I'm angry

JoseyWales

Always. It's been this way for years, ever since we first started looking at the why for DH's memory problems. I think that's been 11 years now.

I'm angry with medical professionals who refuse to recognize dementia in younger patients. 

I'm angry with medical professionals who pass us around, because DH is YOUNG and it's a complex problem. At least that's what they tell me. He has no other medical issues than the dementia. Dementia is complex. Or so they tell me as they push us off to someone else.

I'm angry with people in DH's family who don't even contact us anymore, after saying they'll be there to support me.

I'm angry FOR DH as he paces the house and cries. 

I'm angry at the professionals who say they'll help, then don't get back with me for weeks.

I'm angry at Covid, because it slowed DS's school momentum, and he's now dropping out of college.

I'm angry at winter, because we can't leave the house, which leaves DH to pace and cry inside. 

I'm angry at society for its hate of teachers. I can't turn around without someone telling me that my 3 college degrees mean nothing, and I can't be trusted to know what to teach.

And I'm angry that I have no time for myself. Ever. For years now. And I imagine for years more. Don't tell me I'll get my life back.... my life has been shattered. 

dayn2nite2

I'm sorry, and I'm not going to invalidate anything you have said by telling you it'll be better.

And I'm not going to lie and say you'll get your life back later because you're right - it is shattered and whatever you get back later is pieces of a life with big parts missing and it's not anything like you had before all this.

I agree that there is a huge void when someone is young and has this disease - everyone (medical professionals) tell us it's depression, it's this, it's that, everything but what it is!  We see it, we write down lists of things they do, then we're told oh yeah maybe it is...and off we go to yet another doctor and still nobody will say the words.

It's a cruel disease.  For the person who has it and especially the people who take care of them.

I sure didn't mean for such a glum response to you, but nothing you have said is untrue.  All of this is a sh*t sandwich and we have to eat it every day.  I at least wanted you to know you are heard and understood here if nowhere else.

And all the people who say they'll help and don't (family and professionals) can go to you-know-where.

JoseyWales

Thank you dayn2night2. You heard me right. 

I appreciate no flowery words. I get angry with those now, too.

I especially get angry with all those well meaning people who say they think about us or pray for us. I know they mean well, but they're not living this. I don't wish it on anyone, but I'm mad it's ME.

Ed1937

Josey, I'm sorry. It's not fair, and it sucks, big time. We never had to deal with early onset, but I know those of you who do have a special set of circumstances. You have a right to be angry. And I'm sorry it doesn't seem to be getting any better.

PlentyQuiet

Josey,

Yes, just yes. Yes to everything you said, everything you are feeling and all the struggles. 

I know that anger, the pointless yet overwhelming anger.

 There are times when I deliberately avoid people or situations because I can't stand to hear "your DH is being so brave, so strong. Have you thought of essential oils? Or Reiki? I know that would help". 

Sure, people mean well, but  I find it intolerable.

I'm 50, I have older teen children and my life, as you aptly stated, has shattered. 

It's -10 degrees here, again, in Minnesota. I hate Covid.

But I can't imagine trying to work, and as a teacher in the current environment, while dealing with all of this. And to be doing all this for 11 years. I'm so sorry.

LadyTexan

Dear Josey.

I hear you. I am mad with you. I am sorry that I can't change your circumstance or help in any way. I want to scream for you. 

You are an amazing human and incredible mother. You are selfless in your great care and love for your husband. You are committed to your students and your profession.

It is so unfair and so distressing that others such as unhelpful medical professionals and absent family, are making your journey even harder than it already is.

You are special to me and you are loved. 

Beachfan

Josey,

I agree with Ed and dayn2nite2.  You have much to be angry about and are justified- - everything you say is true. I know you don’t want to hear flowery wishes and shallow words, but I honestly hope and pray that placement for your DH occurs sooner rather than later.  My DH is older, I am older, I am retired, my kids are grown and on their own, my DH didn’t present with one iota of the problems that you deal with on a day to day basis; I marvel that you keep hanging on.  Placing DH in MC was a hard decision, but an easy process.  I don’t expect to get my life back, but the bits and pieces  are falling into place little by little.  You are heard and understood.  

JoseyWales

Thanks everyone. Sometimes admitting you're angry and telling the universe does good things.

I got a call from the "care coordinator" working with me from the hospital. There is a place that may be able to take him yet this month.... and it's one that I like, even though it's a little over an hour away. 

I'm not feeling so angry right now.

Fairyland

That is so good to hear, fingers crossed it starts moving in the right direction for you!

You struck a chord with me, I don’t have a fraction of your problems but still feel like my own life has not just been put on hold for nearly a year now, but rather my life has been ended by dealing with all the worries and consuming stresses of caregiving. 

Even if it all miraculously resolved really well for my LO tomorrow, and I was set free (ain’t happening!),  I wouldn’t be able to think of anything I want to do with myself except curl up and die. The things I used to fill my time with, seem like a ridiculous waste of effort. It feels like a permanent state of apathy about everything. 

I hope that people can generally find ways forward for themselves but hope mostly seems too far out of reach these days.

Ed1937

Josey, I'm praying that he can get in there. You have been through much more than enough.

Buggsroo

Hi Josey,

Righteous anger here and I get what you are saying. I find myself ticking along dealing with the crappy situation and then boom out of nowhere I feel my brain explode. I honestly look around the room to see if my parts all spattered on the walls. 

So no, no chicken soup for soul from me, thanks for your honesty. As for those who say they will help and then radio silence, a pox on them. I used to teach English and French, my gawd I realized real fast that I didn’t have the temperament for it, so big respect to you as a teacher. 

I have a problem with medical professionals who don’t get back to you, feel like dropping off the husband at their place and manically yelling  “deal” as I run down the street.

Here’s hoping things get better soon.

markus8174

JW,

I was so blessed to have a primary care doctor who was willing to try anything that may have a potential to help. Unfortunately, ignored by the health care team, or managed to the hilt, I'm not sure we ever did any good in holding back this monster that devoured my DW. Perhaps we gained a few better months, but in the long run the desperate scramble for anything that could be of benefit did little besides assure me that everything I could have tried was tried. 

As to family- if I never heard from most of them again that would be OK. Casual updates, and an occasional text of: "hope things are good with you", is just the right amount of contact for me after they abandoned their mother because it was "hard to see her like that.". It's hard for me to see her crying in pain because she doesn't understand what happened to her kids/grandkids. Anger and sadness seem to be the legacy these diseases have given to us care givers. I feel your pain, I just don't know any way of fixing it besides to say you are right. 

CStrope

Josey, I feel like I could have written your post, even down to the frustration with how teachers are treated and DH crying. (DH was a teacher for over 25 years)

You have a right to feel angry.....we all do.  Hang in there!

PlentyQuiet, I commiserate along with you about the weather....I'm just over the border in WI

JJ401

Josey, I read you post and I am angry with you. You’re staring into the tunnel and what you see is not the light at the other end, but the Alzheimer’s train bearing down. 

Continue to vent here as needed. It does help to get it out into the universe. 

abc123

Josey! You nailed it!

Crushed

JoseyWales wrote:

I'm angry at society for its hate of teachers. I can't turn around without someone telling me that my 3 college degrees mean nothing, and I can't be trusted to know what to teach.

As a University professor I served on many K-16 committees.  My wife and daughters (the lawyer , the physician and the Scientist)  are all public school graduates

TEACHERS ARE THE BEST  

We get the output and we know how hard you worked
 Thank you

Joe C.

Josey, Glad to hear the care coordinator made contact with you and hope all goes well getting help for you and your husband. You have every right to be angry at the entire system that offers little support.

DrinaJGB

Josey---I second every emotion of frustration, anger and total and complete exasperation you have expressed here. At times I have to just get in my car, drive around with the music blaring---and scream. It looks crazy to anyone who might happen by and witness it I suppose, but it does keep one sane.

As for those seemingly concerned and oh-so- well-intentioned family members/"friends"-- who only place an added burden on the entire situation---I am tempted to include in DH's obituary (should I indeed survive this dilemma before he does)--"and to those who have stayed away----we thank you, too."

Because, frankly, who needs them?

Carry on--dj

piozam13

You are so right to be angry.  Life isn't fair - and we've been the victims.  I don't if there'll ever be a rainbow.  We are with you.

Dutiful One

Josey,

You posted my feelings. I get it. I don't post here often, but do read and find a great deal of comfort and validation. 

Most of the time I feel like the Hulk. In one movie the superheroes are all battling some enemy, trying to get Bruce Banner to turn into his alter-ego by provoking him. Finally one says that "this would be a good time to get angry." He responds by saying, "That's my secret. I'm always angry." Some days, cool, confident, in control, even hopeful, but the Hulk comes out and there's no stopping it. Eventually the anger burns out and the hope returns. For me, it's like living life on a yo-yo. 

Thanks for speaking your feelings. And the teacher issue? I hear that, too.....sigh.

storycrafter

Thank you for expressing it, Josey. You said it for me, too. The medical system failed us by refusing to name it; exacerbating and creating more profound and permanent secondary effects of early onset no one could imagine unless experienced it themselves.

I cannot imagine how you're coping at an even younger age than we were. The pandemic has made it so much harder. Bless you for being a teacher! If my wishes could reach you, you'd be surrounded by helping angels carrying you all the way. Wishing you ease and support....

loc3762

Hi Josey.  Can I add to your list?

I'm angry that pharmacies can't get prescriptions correct.

I'm angry that the Office of the Aging (in my area) can't even put me on the reprieve" list because the list is already too long.

I'm angry that COVID has caused a healthcare shortage and I can't get anyone in to help with my bedridden husband.

I'm angry that friends say I need to take better care of myself but don't offer to stay with DH.

I'm angry with the Alzheimer's Association for using our unpaid care for their benefit.

I'm angry that we have been on this road for 13 years and we aren't any closer to a cure.

I'm angry and I want this to end, then I'm angry for thinking such thoughts.

I guess I'm just angry too.