Beginning the search for care for Mom with dementia. Any advice?

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Our parents (83 and 84) live with us, She has severe dementia, and I am looking at options. We live in Lincoln Ca. Probably will wait until we need to move her into an assisted living facility (which may not be long). She is constantly disoriented, incontinent, strange sleep patterns, frequently angry etc....Her husband is her immediate care giver, but my wife and I take care of both of them. Looking for options, should we move her out and keep him here?? Move both out? What about cost?? Anyway just starting to search as I said.

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Excellent resource for caregiving tips, clinical trials, ALZ and dementia info: www.nia.nih.gov ; 36-hour day book is a good read.
http://www.alz.org/sewi/documents/book_title_list_may_2013.pdf
Also, check YouTube videos by "Teepa Snow" -- she is very good at letting you know the realities of the disease and behaviors -- that may give you great insight and compassion into the disease.
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Additionally, Residential Care Homes are very cost competitive when all the a-la-carte services are tacked onto the corporate facilities. Most charges are all inclusive. A little homework makes all the difference.
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Definitely A Place For Mom is helpful. I was leary of Residential Care Homes but now find them to be MUCH preferred over the large corporate complexes. Many have "aging in place", hospice access and much more personal attentive care than the large outfits which can drive you nuts with hoops to jump through. By all means check a few out. The place we settled on has mom in her own room with her own things and wonderful care compared to the nightmare we experienced with a corporate chain.
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Call A Place For Mom. I am in the Elk Grove, CA area and just had to call. Really helpful and kind. They can discuss options of all kinds and give you referals and approximate costs. No obligation.
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My aunt and uncle moved back into their home although they really are not able to be there, but they hired a lady who comes in days and prepares meals & runs errands. She is helping them to be able to stay in their own home.
I hired a lady to live in with us for my 103 yo mother. We had my mother's inlaw suite for her caregiver and I moved her into my downstairs bedroom. It is working out well for all of us. My caregiver we pay for 25 hours per week and she helps with meals to boot. We live like a family and we buy all the groceries. She helps with meal prep & clean up in addition to the 25 hours since she is sharing the meals with us.
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When I was searching for geriatric care and help, I came across several companies with shiny websites and celebrity endorsements that claim to have "senior living advisors" to help you make a decision. I found these companies are really just commercial middlemen. In my opinion, the best way to find either in-home services or a new place for parents to live is to get referrals from LOCAL professionals, neighbors and friends many of whom have already gone through the process.

When I found a community in which I was interested for my in-laws, I asked everyone in the family who lived in the area to tour the facility on different days and at different times. You can imagine my relief when they all called me and reported the same things: residents are happy, residents spoke enthusiastically about the place, residents and staff address each other by name, it's clean, facilities are top-notch, service is outstanding. If you are discouraged from talking to residents and staff, run!

As for in-home care, here in NYC we are lucky to have the Visiting Nurse Service of New York, which has been around for over 100 years. They are a non-profit and have won "Best In Class" awards and their staff have won nursing awards. The building where my in-laws now live has also won many awards for "Best In Class" and they are proud of their achievements as they should be because it takes a lot of hard work to care for elders in a dignified and respectful manner.

I looked up Lincoln, CA and discovered you are near Sacramento. I found the Foundation Aiding The Elderly. As I was browsing around their website, FATE just filed a lawsuit against the State of California for failing to oversee nursing homes properly. Their website www.4fate.org offers lots of valuable, FREE information and the organization was named a Great Nonprofit in 2013. I noticed among their services is referrals for elder services. Good luck to you!!!
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Have you considered bringing in caregivers to relieve all of you of the burden of hands on care?
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I'd ask a neutral party near you (like a Care Manager) to evaluate and help with the search, at least initially. Spending a few hours with a non-biased professional in the senior industry will save you money, time and possibly frustration and regret in the future in case you make the wrong choice. Plan early and stay ahead of the curve as much as possible, then you're not running scared when you have to make a choice at last.
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Jim - I'd be concerned about placing mom in a facility that doesn't meet the realistic level of care that she needs. If she is constantly disoriented, totally incontinent, etc. she may not be a good fit for AL. She may actually be better for skilled nursing care in a NH. I would carefully speak with her MD as to where she is within her dementia & what level of care she requires. If you can get your parents to see a gerontologist, really that would be best as they can be better evaluated for a plan of care.

Cost varies. For my mom in TX, IL about 2K, AL about $3,500 &NH about 5-6K. IL & AL private pay with just some AL statewide who participate in a Medicaid diversion for AL payment for a select # of beds & those beds are on a waiting list which seem to only come from those there already private pay for a year or 2.

Often AL are free standing and do not have a NH within their system, so if AL doesn't work you end up giving to go through all this again and under pressure to move mom ASAP from the AL. Total panic & crisis for all. What might be a good idea is to find a couple of AL that everybody likes & can afford & have mom go there for a " respite" stay of a 2or 3 weekdays. It gives the AL an ability to evaluate IF they can meet her needs without you being tied into an admissions contract.

For my mom, when she was going into IL, they required 2 " play dates" for mom to go & spend part of her day @ the IL: 1 was tour & lunch for both her & myself, and the other visit was a long day so exercise class, then another tour with visit to the apt she would move into, then lunch & short rest time & then the scheduled afternoon activity. & all this on her own! Believe me it was an evaluation as to whether she was OK for what they expected of the IL residents. This was a tiered facility from IL to AL to NH & has a hospice wing. I thought it would be the perfect solution as mom could stay there till forever problem free. For AL, it too had "play dates". They told me they did this for all admissions as family is often totally unrealistic as to their parents true ability and they don't want to have to move the elder 2 months later.

As a footnote to this, when a couple of years later when I moved mom from IL to NH, her tiered facility would not budge on mom not being allowed into the NH section - their stance was that mom was ok for AL despite her MD writing orders for skilled nursing care aka NH needed. The facilities MD would not sign off on her admission into NH sector. I moved mom into a different NH and got her on Medicaid. Personally I think a lot of this had a profit motive as IL & AL are almost always private pay while NH can take Medicaid.

The costs are just staggering. If they live long enough, they will run out of $. Really take a hard look at your folks finances before they sign off on any admissions contract. If dad could realistically do well still living with you all once mom is placed, you want to do whatever to maximize what assets he can keep and still have mom ok for Medicaid. It's a lot to deal with, I'd suggest meeting with elder law attorney before mom moves anywhere. Good luck & keep a sense of humor in all this!
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I learned a lot from having to relocate my loved one to a new facility. One thing I learned is that the upscale, fancy assisted living facilities have issues just like more modest places. I also learned that when you have a dementia patient, as you describe your mom, it is considered extensive assistance by the staff. Most assisted living facilities are not equipped to handle it. As a result, you may get repeated phone calls reporting all the issues she is having and wanting you to come and take care of it. For people who work, that's not an option.

I think that a thorough evaluation of your mom's needs would be a great idea. Keeping in mind that her skills will be declining and she is likely to need more assistance down the road. I discovered that a Memory Unit was better trained to take care of my loved one. Since she has been there, I have seen a huge difference. They understand dementia and treat the resident accordingly with extra care and compassion. They know how to redirect and are on top of things.
The place my cousin resides is in an Assisted Living Facility that has a wing devoted to Memory Care. That might be an option for your parents to stay under one roof, but your dad would not have to care for your mom there, but could see her everyday without pressure.

Cost varies, but there are ways to get in. Depending on their fiances, they may qualify for financial help or they may have to spend down their resources. That's a complicated issue and I would check with a professional on Asset Protection before you apply on their behalf.

I wish you all the best.
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