I hate my life!

JudyMorrowMaloney

I've been taking care of my DH who has FTD for 7.5 years and I've had it.  I've lived through his rage, his narcissism, have had things thrown at me, his accusations, his delusions, his hallucinations, his controling behavior, and his sarcasm.  I had him in MC a while and he got thrown out because "they couldn't handle him".  He has become more subdued now that he is in the later stages of this disease.  I'm seeing more physical decline meaning that he has balance issues, has constant fatique, is weaker, and has trouble walking.  He uses a walker now but even with that just a little bit of exertion, he gets out of breath easy.  On top of that he has an ostomy that I change every day. 

There is only one way to say this.  I hate my life!  I'm tired of being a caretaker and a wife!  I just want my life back!  I don't want to be a caretaker, a wife-- I don't want to manage anyone's Dr appointments, medications, or put up with someone's  noncompliance.   I'm 59 going on 60 , when do I get to live!  He doesn't like to be left alone too long so I can't see anyone.  I haven't seen a friend in a year!  I just want my freedom back.  I'll never get involved with anyone else again because I don't want to end up stuck in a situation like this again.

Thank you for letting me vent.

Berryette

Judy-  I hope it helped to vent your frustration.  I can relate in many ways to all the things you said.  I just keep praying and hoping that something good can come of all this pain.  On another note- and not to be nosy- but does your husband have a colostomy?  My husband has an ileostomy and is still able to manage the care of it- but I have often wondered how I will take that on when it becomes necessary.

MaryG123

I hate it for you too Judy.  Can you get some respite care?

Rescue mom

I know the feeling. Have you looked at MC again, since he’s progressed, or maybe other different MCs? At least you did it once (placement), which is a huge hurdle for many people. Maybe now he can go back? And, different MCs can handle different levels of bad behavior. Or, could he qualify for SNF, with the osteomy and other things? 

Support groups are other safe places to vent…

Dio

Judy-- I feel your pain. I think many of us feel your pain and have had similar reactions. There was a time I went to a very dark place at the onset of his meltdown. What pulled me out was old photos of our happy times, remembering the man I fell in love with and how he took care of me when I was sick, seeing all the wonderful places we've traveled to, and ultimately feeling blessed for what we've shared. It isn't easy. I still dread the day his condition declines. However, the reminders help get me through the day.

Lills

Please don't judge me for being Pollyanna.

I was the sole caregiver for my DH for 10+ years.  He had FTD and ALS.   Believe me, I understand the need to vent!  There were times I begged God to take him.  

My DH died in April and I would give anything to have him back--even if he came back with FTD!  There isn't a minute I don't think of him.  

Ed1937

Lills wrote:

My DH died in April and I would give anything to have him back--even if he came back with FTD!  There isn't a minute I don't think of him.  

Lills, I understand exactly how you feel. I feel the same way about my wife, although she did not have FTD.

Judy, it doesn't matter what other people think. You have to do what is best for you, and it sounds to me like MC is the answer. It really sounds as if you've reached your limit, and that's understandable. Please take care of yourself first.

 

jmlarue

It's too easy to say we should take care of ourselves first and that MC placement is the easy answer to our torment. The sad truth is, there isn't ANY facility I've found that's willing to take on the care of a raging psychotic. Convince me I'm wrong.

sandwichone123

JMlarue, he's not raging any more. He's short of breath. He's fatigued and has a walker and an ostomy. He could be placed.

ImMaggieMae

Jmlarue, if you go to the Search feature for these forums and type in, “kicked out of memory care” or “kicked out of skilled nursing facility” or similar, you’ll be able to see hundreds of previous posts from people who had to deal with finding new facilities for their their loved ones after they were told they had to leave facilities for aggression, psychosis, wandering, etc. The threads offer ideas and sometimes solutions. It seems like facilities vary a great deal and perhaps change over time.

amicrazytoo

Judy,

I feel your pain, I wished the exact same for a very long time. My wish was granted, it's no fun on this side, but it certainly does not lessen the stress you are currently under. Please, please, please look into getting yourself some respite time. I will never forget the feelings of total isolation. I am so thankful for this forum, without it I would not have survived.

(((Hugs)))

JudyMorrowMaloney

Berryette, 

My DH does have a colostomy.  He had an ileostomy at one time but I personally had a harder time managing that than the colostomy.  An ostomy nurse can train you on how to change a colostomy.  Once you get the gist of it, you can have it changed in less than a minute.  Of course its a dirty job and stinks but what can you do?

JudyMorrowMaloney

MaryG123, 

I used to have someone come in once a week for 3 hours.  That was very minimal.  I feel like I need a vacation.  I would have to put him in a SNF for the amount of time I am gone and I can just imagine what I would have to put up with then.  His mouth is unbearable!  The insults, the filthy language, etc.  He fights me on everything.  Unfortuately he still knows where he is and can communicate his needs but when the day comes that he can no longer fight me on everything, he's going back to MC.

JudyMorrowMaloney

Thank you everybody for your feedback.  Getting respite and placing somebody in a SNF is easier said than done.  I had a bad experience with MC and home care.  I had someone come in for a few hour per week and she was good but she developed her own health issues and had to resign from the agency she worked for.  Since then they have sent me people who did nothing but play on their phone, come late, leave early, or not show up at all and no notice.  The agency would apologize profusely but that got old very fast.  I don't have anyone coming in now because putting up with that crap just adds insult to injury.   Has anyone else had this experience with these agencies?    I'll have to do some due diligence before placing him into another MC.  The last one was horrible.  The place was a dump, they were shorthanded big time, the food was digusting, and I kept getting notices from Medicaid every week that the "co-insurance" was increasing.  One time when I went in there, I saw a prothetic leg just sitting on the floor.  I found out the person who owned it had died the night before.  That's pretty disgusting.  What did they think, that somebody else could use it!?  I wouldn't be surprised.

Well anyway, thank you for your support.

Berryette

Judy-  Thanks.  That eases my mind a bit.  You will stay in my prayers for peace and hope for a better day!

slippednfell

Oh, how I feel your pain...

I am so sorry you are going through this.  I am a couple years younger than you and my DH is 68.  His decline has been really rapid, leaving me with whiplash as I try to keep up.

I'm experiencing the same delusions, instigations and violent behaviors.  As I am typing this, he is outside, probably wandering down the 1.5 mile dirt road toward the highway... Neighbors brought him home twice in the past, so maybe someone will.  I will eventually get in the truck and go get him and bring him home unless the bear gets him.

I am handicapped and have to use a scooter to get anywhere, even in the house.  I agree... I will never get hooked up with anyone again... I won't be in this position ever again.

He just walked in... good deal, I guess.

Two things:  A nap seems to reverse his aggression and it can always be worse...

I hope you can find a way to get a few days away from your spouse for your own sake.

Oh, and my mother has had care givers come in to her home.  One stole her mother's rosary.  One stole cash out of her bag as she was showers.  One stole kitchen items.  Finding a good caregiver/aid is difficult.  I am lucky, I have one that is wonderful and has even house sat for me.

I wish you the best and I hope that you find some solace in one form or another.

pennyloafer2

HI Judy,

I feel like you said exactly how I have been feeling! I am 65 going on 90.

This whole experience has sucked the life out of me. I want my old life back when we were close. We would play ping pong for hours and laugh the entire time. We were always on the go doing something and now we do nothing. It's the loneliest I have ever felt! Your not alone because there are many of us in the same situation.

Rescue mom

People often say one of the biggest, most cruel thing about this disease is that it doesn’t just destroy the life of the patient, it takes the partner with it. I’m working hard with hopes of having a life later, but I wonder more often if I’ll last that long.

Ditto to pennyloafer.  I’m also younger, and under normal circumstances I should have maybe 15 good years ahead. But they’re fast being spent on caregiving. Yes, there are many good memories. Having to settle for that, at this point, isn’t very satisfying. Don’t tell me DH feels bad too, by all signals he is happy as a clam, unless I’m not here.