Anonymous wrote:Why on earth did you decide to have her live with you???

Anything is better than this.

Please don't be so harsh and judgmental. I've been in situations where I've had to either take care of a parent or a parent has had to live with me. For financial reasons, it's not always easy to find an alternative option. In my situation, my mom lived with me for 5 years before we could come up with a workable plan for her not to live with me.

Anonymous wrote:OP, this elder care is so difficult. Can you find a home that specializes in alzheimer's patients? In my area there are a few where they take in 4 or 5 people. Much more affordable. Good luck and a big hug.

Can you please provide some examples of these homes. I looked at a group home in Northern VA that had 8 -10 residents and seemed a lot more pleasant than a nursing home but it was $9,500/month and the elderly care social worker indicated that was the going rate. I would be interested in learning about more affordable options.

To address OP's question, my mom is having early signs of dementia and recently has said some very cruel things to my siblings and I. It is sometimes hard to tell if she means it or if it's due to dementia because she can quite manipulative as well and I don't know if someone had dementia if they could have the cognitive ability to also be manipulative. It is a very difficult situation and unfortunately, it doesn't get better.

Anonymous wrote:

Anonymous wrote:I’m a hospice chaplain, OP. I see so much Alzheimers and Dementia both in home and in our inpatient facility. My suggestion is to find a caregivers support group asap. That will help more than you know. You might also look into respite type programs that will keep her for a few hours several times a week. You need to find a way to take care of yourself.

Most importantly, remember that this is not your mom talking. It’s really difficult to internalize this. But, your mom is not aware of her words or of how they affect you. She cannot control them. She may remember some and feel regret. But at the time, she has no idea what she is communicating. Sometimes it helps to view Alzheimers patients the way you would a young child. You would never treat them like children, of course. But assume toddler level emotional regulation.

My MIL has Alzheimers. I’ve known her since I was 16. We have always had a close, loving relationship. She called me a bi7ch yesterday. And it stung. It’s not her. It’s the Alzheimers. And it just sucks. I’m really sorry you are struggling. Unfortunately, it only gets worse as time passes. Take steps now to protect your mental health and that of your family. Start researching long term care facilities. At some point, she may become more than you can physically manage. Talk to her doctor about anti-anxiety meds. They can be especially helpful late in the afternoon.

It’s downright terrifying to lose your cognitive abilities. Things you’ve known for decades…you no longer know. You can’t remember people or places or dates. You can’t find things. You no longer remember how to do basic tasks that you didn’t use to even have to think about. Things don’t make sense any more. The world is becoming unrecognizable. You can’t effectively communicate what you’re going through. You’re not yourself anymore. Even you are unrecognizable to yourself. It’s disorienting and frustrating and really frightening. It’s getting worse and you know it will continue to worsen. So you lash out like a wounded animal that’s been cornered because that’s all you can do.

Yes, and yet some people with Alzheimer's become gentler and more child-like. In the case of my parents it was the worsening of traits already there. I found with other relatives and friend's parents they did not become abusive the way say my mother has been. I have gone the empathy route for years, but I do think there is something in the personality already existing that makes some people abusive and like feral animals when they decline and others are gentle lambs. It was easier when I stopped making excuses and empathizing and detached and decided to find the boundaries for visits where I could stand being there and didn't feel like it ate me alive.

If for whatever reason she cannot go into a facility, look into hiring home attendants so that you do not have to do this alone. You will need to do this when you return to work anyway.

I’m sorry, OP. This is hard.

Why on earth did you decide to have her live with you???

Anything is better than this.

Anonymous wrote:If you can, have her start paying you a fair market rate for room and board now. Medicaid will require her to spend down her assets before eligibility—they will look back a certain time period and essentially claw back any gifts but not fair market rent paid to a family member. You can put it aside and use it to buy little extras for her when she does go into care, or use it for respite for yourself while she lives with you, or transitional costs.
We realized that one too late.

This is a really good idea.

If you can, have her start paying you a fair market rate for room and board now. Medicaid will require her to spend down her assets before eligibility—they will look back a certain time period and essentially claw back any gifts but not fair market rent paid to a family member. You can put it aside and use it to buy little extras for her when she does go into care, or use it for respite for yourself while she lives with you, or transitional costs.
We realized that one too late.

Ha! My mom told me she wished she was stupid not to have aborted me right after my first child was born. There are lots of broken people out there. Hugs OP.

On Monday I would definitely start calling nursing homes. It’s not mean or vindictive to make sure your mom is cared for in a way that doesn’t harm your well-being.

I agree completely with the PP who said to start grieving now.

Please start looking for a solid place with memory care that will accept Medicaid. They do exist. Look for non-profits. They have waitlists though. My mom cared for my dad with AD for two years while he was on that waitlist. Caregiving also takes a health toll. It’s five years later now and he is in a wonderful facility and she has passed away.

Best wishes.

Oh OP, this is so hard. And it’s going to get so much harder.

Part of the process I think is that you have to grieve your mother now, in many ways. She’s just not the same person. She can still be a person you love and care for, and you can and still will have moments of joy and connection through this person to the mother you loved. But she’s going to do and say awful things and you have to find a way to not hear them as coming from your mom, the person you knew.

The denial is so powerful, and it really does serve a good purpose. It helps the person feel like themselves, more of the time. It would be unbearable to be sitting there knowing you have Alzheimer’s and so I really think many people’s brains just…won’t. It’s like auto-medicine. But most of the negative side effects of that are borne by the caregivers. Because a lot of the anxiety and fear and sadness about their decline will get redirected.

The denial will tangle with waves of anxiety and rage coming from the disease and create some of the worst days (evenings, probably) of your life.

Your family needs and deserves a healthy, safe home. YOUR FAMILY NEEDS AND DESERVES A HEALTHY, SAFE HOME. It doesn’t have to be happy all the time and it can have some really hard moments, but it has to be healthy and safe. That may or may not mean your mom can stay with you until the end.

Also keep an eye on your marriage. Even if you can afford home health aides, turning your home into a work place is a whole other ball of stress. It may not be possible. Do the best you can, for as long as you can. Definitely counseling for everyone as much as possible. You, kids, you as a couple.

Anonymous wrote:I’m a hospice chaplain, OP. I see so much Alzheimers and Dementia both in home and in our inpatient facility. My suggestion is to find a caregivers support group asap. That will help more than you know. You might also look into respite type programs that will keep her for a few hours several times a week. You need to find a way to take care of yourself.

Most importantly, remember that this is not your mom talking. It’s really difficult to internalize this. But, your mom is not aware of her words or of how they affect you. She cannot control them. She may remember some and feel regret. But at the time, she has no idea what she is communicating. Sometimes it helps to view Alzheimers patients the way you would a young child. You would never treat them like children, of course. But assume toddler level emotional regulation.

My MIL has Alzheimers. I’ve known her since I was 16. We have always had a close, loving relationship. She called me a bi7ch yesterday. And it stung. It’s not her. It’s the Alzheimers. And it just sucks. I’m really sorry you are struggling. Unfortunately, it only gets worse as time passes. Take steps now to protect your mental health and that of your family. Start researching long term care facilities. At some point, she may become more than you can physically manage. Talk to her doctor about anti-anxiety meds. They can be especially helpful late in the afternoon.

It’s downright terrifying to lose your cognitive abilities. Things you’ve known for decades…you no longer know. You can’t remember people or places or dates. You can’t find things. You no longer remember how to do basic tasks that you didn’t use to even have to think about. Things don’t make sense any more. The world is becoming unrecognizable. You can’t effectively communicate what you’re going through. You’re not yourself anymore. Even you are unrecognizable to yourself. It’s disorienting and frustrating and really frightening. It’s getting worse and you know it will continue to worsen. So you lash out like a wounded animal that’s been cornered because that’s all you can do.

Anonymous wrote:Get her on Medicaid and into a LTC facility. If she’s too poor, there are places that accept Medicaid.

OP, I took care of my MIL for about a year. It was what you are describing and worse. I could not leave her home alone. It was a nightmare and we had to go this route. My husband didn't want to but I loved her and did 95% of the work and couldn't do it anymore.

Anonymous wrote:She has lost the will to live and often says she wishes she could just go to sleep and not wake up. After today, I am wishing the same. This is no way to live. But I know that people with Alzheimer’s can live for many years after they are diagnosed. I can’t imagine dealing with this for another 5 or 10 years, but it could happen.

She hasn't lost all will to live. Her mind is failing her.

OP this is not sustainable. Get out of your head that this is something you can or should do. It’s not. You will destroy your health and probably your marriage. And your kids will be hurt too. Plus it’s not safe for your mom. No way your mom ever would have wanted to cause this kind of damage and pain. Do whatever it takes to get her into a memory care facility. Hugs and peace.

Get her on Medicaid and into a LTC facility. If she’s too poor, there are places that accept Medicaid.