im angry all the time

joytoy

my boyfriend has vd  when he started in this journey 3 yrs. ago i wanted to help mainly because i felt it was my responsibility as his girlfriend.  he has 3 kids none of which are a help.  i am now at the point that i want out but there is no one to take my place.  how in the world could i ever pack my belongings and just walk away.  how cruel that would be. i know the kids would have to do something  i just worry about him so

loveskitties

Get in touch with your local adult protective services.  They should be able to offer assistance in either getting his children on board to help or in getting your LO help.  

If you have no legal standing in dealing with his medical or financial business, you can't help him to the extent he may need.

Buggsroo

Hey Joytoy,

I can relate to your feelings of anger. It is a horrible disease. I have to keep reminding myself it isn’t my husband’s fault that he has this disease. After being called Warden, effing idiot etc., it does get wearying. I think calling Adult Protective Services would be the way to go. Good luck.

abc123

Who will take care of you when you are totally worn out from caring for him? Anyone? It will continue to get harder and harder to care for him. You could call APS for guidance and suggestions. You are a good person to want to help him but please think of yourself too. Seriously, who will help you, his kids? I wish you well.

Gig Harbor

Imagine what would happen to him if you suddenly got sick and had to be hospitalized. His kids would get a call to come and get him and they would find placement for him. They will ultimately have to do that since you don’t have the legal right to do anything. He is only going to get worse so maybe plan your exit now. It does sound cruel but you have to think of yourself. You have already cared for him for a few years so you have done your part. Good luck but please do not feel guilty for anything.

Paris20

Joytoy, you’ve done more than anyone would expect, given your relationship and the fact that there are children who should be stepping up. You have every right to be angry. I just want to relate a story that has been my warning while I care for my husband.

My mother’s brother had early onset Alzheimer’s. He extracted a promise from his wife to care for him until he died and to never place him in MC. She kept her promise but it cost her dearly. I remember talking to her when my uncle was in steep decline. She said to me, «I hate everyone. My life is miserable. I wish I had never made that promise.» 

I never forgot that conversation of more than 25 years ago. I vowed that if I were ever in the same situation I would never make that kind of promise. After my uncle died, my aunt had a couple of years to recover but then she was diagnosed with dementia. Her kids soon put her in a facility. No good deed goes unpunished.

Jeff86

Paris20 wrote:

Joytoy, you’ve done more than anyone would expect, given your relationship and the fact that there are children who should be stepping up. You have every right to be angry. I just want to relate a story that has been my warning while I care for my husband.

My mother’s brother had early onset Alzheimer’s. He extracted a promise from his wife to care for him until he died and to never place him in MC. She kept her promise but it cost her dearly. I remember talking to her when my uncle was in steep decline. She said to me, «I hate everyone. My life is miserable. I wish I had never made that promise.» 

I never forgot that conversation of more than 25 years ago. I vowed that if I were ever in the same situation I would never make that kind of promise. After my uncle died, my aunt had a couple of years to recover but then she was diagnosed with dementia. Her kids soon put her in a facility. No good deed goes unpunished.

Teepa Snow has a video in which she warns caregivers not to make that promise.

Cynbar

Being a caregiver on the dementia journey can be a soul crusher, and that is for someone with a lifetime of good memories to sustain them. I can't imagine doing it longterm for someone you have a more casual relationship with. You are not married to this man, probably don't have any legal standing or financial connection. It isn't your responsibility, although I'm sure his kids are happy to let you do the heavy lifting. Talk to them now about a longterm plan for their dad, and your exit strategy. Does he have a medical and financial power of attorney appointed? If so, that person should take the lead. Make clear to them that you can't do this much longer. It is not cruel to move towards a safe living arrangement for your boyfriend that doesn't include you as caregiver. Do this before you totally lose it and walk out, which would be cruel. You don't have to continue in this role.

eaglemom

I am sorry that you find yourself in this awful position. You've received some good suggestions. You can also call the ALZ Helpline 800-272-3900 for information.

eagle