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What do you do when you have a mother in law whom you live with, has Alzheimer's, dementia with psych issues has cancer. My husband and I live with her 24/7 we see her decline rapidly daily. Other family offers no support and refuses to help or place her in nursing home. They see her maybe one hour a week tops they see her declining but will do nothing to helpCaregiver support when nursing home is NOT an option., they don't have to be here but we do. What can I do? It has already put my husband in the hospital from stress. he has a bad heart and I am afraid this will kill him. he gets angry saying he will not abandon her but admits this may kill him HELP !!

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you have great ideas some I have already tried. Luckily for us she has yet too venture off without us, we took her car keys. She has urinated so much on the carpet we are having it replaced Tuesday and although I clean the house twice daily she woke today thinking it was the day to install and insisted I mop the floor. Hubby explained that it was sunday and the floor although it was dusty we would wait until after the install to do a good cleaning on it. she pitched a fit so I swept it and let her use the Swiffer on it. I worry about her doing it. She will be 80 this Wednesday and first thing in the morning she is "grumpy" and in the mood to clean. Rather than pissing her off I just do as she says and do the harder work in the house which also aggravates her she says we treat her like a baby and want her in a rocker .. on days like today she may very well be right.
The woman can't get along with her own shadow so we can't really have "company" she offends them too much. I do understand her Alzheimer's to a degree, I have had a stroke and I knew what was happening in my brain but it didn't come out my mouth right. With her it's back wards her mouth moves before her brain catches up !!
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Hi, first of all the people who keep fixing the financial sutuation are missing the point. Sometimes people dont qualify. Its a sad fact of the way funding works in this country. Anyhow. This is what my partner and I are doing. We /he makes two hundred too much for Medicaid and we have no real property and yes at some point we will have to scrape together the grand for a trust so if one of us needs a snf the other one wont we homeless but thats where that extra 200 boes when we dont need a tire for the car....not that that's ANYBODY'S business....its just how life is in the land of the 1%....at any rate....I am on social security also and cant do much, so what we do is we pay someone from craigslist twice a month to clean our kitchen bathroom and vaccuming. We have our groceries delivered and we got an apartment right across the street from a grocery store. The pharmacy delivers. We have parattansit in case my car breaks down. Lately I have been having the cleaning person come in the afternoon when he starts sundowning because I need a nap since he is up most of the night. We get doctors in the afternoon, because, yes we are tired, but at the same time, I need witnesses...lol....and he sleeps that day. Plus the mornings are peaceful. I've been downsizing, a lot. Like tiny house size downsizing. Its too much to keep up with everything. Try to keep a calm atmosphere at home. Lunches at meals on wheels or the senior center. I "try" to go sit in the sun with a cup of coffee when he sleeps in the morning. Get some walkie talkies so I dont have to be in the same room. Label everything in the house. Baby monitor. Door and window alarms from home depot. Lots of extra sheets and towels. From the thrift and sometimes when im too tired those get thrown out. Invite people over for movie night on a week night. Have a church service at home or have the minister for tea on a Thursday. Get books on tape or dvd deliveredd from the library. Netflix. Amazon prime. There is a company called try the world that delivers world cuisine to your door. I try to get young kids...he has two grandkids but I find cute kid videos of kids on you tube and put them on tv and he laughs. Animals too. We have silly hat day on friday. Its a routine. No matter what. He knows that if its a "good day, a bad day, raining, whatever, if its friday, its silly hat day. I have my own room. And he has his own room and even at times our own half of the house. I locked up all the sharps. I got him on the senior wandering off program so if he does leave his photo is registered with the local police. Also the neighbors know he can't hear and refuses his hearing aids...when he sleeps I turn the volume off and leave the light on the tv....thats working. I did a whole other post about his bath ritual....as for me...I have my own medical issues....our life is intense and I get very overwhelmed. I have got the maintenance at our apartment to come fix a faucet...left him there as the "person in charge" and gone out to the hot tub for twenty minutes.....it takes a villiage......catch as catch can
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Kathyy1,
I wonder about pooling resources with another family,
in a similar situation.
I would love to share a home with someone who understands,
and can provide a sounding board, and maybe make this easier on both care givers.
I wish there was a service that could help.
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Maybe you can get the doctor to ORDER the NH. Worth a shot.
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Also, check your state to see if they do have a program that helps pay for Assisted Living and Memory Care Assisted Living when a doctor says it's needed. Often it's available for people who are disabled or who cannot take care of themselves, such as those with dementia. The guidelines are much like Medicaid.

Google Elder Affairs Florida US. You'll see a site that describes the fianancial assistance for the disabled and dementia patients in Assisted Living in Florida. If she is in a different state, you can check there as well.
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If ur MIL has terminal cancer she may qualify for hospice. There r facilities that can do this or in the home.
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If ur family member has no assets, u can apply for Medicaid. But they only cover long term nursing unless a facility has a waver. I can see why this would be a last resort. Who has the POAs? If u have the financial and medical, you make the decisions. I think that husband in hospital is a good reason.
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I'm, so glad you had a nice day. I hope you have many more, but I would plan for the future nonetheless. I hate cancer and dementia. It takes away so much from our lives.
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Thank God for good days. This morning started off bad waiting for her to melt down over coffee. She came home from chemo around 1 this afternoon in a great mood, talkative and joking around. Talking about her day. I had been doing her laundry and cleaning her room when she came home. She went into her closet and came out with a very nice top and sweater and approached me to give as a gift, my jaw almost hit the floor. She asked me to help her clean her drawers in her bedroom which I did. She was very pleasant and was a joy to be near for the first time in lord knows how many years. I love being around her when she is in that frame of mind, almost like she has no "issues" what so ever. We ate an early and laughed and joked. She even gave the dog "treats" which is shocking , she hates the dog. At 6 pm she woke from her nap and to my amazement she was still in a good mood even though she was frustrated she was unable to work the phone when it rang. We were talking about our nails and she asked if I would go with her next week to get a manicure /pedicure...I said yes, of course. had no intention ( can't afford to do it for myself )to get mine done and wham !! she said she'd pay for it. I feel ashamed of how bad I have been feeling about her and our inability to co exist but days like today come few and far between. Also when they came home from Chemo my husband said "come here" and gave me the strongest hug he has given me in years and I almost saw a tear in his eye. Have no idea what their "moods" are about but I am thankful for every minute. I just wish they came more often and need to remind myself that it's not ALL bad... we do have some very good days.
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Worried13, has your MIL been assessed to see what her needs are? I know that the first Assisted Living facility that my cousin was placed did not work as her condition progressed. They simply were not able to provide her the attention and protected environment that she needed. I would explore that, even though you seem prone to keep her at home.

I suppose that her care and placement is certainly the decision of the POA, but I do think I would consider if she were in the right facility, she might be able to settle down and find some contentment.

Some of that can be treated with proper medication. I've never read that Xanax long term is very effective. Others may have a different opinion. Also, perhaps she needs a different antidepressant or even a daily anti-anxiety. Cymbalta made a huge difference with my cousin. It doesn't seem to cause any drowsiness. In fact she seems more alert and content when taking it. It treats both. I would certainly attempt to discuss a medication adjustment if she seems overly anxious or in distress.

Some of the behavior you describe sounds like behavior that is characteristic of a dementia patient. I don't know that there is any way to deal with that except to supervise her constantly, limit her access to anything that could harm her and try to redirect her when necessary. That is a huge job for family members in the home, even if you are a young person, but, it's the sort of thing that the Memory Care staff do all the time.

I'm feel fortunate that I was able to place my loved one in Memory Care so that she is protected and understood. They don't think she's odd because of what she does, they realize that's how dementia manifests itself.

They protect the residents by not allowing them to have tooth paste, mouthwash, lotions, scissors, nail clippers, etc. in their rooms. A dementia patient my ingest nonfood items. They basically toddler proof the unit. A meeting with team at the facility can work together on a PLAN to address the resident's needs and help them find more contentment.

I do wish you luck.
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If your income is only a little over Medicaid qualification, there is a mechanism known as a Miller trust where the excess can be dedicated for care costs and they can qualify. It takes an eldercare attorney to set it up.
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kathyy1, please come back if you are still on the forum as we are curious why a nursing home is not an option for your Mom-in-law.

What is in her best interest? Someone who is exhausted from working 3-full shifts 168 hours a week, or being in a place where the caregivers work 8 to 12 hour shifts, then go home for a good nice sleep to be refreshed in the morning. And this isn't their first rodeo, they have been around patients with Alzheimer's and are familiar with all the different stages.

What would happen if your hubby had another heart issue and never came home? Then he would be abandoning not only his mother but also you. That doesn't sound very fair, does it. But I can understand him not wanting to upset his mother.
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Babalou, yes they are very aware as I chart and record everything now ( learned the hard way) After finding *poo in her dresser drawer hidden in a box.. yuck was on the phone with the Doctor immediately. There answer is increase her xanax... Which would basically keep her asleep all day.. Instead I cleaned it up, took picture to document. Did not say anything to her about it.

When it comes to the hospital, I deal with her meds so I'm the one that gets to call nursing station ect.

She has no assests other than her SS. We cover all bills, her back taxes ect... In a perfect world we would have help from her son that lives 1 block away or one of her 2 daughters that are within 20 minutes of us... Nope they wont even visit her rarely return her calls.
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Is her geriatric psychiatrist aware of her continuing behavior issues? It sounds as though her meds need to be recalibrated.

I would not entertain those phone calls. If she's in the hospital, there might be a need for her son to check with the nursing station once a day. Don't answer her calls. Let them go to voice mail.

YOU do not afford the NH. MILs assets or entitlements ( medicaid) pays for that. Not you.
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and on a fun note she's been obsessing over poo since last night ( she went poo yesterday morning) Gonna be a FUN day, Not..lol
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Babalou, She's on Mirtazapine, bupropion daily along with Xanax as needed on the really, really rough days. So far seems to be the best combination. Example of her behaviour when I the DIL she hates is not around.. While in hospital and skilled nursing she called me a minimum of 30 times a day all hours to potty, nurses not giving her the right meds( she has no clue what her meds are), arm itched anything and everything. I had to leave town for 4 days affter she returned home, my father was dying cancer, she had my husband, his sister and my daughter here was excuse the term but bat shit crazy the entire time I was gone. I get home she immediately tells me how horrible I am but then setled back into routine....As for a nursing home as badly as she reacted to those 2 simple times the ones closed to us I would be terrified to put her in even if we could afford it.
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Agitation and combativeness
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Also, you need to talk to her doctor, or to a geriatric psychiatrist about her agita8and combativeness.
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Worried; you need to apply for MEDICAID for an indigent parent. MEDICARE will only pay for 21 days at full cost for REHAB after a qualifying 3 day hospital stay...then the patient pays at 20% copay for an additional 80 days. That's for REHAB.

For long term care, Medicaid is what covers, if your parent doesn't have the means to pay with private funds. Please read the information here on the Elder Care tab, "paying for care".

Also, if her SS places her slightly out of the eligibility for Medicaid, consult with an elder care attorney about what is called a Miller trust in some states. It's a pooled asset trust that is NOT a DIY project.
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Jeanneglibbs... We have priced the skilled nursing homes in our area her co-pay after 21 days is 175.00 per day and that's a very scary place. Insurance gives out at 100 days. Her SS places her slightly out of more govornment aid. Other factors she gets very, very, very rebelious in skilled nursing, striking at the aides, nurses ect. Very Jekle and hyde.
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kathyy1, why don't you consider NH care an option for MIL?
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worried13, A nursing home isn't an option for financial reasons? Huh? Are you in the US?

My Mother's sole income is $800 a month. That's it. No assets. How on earth can she afford a nursing home? She pays a little more than $700 a month to NH and Medicaid pays the rest.

If your MIL has income and assets she should be using them for her own care. If she is broke (like my mom) she can apply for Medicaid.

"Can't afford it" is very seldom a legitimate reason not to get the care our elders need and deserve.

It may be true that you have rejected the option of NH care for your loved one, worried13, but that is different than saying it isn't an option for financial reasons. Your reasons may be very valid. You may be making the best decision under the circumstances. Just acknowledge that it is a decision -- it isn't a case of not having other options.
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You say that nursing home is not an option. I would reconsider that notion. You say that she was placed in one, but did not do well. I'd explore why. Certainly, a facility with trained staff of several shifts of people have the ability to properly care for her. It sounds like you are already convinced that a long term facility will not work. I might examine why I felt that way. Why not locate a place that is better suited to help tend to her needs?

Providing around the clock care for a person with her conditions is extremely difficult for just two people who are already exhausted and pushed to the limit. The stress is unbearable and long term and it will take a toll. I learned first hand. I learned that the best thing I could do was to place my loved one in a safe place where she could receive around the clock care. Realizing your limitations is not a bad thing.

If the other family members only offer limited support, maybe that's all they can offer. I know that I am not able to pull on a patient in bed, lift them up or spend an entire day cleaning. Some people are not equipped to handle that long term. I have a home and a full time business that I run. My love can be shown by arranging for her care. If they refuse to agree to that, then turn her care over to them, give them a deadline and place her in their custody.

Who is in charge now? Who has her Durable POA and Healthcare POA? That person should make the decisions. Is that your husband? I might suggest that he read a lot of material about people with his mother's conditions so he might understand more options and realize that he isn't letting her down by getting help for her care. Is Hospice involved? They can be a great help, if she has reached that stage.
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The state of stress in small doses need to test every person because it makes us look for a way out of the problem. Without stress, life would be boring. Due to stress the human body acquires new useful qualities which are necessary for the struggle for existence. For example due to stress reactions develop antibodies in the fight against infection. While on the other hand, if all people currently living under the yoke of stress is reduced human performance, the body weakens and loses its strength, ability to solve problems.
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My fail safe if my mom's care gets overwhelming is the hospital. I know if I call 911 they will come and get her and that once she is gone I don't have to accept her back and it will be up to them to keep her or find appropriate care in a facility. I hope I never have to use it, but it helps just knowing the option is there.
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I'm sorry you and your husband are going through such a difficult time. It always amazes me when non-supportive family members think they can dictate care to the people who are caring for the elderly parent. It's like saying, "We won't help but you can't get outside help either." You deserve better.

There are facilities that offer respite care. Find a facility in your area that offers respite for a few days. Your MIL stays there while you and your husband get a break. Then you bring her back home again.
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In our case Nursing home not an option due to finanial reasons. Not to mention we tried 3 weeks of skilled nursing and my MIL declined horribly. Not in her best interest to put her in one.
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Why is a nursing home not an option? Is it because of your husband's attitude?

He should NOT abandon his mother. Absolutely not! Placing a loved one where they can get good care from three shifts of skilled people is not abandonment. Or it certainly doesn't have to be. Let others do the hands-on care while you visit often and provide emotional support. Be her advocate.

Dementia, Psych Issues, and Cancer? Good grief! I think this dear woman deserves 3 shifts of rested and trained care people, don't you?
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Curious to see what others have to say as we deal with a very similar thing, no help from other family and nursing home not an option.
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