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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
    • CommentTimeFeb 13th 2017
     
    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
    • CommentTimeFeb 19th 2017
     
    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*
    • CommentTimeFeb 20th 2017 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
    • CommentTimeFeb 20th 2017
     
    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*
    • CommentTimeFeb 20th 2017 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
    • CommentTimeFeb 20th 2017
     
    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
    • CommentTimeFeb 20th 2017
     
    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
    • CommentTimeFeb 21st 2017
     
    Myrtle, my thoughts and prayers are with you. I know you have the strength and love to see this through.
    • CommentAuthormyrtle*
    • CommentTimeFeb 24th 2017
     
    My husband has been moved to the "comfort care" unit. I had some issues with the room they put him in but after a small battle, they found a better one for him. The problem is I don't have much fight left in me - I am truly exhausted. Gas gauge and refrigerator were both on empty so I did not get home until 8:00. Phone rang. It's my stepdaughter. She wants to fly out here (Mass.) from Arizona tomorrow and may bring her sister and brother with her. (Sister and brother have never been here.) She wants to get in and out before it starts to rain heavily. I told her I have plenty of umbrellas. Apparently the problem is temps in the 40s and 50s. I asked her to wait 'til Sunday or Monday since I have been spending all my time with husband and the house is not ready for guests. (I have no clean clothes, also have to do my husband's laundry, and the house is a mess.) But she says she wants to get the shortest flight, whenever that is. Then she asked about funeral services and says that she assumes it will be several weeks after death, as is custom in AZ (which I doubt). I said that is not the custom here and normally it is within a week. She said that she wants to attend but may not be able to get back out here the same week as death. I said that I certainly would wait enough time for her to get a flight but do not plan to wait several weeks to bury my husband. (I did not say what I was thinking - that I am not planning this for her convenience and that the whole conversation was very disrespectful.)

    I have been running this operation alone since my husband was diagnosed in 2007, but all of a sudden others want to get in on the act. I truly sympathize with those of you who have told us about struggles within your own families.
    • CommentAuthorcassie*
    • CommentTimeFeb 24th 2017 edited
     
    I am so very sad for you Myrtle, you deserve to be taken care of not to be inundated with all that rot.
    Speak your mind (if you have the strength.)
    I am holding you in my heart at this time and I send you many blessings. cassie xx
    • CommentAuthorAliM
    • CommentTimeFeb 24th 2017
     
    myrtle, My thoughts and prayers are with you as you continue in this long devastating battle. So sorry you have to have added stress from family. At this point I would not worry about the house or empty fridge. Although it is too late for help to be offered she may realize how difficult these past 10 years have been for you. The planning for services should be yours if that is your wish. Friends and family that truly want to attend will be there. Please try not to worry about anyone but yourself. Rest a little if possible. We will be for you. Sending peaceful thoughts and a gentle embrace your way.
    •  
      CommentAuthormary75*
    • CommentTimeFeb 24th 2017 edited
     
    Dear ________ (Stepdaughter’s name),
    I am a friend of your stepmother’s and respectfully ask you to consider making other arrangements for accommodation when you visit your father, as I understand you plan to do.
    She is truly exhausted, and I am concerned that every consideration be extended to her. From my own experience, I know that caregiving is all consuming in its demands. Guests, no matter how much they are enjoyed and welcomed at other times, are more than can be handle at this difficult time. I want Myrtle to be able to move at her own pace and conserve her energy and time to continue to care for your father and herself.
    Sincerely,
    Mary
    • CommentAuthorLindylou
    • CommentTimeFeb 25th 2017
     
    Myrtle, thoughts and prayers are with you, as they have been. I'm with Mary. Tell the children that any other time they would have been welcome to stay with you, but you are certainly not in a situation to host them now. Give them the name of the nearest hotel/motel. Give them the name of a limousine service that can bring them from the airport. Or (better) suggest they rent a car from the airport. You can, if you are feeling generous, tell them their father loves them and you are glad they are making the effort to see him. Fiblet though it be.
    • CommentAuthorBev*
    • CommentTimeFeb 25th 2017
     
    Mary75, what a good letter! I hope Myrtle uses it.

    Myrtle, I am a few weeks out from my husband's death from dementia. I know what you're going through. Like you, it had been 10 years. I actually stayed with him in the nursing home for 11days and nights, until he took his last breath. They kindly provided us with a room with a bed for me. I only went home for showers and a change of clothes. It is heartbreaking to watch someone you love slowly dying. We weren't told he was close to death until that day I went to stay with him. It took longer than they thought it would. When he took his last breath, I suddenly felt relief, then an immense sense of loss for the man I knew, even though he was so different the past 10 years than he was before.

    I can't really understand what I'm feeling now. Some days I can hardly get through the day and others I feel pretty good. Have I really accepted his death? Am I in shock? I don't know, because I can laugh at things on tv and I can, on some days, interact with people, but most days I'm content to just stay home by myself. I cry, some days so hard I can hardly catch my breath, yet other days I feel as though he's still here, that maybe I should go visit him.

    All I know, Myrtle, is that we do get through it somehow. We find the strength and courage to get through this just like we did when we received the diagnosis and all the long years of dementia. We think we'll never get through it but we do. I wish you the strength and courage I know you must have to travel with him on the rest of your journey together.
  2.  
    Hello Myrtle - I haven't posted in quite awhile but still try to check in and keep up with everyone. Your thoughts and suggestions have been such a help to me in the past and I just wanted to tell you that I am thinking about you now as you face this difficult situation with your dear husband's condition, as well as dealing with his family members. Please take care of yourself as best you can and lean on the help and support of family and friends.
    • CommentAuthorSass
    • CommentTimeFeb 25th 2017
     
    Oh Myrtle, how my heart goes out to you!! By the time you read this I imagine that they are there and adding to your stress. You truly do not need that. I agree with Mary75 and think her letter is spot on. I think you should do what you think is best for you and your husband. Your step-daughter's selfishness and self-centeredness has no place at this time (or ever for that matter). This is her father and she should be helping and supporting you, making it easy on you, being there for her father and not worried about getting out before the rain. I'm praying for you that you have the strength and patience to make it through this difficult time. I wouldn't go out of your way to do anything for them. You simply say you told her you weren't in a position to have company and you meant it. It's extremely inappropriate on her part. I wish I could just jump on a plane and fly up there and just run interference for you! This stuff just upsets me and makes me angry. Sorry for my rant. Hugs to you...
  3.  
    Myrtle, how I wish we could all be the shoemaker's elves stocking your refrigerator, changing your bed, and tidying up your house. You worry us because we all know the burnout that you are experiencing. May you find some peace in the small things right now.
    • CommentAuthorGJS4406
    • CommentTimeFeb 25th 2017
     
    Got a question. I do believe my wife has all the symptoms of FTD, The questions is this, personality changes, are they common? In other words, one day sort of like a high school brat, next day somewhat better but withdrawn, next very happy for a while and back to being 'young' again. Thanks in advance for your comments/answers/thoughts
    • CommentAuthormyrtle*
    • CommentTimeFeb 26th 2017
     
    Thank you, everyone. Mary75*, your letter might come in handy in a variety of situations. I think we should all put it on our computers and revise it according to the circumstances! My husband's daughter could not arrange a flight until Wednesday. Her older sister (who is much more considerate and not nearly as intense) is coming with her. They volunteered to stay at a hotel if I was too stressed. However, now that I have some breathing room before their arrival and the visit will be shorter than planned, I am OK with their staying here. We agreed that if I was too tired or stressed, they would go to a hotel.

    My husband was perky yesterday but it tired him out and he stayed in bed today. I fed him a can of Ensure and some ice cream but that's all. He did smile at me when I said some silly things and kissed me back once. I'm going to spend most of the day with him tomorrow.

    Last night, I went to a potluck supper at a friend's house. I have not seen this group since September. My friend had dried a bunch of herbs from her garden and from others' gardens (including mine). Before dessert, everyone filled a tea strainer with their choice of herbs and then pored boiling water over it and let it steep. I like mint tea so I chose a mixture of mints - apple, pineapple and peppermint. It was a nice break. Today my sister and her husband came out to talk about funeral plans. I had already thought about it but it was helpful to talk with them about pros and cons. I know many people advise buying prepaid funeral plans but in my case it would not have worked well. I would have chosen a funeral provider based on assumptions that no longer apply. Also, since we never had a lot of cash around, prepaying would have forced me to liquidate assets before it was necessary. But that just applies to my situation - not everyone's. I can hardly believe this is happening. I do not look forward to what is to come but will do my best. Bev, your continued survival gives me hope for my own.

    BTW, I realized that these posts have strayed way off the subject-matter of this thread, so I'm going to put my next post somewhere else.
    • CommentAuthorCarolVT
    • CommentTimeFeb 27th 2017
     
    Hi GSJ4406. If you haven't already found the FTDSupportForum.com, you might find additional support there. It is an larger group not limited to spouses. Do not be shy about registering; your privacy will be protected. I have learned a great deal from the participants on that site. Our experiences are all different, but with so much in common. If you aren't doing so already, I also suggest keeping a journal of how your wife is acting day to day. It may help you see what the longer trend is and how much/how quickly her personality changes, and if there is a basic change underlying all the surface manifestations. Also, you may want to start your own thread here with a specific title about your question. Some of us read every new post every day, but probably that isn't true of most, and a separate thread with a specific title may reach those in situations similar to yours. All Best Wishes.
    • CommentAuthorpaulc
    • CommentTimeFeb 27th 2017
     
    GSJ4406, on the good days your wife probably uses up a lot of energy, so on following days the symptoms are worse as she recovers. I also strongly recommend FTDSupportForum.com and keeping a journal.
    •  
      CommentAuthorCharlotte
    • CommentTimeFeb 27th 2017
     
    My belief has always been to visit people when they are alive, not dead.
    • CommentAuthorcassie*
    • CommentTimeFeb 27th 2017
     
    Charlotte, that is a very good belief that I agree with completely!
    • CommentAuthormyrtle*
    • CommentTimeFeb 27th 2017
     
    That is my belief as well, Charlotte.
    • CommentAuthorjulied
    • CommentTimeFeb 28th 2017
     
    My husband has moderate EOAD. The neurologist says he thinks he has a high cognitive reserve because the PET scan shows more damage than he is displaying. People who talk to him don't think anything is wrong. He has some memory issues, but he's still very articulate. Sometimes I even get sucked into thinking he's fine. Many times, he seems so normal. But what I'm having a hard time dealing with is the apathy and lack of motivation. I know, I know. It's part of the illness. It's not him. Only this is the new him, at least until he gets worse. I had to go get a job after he lost his. I work full-time, come home and the house needs cleaning, laundry needs to be done, meals need to be made. I can't afford to hire help. And he just sits on the couch, watching TV. I come home after working all day and work more. And he just sits there. I give him simple assignments, but they don't get done. I hid the remote one day, but that just made him mad. And it's not just sharing responsibilities, that's not the worse part. He just doesn't care anymore. He used to be so kind and considerate and show such love and concern for me, and again, I know it's the illness, but it still hurts. I had to drive to work in a snowstorm a couple weeks ago. When I got ready to leave the house, I said: "I'm driving to work in a terrible snowstorm, and I'm scared to death." And with not one speck of emotion, he said: "See you later." And then he sat down to watch TV. I know this is the disease. I know I can't change him. I know it will get worse with much more difficult symptoms and behaviors. But how have any of you dealt with the apathy?
    •  
      CommentAuthormary75*
    • CommentTimeFeb 28th 2017
     
    After awhile, I found that I got used to it.
    • CommentAuthorjulied
    • CommentTimeFeb 28th 2017
     
    I'm not there yet.
  4.  
    Julied, this is a terrible time for you. The apathy feels like abandonment. mary75* is correct, you do get used to it, mainly because other things will eclipse it. But this is the beginning of the pain and heartbreak where you become the captain of your ship and his too. We know.
    And I, for one, feel a catch in my throat every time I hear the beginning of this story again. You will find that you possess incredible resources and they will all be tapped. Stay with us. We are a strong, empathetic and resourceful group. Our rope has saved many souls and we are here for you, too.
    • CommentAuthorjulied
    • CommentTimeFeb 28th 2017
     
    Thank you so much. Yes, I feel abandoned. We were a team, and now I'm a solo act. I know I have no choice but to get a grip and deal with it. I've spent so much time reading other caregiver blogs and reading so many of the stories and threads here on this message board and I know I have a long and challenging road ahead. I stand in awe that so many here as spouses have found a way to survive. The veterans on this board are like rock stars to me. And my heart breaks for Myrtle who appears to be close to earning her star, but at the same time--if I'm honest--can I be honest? I feel guilty because I wish it was me. My journey has just begun, but I'm already ready for it to be over. My father died suddenly at the age of 65. At the time, I thought it was horrible for my mother to have no warning before my dad was just gone. But I'm quite certain this death in excruciating slow motion is much worse. Thank you all for being here. P.S. Today is my birthday. He forgot. I know it's not his fault.
    • CommentAuthorAliM
    • CommentTimeFeb 28th 2017
     
    julied, Happy Birthday to you. Try not to feel guilty about anything or it will be so much harder on you as caregiver. Nothing is easy about this Alz monster but as time goes it will be easier for you to accept. Take care.
    • CommentAuthorcassie*
    • CommentTimeFeb 28th 2017
     
    Happy Birthday from me too, julied.
    I think that the apathy was the most difficult and hurtful part of the whole illness.
    Like your husband, mine was the same. We were a team but then with the dementia that was all over and as you said, you are flying solo.
    I remember a time when I was on the ground, bleeding from a severe cut to my leg and he literally stepped over me and just said, "oh, you have cut yourself"
    and kept going! I think that it is only our strong love for them that allows us to endure and believe me, you will.
    Take care and know that we really do understand,
    • CommentAuthorRona
    • CommentTimeMar 1st 2017
     
    So here I am coming up to 8 months since Lisa has been in care. A few months ago we adjusted the meds and things had been going along fine then afew weeks ago started to deteriorate again. Always anxious and fearful. We talked bout adjusting meds again or for the last couple of months the idea of moving her into gentle care, another wing basicly more of a lockdown area far calmer, quieter with less stimulation and people. They have been monitoring her behaviour she has also become a bit aggressive at times. We have a Seniors outreach team (SORT) made up of Doctor, neurologist nurse, independent from the facility that monitors her meds and basicly makes the recommendations.

    So I am away for a week of skiing trying to redefine who I am get back to a life outside of the dementia world, Monday first day am riding up the lift when I get a call from the facility SORT has just been in and recommended Lisa move into gentle care a bed is available can make the move tomorrow that was yesterday. Cannot hold the bed and if we don't make the move who knows when another bed will be available. So I said ok and said I could leave and come back they suggested may be easier if I didn't. I am still on the mountain and the move happened. I have two different workers who spend time with Lisa so both spent time with her yesterday and from all reports move went well. Well as well as it could.

    So that is where we are at. She is also becoming Incontinent having accidents even though she is on a regular toileting schedule. Even though I know things have deteriorated when I hear the SORT team say there has been a significant decline it makes it real. I am up here trying not to feel guilty just thinking about her making this move being afraid and alone but what would happen if I was there would it make it any better or would it be harder? I am staying in contact with how she is doing and if need be will head home but right now I am staying and will be there on Friday. Like Julied feel guilty wanting this to be over but knowing what that means and how could I think that.
    • CommentAuthorMim
    • CommentTimeMar 1st 2017
     
    I never think to come to this particular thread, I don't know why. Have just read through the last couple of pages....Myrtle, I'm so sorry to read of what you are now facing. You have been an example to me. Keep strong, you will be in my heart & prayers.

    To whoever was talking about having the mammogram (I forgot who it was!!)...I have been through ovarian cancer during this past year, with a radical hysterectomy (that's what they called it), several months of chemotherapy & as of the last CT scan & blood work, I'm cancer free. I had to go through with it because I've not wanted to go before Dan. I want to be there for him, even though I don't get to see him more than once/twice a week. He now has bladder cancer, had a stone removed from his ureter, & some tissue for a biopsy. It came back positive, so on Mar. 7, he has another surgery to remove the rest of the cancerous tissue. Then....a decision has to be made. It's a rough emotional road to travel, but I need to see him through it, whether he realizes it or not.