longer at risk of escaping and they need the bed for others. Said transfer would probably happen tomorrow. I went over there at 7:00 a.m. today and met the social worker who told me that the facility has a new rule that anyone in the dementia unit who signs up for hospice services will be transferred to the comfort care unit. He said I could appeal to the medical director and if the appeal were denied, I could avoid a transfer by taking my husband off hospice. We toured the Comfort Care unit, which I found was not acceptable at this stage of my husband's illness. I told him I was appealing and if that were denied I would take him off Hospice. Called the Hospice nurse who did not knew anything about this.

    This is a facility for veterans run by the state, so that explains the bureaucracy. The new superintendent was until recently a Lt. Col. in the Marines who was a deputy commander at Parris Island, so that explains the manner of communication. I will pull every trick out of my hat on this one. I hope it works.
    • CommentAuthorcassie*
    • CommentTimeJan 26th 2017
     
    So sorry Myrtle. This S... is what makes it all so much more difficult.
    • CommentAuthormyrtle
    • CommentTimeJan 27th 2017
     
    Yes, cassie. They are trying to drive me nuts. Just got a call from the medical director. Said there must be a misunderstanding. No one ever ordered a transfer. We just want to give patients the opportunity to move to comfort care if they so wish. In fact, we just had a meeting where your husband's case came up and all agreed he was better off where he is, so all is well. . . . Naturally, I expressed great relief. Funny how these misunderstandings pop up.
  1.  
    Wow! Myrtle, that sounds like some fancy footwork in backtracking on their part. Do you think they thought they would just slide this one by you with some intimidation thrown in (the appeal approach)? Way to call them out and push back!

    OTH, ten days of flu? You are already worn out and stressed. I hope you have seen a doctor.
    • CommentAuthorWolf
    • CommentTimeJan 27th 2017
     
    Myrtle, that's on me. I meant DEFCON which is a grading system of how serious an issue is used by various countries.

    The thing about these things is that the situation is there only once but the mind repeats especially under great strain and in serious things. Noticing we keep wrenching over a thing is one skill. Containing it each time by reminding ourselves of the actual threat level is a different skill.

    I had anxiety badly for some time. Reminding myself that the threat causing anxiety was at a certain level and not more was one thing that helped me. The thing that really helped me was that I could remember that I had anxiety and that, because of that, it was probably just as important for me to try and manage my anxiety as it was to address the problem itself.

    Looking at things like that has helped me manage better these last two years. The best things that have come out of this nightmare ten years is that I've learned to be a lot more honest and supportive of myself and secondly that I've learned to be more fully serious about things. Not focused or determined serious so much as thinking about things in a more truthfully fleshed out and therefore meaningful way.

    I survived Alzheimer's. That's it. In the last years with Dianne, I knew that. Just survive this. The reason is there is no possible way that a human being could be in such a long and tortuous experience as this AND have full access to their wits, their feelings, or their ideas. I believed that then and I promise you I'm sure that's true now. In the last years of this a person should concentrate on trying to hold together and get through it for both - and that's all that should be resident at DEFCON 1.

    I'm very sorry, but they are going to pass from this and the only person that can be saved from this disease and it's ordeal, is you.

    I'm at a very different part of this. I'm at the point where I have to unlearn 'struggling against' and relearn 'working with'.
    • CommentAuthorcassie*
    • CommentTimeJan 27th 2017
     
    Myrtle, I do think that Marche has got it right. Most people would have willingly agreed to their changes but not you!
    Well done but it was more stress piled onto your already overloaded plate and that you surely didn't need.
    • CommentAuthormyrtle
    • CommentTimeJan 27th 2017
     
    Yes, cassie, I am worn out and stressed but so glad it worked out. When I got home tonight I fell asleep in front of the TV news. Marche, I saw a doctor on Wednesday because even though the flu had run its course, I was wondering about the funny sounds I heard in my chest when I coughed. I was told that my lungs are clear. But I still hear a wheezing sound when I cough. Will use the inhaler and go back if it does not stop.

    I have no clue why all this happened the way it did. I think someone may tell me later, after things calm down. One thing I did learn was that the staff are supporting me. The two nurses on duty yesterday told me they were rooting for me.

    It occurred to me that people often overlook the stress that is caused by the solutions we seek to our Alz problems. It's easy for people to think that admitting a spouse into a NH or ALF is a solution to the care problem (and it is) but that also comes with other problems and responsibilities. The same is true of hiring aides or sending our spouses to day care. All these things are helpful (in my own case they were lifesavers) but they must be managed and come with their own problems.
    • CommentAuthormyrtle
    • CommentTimeFeb 11th 2017
     
    My husband has stopped eating again. He stopped in December and lost 10 lbs. that month but started eating again and only lost 3 lbs. in January. Now he's stopped again. The nurse said that in the last week he had eaten only about 30% of one meal per day. When you put the spoon to his lips he closes them and turns his head away. Last night he even grabbed my arm and gently pushed it away. He will still drink liquids.

    When others' spouses have been at this stage they have said that they feel guilty because they want their spouse to die so he will be out of his misery. Well, now that he is at this stage, I have discovered how I feel about this and I have no need to feel guilty. I want him to keep living. Even though we both have a miserable existence, I am willing to continue to visit him for the rest of my life if he would only stay alive.
    •  
      CommentAuthormary75*
    • CommentTimeFeb 11th 2017
     
    I may have mentioned this before, but Nikki* (sp?) found that oral maijuana(sp?) helped. Forget its name - Marinol?
    • CommentAuthorLindylou
    • CommentTimeFeb 11th 2017
     
    Oh, Myrtle. I ache with you. But I do wish to share this thought with you. Your husband may be gently telling you that now is his time to go. His gentleness in refusing food coming from not wishing to hurt you one little bit. I try sometimes putting myself in my partner's shoes. At this stage in her disease process, what is it she wants? I try to read the signals she is giving me. Not easy since she can't tell me with words.
    • CommentAuthorRona
    • CommentTimeFeb 11th 2017
     
    I agree with lindylou. Watching my mil stop eating, we talked about it being one of the only things left in her life that she could control. This helped us feel at peace with it We felt she was telling us I am done and this is what I can control and what I want. My heart goes out to you myrtle.
    • CommentAuthorWolf
    • CommentTimeFeb 11th 2017
     
    "Even though we both have a miserable existence, I am willing to continue to visit him for the rest of my life if he would only stay alive."

    You're ripping my heart out. Now stay strong and don't forget we're here. You're not alone.

    Mary, yes Marinol.
    • CommentAuthormyrtle
    • CommentTimeFeb 11th 2017
     
    Lindylou and Rona, That's exactly what a friend told me this morning - that he is telling me something. In this stage of his disease, he is often very childlike and silly but I have to admit that when he shakes his head a little and turns it away, he seems very mature and firm about it. Mary, thank you for the suggestion. I don't know if Hospice would approve Marinol but he definitely would not. He did not like drugs (even legal ones). Wolf, thanks for being there. You guys are the only ones who understand.
    • CommentAuthorAliM
    • CommentTimeFeb 11th 2017
     
    myrtle, You are continuing to be an awesome caregiver. Just follow your heart and do what you feel is best. Know that we will continue to be here and will understand your caregiving decisions. Sending you a hug and a gentle hand on your shoulder.
    • CommentAuthorcvh
    • CommentTime7 days ago
     
    Myrtle, right now I can't even imagine the pain that you are in. This is such a difficult journey, which seems to be endless. Just when we get used to something it changes. Fear and anxiety are our constant companions. You once gave me some good advice, now, I don't seem to be able to reciprocate, so I will just let you know that I am thinking about you. I am sending you hugs and the knowledge that we are here for you.
    • CommentAuthorSass
    • CommentTime1 day ago
     
    Myrtle, my heart goes out to you. What a difficult time this must be. I feel that one day I will be where you are and I don't know how I will feel. I always try to remember my DH and how he thought about things. As others have said, this may be his way of saying what he wants. But when faced with that reality it's still hard to let go and let it be. I'm thinking of you tonight. ((hugs))
    • CommentAuthormyrtle
    • CommentTime1 day ago edited
     
    Thank you all for your words of support. I have gotten a grip on myself. I simply realized that I could not indulge in these histrionic thoughts and at the same time, be there to support him, which is my job. I am not yet keeping vigil at his bedside. In fact, he is not in bed; he is sitting in a Broda chair in the day room, although he does take a long nap in bed in the afternoon. I have so little experience with this stage of life that when I first saw him napping, I texted the hospice nurse to ask her if he was near death. She came right over and after looking at him, assured me that he was not at that point. When he becomes bedridden, I will have him moved to the comfort care unit.

    Edited
    4 hours later: The hospice nurse just told me she thought he had declined significantly since she saw him on Friday. She said he probably had 2 or 3 weeks left at most. After all these years of taking care of him, it's hard for me to accept that we are at the end.
    • CommentAuthorFiona68
    • CommentTime23 hours ago
     
    Myrtle, my thoughts and prayers are going out to you, hoping to give you strength and peace with this stage of your husband's disease.
    • CommentAuthorcassie*
    • CommentTime22 hours ago edited
     
    I have been worried about you Myrtle, so glad to see your name here today.
    I wish for you, strength and courage to see you through this daunting time.
    • CommentAuthorWolf
    • CommentTime19 hours ago
     
    I thought the last few months when she stopped eating and started again and stopped and started again and stopped - would kill me. It was then I had the anxiety attack.

    It was later that I started to understand that she was tired and had had enough. I told her it was alright to let go. She didn't understand a blessed thing and didn't respond to anything either. I've said you could have exploded a nuclear bomb beside her and she wouldn't have blinked. But it was that evening they phoned me and told me she'd suddenly passed.

    As Cassie said, I wish you strength and courage to see you through this daunting time.
    • CommentAuthorAliM
    • CommentTime14 hours ago
     
    myrtle, I also hope you find the courage and strength to endure this emotional time. Please know that we are here for you with care and understanding. Try to rest if possible.
    • CommentAuthorLindylou
    • CommentTime2 hours ago
     
    Myrtle, my thoughts and prayers are with you. I know you have the strength and love to see this through.