Have no where to go with my feelings so
Very long post.
I have been wanting to write this message for a long time but always get stuck with wondering how best to describe my situation. Saying up front, there is no answer for my issues with my DH, I just think it would be helpful to know if anyone else has had experience with this, or even wondering if I am making sense. But I will give this my best shot to explain, here goes…
We are 7 long years into this journey. My DH is not that bad, but everything that is bad is magnified 1000 fold. Things anger me to the core. I feel like I should be so much better at dealing with things then I am. I’m just not. If anyone looks up or remembers my last post, I still have to deal with the online chat sites every now and again, but the bumpers are on that issue and work well for the most part.
My husband was a very driven person (think alpha male) in his life and career. We had a great marriage. Sure, it had its problems, but for the most part we were happy and content. He still functions day to day and can seem semi-normal unless you speak to him at length.
Because of his personality, he was top of his game in his field. It took a team of others around him so he could do what he did on the level he did. Which means that he never balanced a check book, never dealt with cooking, cleaning, shopping, handyman stuff around the house, literally, others did everything, even down to changing our light bulbs. Now that he is retired, it is ME who has to do everything. Everything, period. And I am so so so so resentful. It is starting to effect me physically as I am swallowing a lot of anger on a regular basis. I find myself often wondering, perhaps he is not as bad as I think he is because when you look at the boxes to check for the stages (referring to Tam Cummings DBAT), he can’t do a lot of them. But he can’t do a lot of them because he never did. I will cry me a river when he leaves me, I worry about how I will be able to cope then, so I’m not looking for this to speed up, I just want a reprieve. More then a trip away. More then what a housekeeper can do. We have a neighbor coming over for dinner tonight, I will do everything but it would be really be nice if he were capable of getting him a drink. If he attempts it, he won’t know where the glasses are, won’t know how to get the ice… you get my point. I will do it all without any expectations from him. Does anyone have any tidbit to help me or even if to say you know the personality and your opinion? I am stifled, trapped, angry and sad all wrapped up in one bundle of nerves. Also, I hide it well. Not sure if that is a good thing or a bad thing.
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DH is also a traditional male, and I performed nearly all of the duties around the house. By the time we met and married, he was unable physically to keep up with car maintenance, outdoor chores, and nearly all of the traditionally male responsibilities. So they all fell on me, too.
I have had to learn to prioritize and to lower my expectations greatly. He is now is late Stage 7 and lives in an ALF. If I have food in the refrigerator, clean clothes to wear, the bills are paid, and the car is running, I consider it a win. Everything else is gravy.
Caregiver burnout is real. And at 7 years in, you have been his caregiver for a long time. I was DH's caregiver for about 8 years before we even had a diagnosis. When we did get the ALZ diagnosis, it stunned me. I was the frog who was boiled slowly. So I truly get it. Anger, resentment, grief over the cascading small losses, physical, emotional, and mental fatigue, and a sense of helplessness and hopelessness are all things most caregivers have felt along the way. And all these things take a toll on not just your mind, but your body, too.
You say you hide your emotions well, but you have to make space to let them out and process them in a healthy way. While I never found a therapist to work with, many people here have been helped that way. Support groups, whether virtual or in person can help. This forum has been a real lifesaver for many of us. Take care of yourself physically: eat right, exercise, rest, and tend to your medical needs. You can't let this disease claim two victims.
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I had a business that I ran and my wife took care of most of the house stuff. She was diagnosed in 2016 and it has been a slow steady decline. I started taking care of the bills then cooking then cleaning. Our marriage wasn't great. As time passed I was doing more and more. Helping her get the right clothes and get a shower. I finally had to sell the business to be able to be home with here. A year later she had a stroke and now is in MC. I still feel a lot of resentment over this, all the things I gave up to care for someone that had done things in the past that showed lack of respect or love. I find that my world became smaller caring for her and now that she is in MC it is staying small. I know I need to get out more but I just don't feel like it.
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I understand. DW stands for Dimwit sometimes, although I don't share that thought. Our LOs weren't perfect before AD, and we are not perfect caregivers. Anger is part of it. My wife did some things that would make the preacher curse, and so did I. I guess they call that married life.
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we understand how you feel. You are angry at the disease not your LO. You are sad at what you have lost because of the disease. It is going to get much worse. Maybe it’s time to consider memory care. Many facilities will accept your LO for a month so you get rest. If it goes well you can decide then if a permanent placement makes sense. Also do a search for the post “The Cavalry is Not Coming” which puts a caregiver’s situation in perspective. Also call your primary doctor and get a referral to a Geriatric Psychiatrist for you to see. Your mental and physical health is in jeopardy unless you get help. Hugs
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I'm in a similar position, but arrived by a different route. My husband did so much before dementia. He was self employed as a carpenter/handyman. I worked full-time and provided most of our income. He shopped, cooked, clean, took care of the house, yard and cars. And did the same for his mother next door. His mother is gone, but I've had to take over everything at our house. He sits in his chair, watching TV as I scurry around. I could be washing dishes, cleaning gutters, pulling the toilet he clogged…he won't move. Occasionally I'll hear, "Can I help?" It makes me want to scream. I don't have any answers, I wish I did, because I feel the same way you do.
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For me, I think acceptance has been one of the hardest internal psychological parts of this journey. My DH didn't ask or want to have a debilitating brain disease and I didn't expect or want to become a caregiver. But that's what happened. I have had HUGE bouts of resentment but I learned here to remember that he is the one with the disease and that I have choices. I chose to stay and be a caregiver and I have had to wrap my head around all the nuances of what comes with that decision. I have struggled with this on and off throughout these 4 years of caregiving and have just begun to find "meaning" in this path forward.
I have also taken the path of Bill_2001 who wrote "The Calvary is Not Coming." That means I am the sole caregiver and I am in charge. I have out-sourced everything that I can afford to outsource - housekeeping, home maintenance, and I'm about to look into help with cooking. Early on I had to take over finances and got help from a financial advisor and a CELA. We are lucky in that we have put plans in place to have the financial resources to possibly weather this, although late at night I still worry a lot about that. I got a therapist to help me cope and I've made a friend here on the boards and we chat and even zoom occasionally. Family is spread far and wide and is not helpful. Friends are supportive on the phone but rarely offer concrete help. Some days are hard, some days are OK. No day is easy.
Strangely, the thing that broke me into pieces was the TV remote. My DH was the techie of the house and now he can't manage the remote. At first it was maddening, then I got resentful, and angry, then I tried to teach him to use it again, then I got sad about it all, and now I just accept that he can't manage it and just try to cheerfully change the channel when needed. I went through all those stages of grief just because of the remote. Each time I touch that thing now, I recognize the enormity of what is happening. It's a talisman of sorts now, some days OK, some days not, but it is what it is.
No part of this is easy but I draw strength and hope from those who share their experiences here. A million thanks to you all.
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Hugs to you! Thank You so much all of you for sharing your thoughts and feelings. I can relate to all that is said and felt. I am 10+ years into this and the days are long and void of meaningful conversation and activities.
My faith helps sustains me. The attitude of its " just good enough" helps me cope with my perfectionism. I am try to be grateful for the small things and Blessings in my life. I walk every day if I can outside if not on the treadmill. My faithful pup gives me joy and yes companionship. He is an empathic ear and sits next to me while I cry. This site is one of the Blessings in my life.
Again thank you for sharing. Hugs Hugs to all of you.
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Well said. Thanks
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it’s a cruel disease, the feeling of helplessness, vulnerability, sadness, bitterness, despondency and anger rage in all of us, you are not alone and we all care. With no one to discuss decisions with, we have to make them alone and these take their emotional toll on us. For the first time in 50 years I have had to sell a house and buy another deal with slippery real estate dealers, the banks, insurance companies etc it was so very scary and exhausting, the responsibility weighed heavily and I was angry. It didn’t finish there, then it was a new stove, a new hot water system, fixing solar panels, a garage roller door, the list went on and on I was exhausted and angry. But still it kept going fence mending, as you said light bulb changing, computer connections it was awful, decisions, decisions and yet more decisions. I would weep all day and night. Sleep deprived, decisions that had to be made, trading in our old car and buying a new one, I had never done any of this and I was resentful and could hardly believe that this was happening and that I could do this.
Then one day I read, through this forum, ‘The Cavalry Is NOT Coming’ it’s worth reading; It gave me courage and strength. I looked back at what I’d done and how I’d managed to look after my DH and myself. I no longer expect anything from anyone I’ve found doctors and other organisations are quite ignorant of this debilitating disease. I play uplifting music, I garden and watch the plants flourish, i got a little puppy that I can nurture and love. We joined Sailability a sailing group for damaged people, and I am careful who we choose to mix with.
My heart goes out to you, don’t give up, you are doing a great job. Cry and weep and vent in this forum it’s just the best.9 -
I too am feeling down, lonely and angry at the whole situation. I had to give up my job to care for DH and while work was never easy, it gave me a sense of purpose and I had (what I thought were) very good friends there. Boy did I learn the hard way that caregiving is an exercise in isolation and patience. My friends for the most part have dropped off the face of the earth. DH’s family isn’t local and don’t really want to hear how he’s doing. And I am doing everything: it’s me, myself and I here. I’ve never been a patient person, and this is highlighting that fact. My nerves are shot, and I’m basically paralyzed when it comes to making things better. Hopefully one of these days I’ll feel motivated enough to try harder to get out of this rut. Thank you all for your candor, it’s my therapy and I appreciate it so much!
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I’m having a lot of trouble accepting that my DH is not the person he was. I try not to argue with him when he doesn’t believe when I tell him something or because he doesn’t remember a past event or activity but sometimes I think I can use logic with him but that leads to him getting angry and saying I have a bad attitude and am not nice to him. He has been diagnosed with mild now advanced cognitive decline but I know this has advanced especially his short term memory Because of macular degeneration he can’t see to use the computer or tv remotes so he is constantly interrupting and calling me to help him so whatever chores, errands, housecleaning, cooking, bill paying, etc I am trying to do don’t get done on time. I don’t want to be complaining all the time but this is very hard and if I just try to do whatever he wants whenever he wants it to try to keep him happy it works but I have trouble doing that constantly I’m going to work harder on acceptance and I am constantly telling myself to be kind and patient but if I make one misstep it throws him off and he can say hurtful things to me. I know he can’t help how he is and that he doesn’t see the same reality that I do and I will contact to work on myself because I realize this will go downhill It helps me to read that others feel what I feel Thank you all for sharing
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Dcostonis, I could have written your post, especially the part that says if I do whatever he wants whenever he wants, he’s fine. But that’s impossible to do all the time. It’s so frustrating when you have other important things to do. Yesterday I burst into tears after he interrupted me for the 4th time during and after my shower/blow dry to show me something once again…I said through my tears “can I have just two more minutes” and then felt awful immediately after. 😞
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My wife is in MC now but I did pretty good at the questions and not knowing how to do something on the outside but I would get tore up on the inside. I rarely handled accusations very good and she got upset but didn't remember why for very long. I think it is probably normal to lash out sometimes but if they don't remember it then really no harm done (except to us because of feeling guilty). It is like most things, all we can do is our best and try to do better after we make mistakes. Now that she is in MC (which is another source of feeling guilty) the accusations have not stopped but since I am not with her constantly (I see her every day) they are easier to deal with and ignore. This whole experience sucks and I think I have made it worse for myself by feeling guilty for my feeling even though for the most part there was nothing else I could do.
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Your response to my post is so helpful and appreciated. You put everything into words that I feel but struggle to write…”I was the frog who boiled slowly… I totally get it. It’s an awful journey, slow moving and maddening at the same time. Best of luck to you and thank you for your insight.
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I’m so sorry to read your response to my post and understand all you are going through. It is so darn hard. I hate that I find comfort in not being alone through another persons’ journey which is not pleasant. Thanks for responding, I hope you can enlarge your circle to a healthier environment for you,
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What a good perspective, none of us are perfect going into this or perfect in their caregiving. So sorry, I know it’s hard. Thank you for responding.
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Biggles, you are writing about exactly how I feel. It’s all on us. I read your response earlier before I had time to respond, and I also went back and re-read “The Calvary is Not Coming”. It absolutely changed my perspective. I read it before but didn’t get the take from it that I got reading it the second time. Perhaps I wasn’t ready to take in it’s message the first time around. It has helped so thank you for suggesting it. Sorry for all you are going through too, but I guess it helps to know that our feelings are normal, no matter how unwanted and uncomfortable they are.
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Camp… thank you for responding to my post. I feel exactly as you do. My nerves are frayed too. Perhaps it helps that we are not alone, I don’t know but I do appreciate your respond and am sending you hugs.
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SDaniel, thank you for your response. You are right, you and another posted suggest I read. “The Calvary is not Coming” and I did. It gave me a huge perspective shift so thank you, accepting it all is the hardest part. I still feel like it is way too early to put my DHin memory care because he still functions so well in many ways. We also have a geriatric psych and I must admit that so far, I haven’t gotten much help from him. They know so little about this disease and it’s all a guessing game on what works. Thank you for responding, you always give me insightful advice.
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This all so resonates with me. I wish there were a magical answer as to how to cope with the everday challenges. Each day is always interesting, but why not throw in that inevitable unknown that will happen! DH has always been difficult, self centered but sometimes I was able to “get thru to to him” and things were hopeful. But now oh boy let’s see there is NO being logical no trying to explain just him being the person he always was but 10 fold. Hopefully we will all reach that place of acceptance and coping as best we can
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Dear 4MY. You are definitely not alone. Anger comes with the caregiver's role. Anger, bitterness, resentment are pretty much imbedded in the lives of AZ caregivers. It is important to realize that the anger is over the situation and the disease. Our loved ones cannot help what is happening to them so I try to keep this in mind. Nevertheless, it is our lives that are ticking away, our abilities to go somewhere alone or have lunch with someone are blocked.
I was on antidepressants for the past year. I felt like a caged bird. I, too, had to take on ALL of the previous chores that my DH used to do so well. My DH is now in MC and I am so grateful for the peace and freedom I now have. However, I am paying a price of guilt and feeling like I failed him as he asks to go home every time I see him. Try doing a one month respite care arrangement and see if that helps you and his attitude. My DH is on Seraquel for tamping down him agitation and it works wonders.
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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