I feel so guilty about the things that I think about my mom's dementia. Can anyone relate?

Crafty, your post made me cry, it is so much like my grandma.

Please do not beat yourself up for wanting her freed from this living.
h€[[. It only makes you an obviously loving daughter to want her released.

For whatever reason, she is going through this and her family is being drug right along.

Unless you have dealt with someone that has the lights on but there is nobody home, it is hard to understand the desperation you feel for the situation. There is no engaging them in any way, shape or form. There is no communication possible whatsoever, nobody's home. (I am saying this for all the posters that have suggested engagement as a way to cope, sorry guys, no offense intended. It is just not possible, she is a shell.)

Crafty, do only what you can, delegate when possible and be thankful that she is not suffering.

You have been dealing with a heart breaking situation for a long time, to want it to be over is okay and understandable. Be kind and forgiving to yourself.

Hugs for all you do, you are a daughter that any mom would be proud of.

Just love her. Try to play games, even if she can't do more than push checkers or dominos around.
Read to her. Bring old family movies on DVD, pictures of her as a child. Follow her eyes, you might be surprised.
Pray for God's will for her!


Hope that helps.
Guilt is a very normal emotion. When my Mom died, my sister's overwhelming emotion was relief.
I am a retired Professional Counselor. I totally understood.

Feeling guilty because of thoughts is like a demon to your soul, to your very being. I lived with that feeling for a while-guilt, confusion, helplessness, a boatload of anxiety, etc.  Thoughts are just that. Thoughts. We all have them, but that does not define who we are unless we dwell on them or act on them. I wish you well. Take it easy on yourself.

Please realize that your feelings are normal.

My father died in 1974 with Mesothelioma. It is one of the most horrible deaths. Daddy just died by inches. He went from 150 pounds to maybe 75. The cancer invaded his bones and brain and it was so sad. We didn't have Hospice then as it was just coming into the U.S. I did manage with help to keep him at home. Two years ago one of my good friends and co-workers died with this same terrible cancer he was only 57 (my kids age). I was over there two to three times a week helping him and his wife. It was like loosing Daddy all over again. I am 84 and have seen a lot of my friends and relatives die. One was a niece, she was only barely 53.

Personally, I used to pray for Daddy to go. Hospice tells us that it is OK to tell our loved ones that it is OK to let go, that everything is taken care of. My co-worker was worried about his wife, Hospice told her to tell him she was going to be ok and he could let go. I assured him that what he was concerned about was taken care of. It was too, by the way.

Has your mother left any instructions what how she wants her end of life to be handled? Like, feeding tube, a DNR, etc.

Please don't feel guilty, You have nothing to feel guilty about. None of us want our loved ones to suffer. You believe this life isn't all there is, that should comfort you. Just before my mother died, loved ones who had passed on came to talk to her. I didn't believe then, but I do now.

My Mom also has advanced dementia just turned 77 in NH. Hospice has been involved for 2 months now. I also pray for the end to happen soon as she did not want to exist like this. I try to just remember her as she was so independent and always caring for others. I know when she does pass she will be in a better place.

I've come to realize...and I am lucky considering the level of functioning compared to you and others...that this is the new normal, no day will be the same (unless we're just lucky), to be prepared, appreciative. But I have learned there are all kinds of fatigue, mental among them...we feel a sense of responsibility...so for some of us it turns to anxiousness, and for some of us anger and frustration. Tomorrow is another day...so make a list of what you have to do, prioritize what is most important, do what you can, and the rest will wait. And for sure schedule some time for you, if you can. You are NOT bad or selfish. And it is also hard to watch someone you knew as fully functioning not be. You might feel better by checking out a support group sponsored by a local Alzheimer's Assn.

Not at all! Seeing a loved one in that state is hard on everyone, my father who has dementia is in what I would consider stage six with some of 5 thrown in. My prayers are for him not to suffer for a prolonged period for both of us. I took his care on willingly and am glad I did, however at times it (him)drives me absolutely nuts. This makes us human. The best to you and your mom.

Oh my dear I feel your pain. My mother had dementia and was dying of cancer but miraculously without pain. (I think dementia does something to the brain to prevent or inhibit pain for some people.). I so often prayed for the good Lord to take my mother home to Him. It was agony watching her and trying to help her when nothing I did was ever right. She was so delusional and anxious and refused medication. So, what I am saying is that don’t feel guilty. I spoke to several Catholic priests about it on different occasions and one of them told me something I will never forget, “They become almost unrecognizable.” So true!!! I remember telling my mother that I didn’t know who she was anymore because she was accusing me of things that I never did nor even would think to do. It was pure hell. Surrender your pain and your mother to God. Try to let go now and then and breath, breath, breath deeply. May God bless you!

I can relate as I have felt the same things. I have cared for my 81 year old wife (I am 85) for the past 3 years. She has dementia and just yesterday asked what my name is. We have been married for over 60 years and she doesnt know my name.
I have had the same thoughts that you are having.
Jerry

Absolutely not! You’re neither bad OR selfish!
Saying your mother in such a terrible state of physical and mental decline is extremely difficult on your own well being. It takes a very unselfish person to be so honest with your feelings. You have come to terms with how you are truly feeling, which for a lot of people is very difficult. This does not make you a bad person in any way!

What you are feeling is normal but is probably exacerbated by fatigue. The main thing is to continue to show love and kindness to your loved one. I volunteer at a nursing home, and I firmly believe that, even though those with dementia cannot express it, they do feel the love and kindness. As for the work-related things associated with you mom, try to take a hard look at each one and try to determine if there are some tasks that can be passed off to the nursing and/or administrative team...or dropped altogether. As a son, it was difficult for me to go shopping for bras for my mom, so I know there are some things that need to be done and cannot be done by the staff. Look at each task carefully and determine if it must be done or is something that is not all the important and can be set aside. Try your best to take care of yourself, and that includes going on a vacation, if only for a three-day weekend vacation. Hang in there. You can do this!

Not at all. I moved my parents into a nursing home the end of May. I live an hour’s drive away. My father passed away last month and I’ve noticed my mother’s dementia is getting worse. I think it’s partially the nature of the disease and in part due to the stress of losing her husband of 66 years. She is getting more confused and forgetful, and becomes fixated on certain things. Mom was always good at guilt trips and it’s difficult for me to live my own life. It is an ongoing test of my patience with my mother. I understand how you feel. 💛

Your response comes out of your love for her. I prayed daily that the Lord would release my mother from her suffering. Remember, His will in His time. She is here for a purpose. Pray for the strenght and grace you need until the Lord takes her home. You will be rewarded.

I think you're a wonderful human being.

Morning 🤗❤️Hugs and love goes out to you .. this is not easy to handle ..but trust me when I say All in God’s time , patience is the key on this journey with your mom
i take care of my 91 year old aunt in a NH and my mother-in-law 87 at home and my mom is 87 and dad is 93 they are in good health but still need .. I also volunteer as a patient advocate at another nursing home .. and I can honestly tell you it’s been Gods grace , mercy , love , peace , obedience and patience that’s keeps me going .. His strength renews me each day

turn to God and be thankful for this time with your mom , it may not be the best for her and frustrating for you .. but this is not up to us at all .. it’s all in God’s time let Him give you the peace you need to handle your feelings ❤️

I totally understand where you are coming from. You are not alone! My 61 year old husband died last month from a long, dwindling dementia diagnosis. I am 56, and I can tell you, there were times I didn’t think I would make it. He suffered from terrible behavior problems, got kicked out of nursing homes, and was generally extremely difficult to care for. He was young and still strong and mobile, and that just made it harder.

I loved my husband and cared for him at home as long as possible. I fought for him to have the best care available, once he needed long term care. I thought about him in every spare waking moment. No question that he was my priority.

Having said that, all of the problems he “caused” with his crazy dementia behavior gave me extreme anxiety and eventually it was like PTSD for me. It didn’t take much to set me off, after dealing with one problem after another for years. He wished for his death, and I did too. Not only for him, but for me and our kids, too. I resented the fact that this was consuming my life at this age. Mostly I felt guilty for feeling that way. I felt guilty for not seeing him as often as I should have (he was in a facility that was over 100 miles round trip). I felt guilty for wondering what my life might like once I wasn’t consumed with the constant work, anxiety and stress associated with his care. Not to mention the financial burden!

Now that he’s passed, I’ve been able to grieve his loss. Not the crazy dementia person, but the person he was before. I will always feel a little guilty for not having those thoughts, but I can now see those were just thoughts. A hospice nun told me that I’m human, and most everyone they work feels like that. The fact that I made sure he had the best care he could and kept him home as long as possible is what mattered. God does not judge you for thoughts. You’re doing the best you can, and that’s what matters! Hugs

I've been dealing with my mom's Alzheimer's for 10 years and the last 4 were severe. Over the past year it got really severe. I have to kill myself taking care of her everyday. I dread every day I wake up and having to deal with her--it's a living nightmare. I keep her moving and I even spent $650 on a specialized walker so she can walk in the park everyday..but I've become an emotional wreck. The government does not help me because I'm not eligible for any subsidies. I do not make enough. I just got notification from Obamacare insurance my rates will go up to nearly $900 a month with a $7,000 deductible -- I currently pay $700 a month with $6,890 deductible which means I never see a doctor. My obamacare is so expensive I'm just going to stop having insurance, because it is rapidly draining my life savings--for insurance I never use--but I really don't care because if something happens to me and I end up in the hospital my mom will end up in a nursing home and she will die. NOBODY is going to care for her like I do. She will rapidly decline in a nursing home and die. That's how much an emotional cripple I am over years and years of caring for her. I'm lucky I still have a job..but I can only work a few hours a week, and made possible due to the generosity of a friend who graciously baby sits my mom a few hours a week. I cannot put in more hours because the cost of my mom's care is too expensive. A CNA is about $35 an hour so I would be working for free -- even losing money. and I know they won't care for her like I do.

it is not easy to care for dead weight, and you can also hurt yourself. 70 years old sounds like a more aggressive alzheimer's. If she is that bad off, have you tried hospice? I'm sure it's extremely difficult to get her to the doctor and hospital. Hospice will lend you supplies like a hospital bed, and help with some diapers and wipes. Actually once they are bed ridden their death will approach relatively fast. Meanwhile you can have home health aides come and bathe her, and there will be no shortage of drugs to keep her comfortable.

I agree with Margret McKen below. Do not dwell on these thoughts or the guilt. Move on mentally.

For me, these thoughts are unavoidable. It is simply rational to see loved ones completely removed from their former lives (in my case both mother and husband), and to wish for an end to it. For me but also for them!

But those thoughts to not bring peace or serenity. Nor does guilt.

Better for me to focus on enjoying life in the many ways that are still open to me: reading, walking, exercising, joining friends for coffee, snuggling a warm little dog, Netflix, etc..

Good luck!

I was guardian for a relative with dementia. I know exactly how you feel! This relative would have never wanted to spend her last year the way she did with her last 3 months wasting away in a nursing home.

I spent every day going and sitting with her for several hours, arranging sitters, arranging for whatever doctor's appointments were that week, then coming home and fighting with her insurance and various other agencies. It was soul-sucking. It left me drained and angry and totally unable to enjoy any aspect of my own life. I barely slept, frequently waking multiple times during the night and exchanging texts with her sitter. I myself got very sick with a respiratory infection that lasted over a month.

What you are feeling is perfectly normal. You love her and you want something more and something better for her. Guilt is normal. What you are feeling is ok.

I hear you.
We are told to give our anxieties to the Lord. It is His will that can make a change, that doesn’t mean that we can’t go on bended knee and ask for strength to get through each day.
If you are able, set a time a side to talk with God, be still and allow him to fill you with his love.
I will also pray for you and your Mom.
I’m aware that this is probably the hardest time of your life and I’m sending YOU sincere love and healing
Aprill x

Your feelings are quite normal. It is an overwhelming life event trying to manage your own life let alone manage someone else's. It is a nightmare. I carried guilt, frustration and anger. I did not like these feelings and didn't want them. For me, prayer helped tremenously! I told God I wanted these contrary spirits gone from me. He worked with me until they were gone. Now? I totally enjoy my mom and love mixing it up with her and her little "gang" in Memory Care.

They're soooo bad and hilarious! Mom is feisty and always has something smart to say. I love it. Before, I used to get angry and frustrated at her. God took that away and I learned to enjoy it instead. So does the staff!

The activities director had taken them on an outing to the beach. I'd come into visit and mom was "out in the street partying at the beach." LOL!

Came back the next day and teased them all about being out in the street partying at the beach. They all started laughing so I just kept it up. I was wiping tears from my eyes laughing so hard. They loved it and so did I.

Another time I went in to visit and there was mom and her little gang. I Put my hands on my hips and asked them if they were "bein' havin'" (behaving) They all looked at Mr. Ray, pointed at him and started laughing (they are sooo bad I tell you!) Well, I started laughing too. We were all laughing.

For the record, my mom is in a wheelchair after falling and breaking her hip, needs total hygiene care. She cannot dress or toilet herself. She eats like a horse and able to feed herself. Yes, she talks off the wall. I just lovingly agree with whatever. Did I mention she always has something smart (snarky) to say?

Beat yourself up no more! Your feelings are normal. All caregivers walking this road have felt the same and beyond. Embrace the journey. You have no choice. Enjoy your mom and see/take things from a different angle.

Gone are the anger, frustration, impatience and guilt. I was beating myself up too.

I can relate so much to your feelings. Both of my parents have dementia but they are in their late 80's so much older then your mom. Sometimes clueless relatives are always asking about their health.. how they eat, if they are exercising...see doctors,, all thing related to prolonging life. I get angry when they do this.. not because I want them to be unhealthy or sick.. but I hate the thought of dealing with dementia and all things related to their care for another 10 years of my life.

Like you, secondarily I am concerned for them and they would not want to go on and on living this life and being so helpless and needy.. they used to be so free and adventurous.. now their life is so limited.

You must be pretty young yourself if your mom is only 70.. I do feel guilty about these thoughts ... but they are valid thoughts to have ....please try to not beat yourself up over this.. as I am sure many others in your situation would be thinking these thoughts as well.

I don't think it makes you bad or selfish.. you are entitled to your own life.. this bit about dealing with dementia and parents for years and years.. would lead most to have these thoughts (I would imagine).

((hugs))

I might ask why you can't participate in some things for your own life. Since your mother is being taken care of, is there any reason that you can't do some of the things that you want? Are you too preoccupied with her condition to focus on your own interests? I know it does stay on your mind, even if they are in a facility, receiving good care, but, I'd try to get into some of the things that fulfill you.

If you do feel very anxious about it, I'd ask about some tips from a professional and/medication to help.

I think that it helped me when I accepted that I had no control of my LO's progression and fate. I pray for mercy and that she will not endure much longer. I know she would do the same for me. I haven't felt guilty about it though. It just seems normal and compassionate to want a loved one to be free from such a condition.

There are days when I get entirely frustrated with my mom's mental and physical decline. I feel almost like it's her fault that she can't ambulate well or think for herself, then I catch myself and realize she never intended or anticipated ending up this way. Dementia is a horrible thing - it actually robs you of your loved one before they are physically gone and you can't help longing for the way things used to be. It's painful to watch them struggle and know nothing can be done. My mother asks all the time whether the dementia will "go away." She tells us she misses her parents, her husband, her friends and just doesn't want to be here anymore. I confess, I've wished that for her too. Not that I won't miss her when she does pass, but I know she'll be happier reuniting with all the people she loves and misses and we'll be happier knowing she's safe and finally dementia free.

Nobody, but nobody deserves this disease! I have a friend just diagnosed in June, however it's most likely been brewing for a few years. She has multiple other factors going on, had hip surgery for a " slid out of her wheelchair event" in assisted living. After that hospital stay, her symptoms moved at warp speed to the point she is still in assisted but has hospice. She has no family closer than 2 hrs away and that is a nephew that is power of attorney. He doesn't visit, doesn't check on seasonal clothing needed, buys whatever the administration tells him over the phone. I visit twice a week, have seen some glimmers of my friend briefly, but mostly it is a tormented, suffering person there. She should have gone to a nursing home after that hospital visit but as long as assisted brings in hospice, they can continue to suck her money. I truly believe everything waits for hospice now- washing, bed linens, clothing changes, as I have found her soaked in urine and covered in poop more than once. So yes, I pray every day this will be over for her.

As you can see from responses here this is totally normal thinking. Dementia is a horrible way to end one's life...and even harder on the caregiver imo. My dad wishes to, as he says "cash it in". I wish he could...his life to him is meaningless. I pray for his passing and I also know at the same time it will ease my feelings. Guilt is not a good thing to hang around your neck. Anxiety is not good for your own brain. Can you get to a therapist to get these feelings out and let them help you replace them with other thoughts? Even a couple of sessions might be helpful.

Crafty, try not to dwell on either the thoughts or your guilt feelings about them. None of us want to be in your mother's situation ourselves, or to cope with it either. I would suggest you skip the counsellor option. It just makes you think about it more. There aren't any solutions. Perhaps Catwinter is right - pass the responsibility, for your mother and for your own worries, to God. It's too hard for us little people.

No need to feel guilty: that isn't your mother anymore unfortunately.

My father isn't as far gone, but he has become abusive and vicious --personality changes from vascular dementia (among other things). He is confused.