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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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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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Very well said, lealonnie
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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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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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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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It is not self-pity to be having to face reality.
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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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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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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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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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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 have said it before and will say it again. No matter what the relationships were that you once had, when this dementia hits, these people are gone gone gone and are no longer the same person. I don't care why they do what they do - they are doing it and their words and behaviors can literally destroy someone. Face the fact that not everyone is cut out to be a caretaker. We can't all face this and let it roll off us like water. Do what we can but there comes a point when we are being very negatively impacted and destroyed, then we must be strong and stop it once and for all. Often that means placement. Do not allow anyone, regardless of why, do this to you. You do NOT deserve it. We must find a way and it can be done to protect yourself. No if's, and's, or but's.
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Kimberlyn Aug 2019
Hello Riley,

Thank you for your post, it really helped. I've worked hard to distance myself from my Narc Mom and Flying Monkey Dad and yet still be available for grocery shopping, dr visits, etc. In 2017, I took on, what I thought was going to be very temporary, as Mom's caregiver after she broke her hip. Amazingly, she decided being pampered is better than being independent. She's enjoying it. So gross. I wiped and diapered her 3X a day for almost a year, did every dr visit, groceries, dinners...! Fast forward, hired 2 caregivers and still she is not satisfied. My father, bless him, fetches and carries for her all day, bent over, using a food trolly cart as a walker, 138 lbs. 6'1" with CLL (leukemia). Never will even discuss AL, NH... Complete closed system and I'm BAD for not keeping them in the way they are accustomed. Wow. They have people coming in their home to help them.

I guess what hurts now, other than watching my dear father in such physical agony, is that I made it clear to them this was not good for me. They did not care. I became so depressed last December, I lost 20 lbs in one month. I was begging for an out. I had to not allow this to continue. I've been off Mom wipe ass duty completely since June (she has 2 caregivers!) and I'm enjoying life again. They never really understood what it cost me. But like all good Narcs, it never was about me. Thanks again for your post!

~Kimberlyn
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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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