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If person with Early Stage Dementia wants to stay in their home forever but can't afford $16,000 month for caregivers in this area, what should they plan to do? They can afford up to $1000. Month but that will only cover part time. Have been told as disease progresses 24/7 care will be necessary. It would be devastating for person to sell home and live in an Assisted Living community. They tried it once and left after 6 weeks.
Person is very independent and doesn't follow rules and regulations well! At what stage should a Live-in caregiver be hired and how much could one be offered in San Diego area where salaries are higher.
Would taxes etc have to be paid from caregivers salary and would POA need to handle those issues?

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If a doctor has stated that someone cannot live alone, or your own observations conclude that he can't manage alone, then the dementia is probably beyond the early stage.
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For someone with dementia to say he wants to stay in his home although he can't afford 24/7 help is like a paraplegic saying he wants to walk. OF COURSE people want to retain their independence and their comfort, but there comes a point in some diseases or conditions where it is simply not possible.

I hate to be so blunt, but dementia comes with some limitations, no matter what anyone wants. And some things are not possible without sufficient money.

This is a sad, heart-breaking disease.
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Hi worried spouse. About 15 months ago, that's all I read. About the stages of dementia. I don't so much any more because it's in my life daily. Grammy teacher sent a great link which kind of put it in real life experiences. I think my mom is entering stage 4. How we cope is just that we just do until we can't anymore. Sorry if it sounds so negative. But I do think no. I know this is the longest challenge I've encountered. It's so sad and heartbreaking to see a loved one fade away so incredibley slowly. At least in my case. And it's really really hard to not get negative and depressed. This site helps so much.
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Regarding finding 24/7 care for your loved one, it is NOT about finding anyone who can work 24/7. (Yes, undoable.) It is about having the money to hire at least 3 different people to care for your loved one. Rich people do that all the time, because they have the money. (Think Ronald Reagan.) We poor souls have to settle for nursing homes, unfortunately.
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I dread reading about the different stages of Alzheimer's. I guess I am in denial about it too. How does one really cope with witnessing your loved one going through the stages? It is heart-breaking.
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Thank you Grammyteacher
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Here is a good description of the stages and the mean length of each. Each person is very different and this only gives a general idea
https.www.alzinfo.org/understand-alzheimers/clinical-stages-of-alzheimers/
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Hi SueC1957, Based on your experiences, How long does one usually stay in stage 3? I think my mom is there now. She can do many things on her own. ADLS. Her short term memory is shot and she repeats herself. Also has about 4 or 5 topics she discusses. Usually from the 1950's or 60's. She is obsessed with our dogs and Tv. Has no interest to go to any senior activities.  Forgot to add,  I had a needs assessment done about a month ago.  Nurse said she could be left alone over night,  ( if we go away for a few days). But they would call her every morning and come here once a day for  2 hours to bring her food or take her to lunch and walk the dogs.  She doesn't drive.  The nurse said she s no where near the level of 24 hour a day care, but does need some assistance.  I'm curious as to how long does this stage last.  Thanks again
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AudreyRose: If your loved one is in early stage of dementia, can you enroll him/her in an adult day care program with medication management? It is a lot cheaper than assisted living, the group size is smaller, and has different activities. It would keep the person mentally active. SueC1957 suggested a Seniors Guide, I agree. (Where I live, it is called Senior Resource Guide. But same thing.) There is a lot of information in there, including adult day care programs. But be careful, not all are the same. Visit them and evaluate them. Keep in mind that, similar to assisted living facilities, they are also a business, so watch out for smokes and screens. Trust but verify. Ask friends, neighbors, geriatric care managers or therapists (hire one that works for you), google, or anyone for recommendation. Not everyone will know, so don't get discouraged. Keep looking and asking. Choose the best one for your loved one and enroll him/her. Most important of all, get his/her doctors, social workers, geriatric care managers behind you when you approach the topic of adult day care program with your loved one. Some dementia patients listen to people with authority and not family members.

I made a mistake with my husband 3 years ago after his diagnosis. I encouraged him to go to an adult day care program but he refused. I didn't push the issue and let him be himself. He wanted to be home alone to read, garden, and do whatever he wanted. Slowly he became isolated and his condition got worse. Now he is in an assisted living facility. That is fast to go from diagnosis to assisted living in just 3 years.
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Hi AudreyRose,
I'm in the San Diego, Cal. area too and have worked for a home care company as a (non-medical) caregiver, while trying to find work as a nurse. The company charged $30./hr. to the client (hourly). I was paid $11./hr. (Sad, huh?)
The patient lived in Point Loma. I was not live-in, which is a better rate for the client than per hour charges.
I don't know about hiring a c/g privately. You would have to pay all 4 taxes for them (legally), so you can claim the cost on your taxes. If you pay someone "under the table" and are caught, you'll pay a penalty to Uncle Sam. Also, you should get someone who is bonded or at least bondable. That way, God forbid, if anything happened they would be 'insured'. Also get a mandatory criminal status from the police dept. Ask for prior references and do follow-ups.

It sounds like she can just be checked in on FOR NOW (stage 2-3). Maybe someone to be there for a few hours to make sure she eats and is safe. However, as the dementia progresses, (stages 4), she will need watching and care. By stage 5 (in my case), the confusion got out hand and my mom needed to be placed in a memory facility. We can no longer afford it, so for now, she's living with us. She is at stage 6 and is total care, unable to do anything for herself (well, she can brush her teeth).
I would guess at stage 5, you will need to place her and she won't be aware of what's happening around her or where she lives. Do you have POA? Is it in effect now or only when she can't make decisions for herself?
You WILL need to sell her home (unless she has other money or assets) to pay for long term care by stage 5. I had to move my mom out of her apt. in S. F. at 90 years old after living there 50 years. You do what you have to. She won't be aware her house is sold by the end stages.

Go to the library and get a copy of the Seniors Guide. It's behind the counter. Lots of resources for any need for seniors. I got mine at the Chula Vista library.
It's good that you're planning ahead. I waited until the last minute (denial, I guess) and it was a mess to place her within 2 weeks when she mentally declined rapidly.
If you'd like more info. please private message me at SueC1957.
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Audreyrose,
What state is this person located? I ask, because, some states do provide Assisted Living/Memory Care benefits, for those who qualify. (Doctor has to state they need supervision or assistance with daily activities.) Owning a home doesn't normally disqualify you. Income is considered. Many states have rules similar to those for Medicaid, though, it's not the same as Medicaid, which covers Nursing Home care. I'd consult with a professional, perhaps an Elder Law attorney who is familiar with the laws in your state. They can explain how it works and how she might be best served. It's my understanding that some states have benefits for those who want to stay in their homes, but, I'm not familiar with them 

I'd also read a lot about dementia. It can progress at different rates with different people. Most of the time, the patient isn't aware how much they are being affected. And, it's often not their choice to move to a facility. Still, it often has to be done, unless they are financially able to pay for 3 shifts of people to move in to care for them around the clock. Whether they are fond of the idea of receiving the help is also uncertain, but, it's necessary. I might explore long term plans, considering her needs and resources.

If you're planning on hiring someone privately, I'd get legal advice on that too, as there are some many factors to consider, like security, insurance, liability, taxes, and they can't work around the clock. How many people can she afford? It's a lot to consider. I hope you get more ideas and I hope you can find some answers.
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Thank goodness for Medicaid [which is different from Medicare] because Medicaid will pay for all the care and housing if the patient moved into a Nursing Home.

But what to do in the meantime? That's tough. As you had noticed that professional caregivers are expensive, but worth every penny when you get excellent caregivers.

Downsizing is so very difficult for someone who does not want to move from their home. I was lucky Dad was ready to pack his suitcases, sell the house, and go to senior living. When my Mom was alive, a team of wild horses couldn't get her out of that house [sigh]. With my Dad he started out in Independent Living, thus had a very nice 2 bedroom apartment with full kitchen. Later down the road he moved to Memory Care. This made downsizing much easier.

As for a live-in caregiver, if the patient needs 24 hour care, there is no way one person can work 24 hours a day, and she will need to do that depending on the stage of dementia. The patient needs a village, such as Assisted Living/Memory Care.
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I am interested in the advice too...
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