My wife and I can no longer care for my mother with Alzheimer's. What do we do?

We read this very often on our forum. Promises were made to never put ————in a nursing home. Great and noble idea in theory. In reality, not so much. Since she’s aggressive and could become combative, hiring an in-home caregiver probably wouldn’t work. She would need one 24/7 if she’s a flight risk. Plus, I’m assuming you both are young and so is Mom, or fairly so. This could go on for decades. Caring for her will preclude you from having your own family. You can’t have someone with her issues around a newborn or child.

Are you living in her home or she in your’s? Hopefully, you obtained Power of Attorney and there is a will. If not, you may have to apply for guardianship. You’ll need this to handle her affairs.

You can’t blame the neighbors for being upset. This must be very unpleasant for them. Is she alone during the day? Your neighbors may be claiming neglect if she is on her own and wandering all day.

If she has a doctor, you will have to go to them and ask for their help. They can put you in touch with agencies who can help. You can also call your local Area Agency on Aging and ask for referrals to agencies. Also, apply for Medicaid. She might be able to go to a facility Medicaid pending

if APS does show up, work with them.

Sometimes APS can help you get guardianship with little or no cost - can't hurt to call and ask.

My husband had early onset dementia, in his 50’s, and died two weeks ago at 61. I am very sorry for what you are going through. You’re the same age as my kids; too young to lose a parent, and certainly too young to deal with dementia!

My husband had symptoms like you are describing. He was able to get disability, and Medicaid when he needed to be placed in skilled care. Go to your mother’s physician, local Medicare office, seek free legal counsel, and contact DHS. Someone from one or all of those agencies can help guide you to get the benefits your mother may be entitled to. If your mother is acting out, you could also take her to nearest emergency room and seek psychiatric help with symptoms. They may be able to start the ball rolling by admitting her and starting the process for government assistance.

You certainly do need some advice, and I suggest you start with your local social services.

Your mother must be in her fifties or sixties? - which makes this Alzheimers very early onset. Sorry - just to check, what do you mean she hasn't been officially diagnosed? This is incredibly important because behavioural changes, especially in a person of your mother's age, could have many causes. Has your mother been assessed by a qualified medical practitioner or not?

Phew. I hate to fire off a whole load of questions but could you go back a bit and explain what happened leading up to your moving in with your mother?

This isn't exactly an AgingCare scenario, not really - your mother's too young, and you and your wife are too young, and it seems to be developing pretty fast, is it? So it's more of a medical/psychiatric emergency. Don't be shy when it comes to calling for help.

First she needs to be tested to figure out what is going on with her. That being said, the fact she has no insurance means you need to figure out who will help you.? I suggest that you call social services or APS as that is the office she will fall under. My father who is in his 80’s took a walkabout and the police were called by a caring citizen who knew something wasn’t quite right with him. Social service came and guided me through the hoops of getting services for him. I don’t know if your area offers what we here call PACE which is an adult daycare, this program comes and picks them up and brings them home. I did have to be home by 3:00 to receive him. We have a fence around our yard and dad loves to walk in the yard, so I have padlocked all of the gates so he can’t go walkabout, if he does get out I have put a driveway alert that sounds an alarm in the house when he walks past it. I purchased this for twenty dollars from Harbor Frieght hardware store, way cheaper than other alarms. Our fire/police department also runs a program called project rescue, they provide a radio frequency bracelet they can track should he wander off, in our community this is provided at no charge, a police officer comes once a month and changes the battery in it. This is a wonderful service and gives me a great peace of mind. I wish you well in finding services for your mom.
She may be aggressive because she is frightened and therefore “fighting back” speak to her in a quiet voice if you are able to put your hand on her shoulder and lean your forehead into hers. This may help quiet her, it works with my dad when he is upset. Don’t argue with her, if she is accusing someone, tell her you will check into it. I highly recommend a website I found early in my journey with dad, it has helped me immensely with suggestions on how to handle him. Alzheimers Reading Room is the name of it.

Cylar, my thoughts and prayers are with you. As others have said, call APS and social services to get assistance. Also call the Alzeimer's Association.
Please let us know how you are doing.

There are so many of us who are struggling to navigate the complex system of getting proper care for those we are caring for, and most of them and most of us have made no plans for long-term care of any kind. We have our "final plans" paid for but only because I worked for a funeral home and saw what it did to families whose loved ones passed away and then they were trying to do this "at need" when emotions are high. Also, we have been made to believe that if we don't care for our family members at home, that we are uncaring and cruel. Though my husband's more severe symptoms have only been exhibited for about two years, I look back now and can clearly see that it has been about 4 years of decline. At first he and I joked about "senior moments", but then as we needed to buy a home in 2014, I realized that the whole process was on me. He refused to leave the senior community where we had been renting a much larger lovely home, so I struggled to find any house in the community that we might be able to afford. Once that was accomplished we were hit with so many repairs, and a huge raise in property taxes as well as HOA fees and many medical expenses. We ran thru all of our meager savings within the first four years, me trying to pay off multiple credit cards including a $9000 dental bill which I have now reduced to $4200, but it is still a mountain. The latest medical bills, after 4 ambulance trips and a five day hospital stay will be crushing. We are now installed in a very shabby and small apartment with lower rent than our mortgage. It was all I could find that was downstairs, had an inside washer and dryer for the mountains of laundry I need to do due to his incontinence and I still have to take the blankets to a laundromat. Yet, we still cannot, so far, qualify for Medicaide or medi-Cal. I have finished the application process anyway as I was advised by the social worker to do so, and now am being told that I must file for bankruptcy, which will take over 1/2 of the remainder of the money I have left from selling our home "as is". I have found some grant resources over the past year and a half, but now husband's needs for care have become much more intimate and complicated -too much so for regular home care assistance. Our culture and our society is just not able to handle the onslaught of this insidious disease at all. We do medical research resulting in much longer lifespans but there is little being done to deal with the need for care - and making it affordable for families. The reality is that we need programs of in-home care for these people we love. For myself, I am drowning in exhaustion and depression. I wake each morning and try to think that THIS day will be a better day, that this night he will be peaceful and not violent, and that I will actually get some quality sleep. That time has yet to come. And I try to figure out how to be an activist for this all, but just treading water to care for him sucks the energy from this hope. I do make phone calls to my representatives and I read when I can to educate myself.

If she really has nothing, she may qualify for medicaid. It will pay for care. If she makes over $2,500 a month.. well you pay for it.

If she is 65 or older, she qualifies for Medicare. If she is younger than that, she will qualify for social security disability. It should be fairly simple to get her on disability considering her condition. Call a disability lawyer. They know what to do and can help you get a diagnosis.

My heart goes out to you. I would also recommend You contact your county/state social services department and ask for help. Do you or your spouse's employer offer an Employee Assistance Plan? If so you may be able to get some assistance or advice through them. Some EAP's even offer some limited legal services. Did your mom work? If too young for social security retirement she might be eligible for a social security disability benefit. She may be entitled to Medicaid benefits Medicaid rules vary by state so you won't know until you look into it. Getting a diagnosis will be important. If it is dementia she may be at the point she needs constant supervision which means a facility. Until you can get her settled, there are probably day programs in your area you can take her to. But there is a chance that maybe something else is causing the behavior changes, Which may be addressable. Again my heart goes out to you.