Has anyone else felt these harsh realities of caregiving?

This sums it up beautifully and should be published. And yes, when raising a normal child, you see them develop and progress and strive to be more independent every day. Not so with caregiving of aging parent. I’ve buried both my parents and in-laws. My mother n law moved in with us. My sister moved in with my father.
No good answer. It takes a team and unfortunately a manager. Like a project manager.
but now it’s my husband, and I’m looking for conversation. Because no team here.

I was a caregiver to my mother. She was living in a nursing facility - lock down unit. The hardest thing ever was the night we put her there. I was so out of it, I ran a red light at a very busy intersection with the highway patrol right behind me. He pulled me over and asked me if I knew why he pulled me over. I did not. So, I told him. He was definitely a compassionate man - didn't even cite me, but we both agreed I probably shouldn't be driving. That was the beginning of my role as a caregiver. The previous writer sounds like she has a grudge against her mother for "doing this" to her. I never looked at it this way - and I cried all the time, but I also went to see her most every day. I was an excellent caregiver. I was only there for her. I didn't care about me or the fact I hated doing the "caring" part. We got along just fine. No matter what she said I agreed. No matter what she did I agreed. Whatever she mumbled I agreed and answered back. If she wanted to cry, I talked about something else. She seemed better with routine, so I mostly did the same things every time I went. It wasn't frightening that way. Being afraid is horrible. I told her what I was going to do next - like" I'm gong to brush your teeth", or "my hands are cold" - followed by laughter. I saw other's watching me when I was with her, so I extended my care giving to them. Each time I left for home, I was elated - higher than a kite. They gave me so much more than I ever could have given them. I turned horrible times into better times just simply by reminding myself "there is no more used to be." I also found myself writing a very short book (38 pgs.) It's OK not to be OK! I even published it and very proud I did so. Its a hard job - but it doesn't have to be.

I miss my old life, I miss my backyard, I miss going for a drive and singing like a rock star in the car. I miss my Husband, his laugh, his voice, his hugs, his concern for me and good Lord I miss the sex.

My husband had a massive stroke at 54, I was only 43. That was a little over 5 years ago. I've managed to keep him at home and care for him, but it has been the hardest 5 years of my life. Beyond the everyday care and all his physical needs, the mental and psychological impact it has had on me is exhausting and unwavering. He is non-ambulatory and non-verbal and has declined to being bedbound recently. Because it is soooo hard to find decent help in our area (the boonies) I've been alone giving him care most of the 5 years. I've tried agency help a few times but have found a HUGE lack of training and experience in handling the needs of someone such as my husband which made things even more difficult as I was left to train the people sent to help us (which I wouldn't mind except they would pull their worker after I trained them and send them elsewhere). So the result of 5 years giving care to him is me now at 49 with a broke down body. Yet I still get up every morning with a smile and positivity to set the mood for the day. Because I love my husband dearly, I am able to look past his lack of empathy, gratitude, compassion and romance... all because the stroke damaged most of his frontal lobe. Together 26 years now, I can't even imagine a day apart, yet I have sat sobbing at 3am after doing a complete bed change and total bed bath due to a river of diarrhea that swallowed the bed controller and the tv remote. But I was good with all of that until I was done, bagging everything, sweating, exhausted, finally crawl into bed and just drift off only to hear him yelling. I go out to figure out what is wrong.... the tv is on the wrong channel and that is all my fault, none of the hour long clean up was appreciated, why should I be tired and a bit grouchy, and so the ugly looks and his version of cussing me brings me to tears. I go to bed and pray that God takes him before he gets any worse and declines to the point I need to place him somewhere, that would kill us both. Bless you all and I hope each of you have an easier day tomorrow..... It's never easy, but some days are a little easier. Hang in there.

Boy, did you nail it. It’s refreshing to hear my own thoughts echoing from someone else. Hear so many caregivers talk like it’s rainbows and unicorn farts. It makes me feel worse when all these people are talking about how fulfilling this new life is. Yeah...I’m not getting any of that. Posts like this changes the question from “am I just inherently more selfish than everyone else?” To “maybe I’m just more honest with myself than others?” Can’t confirm or deny either if those. I guess misery really does love company. Glad to have the gritty, unsweetened company.

cheers.

Hi Meredith...Your story feels like my story. Suffocation and the loss of freedom to move about my own home is gone. My mom follows me everywhere. I feel angry and I too now feel elderly and yet I am not. My mom is going to be 99 on her next birthday. Yeah for my mom! If you want your mom to leave home, then stop feeding her so good. My best attempt at humor. Do I put her in a care home and feel guilty or do I continue caregiving my mom in my home and risk losing myself any further.
I don’t want to sound like a victim. I have always been strong and independent, but I am now just getting through the days hoping for the end to happen. Oops...bad girl for thinking those thoughts . Who knows...once my mom is gone, maybe I will be lost without all the laundry, sounds and repetiveness of each day.
I really could relate to your story and I only wish I knew who you were as I would love to keep in touch.
janet o

I can so relate! Life as I knew it before mother came to live with me is NO MORE! If I only knew of this site and read the posts here I may have not made the decision I made. I want my life and freedom back! I just never imagined having Mom here would change everyone’s life. I’m so weary. It’s very stressful. My children are adults with children of their own. My husband and I looked forward to a different life enjoying our grandkids but All we do now is take care of mom and make sure her needs are met. We can’t see our extended family much because of COVID. We can’t do fun things with our grandkids Mom doesn’t like kids. She seems to want all the attention. We have to watch her 24/7. We have some outside help for when I’m at work (yes I still work full time) so that involves “other” people here a lot. We have no privacy and that’s really annoying. As soon as I get home from work the hired help leaves and it’s my shift. So many days I just don’t want to come home from work. I would like to retire but I surely don’t want to retire to being a full time caregiver. Mom is 98 so when I read or hear about people living until 100, 103, 107 I cringe. I’m sure I sound so selfish. Thank you Merediths for sharing. Thanks for letting me vent. Thanks all for understanding. Hugs and prayers!

Hi- At last someone who feels like I do!

Well said! Everything you have penned here is felt by every caregiver. The loved one is not to blame. It is the situation and nothing can be done about it. It is a ride through hell but we do it out of love.

People who have never done this will never understand it until they do it themselves. You can explain it to them until you are blue in the face. They will never "get it" until they have done it.

It is a totally different planet than taking care of children. As a caregiver, you must not only manage your own life, but you must manage the life, finances, and decisions of the loved one you are caring for. It is super overwhelming even if they are in a facility. The constant worry and concern never leave. All you can do is lean on God and pray for strength.

Just know that all of us here know your pain and what you're going through. We've been there and it is not a walk on the beach.

God bless you for the care you are giving your loved one and stay strong.

I totally get what you're feeling.  Taking care of mom has aged me and changed me.  It is horrible to watch the person from whence you came deteriorate before your very eyes.  Everything that was once important to them, now gone.  Watching them exist without purpose.  It's draining and it is eye opening because we will be in their shoes one day and my daughter will be looking at me the same way I am looking at mom.  It's awful and I am sorry you are up at 3 am thinking about all of this.  Sounds like maybe it's time for you to look for a place for mom to go.  Caregiver burnout is real...  Think about other options for her.

I find myself a different person when I look in the mirror now. I am 65 yet feel I have aged 20 years in the past few years. And in addition, I have so much rage, anxiety and depression to deal with. I spoke about moving to assisted living, to my 93 year old dad who has dementia, and he hit the roof. He flat-out out refused to go, thinks I am trying to get rid of him, then threatened suicide. And doesn’t see what is happening to him, even though I reminded him that he tried to take his hearing aid battery with a glass of water!! I understand the poster who said she sometimes wants to get in a car and drive “far far far away” and not come back home. You are an impossible situation which we understand. Please give yourself permission to do the right thing for yourself. And thank you, thank you, for writing your 3 am heartfelt post.

@scared55 I wish I was more like you because I do regret it. I’m mad all the time at my sister, over a month and not even a phone call. She has no idea what is going on in my house and she doesn’t care. I’m resentful and pissed.

We all think we will get help from our siblings… But when the time comes and they don’t help, you will do everything in your power to handle it. Then you can lay your head on your pillow every night. You will somehow get strength if you have faith. I did with my mother and still am with my father. I have lost years of my life I think but I don’t regret it.

You are not alone. In my case, I was watching my mother’s social life disappear from Alzheimer’s while her risk for wandering went up. My father was adamant that they both remain in their home. I was worried and frustrated to the max. Then she got shingles, and we couldn’t get pain meds because she lost her ID. That forced my father’s hand to allow a move to memory care. She adjusted fairly quickly and loves interacting with the other residents.
Don’t assume that assisted living is off the table. Your mother’s perspective may have changed as she has dealt with the isolation this year has brought us. And promises can be broken, especially since you had NO IDEA that life as a caregiver would be like this when you agreed.

I don't understand why these loved ones aren't put in a nursing home. It's very hard to be a care taker for someone, who has Alzheimer's or dementia. I took care of my father and mother...both went to a nursing home at the end....I did it for 13 years....neither wanted to go to a nursing home...but I couldn't take care of them and they didn't want anyone in their home. Once mom went she would never talk to us. At least she was taken care of and safe....and not alone at home...you are in charge now, you decide what to do...

Glad to see so many opening up. 🙂

The first step is to recognize the problem, like we have here. The second step is to find ways to improve the situation. Talk to a counselor, life coach, or social worker. There is away.

As for now, we should take small breaks. While it's not much, it's essential.
we will make it through, with support and hope.

All the best

I feel like you reached into my thoughts, my life, my soul...
While we each have our individual circumstances, your words are so eerily similar to what is happening to me.
Last week, I reached another breaking point. For various reasons, I’m not ready to move my mother out, but I NEED real relief.
My husband helps, but the effort is minimal, and everything is on my shoulders. Not just the caregiving and running the household, and taking care of my mom’s time consuming business matters. Everything. From car maintenance, to home repairs, to figuring out how to move while juggling everything else. Changing cell phone companies and getting new phones (nothing went smoothly) has eaten two full days of my time, while my husband watches sports on tv plays games on his iPad. I find myself angry, resentful, and frustrated ALL THE TIME. I’m using food and alcohol in unhealthy ways. I know this is killing my spirit, mind, and body. There is no end in sight, and the only end means more pain and guilt.

I totally understand I have been living for 6 1/2 years with a husband with early onset alzheimers (he is only 60) I became a full time caregiver a year ago every day is the same. He has been up since 6 am pacing and yelling , swearing at no one. I have three children that help not at all. i just want to run away ,I get out every 3 weeks to grocery shop because I can get my father in law to baby sit. He can only deal with his son for a small amount of time because my husband gets angry. I don't know what to do anymore.

Absolutely... and it only becomes much worse !!!!!I don’t care how many suggestions and words of support nothing helps. (Except this
blog because we’ve all walked these shoes)
when things get bad even 24 hr care not enough because your home becomes a hospital and you’ve got others there day and night with no place to turn .
you or LO need to live out ... find best situation you can afford !!!!
nobody can do this ... and if you think your LO is liking this situation ..... think again !!!
there’s no easy or good solutions to this madness
best of luck !!!!

{{{HUGS}}} - What you say is so painful and so true. It seemed a good idea to move my mother in with me and my husband (I have no siblings, no other family except him) after my dad died. SEEMED a good idea - I had reservations, as I knew what an awkward beggar she could be - but it's been so much worse than I feared. She's been with us 19 years now. That's an awful lot of life and freedom lost, an awful lot of her problems to deal with. I'm not a natural carer, never wanted to do this. My hub now understands how and why this has been so hard!!!

Your post nearly had me crying. I've broken down so many times, and each time it takes a bit more of your soul and there comes a point where you (the carer) aren't able to properly heal anymore. The scars build up. So I echo your warning - if you don't have to do it, DON'T! Even trained carers/nurses struggle when it's their own LO.

Mother and I have just had a ridiculous 5-minute conversation about how to make a sandwich. Basically, she expects me to do every little thing for her every day. On top of the big health dramas, it's little things like this... all day, every day.

I know it's not forever. It just feels like it. xxx

I totally get what you're saying and wish my loved one (father)and other family members could understand this, especially during moments when I'm not so nice because I've been caregiving for seven years now. On occasion, my father ( after I've complained about an issue)will say I should have put him in a nursing home and my husband will make comments insinuating that I made this choice. Well, I've worked in nursing homes, and a nursing home isn't the "first place" I would think to send my father who has always there for me. He was fairly independent after his first stroke but became a little more dependent after a second one four years later. Home care service was helpful prior to the pandemic. I'm hoping to resume the service fully as long as my father can afford it. If he develops dementia, requires total care, and the funds run out, nursing home care will have to be an option. So, if there is someone who has not had a relationship with their parent throughout the years, my experience now makes me advise against long term caregiving if the estranged parent suddenly becomes ill. However, we each have to decide for ourselves as daily visits to a nursing home can also be wearing.

Lastly, I do feel like I've aged through these years and have let my own needs go. I'm in the sandwich generation and haven't had a vacation in the past seven years. I've also sacrificed some of my own family's needs for sure. There is one decision I've recently made, I told my father he may have to spend a week at a nice facility that provides respite care until I return from a weeks long vacation. Of course, I'll still worry a little while I'm away but I need to enjoy the rest of my life (I just kissed my 50's goodbye).

My love - I wish I could come give you a massive hug! I know exactly how you feel. Both of my relatives I care for say they don’t mind going into residential care but I know that my mum at least will definitely hold it against me should the time come. However I am determined to stick to my guns and will not take on full time caring no matter how mean she gets. I’m up to my limit now which can get intolerable and I already need more therapy. I agree with what the others are saying and have a think about at least getting some respite support. Maybe she could have a week or two somewhere in AL - she might like it and want to stay longer?

Sigh.

All (almost all, but there isn't time enough) of what you say is true.

I hope this will be some comfort to you: I have undergone almost every experience you describe so well and here I am to tell the tale and to sympathise in every way with the feelings.

So where do I take issue?

It IS a choice. You DON'T have to do it. Your mother's expressed wish never to go to Assisted Living did not and more importantly does not bind you to provide the alternative.

Other factors may, though - what are they?

It's 5am and I just read your post and literally out loud asked myself..,did I write this! I can't tell you how much it means to know I'm not the only one who feels this exact same way. Thank you!

This is so true and upsetting, furthermore, each of the states especially CT arent help with locating senior care for those with limited incomes. Everyone seems to think that everyone has extensive amounts of funds for this care, we don't. I have an Aunt that is loved dearly but I don't want to have her living with me.

I have and continue to help her with her expenses but the issue at hand is what do you do when things that she normally has have been stripped from her and she isn't getting the help for documents, social services, and other items with the lack of sympathy and proper assistance that should be a given as an aging senior.

Why is it that seniors do not get any priority similar to the military, they may not have served us in a war, but they have served us in all aspects of work services and now is their time to rest and retire. These two groups should be first at the head of the line for medical as well as housing this is a shameful fact that needs to be corrected immediately.

As a solution to this crisis for these two groups, why are we not looking into more information on the Tiny House Movement and or a modern version of Hostels for these individuals. 400sq ft homes that have the basics that are needed similar to this realtor.com - https://patch.com/connecticut/across-ct/ct-tiny-houses-sale there needs to be an accelerated law put on the books so that people can live out the rest of their lives in a peacefully and can be set up for these two sets of individuals only and as things start to progress create villages where there are on-site nurses and other healthcare professions in these villages as well.

This is a problem with the solution provided can we get the government to start doing things that help the people who put them in office for a change.

You express the frustrations very well and they are very real. It is a 3am piece, undoubtably! Nonetheless true.

I think when we "promise" anything we do not intend to break it. Marriage vows are an example. I am twice divorced but it is not because I am flaky or because I am intolerant or difficult to live with. All my friends and family and my life achievements point in the opposite direction. I am tolerant and balanced and most importantly trustworthy.
I still felt the disappointment and the stigma around a "broken" marriage. Everything says it should last, vows are to be kept, marriages are for life.
Realistically though, contracts always come with conditions. Vows have to be over ridden if those conditions are no longer met. If a partner commits adultery (for me two strikes and they're out) or they develop something you just can't live with - then it's a rewrite.
The commitment to your parent at the point you promised 'no assisted living' is the same. You promised that with a set of conditions that presupposed it would be doable. That your mum would be a certain version of herself that you could still live with. That the future would not put your marriage or your sanity at risk.
I think we all want to look after our loved ones - come what may - but sometimes it isn't possible and at that point you need to be realistic about a promise you made.
Good luck and whatever you decide, this is not forever! x

I am so glad that I have the support here to express my feelings. I have had almost every emotion from depression to anger to frustration and some all at the same time. As the oldest of 2 children and being on unemployment since last April, its been expected that I be the caregiver for my mom. Mom was initially diagnosed with NASH liver disease in 1996 formally but started w/ health issues related to her liver in 1992. She was stable until about 2014 when she fractured her femur and ended up in and out of the hospital for almost a year. Since then, I have been her health care liaison, have taken her to every MD and therapy appointment, maintained her health and med records.
Her health has been fairly stable with some bumps in the road over the last few years until the bottom fell out in December 2019 when she fractured her pelvis and then subsequently ended up inpatient due to her advancing liver disease in Jan 2020. She spent Jan-June 2020 in and out of the hospital/ rehab at which time we made the decision to move her in with us. She is camped out in my Dining room currently awaiting the sale of her home and the start of the mother in law suite addition.
we wanted to only add 300 sq ft for bedroom / bathroom simple and clean but due to our stupid township regs we could not do that and now have a major addition/ remodel on the 1st floor of our home to undertake. i have been coordinating multiple doctors, home pt/ot/nursing, home health aids (my angels that I cannot live without), contractor estimates, and township zoning hearings.

My hubby is an absolute angel but he is getting frustrated because he sees how this impacts me and how little support my brother gives us. I had to beg him to "baby sit" mom for 4 hr 1 sat night so we could get together w/ another couple who live a mile from home. we had another Saturday night that we went out with a few friends and I decided to have a family friend " baby sit" mom and put her to bed. She has worked for us and I trust her so from now on she is my go to for evenings. I have not even tried to look for a job because most days there is a parade of at least 2-3 people in and out during the day to care for mom which requires my attention and if her HHA dont show up I have no one to care for mom. I know my hubby wants me to work, but honestly, 11-7 would be the only time i could work which would mean no time to sleep.
Some days I want to get in the car and drive far far far away and never come home. My big outing this week was going food shopping so I could be alone and listen to my favorite pod casts and have some " me time". I only have 4 legged children so Im sure those of you who have had human children can relate i guess.
I am so happy to have this forum to express my feelings without judgement and condemnation. I started a workout program and have continued with my nutritionist to keep my health up because if something happens to me they are all screwed in my house. I told my mom if something happens to me she will either endup in my brothers basement if she is lucky or will end up dumped in some nursing home b/c my SIL would never want my mom there. She doesnt want her own parents in her home living there.
My saving grace is my faith in our almighty God and my guardian angels out there. I am just praying that mom gets through her current setback/health crisis and is able to regain her strength again. Thank you and sending love and prayers to all of you !!!

My advice to you is find a nice retirement center and move your parent there. Your resentment will only grow and make you and them both miserable. You're right...it isn't fair, and no one would choose to do it, but if your attitude is such that you can make your time with them enjoyable, or at least agreeable, you will learn how to cope! Good luck!

I was where you are after a few years of this with no help. Then we were getting some caregivers (I use that term very loosely when an agency decides for you ) through the waiver program. For the last year since the covid, I have been completely alone with his care. No exercise, no friends, no leaving the house because he is at risk if I take him into a store and he cannot be left alone in the car. I have relied on curb pick up by whomever can get there for me, amazon shopping and virtually nothing else. I am at the point of climbing the walls as I was the first few years. You cannot express your feelings freely even to unload a little because for sure then Protective Services would show up and that would not be good for anyone.

You are exactly right. Caring for a loved one is a horrible job. It's like going through a dark tunnel with no end in site.

It's crazyfying.

The only thing that helps, is being a part of a supportive group. Consider joining the Alzheimer's/Dementia Caregiver's FB Support Group. It's a place where you can vent without judgment.

After 7 years, it just gets harder. My rule #1, ask for help. The sooner the better. Lots of help. Help to give you a break, not just an hour now and then, 4-5 hours min and at least a whole day or two as often as you can. Most of the time there are people around you that want to help. If you can't ask, make a list of what you want help with --- send it out, email, or however you can and people will pick what they want to do and how often. The more you feel you have to do it all yourself, the harder it is. Have patience for the people helping - they are not you and may not do things as well as you...that's OK. Anything that gives you a break is good. Allow yourself to thrive even though your loved one is not. If you ever want to do more then just survive it and some don't -- ask for help.