I want to be finished
Today I went to a funeral of my friend's mother. I was jealous. JEALOUS! How horrible am I? I think very. She lost her dad three years ago. Her mom wasn't all that sick, just unlucky with a case of pneumonia. I lost my mom over 10 years ago (to cancer) and have been dealing with my dad's illness for close to 8 years now. I am just so very tired of one day being good and 4 being bad. I am tired of the aides, the doctors, the stress, and the frustration. I feel like he will just be here forever. I never thought he would make it to 94 and now he is close to 95 years old. I am old also. I just feel like I'm losing myself and my life. I thought I would be getting to do all the wonderful things I and my husband worked so long for. I see it slipping through my fingers.
Sorry, just need to rant. I feel I will never be free. I will die before him.
Comments
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Malka, it's okay to say it here. It's why they call pneumonia "the old man's friend." It's not horrible, I've had the same feelings. It's not horrible to wish for his release from suffering--and yours.
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Please don't be so hard on yourself. This disease is so awful to watch. Why would we not want our LO to be at peace. Why would we not want to be at peace and to have our lives back. My prayers are with you.
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Hi, Malka. You're not a horrible person. Anyone who has ever helped a loved one endure a horrible terminal illness wants it "to be over." You're not wishing for the demise of your loved one but rather wishing for freedom from all the suffering and exhaustion you are all enduring. Eight years is a very long time. I've been caring for my mom for three years. Not a day goes by when I don't wish for the end of the stress, the exhaustion, the frustration. The other day I received a notice from Medicare that they had rejected an ER bill when my mom fell and needed stitches on her head. Not only that but the hospital billed Medicare for 4 ER visits and 4 head-suturing sessions! What the heck? As I read this all I could think was "when does it end? when will the day come when I am not spending hours and days on the phone straightening out nonsensical medical bills?" It may seem silly but the Medicare notice plunged me into a depressed funk for the rest of the weekend. I too feel like my life is slipping away, and I often wonder when I will be free.
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Malka, you are definitely not alone. I feel exactly the same as you, like I will never be FREE! My mom is 85 & in late stage AD. Every morning I hope she doesn’t wake up, but she always does and the day of misery starts. I don’t understand how a brain so damaged by this awful disease can keep the body alive for SO long. It’s absolute torture not only for them but also for us!!! In this day of modern medicine with all the advancements they’ve made to treat/cure other diseases they can’t find a cure for this one. They just prescribe sedative after sedative, anti psychotic drugs, sleeping drugs, etc …Legalized euthanasia needs to be the “ treatment” for this because obviously nothing else can be done to slow or stop this from reducing our LO to a sedated, diapered empty shell. In my opinion it’s absolutely cruel to keep them alive year after year like this.
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Some people will say that we need to enjoy this time with our LO. Well when they can’t even form a sentence to have a conversation with you, can’t walk or do ANYTHING for themselves, it’s kind of hard to “ enjoy the time with them”.
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Malka, I was where you are. I also shared my jealousy with this support system. Wanting this to be over is natural. Glad you feel safe to share all the ugliness, it’s the only way to survive, getting our true feelings out. You’re not a horrible person and deserve to do the things you’d like with your husband. I hope you have some respite relief. There are facilities that will take a LO short term so you can get away. Our hospice had a respite benefit for 5 days that would be paid by them (Medicare). If I paid for one day in between I could get another 5 days. I thought I’d be in heaven with 10 days away. I never got the chance but if your dads on hospice or qualifies, maybe yours would have an option like that too. Try to get some of your life back as soon as you can.
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This hits home with me, tragically. I love my mother dearly, but I I can feel my compassion being forced aside due to selfish concerns like the amount of time and money it will take to provide care.9
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I try to remind myself that the last thing my dear partner would want, if in her right mind, is for me to be burdened with her care. She as much as said so today. Brought tears to my eyes. She was worried about me and apologized for being a burden.
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I can do relate to this post too! You are not a horrible person. I definitely have the same feelings! “Please let her die and not suffer anymore!” It is so difficult to deal with and I feel like it’s never going to end! And my mom is only 87! Feels like she could live forever! And we’re making each other miserable!
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Me too! My mom is only 83 yrs old but acts like she is 60 yrs old (other times 3 yrs old) I love her dearly, but I too get very tired and start to feel there is no end and no life for me as well. My mom at times will say " Why am I here why do I keep existing; I don't want to be here anymore." She wants to be with my father who passed away 7 years ago - that I believed triggered her Alzheimer to kick in. When she says these things with sadness in her face, I feel guilty of my thoughts. My mom and I have always had a close relationship and we still do when she has one of her good days. I am still young and single, so this is my priority to take care of my mom and not put the time for myself in dating. My mom is 83 in good health except for her ML - she too can't follow a conversation, movie story, or understand the news what is happening in the world. Trying to explain I can see she no longer is interested in. It's just simply exhausting all around. I have woken up in the morning and not hearing any noise from my mom, I tell myself "This is it she died in her sleep", with some sadness in my heart but then I hear her and know she is still with me. Alzheimer sucks. I hope I don't go through this.
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You are not horrible, and definitely not alone in feeling that way. I hope you can find ways to take some time for yourself. I have started to and it’s helping. My LO (mom) doesn’t like it right now, but it’s the only way I can see caring for her without being consumed with resentment and guilt.
are there others - neighbors, hospice care, family - who can step in so you can get some breaks?
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Malka, I am so sorry that you are going through this. My father is well into the moderate stage of Alzheimers, only a few points away from the severe stage on the cognitive tests. My mother has some undiagnosed dementia, but not nearly as bad as my dad's. Regardless, the family doctor has determined that neither should make financial or medical decisions. Both of them are now in an assisted living facility, which they love. I couldn't take care of them myself for various reasons, and Mom was not able to take care of Dad. Dad relies on me more and more, which is difficult because of things that I went through when I was a young child, and when my parents were also very young. I retired two years ago, and my own husband is not as active as he once was and also needs my care. I have wanted it all to be over many times. One thing that I do is schedule times for myself. I journal in the evening because I enjoy writing. During the day, I take breaks to play with and train my dogs. Once a month, my husband and I get away for three days, usually camping, just to have a break. Even with that, it is still difficult. I tried an Alzheimer's support group, but the one in my area is not all that good, and the leader tried to take advantage of my situation by encouraging me to let her brokerage firm handle all my parents' assets. I already had someone helping me in that area, so I just stepped away from that situation. To find another group, I would have to go about 60 miles away. I also work with a therapist. Medicare pays for the visits, and I find them very helpful. I also have friends at church who have been through similar experiences, and it helps talking to them. One of the most important pieces of advice that I have received is to take care of myself because, if I don't, I won't have the energy to take care of my parents.
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Just another voice adding on about the complex emotions. I was never close to my mom, we're apart in age by four decades and I'm lately doubting if I ever even really knew depending on when her early onset started.
I have had many older acquaintances who have lost their mom come up to me and say "you're so lucky to have your mom still, even if there's hardships now." Or even "you'll miss her when she's gone." I just want to hold those people and tell them to kindly shut up. I was seven years old when I realized my mom would most likely die when I was still young so I'm not really all that troubled by it.
All my friends are starting families, buying their first houses, going to grad school, establishing their careers, etc. And I'm stuck here in my early 30s, living in my bigot father's house caring for my mom while my brain is screaming at me to stop. It's just too much.
Hang in there Malka. You're not going through this alone. We're all here for you.
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Don't apologize for ranting. We all need to do it in our situation. I am very glad to have read your post and the responses. I often feel the same way and sometimes feel very guilty about it. It is good to hear that I am not alone with these feelings. Dementia crept into our lives roughly 5 years ago, and for the past 3 years I've been the primary caregiver for my mother. For the past 2 and half years she has been living with me and my family. When I wake her up in the morning, sometimes she will not wake up right away and I will think she is not going to because she finally moved on, and I feel a little relief. Then she wakes up and I'm a little disappointed. Then the guilt hits me for feeling that way.
I'm just so tired of it all. The bill handling, the medical visits, trying to explain to her or divert the questions of why she can't use the stove or drive anymore, her spitting food onto the table, the interrupted work days when our hired caregiver can't come over and I have to try to work and take care of her, the caregiving taking my time and attention away from my wife and kids, stressing about making sure she will be cared for when we have to go away, waking her up in the middle of the night to make her go to the bathroom so the Depends don't overload and leak, cleaning up the occasional toilet disaster... All this and more and her thinking nothing is wrong with her. "Why does that doctor's paper say I have dementia? That's a mistake, I don't have dementia!" :-(
And then I hear about a friend's mom or dad passing away. Someone who was healthy and/or mentally sound and I feel jealous. I often tell people I would prefer mom had some bad physical illness instead of dementia. At least she would be aware of her condition and capable of making her own choices.
You are not alone. I, too, want to be finished....
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I’m new here and it’s my first time posting. Thank you so much for sharing. Reading this post and comments I don’t feel so alone in my thinking. I was never close to my Mother growing up. She was always self centered and I never felt love from her. My husband passed away in 2018 and I moved in with Mother to take care of her. It was not a good idea. Her Alzheimer’s has progressed and I have feelings of guilt because I am at the point of not being able to do this anymore. I’ve taken the first steps toward getting her placed in memory care. I want my life back. I’m 55 years old and I feel like this is my time but I struggle with feeling like I shouldn’t be feeling that way. Thanks for listening and sharing your feelings. You have no idea how much that single post has helped me today.
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Thank you for sharing everyone. All of your comments have made me feel a little better as I am in the same boat. Sending you all hugs and healing light as you go through this journey.
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Oh, I can relate. Caring for a LO with Alzheimer's is the most difficult thing I've ever dealt with in my life. My mother consumes so much of my life, time, energy, I feel like she is the only thing my sister and I have talked about for the last 3 years. I have found myself wondering how long this will last and also facing the harsh reality that it is only going to get worst with this being a progressive disease.
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Thank you all for your rants. Please come anytime to share them with me. I feel so horrible. I also think "oh, his stomach hurts, maybe he is having a heart attack". I pray that a call will come saying he has died in his sleep. This morning he didn't remember my name. His aide wasn't around to prompt him with my name. It just goes on and on.
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I’m new to forums.. glad I’m not the only one who wishes my mom would die.. she was “officially” diagnosed 3 years ago after two years of trying to convince her quack doctor that her mental changes weren’t just a sign of aging.. she is 86 and otherwise healthy, so I know her body will probably live longer than her mind.. our family has always been close.. I’ve been a paramedic for 35 years so I know what my moms future looks like..I’m mad.. I’m frustrated.. since 2013.. I have worked full-time and been primary caregiver for my father-in-law who lived for 3 years with a heart pump, he died and two months later my 48 yr old husband was diagnosed with work related pancreatic cancer and died after two years of doctors appointments and chemo, three months after the funeral my dad was diagnosed with Leukemia so again I became primary caregiver AGAIN.. Dad lived two years.. I’m tired.. I’m mad.. my daughter graduated high school and moved out the next day.. I feel like she couldn’t wait to move out because she was tired of it as well.. she has refused to come visit mom because she can’t watch another person she loves die a slow death.. I could go on and on about why I wish my mom would die.. not because I hate her but because I love her.. my mom was has a masters degree in library science.. she loved to read, do crossword puzzles and now she can’t write out a simple shopping list or read a book.. she is legally deaf, so when I read to her, I know she can’t hear me.. she played the piano/organ and I play for her knowing she can’t hear me.. she loved to sing but can’t even read the words to hymns at church.. I pray daily that God will take her home.. because I love her.. thanks for letting me vent5
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I make the same prayer every night before I go to bed. I don't tell anyone for fear that they will think I am the worst person in the world. I see my friends around me that have been in the same situation, but one by one their parents have passed away. I am all alone in my situation. All I keep hearing in my head is the last line of the Farmer in the Dell. The cheese stands alone.
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I have the same feelings and want to validate yours. Every single person on this thread does too. You are compassionate, not evil, as are we all, or else we wouldn't be posting here. I, too, fear that i will die first -- from stress, depression, exhaustion, & increasing isolation bc others just dont get it. ( And im not that pleasant to be around all the time now.)
What an important topic you opened for us all. I wil be sticking around -- this is a safe place to share the really hard stuff.
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Thank you. I have been caring for my father since my mother passed away. It wasn't bad at first, but 11 years is such a long time. I never thought it would be this long. Since I wrote that post, which wasn't that long ago, my dad has forgotten my name, didn't know his apartment was his, doesn't know he has grandchildren or great grandchildren. Visiting him is just a long monologue that I speak and half the time he can't keep his eyes open. I am sad that there has to be this community, but I am happy it is here to get information, ask questions, and just to vent. God bless us all.
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I also feel the same way, and it is heartbeaking to feel but as others have stated it is not evil.
My mother's mom was diagnosed at 65 with ALZ and put in a home at 67, she died at 68.
My mother went through extreme stress and trauma from seeing her mom with it, and always told me that if she got it she would want to die right away.
After I put her in MC, I found letters she had written that she stated how she would like to be treated if she got this, and that she would want to be gone quickly.
She knew it was happening and was powerless to do anything about it, and now she rots away in MC while still on all of her meds to keep her going strong when I wish I could just take her off of them and hope she have a heart attack and just pass.
I know in my heart that is what she would want, and I used to feel guilty about it but after 3+ years of dealing with it and not being able to have an actual conversation of any sort with her and all of the things I have had to see like a closet full of clothes with urine and feces for months and all of the anger she had in the middle stage, etc. it really is so hard to not feel like if she wanted it over, why would it be bad if it was and she could be at peace?
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I'm so sorry. I know my father wants to go. He tells me so every day. He doesn't remember much of anything, and sadly I think he doesn't even remember my mom anymore. She passed away over a decade ago. I wish that their was PAS for people with dementia. I am sure some very smart people could figure it out.
My dad is 95 and I have started to whittle away at all the medications that he is on. They still had my dad on cholesterol medication! Maybe you can help your mom that way?
Feel free to vent anytime. I feel the same way. You are not alone.
M
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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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