This is getting hard...

First off..... let me say I think you are a wonderful son!! I'm so glad you found this forum. Kind, caring and experience people here so vent away. I was my Mom's caregiver for 3 years after her stroke (active until the stroke, it provided the threshold for dementia, falls risks and personality changes). The only child, I was working full time in a long term care facility. Mom and I lived together so it was easy for me to use her money to pay for some wonderful assistance to sit with her while I worked. After a while she didn't like them but I told her to put up with it. It was rougher than rough. I was sleep deprived, didn't have any social life left and even my pets suffered from lack of attention. I used to record my vents and listen to the playback somehow that helped. Mom passed in 2008 (so glad that she isn't here to have to try and cope with covid!!) Now on the other side of the tunnel.... as hard as it was, I consider it a privilege to have been her caregiver. It has also made me a better, stronger and more understanding person (although, like Mom, you better not cross me because I can go from sweet to unbelievably evil in 8 seconds, lol!). Covid isolation has been difficult but I've used the "downtime" to do interesting things. I try to listen to a 3 new symphonies a week. I've enrolled in an online photography course. And because nothing makes me feel better than helping someone when I don't have to, I joined AARP's friendly voice program and make calls to isolated senior citizens. I call about 5 people and 2 of them have become really good buddies. One of them even got up the guts to figure out Zoom and we now chat every other evening. Turns out she is a master gardener and is giving me tips about my spring plantings! Checking out all the ballets that I can't go by looking at them on youtube. When ballets starts up again.... I'm going to be able to dance them better than the prima ballerina! Social life..... better than ever... and I mean that and I'm 76. New friends, old acquaintances, people I met at the dog park, all over the place. Chill and drop the quilt... you are not God, you are going to get angry and you have a right to. Know that we are all here for you now, make a plan of what you want to do know and what you want to do when we bust through covid because we will. Hope you and your friend plan on a nice meal at a cafe or restaurant to celebrate. Keep us updated. Good luck and know that you are fantastic.

It is super hard. Hang in there. I have a similar situation. Mine went to the neighbor and told them that I was a hoarder and he cannot walk in our home, that we don't feel him, that he doesn't have hot water, etc...the APS caseworker showed up and then he denied saying it all. It was very embarrassing.

You just told my story!!! Best wishes

I am in a similar situation. One thing that helps, is venting on the Alzheimer's/Dementia Caregiver's Support Group on Facebook. There are people in the exact same situation, who understand exactly what you are going through.

You are an amazing person to do this for your mother. It is not easy to do what you are doing. Try to put any feelings of guilt out of your mind. You are doing all that a person can do. Understand that there is an extra feeling of grief during the coronavirus, for a lost lifestyle and the difficulty of connecting with others. Try to get connected with agencies that can help you. You might be able to get some counseling and advice how to deal with your own feelings. If you can, and if she will accept it, ask for help taking care of your mother so that you can get breaks. I'm guessing that an assisted living facility where they have "a village" to care for their clients may not be feasible for you and her. People with dementia have good and bad days. They often lose track of their possessions, and it can get worse. They often don't make good judgments. Don't take what your mother says personally. I hate to say this, but it can get worse. My mother, who was a creative, intelligent and very independent person is now totally dependent on others to be fed, bathed, clothed, etc.

I don’t think this is a healthy situation for either you or your mother. You’re both so miserable and you’re not even doing a good job of taking care of her. Both of you need help!!! See if she can qualify for Medicaid and place her in the best home you can get! She’ll be happier there with lots things to do and lots people talk with. Professionals need deal with her care now .. you’re not one!!! When you visit you’ll appreciate each other and both of you will look forward to the visits ... hopefully COVID will soon end and you can take mother on outings ... meanwhile you can FaceTime, visit, bring her little gifts
favorite foods etc... and you can start taking care of yourself...
there are no good options for this illness ... and you’ll feel guilty whatever ... you do know caregivers often die earlier ..
best of luck

You are not alone in your feelings or needing to vent. I am the caregiver of my husband. I try to keep myself under control and tell myself it's the dementia and alzheimers talking, not him but it is getting harder. He is pulling away from us, distancing himself from the family and friends. Refuses to speak to them or call them. Accuses me of stealing his things, especially his money. Sits and stares at the tv watching depressing, murder shows. I finally snapped today and tried to leave the room to keep an argument from happening but he kept yelling at me. I finally told him to stop it and leave me alone. I stood in the kitchen praying for help and wishing I could just climb into my car and leave. It would be so wonderful to just step away for a few hours without having to pickup meds, groceries, etc. Just some time for me.
So vent, rant, yell. If it helps, we can certainly understand it.

You are not alone in your feelings or needing to vent. I am not the caregiver of my husband. I try to keep myself under control and tell myself it's the dementia and alzheimers talking, not him but it is getting harder. He is pulling away from us, distancing himself from the family and friends. Refuses to speak to them or call them. Accuses me of stealing his things, especially his money. Sits and stares at the tv watching depressing, murder shows. I finally snapped today and tried to leave the room to keep an argument from happening but he kept yelling at me. I finally told him to stop it and leave me alone. I stood in the kitchen praying for help and wishing I could just climb into my car and leave. It would be so wonderful to just step away for a few hours without having to pickup meds, groceries, etc. Just some time for me.
So vent, rant, yell. If it helps, we can certainly understand it.

applewatch: Thank you so much for coming on the forum to vent. No one person is perfection. In essence, no one caregiver can achieve perfection. Caregiving brings forth so much emotion and is incredibly difficult. This forum has wonderful people, who can provide you with a virtual shoulder to lean on. Prayers sent to you, applewatch.

Cat and VaJo,

Wonderful responses!

So very true! Every caregiver has needed to vent. Vent away!!!

My caregiver days are over with my parents.

Caregiving is the toughest job that I ever had. It’s easy to burn out.

I am supporting my husband these days as he goes through cancer treatments.

You will find many supportive people on this forum.

Wishing both of you all the best.

Thanks for stepping forward to vent, because I need to vent also
I too am caregiving, I will be 70 next year and my Mom will be 90+. Is it hard? heck yeah!
I helped my Mom with my Dad because he to had dementia and was also diabetic, Luckily, Dad didn't suffer/linger too long. At the end he no longer recognized my Mom or me. Mom had the day to day with my Dad, but I stepped in when I after I got off work. You see my Dad was a alpha male, he was hell on wheels. I'm so glad he didn't linger. Mom was a nurse very independent and caring. This new normal is a tough job. All of you who are caregiving know the deal!
As soon an I was allowed to return to the gym I did. I get up and arrive at 6am I get a chance to exhale and not think about what is waiting for me. Mom is still resting, I alert her that I am leaving! That's my only outlet. My mom's sister's only give me short breaks about once a month. You all know that aint enuf!!!
I have to dress, bathe, and do all of her needfuls. Yes, I do get cross with her at times! I also pray for forgiveness, And yes I have to apologize !
This is not how I thought I would spend my retirement. If the pandemic were not raging, Mom would be better off in assisted living. I could visit and help with her hygiene care, like I did with my Dad. For now she is better living at home. Soon I will have to make a decision but I hope that will not be necessary. My Dad didn't know us at the end and I do not want my Mom to have to live like that
Forgive me if you think of me as being cruel!! Who wants to see a love one living like that for years???
I needed this vent!!!!

There are a lot of good suggestions/advice on here. I am caregiver for my husband who is in the middle stage of Alzheimer’s. He can’t stay by himself so I found a couple ladies who do not work for an agency (cheaper!) that can stay with him if I have an appointment or want to have lunch with a friend. Keep up the walks and the bike rides. They are very good for you. I see a therapist because it is hard to find someone else to talk to who understands and shows the compassion that you need. He keeps telling me that this is only a season And it won’t last forever. I also have an 88 year old mother who is very negative, critical and narcissistic, among other things. I am not her caregiver but I have had to deal with her my whole life. I’ve had to set boundaries. This is extremely important. You should not be living with her. If she cannot live alone you need to find an alternative for her. I pray you can find some help and make some changes for the sake of your own physical and mental stability. God bless.

NavyVet90,

My heart goes out to you. You have been through the mill.

Will keep you in my thoughts and prayers.

Wishing you all the best! Take care. Many hugs!

It IS very hard, one of the hardest things to deal with ever. I feel for you so much.
I have finished my caregiving journey and it nearly killed me. I was the dutiful daughter with no help or even moral support from siblings and put in the position of being DPOA for toxic miserable parents. Years of family dysfunction, negativity and complaining. By July 2018 when I had to move them into ALF, my BP was 208/95. I was a walking stroke waiting to happen. The thing is I've been on full disability for PTSD and under the VA's care for many years. Was supposed to avoid stress! Yea right. My mother was so bitter and judgmental, but that was due to 64 years of marriage to an abusive sociopathic Narcissist until it killed her (massive stroke at 89.) I was left alone to deal with the bad tempered, paranoid delusional, pathological liar for another 17 months. To save my sanity, I had to do limited contact. Every visit would last about 5 minutes, when he started on one of his tirades swearing at me, I would say I don't have to listen to this and would walk out and go home. I managed all his finances, etc and let the professional staff do his hands on care and keep him safe. I stopped visiting completely even before the pandemic broke out. I am not yet 65 but have liver disease and other high risk factors. He finally passed in May (96) after going on Hospice, which he fought. Non-compliant - wouldn't take any of his meds or even go to the dining room for meals. So stubborn, self-centered, and completely ungrateful for all I did. I don't know how the staff put up with him. I walked on eggshells and bit my tongue for YEARS so not to upset Mom. As soon as she passed, I walked out of the F.O.G. (Fear Obligation Guilt) and started taking care of my physical and mental health. I would no longer put up with his verbal and manipulative abuse. No more guilt. I did more than a lot of adult children of toxic parents would have done. Not all parents deserve being taken care of by their kids. Everything he said and did he brought on himself and drove everyone away. I gave up my best years of a quiet retirement for them while his favorite 2 sons did nothing. I lost my health, lost vision after a failed eye surgery and 2 dogs during an 18 month period. I am still working on the anger at the unfairness. Therapy helps. Had to stop PTSD meds due to liver. It is sad that 2020 is not even in the top 3 of the worst years of my life, but it is what it is. The pandemic lockdowns were a blessing in some ways. How messed up is that?
You have nothing to feel guilty for. Do what you need to do to save yourself. The dementia will only get worse, the physical decline will only get worse, their personalities get worse the older they get. And they could be around for several more years of this! No parent should expect their children to give up their entire life and well-being for them, yet some do. Some don't even prepare for other options or build up savings for when they need care.
Thank goodness my parents had LTC insurance, but it galls me that my 2 useless brothers will each get a third of parents' estate when they did nothing to help out or contributed even one penny. (I spent almost $60,000 of my own money over the past 7 years helping out so they wouldn't outlive their money. They understood that living with me would never be an option.)
My advice is to start looking at alternatives; memory care, ALF, etc. Contact social workers for help. If she has no funds, find out about applying for Medicaid.
It's time to do research and start planning to reclaim your life while you still have your health. No one person can do it all alone. Take care of you! Best of luck!

Lea,

I understand the deacon saying that. Smart man! Compassionate man!

I attended an end of life seminar held at my church years ago.

Hospice was one of the topics. The priest who was very much like the deacon at your mom’s facility said, “Hospice is not meant to prolong life. It is comfort care.” He said that the church understands that there is no reason for a person to endlessly suffer.

I wholeheartedly agree!

I only want to address one portion of your vent, this: "When she told me a few days ago that she might not make it to next spring, my initial feeling was expectant relief quickly followed by shameful guilt."

When I was working at a Memory Care Assisted Living as a receptionist prior to the plague, we had a Catholic deacon who'd come in every Sunday morning to give out communion & talk with the residents who were interested in doing so. One morning, he & I got to talking. His mother & my mother both are the same age, 93, living in Memory Care Assisted Living and declining daily, both in mental health, physical health, and general quality of life. I mentioned something about feeling guilt that she wanted to die, and that she brought it up to me daily. Know what he said?

He broke out in a huge grin, first of all. He said he prays daily for his mother to die. That he wants her to have a better life on the other side than she does here, with God, free from pain and suffering. He feels no guilt whatsoever in praying for her to pass, and advised me to rid myself of any guilt I may feel over wishing the same for my mother. We all know from the get-go that we're only allotted a certain amount of time here, and then we're done. You have no control over when your mother's time is up, just as I have no control over when my mother's time is up. And I can tell you this: I will definitely feel relief when God calls her home.

In reality, the sadness is here on Earth, watching them suffer, listening to paranoid delusions about what we're stealing or what the caregivers are stealing, what we're not doing for them, who's not calling or visiting, the daily medications they take to relieve pain..........the crying, the ranting, THAT is the sad part. Not the day they pass and transition to the next phase of their eternal lives.

Wishing you the best of luck, and the least amount of guilt possible, doing the incredibly thankless & ginormous job of caring for your mother in this condition. One day at a time, my friend.

All I can say is there are many of us who feel your pain. I know that doesn't help, but we understand how you feel. I don't blame anyone for the position I'm in, but overwhelming feelings do take over from time to time. Bless you. You're doing an honorable job for your mom even when it feels more like watching your own life disappear at times.

Day at a time. After caring for my mom, and especially being locked down for 10 years, then MIL keeping us locked down 3 more years, I am now after 13 years locked down still too because of the Covid. I take it one day at a time and somehow most of the time think that things will change one day. I wonder why the long test? Take care of yourself and treat each day as though they were compartments, one at a time. I too have moments of doubt and guilt. It is normal for what we caregivers experience. Be good to yourself.

A lot of us in the same boat. My husband is 93 and I am 88, taking care of him for several years but has gotten worse the last two years, which is to be expected. I now have someone every morning to bathe him, change all the pee soaked pads and linens and do the laundry.....also gives me a chance to go to the store by myself. I have told him to his face that he should not be alive....which is true....and he doesn't understand much of anything I say, so it doesn't phase him. But stupid of me anyway. A son told me to be kind....I try, but sometimes it is impossible and he has just become more demanding. All we can do is hang in and find what pleasures we can. Walking, music, reading when possible....talking to my sons who live elsewhere. I have trouble with friends as they seem to want to give advice that I do not need. Just have to keep thinking that this will be over soon, I hope.

This is a good place to vent - most here know what you're going through. It's also good that you have an "outside" friend to communicate with. If possible, try to at least maintain contact with other friends in your life - we have to avoid contact in person, but you can at least stay in touch. For those people, unless it is someone who has been through something like this AND wants to talk about it, try to stay away from talking about your difficulties with mom and being isolated. Perhaps make some future plans to get together, when it is safe to do so, starting simple like going for coffee and doughnuts or pizza and a drink.

As for the financial hit, assumption is you've had to give up your job to care for your mother. If her income is low enough, she might qualify for Medicaid. They often do pay for in-home care - not a lot, but ANY time to give you a break would be welcome! If you choose not to introduce anyone into the home to protect mom, they can pay family (aka you) instead. You just have to be sure to pay all taxes and claim the income. Medicare supposedly offers one week/year of respite care. Perhaps you could do some research while in retreat in your room. Every little bit helps!

Getting angry and/or feeling guilt - happens to the best of us! We are ALL, you included, only human. Dementia can really test us. The best you can do is recognize if/when your stress levels are rising and try to remove yourself from the situation before it boils over. Sometimes there is no warning, but when you have that warning, tension building, make excuses to get away, step outside, go to the bathroom, go to your room, whatever works! Outside you can run around the house a few times, to burn off that negative energy! Guilt should be reserved for those who knowingly do something wrong/illegal. Feeling a sense of relief, imagining your life after mom passes, that isn't wrong, it's normal to feel that way. Embrace it, and let it go.

You clearly know/understand this disease and what it does. So you understand why your mother does and says what she does. All too often they direct their vitriol at the person who provides the care. She really has no other outlet, so it gets dumped onto you. For the missing items, if you think you can locate them, just agree with her accusations. Tell her you borrowed it, and misplaced it. Tell her you will look for it, then try to change the subject or wander off to "look" for it.

As for the isolation - I do hear you. My isolation is now over 2 years, but was due mainly to financial difficulty. Mom doesn't live with me, but close enough that I visited often before the lock down. Just when my situation was resolving, along comes this virus! So, like you, my circumstances haven't changed. I was keeping and still keep outings to a bare minimum (mainly groceries and supplies for mom.) I can't visit my son and his family. My daughter works off-shift dispatch, so it's rare I get to see her. I can't really visit mom - tried their brief outdoor then indoor special visits, but between dementia, bad hearing, the masks and distancing, I'm not sure she even realized it was me! She knew who I was before the lockdown. She has no phone due to her hearing and doesn't do online/video, so....

Vent away here all you want. Come back - some may have useful suggestions for you. See if you can find resources to assist you with a little income or in-home care-givers and/or respite. Reach out to former friends, see if you can rekindle friendships (they may appreciate it too, since we're all in this isolation booth!) Avoid talking about your mother or situation (exception may be the one friend you chat with now, if it doesn't bother her.)

(also, ignore Lockett2166. Despite being POA, I don't think this person has done one minute of care for someone with dementia. this is based on posts that generally look like this one, and are also posted under Riley2166. this person hasn't got a clue and generally recommends garbage.)

Can I just say, be kind and take care of yourself? Call your local area agency on aging which all areas across our country have and explain you need to speak to someone about available services and caregiver support. It may be respite, it may be meals delivered...take advantage.
Although recently mocked by my only (and out of state) sibling, I am the only family my elder parents have, living under their roof, often cleaning and cooking, bill paying etc.
And I was really okay doing it. Although it could not have been predicted, and blood pressure can be a possible factor, a couple months ago I suffered a medical emergency: an aortic dissection which is often fatal. Just sharing this to point out that the ongoing stress we THINK we are handling fine, may be having unexpected tolls on our well-being, and that we need to take care of ourselves and have a clear plan about who makes decisions for US as well.
The feelings you are having toward your mom are normal and understandable. I have thoughts I am too embarrassed to share her in re to my mother's well-being. Many have said (she has dementia) she should be elsewhere, but her issues are not so horrible that I can justify doing that. The sibling, who remains both ignorant and clueless, thinks both of them should be put in assisted living, which would literally bring on the demise of my father who, at 103, literally thrives in our environment, taking care of the house and yard. He loves mowing the lawn,and that is his exercise! He loves the neighbors, talking to them, going for walks etc. Take good care....

Everyone is different I suppose. I have the opposite issue. When I am stressed I don’t eat. I am not a big eater to begin with.

My doctor warns me not to lose any weight. I don’t have excess fat so I can’t afford to lose weight.

So, it can go either way and neither one is good.

I have to force myself to eat nutritious meals where another person has to stop themselves from overeating.

Some people are overweight and struggle to lose weight. I have struggle to gain weight and hardly anyone empathizes with my situation.

Stay away from those sweets!! Lol. Set those boundaries like everyone recommends. You just have to find the right timing, recognize it, take a deep breath and stand your ground. See yourself with a future beyond this period and use your alone time to prepare for it.

You are isolated and don't have a plan for your future. I just got out of care-giving in the last year and went right into the pandemic, so I felt the same way. The pandemic is just an extension of my previous isolation and hopelessness. I can't close out that chapter because of conditions brought on by the pandemic. Believe me, sweets are not the answer. They talk about "pandemic weight", but there is also "caregiver weight". Your one friend is also isolated and feeling the boredom, fatigue, mental stress of uncertainty. I think you have to find a way to incorporate new things into your life to minimize the impact of your mother's remarks due to her cognitive issues. Are there courses you could take online to improve your skills and career prospects? Are there things you want to get rid of that you could sell? Do you have any dreams you could work toward? Yes, this will end but there may be more difficulties before you get to that ending and more decisions that need to be made to ensure that your mother is adequately cared for. In the meantime, check out the opportunities for respite care in your community. You may qualify for a free or low cost program.

Also know that none of us is perfect and forgive yourself for getting angry and feeling guilty. We all do. Just learn how to let it go.

Dear Applewatch,
There are many good posts below but I like Taarna's the best. She said it all, get some outside help so you can start rebuilding your own life. Meet some old friends and get away to pursue an interest or hobby. Get outside for some green time. I have no idea what the finances are like but I could not manage without the help of my mom/dad/aunt's sitters. I do as much as I can ( which is a lot) from a distance and make sure their needs are met including coordinating other family member visits. I understand mom is in your home and you may one day have to consider moving her.
If you had a sitter could you work online from home?
Life IS disappointing when it does not go as planned but try to find some help for YOU! You deserve to be happy and have peace.
The best of luck. Everyone here cares about your feelings.
Jax.Fl.

I know you are venting and that is fine and I am so sorry but here is my take. YOU are giving of yourself and your life and your peace and sanity. There comes a time when you have to draw the line - and this is when it does NOT matter who is causing the problem or WHY. You just have to realize it has to stop and you must do whatever needs to be done to put a stop to it before you are destroyed. (Been there, done that.) Don't be all sweet and nice and distracting. It won't work and in the meantime you are crying inside because of what she is doing to you. The only way (I will be 87 with a lifetime of experience in this stuff), you have to fight back and put them in your place. It won't last and they might not understand but what you are doing is preserving yourself and your own value and feelings - and you deserve that - you are stopping them for the moment. If this simply goes on and on, why on earth do people allow this? There comes a time when these people either need caretakers or they have to be removed from the presence of others. No human being on earth should take abuse from anyone, no matter what the reason - and they must do all in their power to stop it cold at once. I was a POA for 28 years to one person and l4 years to another person. YOU are doing the work, the favor, the kindness - they abuse you? NO WAY.

So sorry for you and your mom. I don't have any solution, but am thinking of you. (As I sit in my room for a few moments of peace and quiet) I could and should walk, but don't. Not sure how to get the energy to do so.

"This is getting hard" is exactly what I say to myself and then think, "And it will probably get harder." Feeling frustrated, angry, guilty, resentful are part of many of my days now. I pray a lot for wisdom and guidance.

I don't want any regrets when mom is gone, and yet I feel that regardless of bringing her home to live with me and doing what I can to make her life better, I will feel regret that I could have had a better attitude.

Who knew that taking care of someone who took care of you could take such a toll.

Take walks, listen to your favorite music, get lost in a book, come here and vent...

God Bless you. You are not alone.

Your love for your mother has caused you to put her life before your own. Your anger is the ember of life within you that is crying for help. Both of your lives need and deserve nourishment. This can only be accomplished with outside help. What resources have you looked into? It is critical that you continually seek solutions to this problem until you find something that works. I know you feel hopeless now but don't give up! Options are always available. Your poor life is suffering and needs your attention. Keep using this forum and questioning everything. You are on the right track!

Oh my gosh. I am there with you and all who responded. I’ve been waking up with a headache in the middle of the night and can’t get back to sleep. My neck is in a knot and sometimes I can’t turn my head. There’s a knot across my upper back. My eating has changed. Now with the cold weather I won’t be able to get out and walk which is my relief. As much as I love my aunt, I’m past the breaking point as my body is signaling to me. It’s scary because I don’t know what to do about it all. This site is a release valve. No one but us can understand. I am thankful for all of you.