I am a 23/7 caregiver for my 84 year old spouse who has been diagnosed with frontal temporal lobe/vascular dementia - as much as this can be accurately diagnosed. Because we are married, this presents with so may complicated problems. Much of the time he does not know who I am, which is not, in and of itself, hard to deal with, as he often thinks I am his first wife and has difficulty recognizing other family members. I do not sleep in the same bed or room, as his incontinence, though I use every bedding option and expensive, extra absorbent disposable underwear, is something I cannot deal with, having wakened in a wet bed too many time. I sleep on our sofa. He often wants me to stay with him and will become very agitated if I do not, so sometimes I lie down until he falls asleep. This usually happens very late - 10pm to 3am. I am so tired that I sometimes do fall asleep, but then leave and return to the sofa. I always rub his shoulders, arms and kiss him goodnight, saying "have a good night's sleep and I'll see you in the morning."

Here I will admit that after nearly 4 years of this, and about a year now of increased agitation and violent physical behaviors toward me, including name-calling and hitting, I am no longer able to feel anything but pity for a man I once loved fully, totally and passionately. It is also important to understand that I had an early childhood filled with physical and sexual abuse. The first time this man, who now bears no resemblance to the man I married, hit me, I was hit hard with PTSD. My fear rose to a point where I was paralyzed with it and the lifetime of counseling and learning to deal with my past was wiped away in a second.

I know that there are moments of memory of the life we had before this insidious decease that give me joy, but my sheer exhaustion is so deep that I truly no longer want to be in this world. There is no money for respite care-period. And friends can no longer help because of the intimate nature of his daily needs. He does not qualify for any type of assistance with his medical and supply needs thru the VA or other programs. His monthly expenses with co-pays, multiple ambulance trips and everything else, amount to nearly $900. I have now been advised by two social workers to file bankruptcy, but to go ahead and apply for medi-Cal so that if he falls-(twice this morning, but no injuries), he might finally qualify.

I could go on and on, but you get the picture. I hug him when he begins to be agitated, I try to soothe, I try to follow all of the tools suggested, but the constant unrelenting anger and complaining, the violent behaviors, have worn me down completely. His grown children express concern, come to see him, (and of course on those days he is "up", and they always remark "dad's doing so well, don't you think?" I want to scream at them, "NO! NO! He is not doing well at all! What you are seeing is not how he is every day and night! We had to sell our home "as is" because we had no way to do needed repairs, and moved into a small apartment to save money, in an old and very run down complex. The move was hard on him, though I did keep him away until the bedroom and living room were complete and looking as much like our home as possible, but it is still very confusing for him. He did not believe that our house was "home" and wanted and still wants to leave at any given moment.

And so it goes. So I am preparing to file the bankruptcy and so much more to do just to keep hope alive. And I realize that though he will eventually pass away from complications of this, life could go on like this for several more years. I rarely get to see or interact with other family members, my wonderful grand children who I adore and have always lived doing fun things with and for. We can't spend time with them due to distance. His kids do celebrate special occasions with him and I am appreciative of that-really, but I can't seem to convince them that I need their financial help and real respite help. They are in denial of the severity of their father's condition.

I am so sorry to read that things continue to deteriorate for you. I remember writing to your previous post that we, too are filing for Chapter 7 Bankruptcy. We will be able to keep our home which is important since it won’t sell.

Personally, I would not rely on his children for anything. They’ve already indicated they are in denial. I doubt seriously if they would be willing to help financially. Have you researched any aid as I previously suggested you do? Even the $15 we get from SNAP ( food stamps) helps us. There isn’t a lot of help out there, but there is some.

Finally, I would never tolerate physical abuse from my husband. When your husband becomes violent, call 911. Then don’t take him home from the hospital. Tell the social worker he is violent toward you and you don’t feel safe. Its drastic, but it’s the only way.
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Reply to Ahmijoy
She1934 Sep 19, 2018
Please see my response above. Thank you for you advice
Why would his kids get how bad it is, they have you in place doing everything! Until and unless they spend a few days, not a few hours, doing the caregiving there’s no way they’ll get it. Time to tell them you require a break of several days and they must come for that time. But the bigger picture is that no one should be hit, dementia or not. The very next time it happens call 911 and have him removed to the hospital and then refuse to have him come back. This is very doable and the only choice that will save your sanity and maybe your life.
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Reply to Daughterof1930
Ahmijoy Sep 19, 2018
I totally agree and said so much here and in other answers on her previous posts. My uncle had dementia and pulled a kitchen knife on my aunt. No one should have to tolerate physical abuse no matter what the reason.

“She” needs to pick a child and say she’s got to go visit a sick friend and she’ll be dropping their father off next Friday.
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Please consider Ahmijoy's advice carefully. My mother was 83 when she finally gave up care giving for my father with vascular dementia, in part due to the impact on my mother's health and his own agitated periods. It was almost unbelievable how much her health and emotional state revived in just a few weeks without all the stress. If you refuse to have him back home then the social worker will find a placement and a method to pay for it. They have to leave you enough money to cover your basic living expenses (rent, utilities, groceries).

You have given your husband a great gift of loving care for many years but his more demanding needs and your own aging means its time to pass the direct care giving off to someone else. Become his advocate, visit him, rub his shoulders and tell him you love him. Please do this before the man you have loved for so many years ends up being remembered for hurting his wife during an agitated episode.
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Reply to TNtechie

As for financial help from children - if they are able help, I would suggest that you make a list of all expenses, along with copies of receipts. Maybe seeing the depth of his expenses would help them realize what is needed. I would also tape a couple of his outbursts so that they can hear or actually see his behavior. You. Deserve some respite from him. My husband died four months ago. Even though our financial circumstances were not an issue, I did need a break from caretaking. My husband was generally very cooperative, never demanding or poor behaviors, but I still needed to get away at times even if just for an hour to go to the grocery alone.
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Reply to UsedupDIL

I can personally attest to caring for someone with frontotemporal dementia. It is truly one of the worst types of dementias due to the volatility, mood swings and potential for violence. Your life can be in danger in an instant since the person can turn violent completely without notice. My DH tried to commit suicide last year which (after calling 911) led to a period in a psychiatric hospital and then directly into a Memory Care facility. He was 100% mobile and strong, which posed issues for the caregivers on staff. It broke my heart to put him into a communal living situation but there was little choice. He was so NOT the person I'd married, loved and knew for 32 years. He also suffered from aphasia which meant all kinds of communication were not understood, nor could he express himself. He only lasted in Memory Care four months and I went there to be with him a number of hours every single day. I became his advocate and worked with staff to try and make each day a good one as best we could. This is one of the most heartbreaking things you will ever have to endure this side of the grave.
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Reply to RainyDay51
madzeena Sep 22, 2018
Rainy day,
Thank you for sharing your experience. My mom has frontal temporal dementia and primary progressive aphasia. She is in a Memory Care facility. Just wondering what you found most helpful in working with staff and aides?
I am so sorry your having to deal with this essentially on your own. My husband has been diagnosed with Parkinson's disease for 6 years and is now bed ridden and has to have complete care. After a scare with high blood pressure, I decided it was time to take care of myself first. When my husband becomes abusive I'll tell him I don't have to listen to this and walk away. I could not take the constant complaining and false accusations he was throwing at me daily. I love him very much, but if I'm going to take care of him, I have to take care of me first and so should you.

Please start doing things you enjoy and asking for help. We have the same problem with his children. They show up once or twice a month and have no clue of what you're having to deal with daily. Don't feel guilty for asking or wanting to be with your grandchildren. You are important, too and it makes caregiving a lot less stressful. We can care for our husbands and give them love, but there are others that need our love too.

I wish you well and hope you will start doing more for yourself. You deserve it. One thing I have learned to do is every night and when I leave the house is ask God to watch over my husband. We think we are in control but we really are not. God has a plan. We just have to trust him.
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Reply to Summer11

Dear She,

Please try to understand that your safety and well-being are vital.

Even if you belief it is your duty to provide care and tolerate the abuse, if you become ill, injured, or worse - how would you take care of your husband?

And, if you can remember the man he was, would his former self want you to endure all of this?

Please also try to see that you cannot do this alone. It seems as though your “team” isn’t providing you with enough help or answers fast enough. (By “Team,” I mean doctors, the VA, family, social workers, insurance companies and hospitals). In my experience, I’ve had to be relentless about making the case for my Mom’s needs and my needs as a caregiver. I no longer assume that the Team has all the answers, and seek out other opinions from comparable or related-field professionals. This leads me to new answers and resources.

Remember that dementia is a disease. It is for purely financial reasons that insurance companies and Medicare will not pay for dementia care and nursing homes. So, while the “system” is telling you that dementia does not warrant medical/professional supports, it is absolutely an illness.

We as non-medical professionals are simply not equipped to do this alone. (If your husband had appendicitis, no one would expect you to diagnose the illness, take the diagnostic images, perform the surgery or provide the nursing care.)

My experiences sound similar to yours. I have learned that people are mislead by my demeanor and “put-on-a brave face.” They believe that I am coping and things are Ok.

Bear this in mind the next time you speak to your husband’s doctor or your own - the police who respond to your 911 - or the social worker.

You need to convey how bad the situation truly is. I understand that this can be hard, but it has opened more doors than my usual responses - A stiff upper lip and “We’ll be alright,” or -
“I see. Well, thank you for your time.”

From reading the posts, we are all cheering for you - don’t forget this when you waiver about making changes to support your health and safety.

I wish you all the best. Please be brave in taking steps to protect and take care of yourself.
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Reply to Gardens

As my husband literally steam cleans the carpet because of Doc’s incontinence issues...
One of the benefits of this forum is that as soon as I think I have it tough, a story like yours comes around and I feel really silly. You’ve awaken in a wet bed, four years, no money, no help...I just want to hug you. It’s gotta be so hard with it being your husband, we are caring for my father in law and it’s the slowest torture ever. It gets to a point where you have to be honest about what’s happening and the consequences to home life and the sanity that remains. Doc finally saw a dr who told us to bring him to the hospital any Friday we want, citing safety concern or mental breakdown and Medicare covers up to 21 days (but usually it’s only 3 days) and then they’re admitted to the rehab or long term facility where Medicaid picks up the tab. So we need to narrow down our options of homes, go visit, and get on waiting lists if need be. We are still not ready to make that call yet, and have not visited the homes yet, but we have to be ready to make the move when the moment comes. And reading all I’ve read here, I believe the time is coming when Doc will need more than I can give. Don’t give up on life because of your circumstance - it will pass and you will rise!
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Reply to CaringForDoc

I am sorry for everything you are going through. There are a lot of us caring for our husbands. It is not easy.

You’ve probably already checked, but the VA *should* provide some respite care even if your husband’s injury is not service related. My husband is like this and I’m able to get a home health aide for 10 hours a week, which would at least bring you a little relief.

All I did was take him to see his VA doctor and request help at home. I heard later that I could have requested to send him to a day care activity center instead, so you might have that option, too. If it’s difficult for you to get him out to see the doctor (yes, I know), then call the VA 8000 number and ask to speak with a social worker. They will look up his file and connect you with resources. If his injury is service related, he qualifies for much more.

Best of luck to you. By the way, I sleep on the sofa, too!
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Reply to JuliaRose
MojoMama Sep 22, 2018
I have been to the VA 5 times the last month trying to get a bit of respite help. For 6 yrs. have been 24/7 360 days a year caring for my husband who has dementia. I get a week off in July when his daughter comes down from up north. He is a Korean vet, 86, and I am 81. He has always used his outside doctor and not a VA doctor. To qualify for even 2 days of help via daycare, we would have to live on $261 a month after medical bills according to the VA. Turned down by Medicaid and VA for help because we are over the income limit. They do not take into account the flood from broken washing machine that wiped out the garage, broken plumbing that had to have our yard dug up, leak from hurricane Irma that is just now getting a new roof with $3900 deductable; storm knocked out electric and about $500 dollars of food in garage freezer had to be dumped, etc. It has cost a fortune this year and we sold his car to pay for some of it. Was going to be a gift to grandson..... I think I have spent thousands of hours calling, looking, asking for help so I could have a day or two relief. Unable to go see grandchildren and having them here is so hard it makes it worse. I am just so sick of talking about it now. I do say I am fortunate in the fact he is not nasty or mean, and it makes me sad to see him this way as we were high school sweethearts. God help all of us caregivers please, as no one else seems to want to.
I am so, so sorry you are having to go through this. I tried taking care of my mother for 10 months. Happened to look into the mirror one day and did not even recognize myself. Looked like I had aged 20 years, was limping and dragging one leg, was totally exhausted. Took her to the grocery store and almost passed out. I could not do it any more. I was circling the drain.

I found a memory care facility for her. She has Medicare but needed to get Medicaid. We got a Medicaid planner who helped her get approved for Medicaid. She pays half and Medicaid pays the other half. If not for that I would probably be some facility myself.

You cannot continue to care for your husband on your own. Forget about help from family. If they haven't helped you by now they never will. But, you best believe they'll be there with bells on their toes for the reading of the will to see what they will get! And shame on them! That's how this works, sadly. Family. HA!

You MUST take care of yourself or you will go down for the count. Your husband needs 24 hour care and you just cannot continue to do it. There is help. Social services in your community will have answers. Before going into the facility I was able to get in home care for my mom 16 hours per week for about $40.00/month through the county. She went on a list and her name finally came to the top. It didn't take very long.

Mom is doing well in the facility and I see her twice per week. A nurse practitioner sees her once per month instead of me dragging her out to see a doctor. She is happy and adjusted and I am happy having my life back. I can now enjoy my mother. We talk, laugh and I love mixing it up with the rest of the residents in the facility. Mom has made friends there and I Thank God for answering my prayers. Take care of yourself and be well.
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Reply to ZenZen

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