quote:

Originally posted by irreverent:
Someone here has a wife who works with dementia patients, and her advice was heartbreakingly dead on: meet them where they are in their mind that day and go along for the ride.

Best advice for coping yet for any mental problem. When your not one of the enemies you will get them to join you much more readily. At least in the field it worked most of the time with us sympathetic strangers. And was the only way to halfway get my mildly into dementia Mother to do what was needed.

The Life Extension has several products:

https://www.lifeextension.com/...ntia&t=coveo4A2453FD

Our mother is now 85 and the second from the youngest of 6 total in her family. Over the past 20-plus years all of her siblings had developed dementia and have passed. Her symptoms came on gradually about 7 or 8 years ago. My father kept her at home as long as he could, and looking back now we found that he had covered for her regarding the little things that she could no longer do by herself.

Dad took her keys away when we noticed that she had trouble finding landmarks and making navigation decisions, even though motor skills were still okay. When her license expired he got the state-issued ID when it was time to renew. She was upset, and brought it up for a few years, but gradually forgot that she no longer drove.

Dad took Mom to Alzheimer support meetings at a local assisted-living facility for a few years, before his health deteriorated, with the goal of familiarizing her with the surrounding and eventually moving her in. These groups provide much insight to assist family and friends with tips and techniques on dealing with this disease. It is important to understand how this disease works, and how to cope with those who are affected. We continue to treat Mom with respect and allow her to keep her dignity, but conversation and interaction has degraded, to the point that she can now no longer verbally communicate.

This disease can actually be harder on the primary caregiver than on the patient. Dad neglected his own health needs until he ended up in the hospital himself. At that point we were forced to put Mom into the assisted living facility. Dad's health was such that he did not recover and we lost him two years ago. We were then forced to scramble to get legal docs in place while Mom could still sign her own signature, and get us fully empowered to take charge of her affairs.

We found that there were good days and bad days, and now all are about the same. Mom is now in a wheelchair, no longer able to stand. We learned that we couldn't fix the disease as Mom progressed, all we can do is make the best of the time we have with her. Fortunately, Mom never got extremely angry or unpleasant to be around. Patience is needed, and understanding of the disease. Our friends and family have helped much thru this journey. Remember to take care of the caregivers.

I was having lunch with my gun show buddy a few weeks ago and he was telling me about their dealing with an older brother who is going thru this right now. Reading everyone's stories sound very similar to what he was telling me.

My question is this. He said that they found that Medicare will only cover 100 days of a full nursing care facility. Medicare and Medicaid pay nothing for assisted living. His big concern was paying for long term care in a nursing facility. These people have very little money beyond every day needs. His brother does own his own home. Do you guys have any insights I might share with him?

It is my understanding that Medicaid will pay for care if the individual has no assets. I suggest consulting an elder care lawyer for advice.

re: "meet them where they are in their mind that day and go along for the ride."

This is exactly what worked best with my own mother, in her deteriorating mental state. She finally had to be housed in a "locked memory care ward", as she would 'elope' and wander in the traffic, regardless of a half-dozen small care facilities that would have been otherwise perfect for her.

Depending on the financial laws of your state, the children of the patient are NOT financially responsible for her medical bills.

In Idaho there was at the time my mom was in such need, signing up for elder care meant complying with a number of financial resource
requirements. She had a home we sold to pay for her care. She had to pay for her own bill for IIRC 48 months before becoming eligible for state aide. That pretty well depleted her account down to below the $ limit established by the legislature for such matters.

I had to learn to function in 2 worlds, that of the emotional/memories/parent-child and that of the rational/today/financial.

When your mother introduces you to her other resident in-ward friends as her long departed brother, you know something has shifted you have no control over.

My Mom grew up in NorDakota around WW1 era. She became happy going back to live in that time period. She was incapable of responding to the decades, friends or relations after WW2.

My mom developed this @ a year and a half ago.

Doing goofy things, auto incidents (minor), unable to care for herself.

Rapid onset, we were not prepared, but we got her medical help and found the big thing for her was hydration. She doesn't drink water until she eventually goes off the rails.

Had her stabilized for quite a while, but 2 weeks back she was acting like she was having a stroke - slurred speech and unable to produce any volume, loss of motor skills.

Off to the ER, every test and... dehydrated.

She insists on living in her house alone, so I am constantly checking on her as is my wife. I shut off her stove and oven, removed all the throw rugs, removed keyless deadbolts so we could get in if needed - she thinks everyone wants to get her.

She never was kind to me, I left home at 14 to get away from her and she hasn't improved over time. My sister had much the same experience and left for college and never came back and now lives 3 hours away, so she's not available or willing to help out.

The dehydration lent itself to some transient strokes, so those didn't help anything either.

Mom has limited savings but owns her house, which if we sell will reflect a VERY large tax bill and I fear will not cover a new memory clinic for any appreciable length of time. She's 91 and other than the mental and ageing issues, healthy as a horse.

So, I keep plugging along, managing her finances and I should say, we had home care for her which she needed, but they fired US because mom is such a nice person. They couldn't take her.

So, it's an interesting journey.

I hope I don't do this to my daughter.

I hope to go when I'm in my 90's, shot by an irate husband while I'm hopping a fence.

I thought I replied to this thread but I don't see it.

I have my advice below after I share my experience.

My dad had Alzheimer's and we put him in an Alzheimer's unit as my mother didn't want to move in with us. But she kept losing him when they were out and about in San Francisco and elsewhere. I moved him against her will when she had a health episode. She asked him to get the phone from the living room. They had a second charging station in the bedroom but they didn't use it. He walked from the bedroom to the living room and proceeded to watch tv until a family friend stopped by to take them somewhere. She was hospitalized and that's when I decided to take care of my dad. I had power of attorney.

My mother in law had had dementia and she stayed with us and my wife stayed at home and took care of her.

The advice is a couple: They need to be in constant supervision like in a care home or living with someone who will look after them. The danger is they can wander off and get lost and fall into danger. Or they can leave the stove on. Or even just have a fall and they can't get up.

The second advice is whoever is taking care of the patient, you need to give them respite from the work of taking care of the patient. It takes a toll.

Good luck.

Accept a few things right now:

* She’s no longer the person you knew
* You will be a stranger at random times
* You will be accused of a range of things from abuse to theft
* In her confusion she will likely lash out verbally at anyone in sight and a few people that aren’t in the immediate area

There’s no way to describe the amount of patience needed for this situation. Your wife will be stressed out like you’ve never seen it. Listen and help with the little things.

Also, it only gets worse. Sorry there’s nothing positive I could add. Good luck.

quote:

Originally posted by Bassamatic:
I was having lunch with my gun show buddy a few weeks ago and he was telling me about their dealing with an older brother who is going thru this right now. Reading everyone's stories sound very similar to what he was telling me.

My question is this. He said that they found that Medicare will only cover 100 days of a full nursing care facility. Medicare and Medicaid pay nothing for assisted living. His big concern was paying for long term care in a nursing facility. These people have very little money beyond every day needs. His brother does own his own home. Do you guys have any insights I might share with him?

If he is a veteran the VA will help with the expenses, at least for an assisted living facility. The paperwork is a bitch but you can usually find someone to help. They are paying $1900/month of my father's assisted living expenses.

quote:

Originally posted by irreverent:
Someone here has a wife who works with dementia patients, and her advice was heartbreakingly dead on: meet them where they are in their mind that day and go along for the ride.

From my experience, that sounds like a great summary. I would suggest there is more than 1 correct answer, and meeting them at the place or level they are in is a great approach.

For us here at home, I offered corrections with great care and smiles and I felt as though it made it easy for the wife to admit it was confusion, and all were here to help. With my mother, not so much, as more confusion would lead to frustration. Best to you in finding your way.

One thing you may want to consider is whatever facility she goes to find out their visitation policies with this freakin' virus going on. You may not be able to visit at all or with very limited visits. My step dad deteriorated very rapidly when my mom and family were not allowed to visit. It may or may not have had anything to do with it but news stories about this happening to patients are all over the news.

quote:

Originally posted by bendable:
They are not stupid, just confused
No hiding the keys either.

If you want to split those hairs, I'll be more than happy to do so. My dad had advanced dimentia when he died. Very sad, he was both stupid and confused. We pulled the spark plugs out of his car. One of the hardest things I've ever done

quote:

I suggest consulting an elder care lawyer for advice.

The seriousness of this terminal-point occasion demands serious help.

I was amazed at the incredibly helpful advise I got from the 'elder care attorney' that consulted on my mothers situation. It was a very reasonable couple-hour fee that solved a TON of issues. That included clarification of state laws, elder care financial help, obtaining necessary forms & getting various papers signed.

Do. It. Now.

My only advice for caretakers is to get some trusted help. It'll tear you up if you try alone.

quote:

Originally posted by mark123:
My only advice for caretakers is to get some trusted help. It'll tear you up if you try alone.

Lots of great advice in this thread, and IMHO this is one of the best. I went through this situation with my dad and Mrs. 'Hook did it with both her parents. We supported each other as best we could, but the reality is that you are not going to be able to give the complete level of support or expertise your wife is going to need.

Lots of great advice has been given about needing legal support. Home health care is a solution, but may only be temporary before the dementia gets beyond their ability or patience. Good doctors & medical staff are essential to the transition from home to the next level of care facility your MIL will need. And finally, you and especially your wife will need to mentally commit to this journey you're about to take because it is a daily grind that doesn't ease up until they become incapacitated. (Apologies for being so harsh, but that's the stark reality of your situation.)

I'm following this thread because I am just now starting down this road with my mother. And in spite of having been through this three times already, I know I don't have all the answers.

Best of luck to you, wrightd. Keep in mind you have a large and generous support group right here at Sig Forum.

An article or three about
Sun down syndrome might be helpful as well.

Getting friends and family members on the same page when interacting with her helps them a lot.

I lost my wife 3 years ago to Alzheimer’s, as the only caregiver I had to make a huge lifestyle change. Not surprisingly the posts so far are spot on and totally valid. I did discover that selling the house was not a wise thing, the state will use every dollar to pay themselves back for her care but when Medicaid or state level care kicks in the care is exactly the same.

I think only one SF member said something about a support group, it helped me in a major way. I would encourage anyone with a family member suffering from memory loss to find one quickly! I was lucky my wife was Baker Acted twice, the second time she was violent. I had already made the decision if it happened again she had to be placed at a higher level of care. It’s was not easy, but she was placed directly for the hospital to a care facility saving me from having to do it.

If you need any more information, my email is in my profile, I will be happy to help.

During the care givers group we learned a new word, fiblet, it’s a small lie or fib to your family member. If the battery is out of the car, you go out fake starting it and tell her, darn mom it won’t start...

We (wife and family) just put my mother in law in an ALC/memory care facility about 3 weeks ago. It started about 7 years ago when she was having trouble doing their monthly bills. Her initial symptom was a very bad headache. What the doctors have surmised throughout her treatment, is a stroke got this all started.
My FIL insisted on keeping her home as long as possible. Her behavior became more bizarre as time passed. She was certain my FIL was trying to hurt their dog, she would say and do things completely out of her character. Just before placing her in care, she started falling. More often than my FIL would admit. She has been on innumerable meds for quite a while. It was the absolute best thing for her and him. Like others, there is so much more to the story. But this disease is terrible, taking the lives of many, and shortening the lives of those who try to care for them at home.

What everyone else said is spot on. I'll add:

If she has any assets to speak of, and is not too far gone already, work on getting power of attorney, writing a will, naming beneficiaries, getting names added to her bank accts so they can access, etc. Start moving monetary assets to elsewhere. Medicaid has a 5-year lookback.

Forget about the Visiting Angels you see on TV, she needs more help than washing the dishes.

Start looking for assisted living facilities now. They get cheaper as you get further and further from civilization. They help with bathing, toilet, feed them, and keep an eye on them.

You don't need nursing home unless she actually needs medical nursing.

And, personally, I would not bother with "memory care" at age 89.

Once all her assets are depleted (or you have transferred them elsewhere 5 years prior) Medicaid will pay for the nursing care.

You can find facilities that have assisted living on one side and nursing home on the other side, and they might work with you such that she does assisted living for now, but as she gets worse they are willing to document that she needs nursing care and move her to the other side, and therefore with nursing care Medicaid will pay (once the cost of assisted living has depleted her assets).

If caring for her in your own home is a possibility, some or all of Medicare, Medicaid, and Social Security have ways to assist with that.

You can also contact local elder/senior assistance services for advice.