My husband lost his vision due to an aggressive form of glaucoma that did not respond to treatment. At first he experienced Charles Bonnet Syndrome hallucinations and that kind of masked his cognitive decline -- or I was in denial? He's now in severe cognitive decline with full-blown hallucinations, visual and auditory.
I'm in declining health with congestive heart failure. The blindness and dementia seem to amplify each other. I have not had a break at all as his sole caregiver. He needs my help with EVERYTHING and he fights me to the point of becoming aggressive, sometimes even abusive. He doesn't know he's doing it. He's physically strong as an ox and I do not have my former physical strength or stamina. I'm frail.
The only thing I've done for myself is set up grocery delivery. My husband is a veteran and I am completing the paperwork to get him (hopefully) into the VA healthcare system. I don't know what to expect for costs, as I'm sure we're over the income limit. He's a Vietnam veteran, which I believe now has a slightly higher priority than before. He was exposed, like most, to chemicals, x-rays, and oil burn pits.
I've read how hard going to respite care is on the person with dementia and re-entry to home challenging. I feel guilty asking for help. But I know I need to make arrangement as he could very likely outlive me even though I'm 13 years younger. Caregiving has taken a huge toll on my health.
How difficult is it to get into the VA system and the care needed for my husband? And how expensive, if there are co-pays? Anyone with experience in this area? Thank you.
You are not capable of continuing due to your health.
Insisting on doing this may well kill you.
Where would that leave your husband? In the care he should now already be in.
Please get hubby placed as soon as you are able.
As you can well imagine, that is on you and whomever can/is willing to help you or can be HIRED to help you.
This is critical.
Guilt is out of the question and should honestly not be something you tell yourself. Words matter. We convince ourselves of things. We want to blame someone and at times the only ones we come up with TO blame is ourselves.
1. Guilt REQUIRES causation.
2. You didn't cause this
3. You can't fix or change this.
The word you are looking for is the "other" g-word which is grief. Your heart is breaking. You aren't a Saint or a God and you can't make these problems go away.
Standing witness to this pain and loss and grief is hard. Tear and rage are the norm and should be allow; if this isn't worth the grieving then nothing on earth IS.l
I am so sorry. I hope there is family, friends, faith-based community, SOMEONE to help you now. Truly I am so sorry and hope you'll update us.
It's difficult to get into the VA system depending on where you are. and I'll tell you he won't get into a veteran's home unless his glaucoma-related blindness and cognitive decline are directly related to his military service and there's medical proof of it. You can try, but have a Plan B too.
If you put him in a nursing home (memory care probably won't be an option if he needs skilled care) your lifestyle won't change all that much. If you're dependent on his income as his spouse, Medicaid will be reasonable to you. You will not have to vacate your house if you own it and he's placed either. Medicaid is a lot more reasonable to deal with than the business end of a nursing home.
A good place for you to start is by having a consultation with an attorney who specializes in elder law and estate planning. They will help you plan.
The VA System is terrible, Your income doesn't matter for VA Medical. If your husband is a war veteran he is entitled to it, unless he had a dishonorable discharge. Find his form DD214 (he got when he was discharged from the military) and make copies. The VA Emergency number is: (800) 273-8255. You can call them and ask what to do, but don't expect much. Especially since Trump just had 2,200 VA staff members fired from the Dept. of Veterans Affairs. When I called them 3 yrs ago they were useless. I took him to the nearest VA Hospital (he already had VA Medical) and was told to "make appt and come back" and I did not leave until I got an appt.! He doesn't need VA Medical to help him, I have found civilian doctors helped mine the best!
What doctor has been treating him for his glaucoma and possible dementia/hallucinations? Does he refuse to go to doctors or Urgent Care nearby? They will have him taken to the nearest ER for you. Does he see a regular Doctor at all? First you contact that doctor, and tell them he has gotten delusional and violent, and you are afraid. He must have a primary doctor, since he must already have Medicare, being over 65.
Don't worry he may have a "hard time adjusting to respite care" when he could easily hurt or kill you! You need to call 911 the next time he acts up, and tell the police he needs to be escorted to the ER, since he has become violent and you fear for your safety!
The ER will figure it out. He needs to be diagnosed currently, before he seriously injures you. You cannot do this all by yourself anymore!
DO NOT FEEL GUILTY. It's not your fault he got glaucoma. While you apply for VA Healthcare, his Medicare pays for his treatment. VA Healthcare does have co-pays and not the best doctors. Get this current emergency situation under control with civilian doctors first. When he gets on VA Healthcare, it will take more doctor visits with them next. It will take several visits to get any help from the VA. I had no help either, since he wasn't as disabled and sick as yours is.
After your husband gets diagnosed (by VA or civilian doctors) then you can start asking them to order him Home care nurses to come a few times a week, so you get a break. You can find a Certified Veterans Service Officer (VSO) in your County to apply for VA service compensation money next. Until you get a current diagnosis, the VA won't do much. It will take a month or so to get him seen, referred for CT scans, MRI, blood work and more. About 4 visits minimum to get an updated diagnosis. My VSO told me vets shot in combat (and have Purple Hearts) don't get anything from the VA. Unless you know exactly how to get their complicated paperwork submitted by all their deadlines, you get nothing. It took 7 forms, a Zoom interview with VA Doctors, meeting with an VA Interviewer, plus all the medical tests needed, by various specialists. If he hates seeing doctors, or refuses to cooperate, you are going to have a hard time. He may need to be placed in Skilled Nursing or LTC because of his complicated disabilities. You simply cannot cannot handle this pressure alone, especially with CHF. He needs proper meds and healthcare plan if he wants to live at home. It can't be all you, all the time. He needs 24/7 care and one person cannot do it all. Especially with his level of dementia, he is dangerous.
I wish you strength to get this situation under control as soon as possible. You need to take care of your own health too.
However I’ll tell you how good respite care was for my MIL (let alone for her carers). She had a large single room, with sunshine and a pleasant view. It was close to the entry desk, and the staff dropped in quite frequently for a quick chat with this new person who was quite able to chat sensibly. MIL really liked it, and at the end she decided to make it permanent. This is just so different from the horror stories you seem to have heard.
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