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First of all, neurologists and primary care doctor do not feel she needs nursing home or hospice yet. Primary has suggested palliative care for home. I respect them as her physicians but they are not with mom around the clock as I am. They don’t see how much care I provide for her. I have told them how much I do for her. To avoid falls they tell mom to rely on my support. I have been running on autopilot for a very long time. Of course, this has taken a toll on me.


I am exhausted doing it all since 2005. Mom has Parkinson’s and has fallen several times. She has bad balance and is weak. We just completed home health for physical and occupational therapy. She did fairly well but doesn’t keep up with her exercises as they suggest to gain strength and balance.


I know Parkinson’s is a progressive disease and will not improve. She is very good at taking her meds. Parkinson’s meds, brand name seizure meds, (Dilantin) which the doctor said she could go off of due to not having a seizure since 1996 but she insists that she remains on it because she’s terrified of having a seizure. So the neurologist has continued to prescribe it for her. (Very expensive medication because it’s brand name and he doesn’t like the generic), low dose cholesterol meds, baby aspirin, vitamins, aspercreme. That’s it. Not a huge list of meds.


Thanks to many wonderful posters on this site, I decided I want to explore my options of what is best for my mom and my husband and myself for the future.


The first place is an AL place very near my home. It is for profit. It’s called Brookdale. They told me mom could possibly qualify with benefits from a veteran program since my dad was a vet. Price quoted from this place was $3150.00 base price, extra price for additional needs. Not sure what is considered additional needs. I do everything for mom!


The other place is Heratige Manor, also very near my home. I think it may be non-profit, have to double check that. Think it is more like a NH. Not sure if veteran benefits apply, have to check. She needs additional funds for her to live at a facility so I am hoping we will receive funds.


I don’t think either place is super large like some places. I think it will be a bit more personal rather than a really big place. What questions are most important to asks? What about adjusting to new home? How to break the news to her if we take this route? How to break news to siblings who haven’t helped? Whew, my head is spinning thinking about so much. Think each place has skilled nursing unit. I have a lot to learn!


Veteran money is supposed to be available until death. Place called Patriot Angels. Anyone used them?


They only accept Medicare for skilled nursing part. The rehab part. She doesn’t have Medicaid. Do you give up Medicare when you have get Medicaid? Medicare may pay for respite care. Is that a good way to try a place out?


Please give me feedback. Thanks a million. This site has been a blessing to me due to all of the wonderful advice from smart, caring and experienced people. I appreciate it so very much.

Hi. I think you may find this article helpful: https://www.agingcare.com/articles/choosing-a-long-term-care-facility-tips-from-a-certified-nursing-assistant-436396.htm
Your family is very lucky to have you advocating for them!
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NeedHelpWithMom Feb 6, 2019
Thanks so much for your support and kind words. I appreciate it.
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Our experience is that we had to look at the "big picture". What are the diagnoses of your mom and potential future needs. In our case both parents are dementia/Alzheimers patients, we needed initially Independent Living (not requiring a lot of support - we had Home Support in for 4 hours a day plus medication reminders 4 times a day) because they were functional and needed "cues and reminders" . We knew that in time (not knowing when) that they would eventually need to transition to Assisted Living and on to Memory Care as their health deteriorated. Having known that we looked at CCRC places- continuing care retirement communities. Where they can "age in place" or move within the community from one apartment to another when the time comes. Presently they are in Assisted Living section. Truly amazing. A huge burden has been lifted. Nursing staff on duty 24/7. MD on call 24/7. Nurse practitioner on site 5 days a week. They do the laundry, no cross contamination. Manicures in house, haircuts, perms as the family or resident scheduled. Residents wear call buttons for CMA to respond (and response time is pretty good). Activities are awesome. Many things are Resident driven- residents meet monthly with the Chef to complain/make recommendations. They have monthly resident council meetings about repairs needed or activities they want to do. The residents also have Movie Night every Friday night. Outings. No longer do we have to "worry" about their safety. We can stop in and visit whenever we want. Them being in Assisted Living relieves us from the burdens we had been carrying which were weighing us down physically, mentally and emotionally. They are provided 3 meals a day (which at home and in Independent Living) they were not receiving. They were forgetting to eat. Mom had lost soooo much weight. Not only the given 3 meals a day but they have a 24 hour menu available they can ask for sandwiches (BLT, Grilled Cheese, Turkey, or ice cream, cheese cubes and crackers yogurt, etc). The only items we provide are drinks they like and specific snacks they like. They have a small fridge in the apartment.

I encourage you to find a place that has "open door policy". Which you can see her chart to ensure she is getting her meds as needed. Sounds like she is only on a few medications which is awesome. My in-laws are on a multitude of medications. I have Epilepsy - and personally I am shocked that Dilantin is still used in 2019. I was on it as a child ( I am 61 now) and FOR ME caused permanent gingival damage. Personally I was excited to get off of it and on to one that controlled my seizures better with less visual damage to my body. It has been 19 years since my last seizure however I cannot ever come off my medication no matter how long since my last seizure.

The "extra cost" are these. There is a base cost. Then the social worker and the nurse administrator will do an assessment to determine the Service Plan. Based on that assessment and that facility (you should review the contract), they may assess "points" (depends on facility). They talk to resident about activities and socialization, cognitive patterns, moods and expressions, safety, bed mobility, transferring, walking, dresing, (dining, eating and nutrition), assistance in the bathroom, grooming (ADL), bathing (ADL), laundry, hearing, speech and vision, pain, falls, respiratory, cardiac, skin integrity, medications.

Also before entering into our Assisted Living facility we transferred our parents PCP care from their existing one to the Community PCP. Because the MD is available 24/7 and their needs can be met immediately. Before entering the facility both had to have a COMPLETE physical exam by the new PCP prior to entering facility.

Instead of going over 5 days a week to ensure mom and dad have been taken care of, we can now take our life back a bit and go over 2 -3 days a week if we like a call in between.
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NeedHelpWithMom Feb 4, 2019
You’ve given me lots to think about. Mom has Parkinson’s and I did ask if anyone else in the AL had Parkinson’s and was told yes.

There are so many things to consider when choosing a place.
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Best advice I was given when looking for assisted living for my dad was to find a place convenient to my house. You will still be going over constantly to visit and a long trip or bad traffic can get old fast.

Next, from the consumer perspective non-profit vs for profit makes very little difference. It is a way of incorporating under tax law that has different tax and investment benefits for the corporation. Just because something is non-profit doesn't make it better, more caring, or cheaper.

At my dad's assisted living the head of nursing makes an assessment of what level of care is required, although you can request/suggest a higher level. It is based on ability to do ADL's, cognitive issues, etc. My dad can do all his bathing, toileting, etc but needs help keeping track of his medicine so we have the minimal level of care which is meds administration. When I need additional things done for him, such as changing hearing aid batteries I pay an additional charge (usually 1 hour at $20). I use that service when I'm going to be out of town for a week.

Before you make a decision spend some time hanging around the place and stop and talk to a few residents but not ones handpicked by the facility. I just sat in the lounge for a little while to get a feel for the place and would chat and ask questions of some of the residents. I got info not just on this facility but on other facilities where their friends were or where they had previously lived.

My dad would, of course, rather be living in his old house (which was falling down around him) but he is content where he is, likes the food (although he has a kitchen and continues to keep sandwich stuff, snacks, coffee, tea, etc). I feel much better because even though I visit and check on him all the time I have backup support from the staff. When I'm out of town they will call me with updates on how he is, when I'm concerned that he has left his phone off the hook they go up to his apartment and get it back on for him, etc. The lady at the concierge desk can be very helpful in letting you know about his activity in the level - she keeps a close eye on the comings and goings of everyone and can let me know if he is coming to meals, attending any activities, etc so I don't have to question him (if he would even tell the truth!)

Best of luck with your search. It is hard and we are here to give you support.
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NeedHelpWithMom Feb 4, 2019
I like the idea of hanging out and talking to residents. Makes sense to me.

I too want a place near me. I don’t want a long journey to visit mom.
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Ask a state official, if the facilities in your state are required to have a "black" book. It may be white, etc. In GA, each nursing home has to keep a book that has complaints, charges, etc. for potential "customers" to review.
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NeedHelpWithMom Feb 4, 2019
Great idea! I’ll check. Thanks.
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Hello: we have used several facilities for our folks. Brookdale is one we used and we are transferring my mom back to Brookdale this week. My suggestion to you is to remain as involved as you can be, and to get to know as many staff members and residents as possible. No situation is ideal, but some places are better then others. It depends on your loved ones needs, the staff, the composition of residents, as well as the obvious stuff for health and wellness. We learned that some things have to give and that the placement of the facility with the best “ fit” changes as the disease progresses. Best to you as you navigate this next chapter.
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NeedHelpWithMom Feb 4, 2019
Thanks for telling me your experience with Brookdale. I appreciate the feedback.
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Needhelp, do not call a place for mom.

I have never been treated as poorly as they treated me.

They don't listen and all they want is the percentage that they get if they direct you to a facility. So they are directing people to the most expensive places regardless of the actual need.

They tried to guilt trip me into paying over 3k a month in addition to my dads entire SS check to put him in a facility that was completely inappropriate for him.

I am sick of them advertising on this forum, it is to be expected because they have no integrity or ethics.

You will do much better on your own.
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NeedHelpWithMom Feb 6, 2019
That’s crazy! No one can pay more than finances allow. Thanks for info. Appreciate it.
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One thing we have done is selecting a Continuing Care Retirement Community for ourselves is to walk down the hall in their skilled care unit. It's not typically included in the Marketing Tour.
Even though we may never need it, I think it reveals a lot about a facility if the least able residents have a pleasant environment and call lights are being promptly responded to. If I find a smelly wing with patients crying out for help without observing a response from staff, I'm concerned, and don't want to end up there.
We also chat with residents that we find in public areas, not just the "ambassadors" you'll be assigned to by the facility.
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NeedHelpWithMom Feb 4, 2019
Yeah, the smelly thing is really sad. Any neglect or abuse is horrible. Speaking of which, is there a way to tactfully ask a facility about problems that have occurred and how they have been handled.
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Thanks everyone for great responses to my question. I have more places I want to see. Takes time but I feel better after starting this process.
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NeedHelp, I think the Medicare website has reports of investigated problems at each facility. I know I've seen that somewhere. Maybe on a State website. The States regulate nursing homes and investigate reported problems. You could even try a google search for the name of the facility.
Talking with visitors as you notice them coming and going is another way to find out.
Frankly, I wouldn't worry about being tactful in asking a facility if they've ever had any reports or investigations. Just ask if they have. I hope they would appreciate your concern.
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NeedHelpWithMom Feb 5, 2019
Aging myself,

Thanks, you’re right. I need to speak up about my concerns and a good facility should appreciate that.
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The website that Agingmyself is referring to is Nursing Home Compare.
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NeedHelpWithMom Feb 5, 2019
katydid,

Thanks a bunch for that info. I appreciate it.
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