How in the world do I handle all of the emotional and physical stress of dealing with my husband's dementia without help from any family?

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I love my husband very much, but get no help from any of his family or mine in his care in any way, shape, or form. I never get a break. I never get a nap. And when I "complain", which to me is just basically crying out for help because I am so exhausted that I cannot even focus on normal every day things, and also have a 14yr old daughter who is having emotional issues, I am pretty much viewed as lazy, incompetent, or just down right selfish by his family. I also deal with his ex wife who is constantly harassing my husband mentally and telling him to divorce me because she wants to gain access to his finances, and I will not allow it. She already gets $800 monthly in child support, $500 monthly in alimony, and is able to claim a portion of his social security due to his 100% service connected disability. I recently re-did my husband's claim and discovered a mistake the VA had made, and it increased his benefits by nearly quadruple the amount he was previously receiving. Since then, it has been nothing but drama and chaos with his ENTIRE family trying to get their hands on "their fair share" of HIS money when he doesn't owe anyone anything. He has a very SEVERE case of dementia caused by a brain injury due to a hemmoraghic stroke while serving in the U.S. Army, and it also left him legally blind. I first came to be his caregiver, but have known him since we were 16 yrs old...we used to be H.S. sweethearts. I just married him in August of 2011, and like I said, every since, it's been nothing but trouble with his family, but especially his ex wife who has since the adjustment in his claim, stressed him out emotionally so much that he has become delusional and is currently in the mental ward at the Houston VA hospital for the 3rd time since August. She is trying to convince him that I am trying to kill him and telling him such horrible things such as I am trying to poison him, etc., and in turn it made him start refusing meds which he desperately needs...ESPECIALLY his anti-seizure medications. I am frustrated, and do not know where to turn for help. The VA only has limited resources and there is nothing I can do legally except file for legal guardianship so that my husband is better protected. I have only found one class/group in Alvin, TX near Brazoria county where I reside that even offers any support group for care givers. I feel completely alone and isolated. I have no life...and feel as though I am fading fast. I also have health issues of my own. I have a heart condition called Atrial Fibrillation, and it has worsened in the last several months to the point that I sometimes am getting out of breath even just walking across the room. My husband loves me very much, too, but his ex wife uses her children as leverage to play on the guilt he feels for his disabilities and not being able to be the father he once was. She does it full well knowing what a toll it will take on his mind, and then in turn, he gets his thoughts so mixed up, he has violent outbursts, with the last one being where he completely flipped out and was taken to jail for interfering with public duties and then kicking out a Patrol Car window. It has gotten so bad with his ex harassing him that I can no longer even live in the same household as my husband because on my daughter's 14th bday he tried to attack her and choke her. So I live in a separate household and travel back and forth daily to care for my husband and take him to his many appointments at the VA. His family and his ex wife try to make me out to be some horrible monster when all I want is for my husband to have peace of mind enough to live a comfortable life. My 14 yr old also has mental issues and is currently in a treatment facility for PTSD, and has severe emotional outbursts due to trauma from her childhood. So it is very hard for me because I feel as though I am being ripped apart by two of the people I love the very most in life, and there is no one here to help me do any of it! She was sexually assaulted from the ages of 3 to 11 yrs old without my knowledge of it until she began acting out when she was around 12 yrs old. So my life right now is a roller coaster, and I feel like if something doesn't give soon, I will be the one who needs a long term treatment facility to help ME cope with all of this stress. It is entirely too much for one person to bear! I just don't think I can handle things much longer! My house is a complete disaster and I myself am un-kept just because I cannot seem to muster up enough energy to do ANYTHING but worry constantly about my husband and daughter, and I am always on the go...doing things for them, taking care of them, making sure their needs are met, etc. CAN SOMEONE OUT THERE PLEASE JUST GIVE ME SOME GOOD ADVISE OR WORDS OF ENCOURAGEMENT? I AM TRULY FEELING HOPELESS AND JUST PLAIN EXHAUSTED!!! I have exhausted myself in researching and making phone calls to see if I can find a solid support system,too, but to no avail!!!!

Answers 1 to 10 of 10
Oh and I forgot to mention that his family only offers to help if I PAY THEM! Even his own MOTHER! I mentioned to her the other day that I may have to hire a housekeeper because I just could not keep up with things in TWO HOUSEHOLDS, and she said, "Well, keep my in mind if you do...I could use the extra cash." No one even comes to visit my husband or calls him unless they want is very sad and it ticks me off! I should NOT HAVE TO PAY HIS FAMILY MEMBERS TO COME OVER ONCE IN A WHILE AND VISIT OR TAKE HIM ON AN OUTING ONCE IN A WHILE SO I CAN MAYBE TAKE A NAP!!!! husband is only 42 yrs old...and the stroke happened in 2003...PLEASE...ANY ADVISE WOULD BE HELPFUL! I AM AT MY WITS END! =(

You are not alone here. Many caregivers experience this while caring for their elderly loved ones. I have attached article that can provide great insight while dealing with this problem. Also, read the members comments below (and feel free to comment). You will find many other caregivers similar stories.

Family Won’t Help With Caregiving? How to Change Their Mind

Hope this helps.
Karie H.
Thanks so much for that link. I am not only dealing with my 42 yr old husband that has severe dementia due to a hemmoraghic stroke which caused brain injury and blindness, I am also dealing with my 14yr old daughter who has emotional and psychological issues due to PTSD from childhood trauma. ANY info I can get on any type of support is helpful.
Top Answer
Christy, talk to your daughter's school guidance counselor. They know all kinds of places for social services support. I think, from reading the paper, that many have been cut in your state, especially. But the counselor will know what's possible, and how to navigate the system resourcefully.
You truly are torn between two people who are counting on you. There are services the VA has for caregivers; perhaps, since you were able to navigate the VA system well enough to get your husband the additional benefits he deserved, you might already know about these.
This last suggestion I offer with all humility. I know you met your husband as his caregiver. Is it possible to use some of his money to hire a caregiver for him, while you focus on your daughter? It may be that you have to do some triage here, for a while, till you get more balanced. All three of you are in an acute need situation. You can't keep trying to help all three of you; that isn't working. Arranging for care for your husband, while you focus on your daughter is a way to get some care for both of them, and lessen your burden for a period of rebalancing. You will also get some nourishment from seeing more healing in your daughter.
Whatever happens, know you aren't alone. His family is his family; it sounds like this looking for money out of the situation is something that's a long-term behavior. Don't waste more time and energy trying to change it or wish it away. It's not going to happen. It won't help now to be "right" about things. That just uses up your spirit. If there is anything being a caregiver has taught me, it's that.
I send you love and good vibes. Jane
Christy, I searched & found a therapist who assistant helped me fill out paperwork for many diferent agencies I had to answer to. I made friends with others at the State VA Nursing home & found some have the same issues I have. I also found this little cofee shop in an old book store where I can talk or just sit & cry when I need to, or watch TV. Altho my husband cis in a nursing home I lost all my family & know about the spitefulness of resentful people in our family. I always assumed that after 44 yrs these kids would grow up to be adults that would show their love & respectfor their father. But if it hurts me by hurting them thats the way they go. So altho I have no help for u I do want u to know u r stronger then u know, its there. Stay in touch. Carla
sorry that word 'them' is supose to b him in that last comment
Check out Aid & Attendance benefits from VA if haven't already done.
Husband's dementia is probably PTSD. There are medications that help(Won't go away, but controlling it sure helps).
As for husband's family - forget about them.They've probably always been like this. It's now about them. Since they won't help (been there - done that) , it's about your husband, daughter, and you. Check out the Commission on Aging for your state - since husband's is disabled, many of these services should be provided to him as well.
What hits me is that you are trying to please everyone... if I am being cold... I am not sorry... leave his family in the dust!!! "Shake the dust from your sandles and move on"... Jane above has the perfect idea... do not involve his "old" family in any way, shape or form. Do not inform them of events or updates. Hire the help you need from the care services around you. A adult day center, the VA hosp workers. If it is one thing that I learned when my father was alive and then passed was that the VA is NOT going to announce, give advice, explain or involve theirself... you must struggle to ask the right questions, find the right experts, ask for what your husband deserves even if it is not something that is offered through the VA.. it will open up avanues to other sources. You have got to stick to your guns and salvage your life. You must prioritize the needs of you, your daughter and your husband. If you have the funds to hire a caregiver and or housekeeper... great!!! If you have to choose where the funds will better be spent.. I would go for the adult day care or caregiver. You have to open the door somewhere so you can prioritize your daughters needs and welfare. Your husband seems to be in good hands with the VA... I would deffinately consider getting a "conservatorship" or custody of your husband. This should be very defining for the extended family and you would then open avanues for say... legal distance and restrain. You are his legal wife.. that gives you top position in his life. I would wonder if you could not go to court with the alomony issue and see if that is a retroactive poss. He is on a fixed income. He is needing more medical and psycological care. If anything maybe the alomony could be switched from the x wife and made to be put into trust for your daughter who is in great need at this point. All I know is that the "x" anything is not "ANYTHING" to him but an "X"!!! You need to put you first, your daughter second and use the funds that you can easily use to get outside help for your husband!!! I know what you are going through sister!!!! People can be shallow and dirt.. and not care for anyone but theirself!!!
Christy, I am SO sorry for all of this, and I understand, as my husband has a dementia illness and the only help I get is the aides I hire - no family help. Please check out the Well Spouse Assn. for spousal caregivers - There you will find many resources and much support for spousal caregivers. There is an online forum, and face-to-face support groups in many areas of the country. Sending you hugs and hopes for better days.

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