Let me whine.

JoseyWales

Seriously feeling sorry for myself today. Please understand I love DH. What he's going through is worse than what I am. BUT… I'm still feeling sorry for myself.

This disease goes on FOREVER. Symptoms first showed up 16+ years ago. When I was barely into my 40s (DH was about 45) and still a stay at home mom. I went back to work 15 years ago because I knew we were going into a storm, and I'd need an income.

The worst storm ever came, of course. I'm now feeling OLD. I haven't reached those professional goals I had back in my younger years. And at my age there's no chance. Don't tell me otherwise, I no longer have the energy to want to hit those goals and with taking care of DH (even though he's in MC), there's no time.

I just feel like I've wasted my life taking care of DH. I've not hit professional goals, I've not hit personal goals, I'm still living in our house we always intended to move out of and move up. No chance of that now with just my crummy income.

And imagine raising a child during all this. Imagine going through your entire teens and losing your father one piece at a time, up to the point where your father forgets who you are and screams at you to get out of the house because he doesn't think you belong there. My heart breaks for our son.

There's more… but that feels like enough to share. Early onset has ruined this family forever.

Again - just feeling sorry for myself. Can't put this out to family and friends, they won't get it.

midge333

I am sorry. This disease robs the victim and caregiver.

trottingalong

You have the right to feel sorry for yourself. I have not been where you are, but I feel for anyone who has had to deal with the early onset of this horrible disease. At least we were able to raise our children and retire where we wanted to. I sometimes feel my retirement life is being stolen from me, so never feel guilty for those feelings and vent away. You need somewhere like this to do that.

Bailey's Mom

So sorry…you started this journey at such an early age and it has robbed you of so much. I know about feeling guilty…I feel like my life is over and there is no joy to be had anymore, but know that he is terrified and has it so much worse than I do. It has only been a year since DH's diagnosis…I can't even imagine 16 like you've had. Feel sorry for yourself…you deserve to for sure…

Jazzma

Nothing about this disease is fair, ever. No one deserves to go through it as a patient or a caregiver. It robs you of your peace, the love for your partner, your future, your money, your time, everything. You're not whining, you're stating the truth. I'm so sorry any of us have to be here. Please continue to come to this site and say what you need to.

mrahope

I truly do feel you. It's OK to get angry, whiny, or any way that truly reflects how you feel. I'm much older, but having discovered so many truly evil things that DH had done behind my back even before dementia entered our lives I feel as though I've thrown away my life some days. Please know that it's totally OK to say these things when you need to.

Quilting brings calm

You are not whining. You are venting and being truthful at the same time. Your story started so much earlier than mine. I can’t imagine adding the financial issues you have to what is going on with me. I will be 66 this month. Mom started acting flaky about 11 years ago after a skull fracture. She started being needy from 12 hours away 7 years ago. It’s been five years since my life was totally upended in a few weeks time by both her and my step-dad. I retired a couple years early partially as a result. I feel like my 60s are being totally dictated by the needs of them( now just her) and my spouse. My spouse has been on disability for health and vision issues for those same 5 years. Now I’m having health issues. I’m never going to get my life back in time to do what I want in retirement. And I certainly don’t want my spouse to be gone any sooner than he has to be. But taking care of multiple people wears on me.

jfkoc

we are here to listen too…24/7/365

annie51

So sorry you had to go through this at such a young age and for such a long time. You have the right to feel sorry for yourself - those feelings come and go but are very normal. We all feel resentment at what we’ve lost, including the life we planned or expected. I try to focus on small joys each day to balance out the frustrating and sad things that can take over your thinking.

This is a great place to whine, vent, scream, whatever works!

PlentyQuiet

Dh was diagnosed when our kids were 17 & 18. Instead of having parents be their rock while they launch into adulthood they are on this terrible road with me. Neither sees DH as "dad", he is just a person we are taking care of.

I can't even bear to get into the money and career part of it. It's just too depressing.

Early onset is damaging all of us

Biggles

Despicable, horrible, unfair, unbelievable, not right and hideous. Costly, demanding, sole destroying and like you I don’t want to be here, but my DH and me have at least had a life and grown our children into their 40’s but it doesn’t seem to help. The demands and decisions never stop and listening to your friends ‘popping’ off on yet another little cruise or even out to some restaurant for a dinner ‘party’ when you are isolated at home with food falling onto the floor and watching the same TV show yet again is driving you balmy. It’s heavy baggage to carry especially when you can’t talk to anyone about your terribly trying life that seems to have no end. This morning I felt that we were just zombie walking around the house waiting to die. Then we took the dog to the dog park which helped but was only 1/2 successful. And tomorrow is another day to get through. Can only say hang in there, this is the best site for venting big time. We hear each other with love and understanding.

Carl46

Josey, you are absolutely right. We are snakebit and there is no way out of it.

Buggytoo

https://alzconnected.org/discussion/comment/227351#Comment_227351

So sad and so well said!

WIGO23

The stories I read here make me want to cry—for others and for my DH and myself. I don’t know what path DH’s ALZ will take but it terrifies me daily as he becomes confused, can’t complete simple tasks and gets that awful blank look in his eyes as he struggles to remember how.

If we can’t tell the truth of this disease here among those living it, where can we tell the truth?

There is no fairness here. No one deserves this life no matter how short or long you must live this way.

JoseyWales

Thanks all for the virtual support.

Hugs to all of us.

Biggles

So hard sometimes and yes hugs to all of us.

SDianeL

so sorry you and your son are going through this. No words can express what this terrifying and heartbreaking disease does to families. Hugs.

beachbum

I’m with PlentyQuiet and JoseyWales, started noticing memory issues when DH 50 and our boys were in Jr high/high school. Cognitive issues for about 4-5 yrs. I eventually had to do all the trips for travel ball, plan graduations, college admissions and moving to college. My boys have missed out so much on having a dad during this time period. They saw him mentor so many others ( he was a coach) that when it was them needing the guidance he was unable. We are 10 months into official diagnosis EOAD, he is now 57 and I just turned 54. My youngest ask when his dad will forget who he is and the oldest concerned about not only the progression but what the stress will do to me. He does not work or drive so I have to handle Everything plus work full time, and I feel we are just at the beginning of a very long journey. I try not to get irritated, this is worse for him, but I fail miserably sometimes.

Bill_2001

I am right there with you Josey. My 50s are ending very soon, and I will soon have spent my ENTIRE 50s as a caregiver. I have been passed over for promotions (could not travel) and have not been able to take even a small vacation. I love my dear wife, but caregiving is a prison sentence.

I handle it well most days, but I have my days when I am full of resentment. If there is a way to take care of my dear wife and still have some measure of freedom, I have not found it. It is very difficult to watch my friends travel to Disney and national parks during this stage of life while I am literally stuck at home.

Retirement would free me of juggling work and caregiving, but work is the bright part of my day. I really don't fancy the idea of retiring into a life of nothing but caregiving. Adult day care for my wife allows me to keep working, but I have no real escape into the carefree life that most of my friends and family are enjoying now.

And don't get me started on friends and medical professionals that have suggested that I just "put her in a home." Ok, Mr. Rockefeller, I will get right on that. Of course I would do that if it becomes necessary, but they don't realize how difficult that is either.

Yup, Josey, many days I feel trapped too. Most people cannot comprehend how LONG dementia takes to progress to the end. I joke with my friends that my wife is trying to "run out the clock" on my life.

Carl46

The T-shirt says "I retired, but now I work for my wife." Some people think it's a joke. not.

GiGi1963

At home or in MC, there is no respite, joy or fun only responsibility, guilt and loneliness.

michiganpat

Josey, for sure we all get it. I am also in for the long haul with 7 years in so far but it's hard. There's so much I had planned for retirement for us, but no more. My husband is fearful of the world and basically goes no where, choosing to stay home with our dog. It is what it is.

ChaChaJ

https://alzconnected.org/discussion/71088/let-me-whine

You feel this way because it stinks, and there are no easy paths forward. My DH is in stages 4-5 of this disease, and I get so depressed about our situation that I can barely function some days. I am not a saint, but somehow, people keep telling me I am and how "special" I am to do all I do for him. I work full-time, too, because I must maintain health insurance. This has happened my whole life - I'm a perpetual caretaker, and I'm not too fond of it, from parents to kids. I want off this stupid ride. This disease takes a lot of others in its path of destruction, and it's getting worse. A whole generation of boomers and Gen Xers are coming down the path with these conditions, and we, as a country, are not ready to deal with them. You have every right to feel sorry for yourself because it's a bad situation no matter how you look, and we are collateral damage. I wish I could be more cheerful, but you are not alone; solutions are not coming for us. My hope is this organization will not just soothe us with forums but begin action on how we are going to manage all these folks with proper palliative care so it's not such a desperate life suck for folks like us.

JudyVE

https://alzconnected.org/discussion/71088/let-me-whine

It’s good for you to vent in this safe space. We all love our dear ones and yet… caregiving is a private hell. Sending love your way.

Lisbeth726

https://alzconnected.org/discussion/comment/227553#Comment_227553

I sometimes read the discussions to see if what I am feeling is crazy, but have never reached out. Although, I have great kids and amazing sisters, I feel so lonely sometimes. I can so relate to you. My husband was diagnosed in 2020 my youngest was 10, my daughter was in her freshman year of high school and my oldest son was in college. My husband mentored so many kids as a youth football coach and I feel my kids have just been robbed of so much. I too have had to do everything alone, all my daughter's high school cheer competitions, my older son's football games and younger son football and basketball games to graduations and huge milestones in their lives. While I try to find a blessing everyday, nothing feels complete, I feel a huge hole in my heart. My husband's dementia has progressed, he has trouble walking, can barely speak and needs help with everything and now wonders off, which is scary because he does not have good balance. He was at the prime of this life, the life of the party and its so hard to accept this has happened. This is just such a heart breaking, cruel illness. Thank you all for sharing your pain as well as giving your support.

mommafour

Hugs to you Josey. It’s been 14+ years for my DH. He’s 16 years older than I am and I’m still in my 60’s but I’m not sure what will be left of me when I’m no longer his caregiver. It’s wearing me down physically and mentally caring for him at home. Last year I declined a great opportunity for a promotion at my job and instead retired to stay home with him. I feel very isolated. The resentment creeps in occasionally, which makes me feel guilty. I can’t imagine going through this while still raising our children, like you and others here are doing. I’m so sorry that you’re going through this tough time.

DWTired

https://alzconnected.org/discussion/comment/227351#Comment_227351

Yes! Thank You!

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Beachfan

Hi Josey,

I didn’t chime in earlier because, truthfully, I have nothing constructive to offer. As you may recall, I am 19 months beyond the melee, 19 months into stage 8. I struggle to recall the long, tough past days, but they are there, tucked deep inside my brain and heart. I am healed enough that I can say, with conviction, “Yes, I would do it again.”
I have no message, no advice, only encouragement and the hope that you know I am thinking of you and so many others on the forum who are in the throes of this awful existence. I am old (78); I know I am on borrowed time, so I try to make the best of the time I have left. I cannot wish away your heartache, your sadness, your regret at what is lost. I can only promise you that there is “life” on the other side and hopefully, you will find peace and contentment once you reach the end. ❤️❤️

JoseyWales

https://alzconnected.org/discussion/comment/228228#Comment_228228

Thank you for your kind words. They help. I know there will be an end eventually. Even now, I realize that I'm not in the worst of places because DH is being well taken care of where he's at, and while I visit lots, I also have the opportunities to do what I want. It's not like those LONG days when he was home and even getting more than 3 hours of sleep at a time was impossible.
I'm feeling better today. :-)