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.
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.
“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.
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.
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?
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.
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.
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!
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!
VA has a quick “Home and Community Care Based” application. The application can be completely filled out by a VA social worker if your husband is already in the VA Health system and had seen a VA doctor. If your husband is not yet enrolled in VA Health, do so online at https://www.va.gov/healthbenefits/apply/. ;Get him to a VA doctor ASAP and then at least once a year and you will be current in the VA system. You will no longer have to call the generic nationwide VA number, and will have more personalized referrals.
Keep calling your VA physician and VA Health numbers until you reach a decent referral to a local social worker who can AND WILL track and flag your case as urgent. Write down each phone call. Eventually someone will understand that you need help NOW. There are two programs that are quick to apply for:
1. Geriatrics and Extended Care https://www.va.gov/GERIATRICS/, and, 2. VA Home and Community-Based Services https://www.va.gov/GERIATRICS/Guide/LongTermCare/Home_and_Community_Based_Services.asp
For the latter, Dad’s initial application was approved within seven days (24 hours of care at home). That may quickly buy you some sanity time. The second application called “Veteran Directed Home and Community Based Care” (which can pay family members or can provide VA-contracted agency care) added another 26 hours per week once Dad went on hospice – but it took three months to approve.
In your case, you are in immediate danger and you should advocate for placement. The VA contracts with skilled nursing facilities for placement when medically necessary. I didn’t know that and presumed all veteran placement had to be in a bona fide VA Home, all of which have huge waiting lists. That is not the only option. If home caregiving is not an option (and it shouldn’t be if you or he are physically in danger) – try the placement options in the Geriatrics link above.
Please reach out aggressively, and find a VA physician and social worker to help you. VA physicians know which social workers are good. Especially take good care of yourself in your home until you can get the help you desperately need. Lock your sleeping area door. Have an escape plan and keep a bag packed with keys near where you can access it during an escape if you must. I am so sorry this has happened to you. Call your local Area Agency on Aging and tell them you are exhausted and afraid. They have seen hundreds of cases where a spouse loves their husband but can’t cope with the illness. Nobody could cope like you have. Leave your home long enough to make these phone calls if you must. But please break this unhealthy trap and loving obligation you are in.
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