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Instead of getting better, I'm getting worse. He became dangerously aggressive after 10 years of my caring for him. I gave it my all, but couldn't handle it anymore. I feel lost. He was/still is the love of my life. My family is gone. Now I can't even visit him because of the coronavirus. I stay busy, but also just stay on pins and needles. I have an embroidery business in my home and I've always loved doing it, but now I've lost interest and can't seem to get going again. What is wrong with me and when will it end?

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Have you spoken to your doctor? A loss of interest in everyday activities that have previously given you joy is a symptom of clinical depression.

Treatment works! Please put in a call today!
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sister46 Mar 2020
I will see my doc in two weeks. He will see I'm not doing much healing and I feel sure he will want to give me something. I've got to be able to drive safely. I tried Zoloft several years ago, and it did work, but then I developed a bad response to it after a while. There are probably better things on the market now. Thanks for your kind response.
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sister46, there’s NOTHING AT ALL “wrong with” you. You!re reacting in a very natural way to a terribly painful loss, everything in the news is frightening and dark, and you’re frustrated in your desire to at least be near your husband in his new surroundings.

Have you any social connections, even online? There are some VERY good people here, and although all of us have different stories, we all are living in situations in which we are caregivers for Loved Ones, or sometimes not too lovable relatives/friends.

We do our best to keep a stiff upper lip, but I think I can safely say that ALL of us definitely understand your feelings, and welcome you for whatever we can offer- sometimes it just helps to know that there’s someone around who knows how much work you had over the years you were caring for your husband at home.

So summing up, you’re doing ALL YOU CAN right now, and it’s OK. PLEASE come and let us know when things get tough. Somebody will be here, I guarantee it!
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sister46 Mar 2020
As for social connections, my own family is gone. I was an only child. My husband has five siblings. They've been very responsive and I thank God for that. I have a few friends and a couple of them are VERY good, long-time friends. They're there for me. I'm the first one of our friends and family to have to deal with caregiving and a sick husband. Seems like everybody else is in perfect health! Before him, I had both of my parents for ten years and my mother-in-law for three years. All of them had dementia/alzheimers. So this isn't my first rodeo, but it has affected me the most. My husband and I used to be very active in church, but not in the last few years. He was an ordained deacon, but eventually he couldn't handle it anymore. So those relationships fell away for the most part.
Thank you for your kind response.
And it's true that caregivers try to show a stiff upper lip, but mine tends to quiver! I am a poor actress. I just break down.
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I think it's partly grieving. So, maybe depression due to the loss of your husband.

It's a big change. Maybe you need to see someone, maybe you could benefit from a med (or from some natural supplements and behaviors to fight depression).
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sister46 Mar 2020
It's definitely a grieving feeling and it's definitely depression. Most definitely a "big change". I've never lived alone before. I went straight from living with my parents to being married. And you know, when you put a loved one in a facility, you lose them twice. You lose them when they go in, and you lose them when they die. I don't know which is worse. At least now I can still hug him, but most of the time he doesn't know who I am. Alzheimer's is a horrible, horrible disease. Thanks for responding.
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There is nothing wrong with you. You just put the love of your life in a MC. You are grieving over the lost of the man you knew, love, and shared your life with of course it is hard. Have you thought about finding a therapist to help you get your emotions to line up with what your brain knows. (That you did the right thing!) You could no longer care for him, so you did what was best for both of you. You did what you did out of love. Don't let any thing or any one tell you different. I am just so very sorry that this is happening to you and you are having such a hard time!

Sending you much love and hugs. And remember we are always here for you.
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sister46 Mar 2020
Thank you for your very kind response. You "get it". Perhaps I will consider therapy if I don't begin to get my act together. My degree is in psychology--I've "read the book" so to speak--but my brain is scrambled right now. Just totally unfocused. Thanks for your suggestions.
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Call your doctor so that he or she can prescribe you medication and also see a therapist for talk therapy. It works. You don't need to suffer.
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sister46 Mar 2020
I will see my doc in two weeks. He'll see the shape I'm in because it's SHOWING, especially in my face. I can see it. I've lost 21 pounds just from pure stress. I respond poorly to SRI's (they do work for me, but I have a bad reaction after a few weeks), but hopefully he'll come up with something else. Thanks for responding.
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This is a terrible terrible loss. You have recognized he will not get better. And he was what you have at the end of your life as well, no matter his condition. Caregiving often gives spouses a "second wind" when they are so needed and now it is like stepping off the end of the earth. Allow yourself to feel this. There is no time limit. Many will not understand and will want you to move on for your "own good", but your own good is what is good for YOU. NOTHING is wrong with you. Your feelings are normal. Everyone is different. It may be several years for this to ease off a bit, and as long as your husband is alive and in the care of others there will still be so many conflicting feelings.
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sister46 Mar 2020
Your answer is very caring and loving and understanding. I feel lifted up by it. I've just lost all perspective on "what's good for me". It feels strange to even think in those terms! And you're right--putting a loved one in the care of others does cause conflicting feelings........and you're STILL BUSY. You don't just forget it and walk away. Thanks for answering!
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i lost my husband when he was 50 and I got really depressed and stayed that way for a long time. I couldn’t snap out of it like some people think you can so I got put on Effexor which helped a little but I finally asked her to put me on Celexa which has helped me more. Don’t be afraid to ask for help or try medication. Your husband may still be alive but I’m away it is like you loss him.
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Nothing wrong with you. In sense there would be something wrong with you if this didn't overwhelm you. It would overwhelm anyone.

So while it is hard, and none of us know how long this will last and how long we will have to wait it out, don't punish yourself for thinking something is wrong with you.
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Cupofjoe34 Mar 2020
Amen
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Dear Sister46. Grief has no expiration date. Your burden is enormous. You have done your best for years. This thread is unique to me in the years I have participated on AgingCare. In what way? Well, you are the ONLY one who answers just about every post from others. You are eager to get the information and facts you need in order to feel better.. You are not isolating from the rest of us. I am encouraged that you believe in God, as witnessed by your words "Thank God...." One of the psalms says, "WHEN I am afraid, I will trust in Thee." TRUST involves FAITH, which of course is the conviction that what you don't understand or even begin to fathom, is true and will occur. You WILL get better. The psalm does not say "IF I am afraid, but WHEN." It is part of the human condition. In my view, "AFRAID" may be interchanged with "DEPRESSED," "ANGRY" and other negative emotions that we all have at least at times. You are blessed to have had a TRUE soulmate in your marriage over the years. (So many do not experience this depth of joy.) Alas, he no longer knows you, or perhaps even that you are in his presence at the MC. But you know him. When you visit, you may want to sing some of the songs/hymns that meant much in your lifetime together. He and you will again know one another in a better way than ever in the bye and bye.
May God shower you with His choicest blessings in your sorrow.
Bob in North Carolina
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sister46 Mar 2020
Thanks for your very kind response and thoughts. You're right--grief has no expiration date! That's so true. Yes, we will be together again in heaven! We both have the assurance of salvation--of that I am sure. I cling to that.
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Sister46, Emotional conflicts are going to be there and they consume your energy, mind, emotions. The process of grieving, adjusting to the challenges of not being with your husband is surely a difficult, deep and slow process. You mentioned how you use to do embroidery at home. Use your skills of embroidery to create pieces that reflect the love and laughter you experienced with your husband; the special personality traits of your husband; create embroidery "messages" to remind yourself of the wonderful times and love you share with your husband. Remember, you are so normal in this process; the love of GOD is with you, and friends ...right here on Aging Care are with you.
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My absolutely unprofessional assessment is that you are completely normal, but suffering from various kinds of stress brought on by the various challenges you have been facing.
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Sister 46,
Who says you are supposed to "get over it"
This is like a death. And no one should tell someone that is grieving to .."get over it".
You did the best that you could for as long as you could.
And you did not care for him for over 10 years, you cared for him for 52 years and I am sure a few years before that even.
I told myself when my Husband was diagnosed with dementia (Alzheimer's and Vascular) that I would keep him home as long as it was SAFE. Safe for him and safe for me.
I am sure your husband would not have meant to harm you but what would have happened to him if he had hurt you? You may have been injured to the point that you would have been hospitalized and then where would he be? What if he had killed you? (a friend of mine has permanent back injury due to her husband shoving her up against a wall. She placed him after an incident where she woke up when he wrapped one of his hands around her throat and had a knife in his other hand)
On the other side of the coin how would you feel if he started resisting while you were caring for him and because of that he got injured? I am sure the guilt would consume you as much as this does.
By the way another thought, you might want to talk to your doctor about this stress and depression. There is a fine line between depression and grieving talking with a therapist might help (although might have to be a tele-conference at this point.)
Keep staying busy. We are all on pins and needles at this point.
There is nothing wrong with you do not let anyone tell you there is.
Stay strong, stay healthy!
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sister46 Mar 2020
I implemented the same thing: "I will take care of him as long as it is safe for both of us". It became unsafe for both of us, mostly me. People don't realize how many times an Alzheimer patient goes after their caregiver. It happens quite often. And it comes out of nowhere. No warning. Nothing has to trigger it. Sometimes, as with my husband, it's because the brain swells. My husband's doctor called it a "brain snap". It transformed MY life forever!

The incidents you mentioned were frightening, to say the least. My life was threatened and I truly believe the Good Lord is all that stopped it at the last minute. Thank you for sharing what CAN happen.
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I am so sorry for your loss of your husband's company. With COVID-19, it seems like he is beyond your reach.

You are grieving a loss - the loss of your husband's company. It's a big change to adjust to, regardless that it was a necessary change. Since the advent of social distancing, try to find an online grief group to share your feelings with. They can recommend ways of dealing with this.

In some ways, it reminds me of all the times my husband was deployed or away on military missions. I would intentionally stay very busy for at least a month to get used to his absence. Nights were the hardest, but being really tired helped. I would send him letters weekly and goody boxes monthly. I relished when my hubby would talk with me on the phone. Maybe doing similar activities would help.Can he take phone calls in the memory care center? Weekly letters? Maybe create small treat boxes to deliver to him. Ask the staff to send you photos of your husband. Send him photos of you.
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sister46 Mar 2020
Thank you for your suggestions. Unfortunately, he cannot talk on the phone. He's just too confused. The truth is, he can barely engage in conversation in ANY way. He just says words and sounds, not complete sentences. You just sort of go along with whatever comes out of his mouth. He has lost his ability to read. I have put our best wedding picture on his nightstand. He seems proud of that, it's the happiest two people you can imagine, but I don't know if he knows that's us. So sad.......

Thank you for answering.
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Loss of a mate is #1 on stress scale and you/we have lost our mates in the most complicated way
so confusing to have our mate alive but gone
I think you have complicated Grief
i try to look for beauty all day long in my effort to deal with my grief
it helps but mostly I am truly exhausted
please rest see you doctor and seek beauty
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sister46 Mar 2020
Alive but gone.......yes. A perfect description of what it's like. I remember when my mother had Alzheimer's and I thought, "I can still hug her and I can still hear her voice. But it's not her". With my husband, the feeling is magnified a thousand times. Thank you for answering.
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Hang in there. Acceptance happens slowly but I had to work toward that point. My wife has been in nursing home for one year now and i am just learning to accept. The transition has been difficult. Suggest: Keep busy and read The Gospels
Peace
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sister46 Mar 2020
I do read my Bible. I pray to Jesus for good health and strength to be able to keep going as long as I need to, i.e., until my husband is gone. I don't want to die first. I need to be here for him. After that, I really don't care. You sound like you've mostly conquered the concept of "acceptance". That's a big step forward.
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When I was going through similar with my Mom, a consular told me going through Alzheimer's with a loved one is going through steps of grief even before death. Loosing the person they were each day. Just hearing that was such a help to me in explaing why and how I felt. I now remind myself of the same as I now go through it with my hubby of 60 years. I try to focus on the things and times we were fortunate to enjoy together not the loss of the person he once was. Now is the time to focus on what is best for him and yourself. Just as when we were children, often we didn't understand why we had to do what we were told to do, but it was best for us. The care you have placed him in is best for both of you. It is so hard. We want to fix everything, but we can't. My heart goes out to you. You have been the great fixer, helper for years. Now it's time to be YOUR helper, fixer for yourself. Each day do something for yourself. It takes time. Put your right hand on your left shoulder and your left hand on your right shoulder and squeeze real hard. We all deserve super big hugs!!!!
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sister46 Mar 2020
Yes, you certainly do go through steps of grief before death with an Alzheimer patient. And yes, we all DO deserve super big hugs and thank you for YOURS!! People who have never been through caregiving have no idea. They can't relate. Blessings to you for now taking good care of your husband.
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It has to be terribly heartbreaking. Be good to yourself. Your husband is still physically here but the man you married isn't, if that makes sense. You are grieving the loss of his self. There's nothing wrong with you.
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Hopefully, your husband's facility is located near you. Visit him at least briefly every day. Do not abandon him, and try to start a new life without him unless his condition makes it impossible to communicate with him. Most of all, ask God for daily guidance.Hopefully, the corona thing will not last forever.May God have mercy.
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craftslady1 Mar 2020
Bobbie,
Most memory care facilities and nursing homes are now completely closed to visitors because of the corona virus. This means no one—not even family members—can visit. A phone call is about the closest thing, but even that might not be possible. I would suggest that she send a picture of herself to him.
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You described me very well. My wife of 59 years has been in Memory Care for 6 months. I have been visiting several times a week, taking her out to church, out to dinner, and more; now the unit is closed and I am staying home mostly alone. I recently joined a support group, but now can't do that. Covid-19 has disrupted the few things that were positive, She has a cell phone but keeps turning it off. I did call the staff once, who let me talk with her on their phone--it was good for me to hear her voice although I think she didn't know it was me. I have a laptop that has the capacity for Skype calls, so that we could see each other while we talk, but the unit doesn't have a computer for her to use. She wouldn't be able to use one, but the staff could help. So I am looking for something to buy for her--the simplest tablet or laptop that would run Skype. As for the prolonged grief that I have already been experiencing for 15 years and has now been worse for 6 month, I don't have an answer. I read a book, Ambiguous Loss, and my rational self has accepted what is lost, yet on the emotional, feeling, spiritual level there is no relief.
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PatienceSD Mar 2020
I’m so sorry for your suffering Lewis.
im sending my energy too.
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It sounds as if you are having adjustment difficulties to your situation which is not surprising at all. It goes without saying that you are missing the love of your life plus you are missing believe it or not the busyness of caregiving. Factor guilt as well as anxiety too. If you are feeling down as well as anxious, it may be advisable to visit your primary care physician to be screened for depression and anxiety. If you are able, try to rediscover activities you used to enjoy. Socialization is difficult right now because of the coronavirus but if you can keep busy with maybe reading,hobbies, it hopefully will help pass the time. If possible, try to maintain a regular schedule regarding meals and bedtime. I feel so bad for you, I wish there were something else to do. Sending you a virtual hug. Take good care.
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sister46 Mar 2020
You know, guilt does factor in. I don't know why, but it does. There should not be any guilt when you've done the best you can do. But there is. Thanks for answering.
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IMHO, if you're having this much trouble, perhaps you should see a counselor. However, you should see what measures they have put in place for COVID-19 first.
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Dearest sister46,
I'm so sorry for your loss. I think you need grief counseling, the sooner the better. While he has not passed from this world he has passed from you and this is a process that will take time.

Realize that you don’t have to ‘get over’ anything and be gentle with yourself and give yourself time. Concentrate on good memories of things you shared, that made you both laugh, places you visited.

Most of all be grateful. Grateful for the wonderful years you shared together. Grateful for your health that you were able to care for him and ease some of his pain and suffering. Force yourself into a smile for him and for yourself. We all love you and are sending you our energy to get through this time of your life.
Sabrina
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sister46 Mar 2020
Thank you for some suggestions I hadn't thought of. You made me stop and think about some things...........and yes, I AM grateful for the years we shared. The sad thing is.......I'm the only person on earth who remembers them! I've said this before, Alzheimer's is a horrible, horrible disease.
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What is wrong with you? Short answer is, not a damn thing. You are completely normal.

You were married forever. You lost him before you placed him but you were still physically together. He is now physically and emotionally gone. Double whammy! Don’t you think that’s enough to throw you for a loop? I do. I am so very sorry that you are struggling with this pain.

Feelings don’t end immediately. They won’t ever end. You will always care. You’re transitioning into a new period in your life. It’s unknown. It’s kind of scary. Accept your feelings. Honor your feelings. Who says that you should deny your feelings?

Of course, it’s troubling for you. You desire peace. The first step that I would take is make an appointment with a therapist. They can and will help. Give it time. Be completely transparent about your feelings. They have heard it all before and can lead you in the right direction.

You don’t need to expect that much from yourself this soon. It really hasn’t been a very long time. This virus is magnifying your feelings. You were already dealing with uncertainty and now more uncertainty so, this is completely understandable.

Best wishes to you. I hope you get to see your husband as soon as possible.

Take care 💗.
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Firsthand you did all you could. And far beyond. Which is an understatement. You're not going to get over it. You have to work through the pieces that are still haunting you. I recommend getting a bit of therapy on how to make the entire experience into learning more about you and see how you survived it as you will relate to so many people. We are never mentally ready for that kind of life change so afterwards it remains so. My best advice is to find in you what you need and never give into anymore self doubt. Your glass is yours. You choose if it's half empty or half full. At that time it was overflowing. Take that experience and look at it with a different perspective. You owe that to yourself. Much love and luck. Jo
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stress stress stress.. It takes time.
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Visit your hubby when you can. Just know, EVERYTHING TAKES TIME. Just know in your heart...
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I’m so sorry - your feelings are normal. You’ve been together over 50 years and he’s been your total responsible for the last ten. It’s a huge adjustment. I found seeing a therapist helped me talk about all my feelings of loss. Medication can also help. Being separated during corona virus makes it worse. I find FaceTiming my husband helps because I can see that he’s okay. His nursing home has been good about doing that. HUGS
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I have found that the best way to get into a better place is to find someone else to help. There's always someone who needs what you can give. When you're feeling lonely, call someone and tell them that you're thinking about them. If you're sad, get in touch with someone who has just lost a family member. If you let it happen, then those friends can be as much help to you as you are to them.
Over time, you will get stronger. And the beautiful, strong spirit that developed while you helped your husband can begin to light up some different corners of the world.
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There is nothing “wrong” with you, what you are experiencing is very natural. I think the process of watching a loved one slowly decline, especially mentally is much harder in so many ways than having them pass suddenly or fairly quickly. There is so much talk about closure when someone passes, we have funerals and services in an effort to finalize closure and when someone is murdered or dies suspiciously we look for the answers why and the people responsible in an effort to provide this closure. You aren’t being given the opportunity for closure just change, the same change any wife of so many years goes through when she is widowed but without the know,edge he’s resting in peace if you will. You still have the event to face and somewhere I. Your sole that has to be another step you are dreading. More so than those of us who haven’t been experiencing the slow slipping away of our spouse for 10 years. This process is hard on and unfair to our loved ones afflicted but it’s just as hard and unfair on those of us left watching them slip away from us before our eyes. There is a certain solace (for lack of a better word) though in being able to lovingly care for them, keep them with you at home especially I imagine when it comes to a spouse, a life partner. This just isn’t the twilight of your lives together that you imagined and maybe even prepared for. When you have to place them somewhere else there isn’t the slow adapting to changes in your life that there was when they were still physically with you. But I would encourage you to look at your decision to move him differently, you didn’t do it simply to protect yourself you did it to protect him, give him the care you simply can’t provide, it was time because that was the best most loving care you could give him. Rather than selfish I see it as a very selfless thing to do, I mean who is suffering most now? Sounds to me like it’s you. If he had a lucid enough moment would he want you to have kept him at home having violent outbursts he had no control over or should he beg you to place him somewhere where he has multiple caregivers trained to deal with these episodes and remove you from any danger his uncontrollable disease might place you in? Would he be horrified to learn that he was this way with you? This was not so much about you as it was about him, try to keep that in mind.

When a loved one passes we often feel guilt along with the hole their absence leaves but we find ways to get closure and move past some of this, be at peace with their passing. You experiencing The same hole, absence but without the ability for closure yet, it’s an impossible situation. No doubt often in his world when he thinks about you he pictures you embroidering in the back room or visiting with family, fiends and your church group, the things you did day to day 10 years ago before his illness changed things so when you do these things that give richness to your life you are supporting him as much as yourself, you are honoring your live together by living your life. Will it help you miss or mourn him less, probably not but it might eventually help you do that differently so it doesn’t feel so empty. Somehow I doubt he would want you feeling so empty and would feel terribly guilty about being the reason for that. What would you want for him if things were reversed and how would you choose to think about your good years together? It’s like looking up at the stars at the same time when your sole mate is thousands of miles away and knowing you are each looking at the same stars, you just need to live the life for the two of you now but your both thinking about the same life. Does this makes sense, not sure I’m explaining this well.

I do hope you can find a way to cut yourself and your dear husband a break by putting some joy back into your life. It isn’t a betrayal or even “moving on” at this point it’s validation of your life together and your love being strong enough to carry with you as you adapt.
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sister46 Apr 2020
What a great analogy. Thank you for this. I identified with so much you said. I want to print it out and keep it in front of me! Today I got a bad report on his condition. The doctor saw him today. He has been re-classified as "acute" and his brain swelling has worsened--and that's causing behavior problems (whatever that means--I have such a need to know). I haven't been able to see him for nearly seven weeks because of the virus. It's just killing me. I want to see him for myself and spend time with him. I am now so afraid he will die and I won't get to say good-bye.
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Dementia is kind of a quiet crisis. You get used to living that way and then suddenly it's gone. Like going 60 mph and then stopping. It was hard for me to figure out what to do next and I couldn't concentrate on anything. Didn't want to. Eventually, I started up again. Give yourself some time.
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sister46 Apr 2020
Me too! I go in circles all day, don't concentrate, don't want to! Try to read and all of a sudden realize I haven't internalized a thing for the last four pages. Everything is an effort. Thanks for your response.
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