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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.

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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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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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anonymous633176 Sep 2018
Please see my response above. Thank you for you advice
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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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Ahmijoy Sep 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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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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MojoMama Sep 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.
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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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madzeena Sep 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?
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Would he qualify for Hospice? Through Hospice you would have a CNA a few times a week, a Nurse that would see him once a week, a Social Worker would visit or contact you once a month. You could also have a Chaplain see you if you wanted. All Hospice must have volunteers and you could ask for a volunteer to come in and visit with your husband while you run errand, go grab a cup of coffee or have lunch with a friend.
Through Hospice you would also get his medications, all the equipment you need as well as the education how to use it.
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Thanks for bringing this up. I’m just starting this journey with my husband. I don’t look forward to it. I got lots of practice caregiving for my Lewy-Body-stricken Mom, and within a month after her death, my husband was diagnosed. So different when it’s a spouse, huh? So thank you all for giving me a realistic view of what I need to prepare for (although we can’t really prepare, can we?). Now in the early stages, his sex drive has gone into overdrive, too. I guess trying to “make hay while the sun shines”. Anyway, I got a lot of knowledge and support from this site with my Mom and I’m so grateful you will still be here to help me through my husband’s turn at this awful disease.
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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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i too am caring for my husband 88. I know your situation all to well. I am a very open person when it comes to my feelings of resentment , anger, exhaustion etc, but it makes people uncomfortable . The old better or worse, in sickness or health does not apply here. You definitely need help . Is placement an option? Are you on medicaid? I was told by case manager to refuse to take him home from emergency siting safety issues( which seems to be the buzz word) both for him and for you. You are at risk of being seriously hurt. Keep posting
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HE NEEDS TO BE IN A NURSING HOME ASAP - talk to his dr before you get sick too - if he is 84 then you must be older too with your own health issues that will only will only be made worse with your exhaustion

Your have sent a cry for help here as you see the situation is deteriating with no chance of it getting better - looking into what you know in your heart of hearts you must do - good luck
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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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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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I have attended an Alzheimer's dementia caregiver support group for a while now and hear many similar stories of husbands and wives struggling to provide what they can in the most untenable situations. (Alzheimer's helps caregivers struggling with all forms of dementia among loved ones. They will provide you a respite caregiver to allow you to attend these meetings. For many in my group, it is their only outlet and outside contact.) Our leader has 20 years of experience running a day care program for people with dementia. She's an endless source of resources, ideas, problem-solving, and practical responses. The most valuable things I have learned from her is that the situation will get worse and exceed your physical capacity to do this alone, and that caregivers have a 40% mortality rate, 40 out of 100 people dying before their recipient from the stress and difficulty. I too have been in my care management role with my 95 year-old father for almost a decade. I too have visited the place of complete exhaustion and despair where I have felt that the only relief available was for one of us to die, I didn't feel particular about which one of us it should be. That is the sign that you are no longer in a position to serve that person's best interests. Oversee, contribute, remain loving and concerned --yes. But continue as the sole provider--no. I'm an only child so I don't have family to involve but I'm well aware of others who struggle to get their family to step up. It's a brutally tough job that no one wants to do and they won't as long as you continue to buffer for them. Contemplate what would happen if you succumb first to the stress. Who would have to respond? Then, inform those very people of the date you intend to conduct a family meeting, by conference call if necessary, for problem-solving. Let them know that you have done as much as you can for as long as you can and will now need to stop. Explain the bankruptcy necessity. And perhaps finish by asking which one of them you might plan to live with. Let's hope solutions begin to flow. You being the catalyst for marshalling the needed support from others is exactly what your responsibility to husband should look like so don't fear being too assertive. You are still his advocate. Best to you.
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I am only adding some recent VA experience to the helpful answers here.

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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Please take him to the hospital & after 3 day stay, talk to Social Worker Dept & have him placed in a SNF ..you can no longer care for him as your own health is failing!!! There, the Social Worker will help you apply for Medicaid. Hugs 🤗
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Sounds like you've availed yourself of almost all the resources available and are still struggling...for which I'm so, so sorry. If you haven't already, please contact your local AAA/Area Agency on Aging (established nationwide under the Older Americans Act, and usually under the auspices of your local county government). Ask for an appointment with a senior resouces staff, and find out from the AAA if there's a Spousal Support Group you can attend. Spouses who are going through the same thing you are may have invaluable insights and suggestions.
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JuliaRose Sep 2018
I absolutely agree. I looked up a spousal support group and now attend it each week. It happens to be very close to my home! I was so surprised.
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You MUST get out. This is a very unsafe environment for you to be in because you are being physically harmed.
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You need to get him on Medicaid and in a NH. Your needs will be considered and you won't be indigent.
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Try to pull yourself together first . Try not look at the mountain ⛰ and climb it and don’t look back. Look at all personal scenarios that can happen and have a plan and write down. There are always detours you have to make. Have a plan a,b,c,d. etc. Also don’t forget about yourself and your own personal recovery going through everything. Ex. Medical, Mental, Financially, etc. All you can do is try because there is no crystal ball 🔮. If you make the effort; you can at least say to yourself you tried regardless of outcomes maybe feel better if plan works out. We are all put on this earth 🌏 for so long.
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I am sorry that you are going through this. I did some research and found the following:

https://www.caregiver.va.gov/help_landing.asp

VA resources:
https://maketheconnection.net/resources?utm_source=bing&utm_medium=cpc&utm_content=Help|4567656274|c&utm_term=%2Bveterans%20%2Bhelp|va%20help%20with%20foreclosure&utm_campaign=Search-Veterans-BMM|133167251


The Veterans Inc. Supportive Services for Veterans and Veteran Families Program helps individuals and families who are homeless or at risk. If you meet the basic eligibility requirements, Veterans Inc. provides direct services and financial assistance to help search for housing, assist with initial rent costs, and pay for certain bills related to back rent or utilities.
http://www.veteransinc.org/services/supportive-services-for-veteran-families/


VA make the connection
https://maketheconnection.net/resources?utm_source=bing&utm_medium=cpc&utm_content=Help|4567656274|c&utm_term=%2Bhelp%20%2Bfor%20%2Bveterans|va%20help%20with%20relocation&utm_campaign=Search-Veterans-BMM|133167251
https://www.alzheimers.net/9-26-16-veterans-benefits-for-alzheimers-and-dementia/

https://americanveteransaid.com/landing/lp_2/aid_and_attendance_2_msn.html?msclkid=c109918a599912e863caca2d0b4cc3d8

https://www.dementiacarecentral.com/

https://caregiver.com

Please make sure you do not sign any non-profit or for-profit documents.

Is your husband taking prednisone?
my mother was on it and she was yelling, and screaming from time to time with agitation and had an altered mental status. The cause was the prednisone which the doctor's discontinued.
Common Side effects of prednisone which are; Aggression, Agitation, irritability, mood changes, trouble thinking, speaking, or walking, rattling breathing, shortness of breath, troubled breathing at rest, noisy, dizziness, fast, slow, pounding, irregular heartbeat or pulse headache, swelling of the fingers, hands, feet, or lower legs, weight gain, and decrease in the amount of urine)

Could you move close to your children and grandchildren?
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I have experienced a good deal of my husband’s anger & frustration with arguing and at times, fear he might get aggressive with me. Like you, I have a significant history of childhood abuse that I’ve also worked on for years in therapy. I asked my husband’s doctor for help with his mood swings and he has now been on a mood stabilizer which has helped a good deal. We’ve just had to increase his dosage as he was getting increasingly argumentative & angry. My heart goes out to you! Sending hugs. 🤗
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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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