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I have been the caregiver for 5 loved ones (including my MIL & FIL). Currently caring with part-time help for my 93 year old Aunt who suffered a stroke 7 months after my Mother died in Feb 2018 @ age 94. I know I didn't have much time to grieve the loss of my Mother because there was so much business (funeral, selling my childhood home, then dealing with my Aunt's stroke) to tend to. On top of that, 2 years before my Mother started to decline intensely, my husband & I chose to build a home that would accommodate our later years. Unbeknownst to me & in hindsight, taking on such a big project was unwise. Right now, I feel like after 42 years of marriage, I'm seeing a side of my husband I don't like. I know he deals with everything in a "business like" manner, BUT- Ex; after my Mother's death, I feel he pushed me to get over it (his words "@ least you had her for 94 years. You should have known it was coming"), cleaning out my Mother's home & putting it on the market 2.5 months after she died (he said " I didn't want to see you sink into depression & delay the inevitable, I felt it was best for you"), making decisions regarding our new house. Honestly, after Mom died, I wasn't into it & emotionally shut down. 3 weeks ago, I fell & broke my ankle & nose. This is the first time I've been injured & needed care for myself. He is too busy with work so he helping me is minimal. Fortunately for me, I 've always been very resourceful & find a way to get things done.


Long story, short- Currently I am feeling that my Aunt will be the last of my caregiving. I pray that I die first before my husband because I am so hurt by his words, attitude,& actions, that I don't want to care for him when his time comes (please don't badger me of my marriage vows " in sickness & in health"). It has crossed my mind that he may be exhibiting early signs of ALZ. It does run in his family.


Have any of you generous caregivers felt this way about your spouse? I know I am feeling hurt & disappointment ( I have told him this). Thanks for letting me vent

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I understand completely. For 45 years I have felt I am the only one who is married. Hubby was always far more devoted to his family than to me. He even told them we’d take on the care of his mentally challenged sister without asking me. (After my epic anger meltdown he changed his mind) He handled everything. He hid our finances from me. Our bills were even sent to his office. When we’d been married for 8 years and had two very young children, he cheated on me and I’m not stupid enough to think it was the only time. Now, he is bedridden and I do everything for him but feed him. He is a narcissist and doesn’t understand (or approve of) what stress I’m under handling 100% of everything and working part time at the age of 65. He didn’t want to understand what it was like to care for my mother who was difficult to say the least. During the time I cared for her, I discovered my grandfather had committed suicide when I was 12. I’d always believed what I’d been told, that he had a heart attack. My husband told me to get over it, that it had happened 50 years previous and I had no reason to be devastated after all that time.

He’s never done anything to help me or take care of me when I’ve been sick or after surgeries. When I had a gall bladder attack, I was in such pain I crawled into the bedroom on my hands and knees and practically begged him to take me to the hospital. I mentioned the only relief I got was when I was lying down. He told me to “go lay down then” and went back to sleep. I had to call an ambulance. I almost died from the infection.

Instead of stewing in your own juices, either talk to your husband when you feel you can be calm and non-accusatory, or if that’s not possible, go talk to someone else, like a therapist. Your husband, like mine, acts this way because he always has and you’ve been so busy care-taking and perhaps, like me, he feels he’s had to handle all this on his own because you’ve been preoccupied. He’s gotten away with it and believes it’s ok. He needs to know it’s not. Know what you want to say and even practice in the car by yourself before you speak to him. Don’t engage in arguments. Walk away if one starts. Good luck. Like I said, I understand.
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NeedHelpWithMom Aug 2019
Wow, Ahmijoy

You have been through a lot. Your post is extremely thought provoking. It really is.

You’re a living saint. I mean that. You’re stronger than a lot of people to have stuck it out this long. I’m not judging you in any way. I don’t have any right to judge anyone.

You know, people do judge easily and I don’t think they realize that things can happen gradually which makes it harder to realize what is happening. Deceptive behavior can wreck havoc in a relationship.

I wish your husband had not treated you like he did. The line that truly jumped out at me was you being sick and calling your own ambulance. That’s hard to think about that happening to you. Your health was in danger. Geeeez.

I don’t know if you have forgiven him. Your actions show a forgiving person. I would never expect you to forget any of those things, all were awful. I just hope he is fully aware of the gem that you are by caring for him now. I don’t think anyone would blame you if you didn’t and divorced him years ago. Hugs!
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It is not self-pity to be having to face reality.
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I understand what you are saying. Although, I am nowhere near having to worry about these things yet I've often wondered how caring for my hubs would be. When we were told my mom was dying and it would be just a matter of time he says "let's go grocery shopping" then has a temper tantrum in the store cause they didn't have his favorite bread. And no, I don't think this is his way of dealing with sadness. So before anybody goes down that road with me.

He has even told me that he doesn't think he'll even cry when his parents die. Not a pillar of strength by any means.

So Caringrn I totally understand where you are coming from.

When I cry I go off by myself.
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Thank you Gershun, Sendhelp, Ahmijoy for listening to me. Ahmijoy, about telling my husband about my feelings- I have but presently, I feel apathetic. I don't even cry anymore. Not a good sign, I know.
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DizzyBritches Aug 2019
Caring RN, I’m sorry your husband was/is so clueless. That kind of response from my husband would make me feel disrespected.
I don't hear self-pity in your tone at all. Is there someone else in real life you can talk confidentially to?
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I don’t blame you for feeling hurt and disappointed. It sounds as if spouse let you down when you really needed some extra TLC. And you have had more than your share of major stressors in the last few years!

What did your husband say when you let him know how you felt? Did he blow off what you said? Mine tends to do that with me. I wonder whether he believes me when I’m hurt by something he says. I have to say it’s rare that he does it. But sometimes I wonder who I married, and whom does he think HE married?
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CaringRN Aug 2019
Thank you DareDiffer & DizzyBritches for your responses. This is why I come to this site because thru our similar experiences you understand the reality & pitfalls of caregiving. DareDiffer, you offered a new perspective. In the past, while taking care of Mom, I was seeing a therapist. The sessions were helpful. DizzyBritches, when I spoke to my husband that his words were hurtful & uncaring, his response was what I quoted, which did not comfort me nor help me feel understood.
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Snap re 5 family members over 27 years. My partner has Aspergers so can be very insensitive and uncaring it feels at times. I would point out you sound like you are quite severely depressed. ( Not a bit surprising given all the circumstances).

I would speak to your doctor, sometimes cognitive therapy and or medication short term can really help. Plus, if you can, and I know it’s very hard to, learn a new hobby or take up an old one, where you meet others without your husband about. Something that has nothing to do with caregiving.

A change can be as good as a rest, and a change in people you meet may do wonders for your esteem. Be kind to yourself - treats don’t have to cost money. I love sitting watching the sun set over the water....

i shall be thinking of you
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CaringRN,

I get it. Grief is important. It’s not healthy not to go through the stages. You were counting on your husband for support and feel let down. You are entitled to feel as you do. Acknowledging your feelings is a good thing.

It’s really hard to go from one tough situation straight into another one without a breather.

I hope that things will ease up for you soon. You can vent anytime.

I think everyone has had disappointment at one time or another with a spouse. No one has a perfect spouse. Nor have we been the perfect mate.

I think it was absolutely fine to express your feelings to him. That’s better than bottling it up inside and then exploding later. You sound like you are reasonable, intelligent, thoughtful, yet you have had an overflowing plate for long enough. Things are bound to spill over from time to time.

As soon as you can, take some time for yourself to reflect and hopefully things will become more clear to you. Sometimes it is hard to see things clearly when you are right smack in the middle of it.

I wish you well. Take care. Hugs!
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dlpandjep Aug 2019
What a thoughtful, compassionate reply. Bless you.
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You will not find any badgering here. You need to take care of yourself or there will not be anything left for anyone else. You sound like you are feeling guilty? Why? Boundaries are good and it sounds like you are through with caregiving and that is very ok.
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CaringRN Aug 2019
Thank you for your response, but no, I don't feel guilty. God knows my Mom was a Pro in laying the guilt on me all my life LOL!
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Hi CaringRN,

After my career military brother died of testicular cancer in 2015, I had a very hard time with PTSD. After 2 years of caring for him an through hospice, which I do not recommend for the uninitiated b/c you are still on the front line of caring the for dying loved one and it took up to 45 min for the nurse to show up while my brother was in screaming, intense pain that I could not control with the meds. Or abscesses bursting and excessive, uncontrolled bleeding. And that I gave him what was his last dose of medication and watched him stop breathing. I have to allow a for the days that are filled with grief and more emotionally intense.

Then mom broke her hip in 2017 at age 87 and I became her caregiver. Surgery went good, rehab not so much. She has been bedridden since and my father is down to 128 lbs (6''1") skin and bones + 2 caregivers are not enough. Father has been diagnosed with leukemia. They will not discuss NH, AL and I had to hire the caregivers myself.

Really, there is only so much we can do. But to watch your family disintegrate requires the help of professionals and therapy. Please reach out for both.

[[hugs]] !
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NeedHelpWithMom Aug 2019
God bless you! Hugs for you in your time of need. How sweet of you to reach out. People like you lift me up. I’ve been primary caregiver to mom since 2005. It’s a long journey, isn’t it? Take care...
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Yes, you took on too much at one time. Doesn't Aunt have her own family, if so, time for them to step up. It can't always be you. My GF is killing herself taking care of a husband she had been estranged from. He should be in a NH but no, she is going to care for him. TG her business is in her home.

Everyone grieves differently. Your husband is a realist. So is mine. This can be good and he thought he was helping.

My Mom was 89 with Dementia. I was there thru it all and was so relieved I didn't have to worry about her and all that went along with her care. I miss her at certain times, like the pew at Church.

If possible, find someone else to take over Aunts care. Take a little trip by yourself. You have a new home to enjoy and hopefully back on track with husband. This is your time.
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CaringRN Aug 2019
@JoAnn29-Thank you for your reply. My favorite Aunt never married & never had children. She is(& still is) a phenomenal woman. When I was growing up, she was & still is, my inspiration. An independent career woman who took care of my Grandparents( my Mom seldom helped) & helped other members in my family financially. She will be 93 next month & up until Sept 2018, when she had the stroke, she has lived independantly. I visit & call her weekly, but after the stroke, she needed assistance. My cousin & I worked out a schedule so that there is coverage 5 days a week, running errands, meal preparation, ect.
We have not moved into our new home yet because it usually takes about a year to get permits, architecture, approvals completed before the lot is cleared & there were other set backs. Currently, my fractured ankle has set us back.
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Your DH doesn't handle 'emotions' well..........he's afraid of them. Afraid of what YOUR emotions may do to you. That they may kill you or cripple you or send you screaming into the night. So he minimizes them. Tells you to 'get over' the death of your mother as if it were no big deal, you had her for so many years, after all. He was so deathly afraid you'd fall into a deep dark depression after her passing that he forced the speedy clean out and sale of her home, to keep you 'busy' and 'preoccupied' so you'd have no time to think or to grieve. He feels like if you sweep things under the rug, under the rug they'll stay, so life can go on 'as if' nothing bad ever happened. Now you fell and broke some bones and are in need of help, which also scares the living HELL out of him. You are HIS rock, not the other way around! What is HE going to do without YOU now? Again, fear is at the root of his harsh words, not lack of love or caring (in my humble opinion).

Take a different approach to what's happening here, my friend. If you view his behavior as Fear based rather than Not Giving A Damn, I think you'll see things differently. That's not to say it's okay how he's acting or what he's saying..........it's not. It's just explaining WHY. It's up to you to make him understand, after 45 years of marriage, why you deserve to be treated better and in a much kinder way, regardless of his fear. He can be business like and emotionless all day long with his coworkers, but with YOU, he needs to soften up and give you what YOU need. Nobody deserves to be rushed through grief, or to have serious issues pooh-poohed away or swept under the rug. The negative effects WILL come out one day, and he REALLY won't like THAT outcome!!

Wishing you all the best of luck and lots of peace, dear woman.
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NeedHelpWithMom Aug 2019
Very well said, lealonnie
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Oh dear. I hear warning bells going off. What age is he and has he always been like this. Only concerned with work. Little or no empathy. Leaves you to do EVERYTHING because “ I have to work”. Does he always have to have a project? Was he always refurbishing and changing your old house.
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Sounds like your reactions are a mix of feelings: unresolved grief for mom, caregiver burn out, and woes from putting everything before your marriage. Your hubby is hurting too, for your to reconnect with him. Your husband has probably dived deeper into being pragmatic - which is his coping mechanism and his personality. You seem to have a "relationship-oriented" personality and your inner world has taken a beating. Find a Griefshare group online or at a local place of worship. These folks help each other through the grieving process. I also suggest that you talk with your husband about how caring for Aunt's needs and nurturing your marriage needs can both be met in satisfactory ways.
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You may be experiencing “transference.” Basically, you might be transferring your feelings of anger and frustration and grief onto your husband. You have not grieved the loss of your mother yet. Compound that with the continuous burdens you mentioned above.
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Oh dear! Your husband's lack of understanding and compassion when you needed to grieve for your mother is painful. There is no "should get over it" in grieving. You need as much time and space as it takes. Arriving and grieving both requires lot of energy. You must be exhausted. You may have fallen and injured yourself b/c you subconsciously knew you needed a break. If your husband needs caregiving before you do, and if it have the resources, you should involve hired help as much as possible so you don't have to combine caregiving with hurt and resentment. I feel so sad for you. I am glad you have used this forum to "vent."
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RedVanAnnie Aug 2019
RVA's sentence #4 was supposed to read "Caretaking and grieving both require lots of energy.,"

Excuse my self-editing. Auto-correct sometimes gets the better of me.

RVA
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I’m caring for my 91 year old mom with alz The physical strength it takes working with her (only 125lb) is unbelievable. I know there is no way I could care for my husband if he would not be able to stand or roll himself in bed. My parents told me what nursing home they wanted many years ago. I have told my kids it okay for me to be in nursing home
Only you know what you can handle Do what works for you. No guilt
Hugs
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Singing my song!  I wasn't a caregiver for five people, but I wound up cleaning out 5 homes of relatives who died, am currently the care giver for my mom, and I told my husband I had spent a career of caring for sick people, and I didn't want to have to take care of him on top of it, so don't get sick.  He already has his mind made up to leave me anyway, so he did after 20 years of marriage, and after I raised his son for him as well.  He retired mid-school year, so I suspected it was due to health reasons that he did that.  However, my replacement who was encouraging this dumping of me is high maintenance.  She's just waiting for him to die so that she can have the money.  Hope they stay together a VERY long time!  They are made for each other!
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Most men are practical and logical. When there's a problem, they like to solve, rather than talk and delve into feelings, something many men are not good at. That's how men help.

My husband is that way, logical and practical, and I'm glad because when my emotions are taking the better of me, he's there to help make sense of things. When I want to share feelings, I call my girlfriends, that's what they are for.

You said: "I know he deals with everything in a "business like" manner, BUT..."
No 'but', you expect him to act out of his characters, that's not fair to him. And you want to punish him by not taking care of him later? Hmmm. I think your emotions need to be in check.

Sorry my answer isn't warm and fuzzy, it's because I'm being logical here.
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DizzyBritches Aug 2019
My husband is like yours, PB. I don’t get upset anymore. It is what it is. He’s a good, decent man, but WILL NOT TALK about feelings.
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I get what you’re saying and it’s true, polarbear but if we are to understand how a ‘man’ feels, in turn shouldn’t they understand how we as women feel? Does that make sense or total nonsense? Just asking? Thanks.

As far as girlfriends, some understand and some do not if the have no experience with it. Some people have never gone through any of this. I have a friend that lost her dad when she was 3, so she doesn’t even remember him and her mom died in her 50’s so she never took care of an elderly mom. I agree though that most women have more compassion.

I just don’t like the idea of a man getting off the hook simply for being ‘male.’ Can we get off the hook for being women? Women do everything that men do now. We have the same stress and heart issues that men have.
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polarbear Aug 2019
NHWM, my husband can't write a greeting card to save his life. He just doesn't know what to say, not the mushy feely stuff, he's totally lost when it comes to that. I write ALL the greeting cards to everyone including his relatives.

So, I don't expect him to be different and suddenly know how to act or what to say when the occasion calls for it. No, that's not the same thing as letting him off the hook.
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First of all, go back to the earlier years with your husband. Have his remarks really changed over the years or would a comment like telling you to get over it (with your mother's death) have been something he might have said 10 or 20 years ago? Perhaps he hasn't really changed and you are just worn out and expecting a little more empathy/kindness than his personality every really had in all your years of marriage.

You said you have always been resourceful. It sounds more like no matter what came along you managed without his or anyone's help. That's how he sees you and the woman he has always known. He may not even be aware you need more help if you haven't told him. You are tired and overwhelmed, but he may not have the slighted inkling you're not as strong as you used to be. He can also see this as a decline on your part, being fearful you are changing. As long as he sees you 'being resourceful' you are still the same ol' gal he married.

If there is a real change in his personality (not common to his past history with you), you may very well be dealing with some sort of dementia issue. If he is still comprehending things well, find a few minutes to sit down and talk with him. You might want to write a list of things you want to say so you can stay on course without being accusatory or blaming. Maybe start off with - it's my fault for not talking about this sooner, but I am asking you to help with xx problem. I hope you can have a good exchange of words and work on issues.
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hVSdXu9C Aug 2019
This is a wise answer. Thanks.
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I have only cared for my Mom and several years ago my dad who was eventually placed in a nursing facility due to strokes. My spouse and I broke up due to his constant degrading me. He was like a child wanting attention. When we put so much energy into caring for others we tend to ignore the loved ones who are placed in the background. Your husband may just be jealous. But we are stretched so thin and take for granted our partners who are setting in the next room waiting for a bit your time as well. As care givers we cant set a schedule when we will be free. It's a no win situation. We do what we can.
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CaringRN Aug 2019
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You are doing and have done an amazing job! I had My Mom with dementia for 9 years. One month (1 1/2 years ago) after her death, we got my husband’s official diagnosis of cognitive decline--probably a one-way ticket to Alzheimer’s—and I realized I was losing my partner and our planned retirement together. So yes, I know that feeling of “just let me die and be done with it”. You’ve done much more than I ever have. Kudos 2U! I’m sad for the way you and your husband handle emotions and challenges so differently. That multiplies the difficulty. The instinct is to “snap”, clear a safe space around ourselves, shut our feelings off and get on with it. Of course, as others have pointed out, and as you no doubt know already, this is a very dangerous and short-term solution.
Not knowing what your spiritual beliefs and resources are, I really hesitated before I decided to share this. It is my experience and nothing more. I’m not suggesting it will work for you or others, but this site gives us an opportunity to offer many stories and approaches as a “menu” of coping possibilities. Choose the ones that intrigue or encourage you and ignore the rest—including this one.
I am not religious in terms of churchy or denominational. But I do have a very strong and lifelong awareness of the fact that God is always present & always loving. Carl Jung’s entry hall had a sign that, translated, means “Bidden or unbidden, God is present here”. That has enormous significance to me. Einstein said, “I want to know God’s thoughts; the rest are details”. These are mentors, role models, heroes—amazing human beings who considered their most significant discoveries to be their understanding of the reality of God’s Presence and the availability of God’s strength, creativity and love in every present moment. We as caregivers are just as heroic and amazing as any scientific genius. We are daily discovering the incredible depth of love as well as the fact of our limitations, where that love often withers and is in danger of dying. We have experienced time and again how we have continued to do what needed doing, despite the fact that in our hearts we have given up. Most of us do know the feeling of ‘just let me die and let somebody else take over all this pain”. Some would accuse us of having a pity party and maybe there’s some truth to that. However, that pity party may just be a wake-up call that we need to change the “rules of the game” and have a different party.
My current game is to ask myself, “what is the truth of this situation—the part of it that reveals some aspect of God’s nature to me?” How close to that nature can I come at this point in my journey? When I can’t approach it, how can I allow God to love me in my imperfection until I can love my husband (or other LO) in his? Usually I can come up with at least one way to be kind that I had not yet thought of and that does not betray my reality of limited resources and healthy boundaries. (A kiss on the forehead in passing, f ex). That plants my flag for “I’m trying to grow through this” instead of “this is so unfair and awful”. As I said, it’s a game I play with myself, not some kind of holier than thou belief that I will always or even often succeed. But those times I do succeed give me strength to keep playing the game. Game Rule 1: acknowledge I am faced with a very hard choice: Pity party or soul’s journey story. Rule 2: refuse to judge myself no matter which choice I make on Rule 1. Rule 3: be quiet inside myself, acknowledge the chaos and pain of my emotions—including the shame and guilt when and if they are present—then experience (or imagine) that Father/Mother God is present here and now and is loving me and accepting me so unconditionally that I can hardly take it all in. Rule 4: be grateful that blame is irrelevant, and let it go. Rule 5: find some small kindness we can do for ourselves and one we can do for our other. Do both. This puts me back on a positive path. Also changes LO’s mode.
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DizzyBritches Aug 2019
I’m replying so that I can come back to your post, Linda. There’s a lot to unpack for me, but it was beautiful.
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I know exactly your situation as I live it. Often womder if he is slipping or simply not capable. Dies not want to discuss things too long as it is overwhelming. Talking seems like too much stimulation.
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You are not alone, those circumstances may be different. You are certainly being put to the test. I too am a generous caregiver... beyond kind, considerate...etc. My husbands had a personality/mood disorder that has evolved into frontal temporal dementia... which is, I've been told, the hardest on the caregiver. The memories are intact, but the social screens are not. Long gone is any kind of concern or empathy for me, it's all about him. Then, he got major infection, fell, broke his neck in several places... and I got to deal with some real dysfunction in the healthcare system and a 24/7 charge on my hands. Bit by bit, I've been setting things up to be able to bring back time for myself and my needs and get it ain't going to come from him. I understand exhaustion at a whole new level. I suggest, keep telling the truth to yourself, identify what needs you have and other resources for validation and fulfillment. For myself, my unconditional caring for my husband, despite the nothing coming back, is about who I am, not who he is.
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"In sickness and in health" means he vowed to support you too and he is not doing that at all by pushing you and forcing you to make decisions you were not ready for. I do agree though that we can't ask people to be who they're not though so he'll probably never be the empathetic husband who sits and mourns with you so waiting for that to happen will only result in disappointment. I don't want to sound like male bashing here, but my experience, they tend to be a little needy when your attention is focused on others. He could be lashing out of jealousy and doing it very poorly. Is there any chance you can get some respite help and the two of you get away together and try and rekindle your relationship? Just a thought.
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Caring RN....you have been through it, alright!! I understand your disappointment and even anger at your husband for his thoughtless behavior. I would say he doesn't have a lot of empathy. That is hard to take isn't it. The very people we think should support us don't...and it feels awful.
I don't blame you for not wanting to care for him if he should become frail. However, if you are going to continue living together and not divorce, then it would make sense to both go to a marriage counselor. Have you considered this? These feelings need airing and discussion with the aid of a professional.
You sound depressed. Are you on an antidepressant? Feelings of wanting to die are certainly signs. I felt that way at one point caring for my dad when it was too much with his emotions and abusive behavior. I didn't care if I woke up the next day, even though I was not going to take my life. I just didn't care a fig. So if you do outlive your husband, have the fortitude to admit him to a facility that suits his needs and just visit. Don't be the 24/7 caregiver. You need a major break.
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If you are having a 'pity party' I don't know who deserves it more - I hope you put your feet up & enjoy it - you certainly have done your time in the trenches - remember you are older at each person you helped & can't do all you used to

Tell hubby straight out he has to help you more while you heal otherwise you'll push yourself too much too soon & that may cause permanent damage to that ankle which will hinder you in the future
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Yes I’m I am in a sad situation. My lo is the 4 family terminally ill member I’ve cared for. He’s not just ugly to me but my kids n grandkids. Verbally abusive n very scary. They were helping me but n now I’m by myself. They moved out. All I know is I will never marry again.
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Kimberlyn Aug 2019
Sadgirl,

I hear you. So sad that our lo are unable to understand their memory is all we'll have left and to control themselves in front of the children NOW! Too late, my grown sons both lost respect for their father, before his terminal diagnosis 6 years ago. I, too, plan to never marry again. God bless you in your journey toward a better life. :-)
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@CaringRN Cutting to the chase: You are done. It is someone else’s turn. Everyone else expects the strong ones to come to the rescue as they make excuses, retreat and criticize. Husband needs a huge reality pill and an apology which you’ll likely never get. Take care of you. If you don’t no one else will. Best wishes to you.
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CaringRN; You have been through it and then some. I am praying for you.
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