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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.

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MidKid,

Great reply. Makes me feel comfortable about taking my time to really get a feel for the places I visit. So sorry your family had that horrible experience with the facility your mother was in. Unfortunately your mom made a mistake in judgement by picking that place and they sold her on it too. Tough spot to be in.

So nice that you and your siblings work together to resolve issues. May not be perfect but at least you get some assistance from them.

My siblings aren’t very involved and have never failed to criticize things they know nothing about. It has all fallen on my shoulders. I do have a wonderful husband who helps. I’m grateful for him.

I’m glad your mom is in a better place now. One of the places I looked at was very depressing too. I hated how the residents looked. They looked like zombies, no interaction with each other at all.

The food looked like my school cafeteria food which is why I ate a peanut butter and jelly sandwich just about everyday!

One day my mom was out of bread and she made me buy the school lunch. Yuck! I couldn’t eat it and foolishly thought a nun was bluffing when she said if I didn’t eat the school lunch I would not be able to play at recess with my friends. I learned very quickly that nuns don’t bluff, (even though she was kind and not one of the nuns who smacked kids with a ruler). I hate the thought of my mom or the other residents eating that food.

My mother is small and can’t afford to lose weight. My mother would be horrified at seeing a place that depressing. I couldn’t live there. It smelled funny too. The shower section was strange also. The toilet in there was low without bars to get up more easily. My mom has Parkinson’s and falls. She couldn’t handle that. Any safety issues are big red flags for me.
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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 2019
That’s crazy! No one can pay more than finances allow. Thanks for info. Appreciate it.
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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 2019
Thanks so much for your support and kind words. I appreciate it.
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When my mother had hip replacement, she went to one facility(!) and was given such a song and dance by the "social director". She was shown only one of the 4 VERY lovely, private rooms and told she'd have one "like that"...also shown the common eating area, but assured she could opt in for "meals in'. I don't KNOW how she missed the "meat and potatoes" of the place-probably b/c she went without one of us kids and she wanted to be close to my house. (I do not know why, we really barely have a relationship). She signed on to be xferred there 3 days post op. I did my best to get her to change her mind--this place is well known as having great REHAB but terrible day-to-day care.

Off she went. Semi private room, most depressing place I've ever seen. Horrible color scheme, stink of old urine, stained, gross old carpet, patients strapped into wheelchairs parked in the hall. She LOST it. I was there before she got there and I talked to the SW who set this up. Warned her this was not going to work and be ready for a huge fit---It was her word against mother's--so mother was checked and and began the holy reign of terror. Screaming, throwing things---she peed herself on purpose, wouldn't eat b/c they didn't DO concierge treatment--she had to go down to the common room. Or worse, called me to bring her McD's. She would NOT go to the common room.

I'm not sure she ever got out of her wheelchair--she was so mad at me (I don't know why) and I left and called older sis. She came down and made a couple of calls and found a LOVELY place 2 miles south that cost a grand total of (gasp) $25 a day more. Mother wouldn't pay it, so sis just got out the checkbook and paid the difference and never went back. That's the financial difference between the most disgusting place I've ever seen to one of the nicest.

My takeaway from this is: check everywhere. Look in the wings they don't want you to see. If the NH Isn't transparent in its care for its patients--you'll see pretty quickly. Eat a meal there. Check out the list of activities. Find out what the CG vs patient ratio is. See how open they are to having family in. A good place will have nothing to hide and won't mind family popping in. They may actually appreciate some help.

Personally, I asked some of the patients. None of them were happy, not in the least. They had no advocate whatsoever. So their complaints/concerns were unheard. Broke my heart.

I was already too familiar with this place and my worries went unheard. What didn't need to be so dang dramatic--became one of those events still referred to as "that dump you stuck me in".

You are so wise to take your time and make many trips to as many places as possible. Check on the internet--this place mother chose had ONE star.

Mother knows better now, and has coverage for nicer places. I am sure she will wind up in a NH eventually, and we already know of several. Sis will not do hands on CG, and neither will YB, but they will throw money at any and all problems.

Good Luck.
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You are correct in feeling if one visit is enough. All of my 1st visits were scheduled, then I dropped in at a different hour. If things were the same I kept that facility on the list, if they were awful I planned a 3rd visit, unannounced because we all have bad days and I to wanted him closer, which limits the facilities.

I wouldn't give your mom a choice. From all you have told us, she will not be pleased with either one and the games will begin. You have been her caregiver for 14 years, you are more than able to make a decision about what is best for her needs, interests etc.

She will eventually come to terms with her new home, albeit not without running you through the meat grinder first. You are doing the best thing for everyone involved, so stay strong and determined and you will find the best possible fit.

If she can afford Brookdale, they are a great facility. I have their standards as part of the needed criteria if I ever have to be placed.

I can feel that you have hope in your responses, a lightness comes across. I am very happy that you are feeling better and finding peace with your decisions. I bet your husband is gobsmacked. ;>)
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NeedHelpWithMom Feb 2019
Is this really real,

Makes total sense to me about more than one visit. Thanks for breaking it down. I like the unannounced idea as well.

My husband is very pleased because he feels like I am starting to feel hope again.

I sincerely hope that I will select the best place for mom. I feel if she knows about all of the options she will stress out. She tends to be a chronic worrier. That’s a miserable way to live. When I have said to her to go ahead and excessively worry over everything if she feels a need to do that but don’t count on me to be a worry buddy, then she gets upset and says that she has to worry because it’s important. There are certainly legitimate issues to be concerned about. I completely understand that but she has made excessive worry a past time. I think she’s bored but refuses to engage in anything. It’s sad. Maybe in a care facility they can coax her to enjoy socializing with other residents. I hope so.

I think excess worry becomes a habit and it’s learned behavior. It’s odd though, because her mother, my dear grandma was not at all like that, nor was my grandpa.

My dad stressed out a lot. Maybe she picked it up from him. His blood pressure was always high. After his bypass surgery he had a stroke. It wasn’t in his nature to relax.

It’s contagious. I used to worry, worry and worry some more all the time. Drove me and others around me nuts. I had no peace. Then one day my mother in law said to me that 99 percent of what her mother worried about never happened. That really stuck with me and I was able to break the pattern.

I wish she wouldn’t place so much much importance on what my brothers think when they do not know anything about her day to day living.
I suppose it is because they are still her sons that she loves and I get that. Doesn’t mean that I have to share her opinion though.

I’m beginning to let go of being bothered by their opinions. It’s really foolish because I am now accepting that I am not a failure for not being able to convince them of anything other than what they choose to believe.

They are extremely narrow minded which is the opposite of who I am. I have always seen the gray areas, they tend to see in only black and white terms.

Life can get complicated and it can take awhile to sort through it. One step at the time and I’ll get there.
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The website that Agingmyself is referring to is Nursing Home Compare.
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NeedHelpWithMom Feb 2019
katydid,

Thanks a bunch for that info. I appreciate it.
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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 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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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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>>What about adjusting to new home? How to break the news to her if we take this route?"<<

Ask the people who run the home(s) about these two problems. They've solved them many times and will have experienced advice and alternatives from which you might find a way to chart that course.
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NeedHelpWithMom Feb 2019
I did ask about adjusting period. I’m sure it’s difficult at first.
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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 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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Hi needhelpwithmom,

Yahoo, baby steps and I can't tell you how happy I am that you are looking into choices. You have come a long way lady, great job.

First thing I would recommend is that the facilities you are looking at will accept Medicaid, I would be surprised if Brookdale does. Find out before you go look. They are resort type facilities and other places that are just as good will look depressing and unacceptable after touring a Brookdale facility.

I would talk to someone at the VA and find out how much she would be looking at receiving, my friend gets 3,600.00 a month but he was the service member and some of his condition is combat related, your mom could get as little as 800.00 monthly. Well worth finding out before you make the final decision. Medicaid will pay the facility the contracted rate VA A&A doesn't work that way.

I think honesty is the best policy, mom I can't continue to care for you, it is costing me my own life, period. Of course she will give you all kinds of grief, guilt, tears, anger and anything else she thinks will help her stay put. Be prepared.

Your siblings, I would send an email with moms new address, since they couldn't be bothered to help they are not entitled to any more courtesy then knowing where she now lives, send this after you move her. Based on what you have shared, be prepared for them to attack you. Have some facts ready to give them, such as they couldn't even be bothered to take her for a couple of weeks so you could have a rest, they didn't offer one thin dime to help you hire help when they weren't willing to do it, 40% of all caregivers die first and you are feeling like you are about to become a statistic. If they don't treat you with respect and kindness, hang up the phone.

You've received good advise about what to look for. I looked for a place that had a lot of activity, were the majority of the residents up, clean, moving around. Did the place stink like a bunch of soiled diapers, was the staff overwhelmed or did they seem friendly and well rested, what did the food look and smell like, did they have fun activities for the residents everyday, how did I feel in the facility, did it just feel like something was wrong. I toured one that not one person was up and about resident or staff, I came right after lunch and didn't smell any food and all the rooms doors were shut, no way would I put someone there. It felt like a morgue. Use your instincts as well as what you see, they will tell you anything to get a self pay in a bed, and that's what she will be until all of her money has been spent down.

Oh yeah, ask them what is their policy for dealing with a screamer. My dad had one across the hall and it drove him nuts, he could block most of it out with closing his door and turning up the volume on his tv, she had a broken foot and was mad that she couldn't go home for rehab so she decided that if she was unhappy, everyone with ear shot was going to be unhappy, the fire and police were called by her every day. That was the worst experience ever. She should have been sent to a psychiatric facility.

Best of luck finding a facility that will accept Medicaid and meet all of your moms needs. HUGS!
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NeedHelpWithMom Feb 2019
IsThisRealyReal,

Always so good to read your replies. I connect with how you think and feel.

Thanks to you and many others I know I have to look at the entire picture and find solutions. I don’t even think I realized how lost I was. I am grateful for others pointing out what I failed to see. It becomes overwhelming to be full time caregiver.

It’s a shame that some of us as caregivers truly lose ourselves due to being so dedicated to caring for our loved ones.

I have only seen two facilities, so still at the beginning of this journey. I have a few more on my list that I am considering. Looks like Aid and Assistance from veterans benefits will be about $1200 if approved. That’s what I was told with Patriot Angels.

The first place, Brookdale looked nice. I had a good feeling while there.

The second place, Heritage Manor just made me want to cry for a variety of reasons. It was depressing. Everyone looked like zombies, not much interaction between residents. I did like the head nurse that showed me the facility though. Can a person judge by just one visit? My first impression was not very good. Do most nursing homes have that ‘hospital’ feel instead of a home? The nurse insisted it was a nice place to live.

I do feel like I have made progress mentally and don’t feel quite as helpless after seeking the support from this group. I will keep everyone updated and I learn so much from reading about other people’s experiences.

I do feel like I have to consider what is best for my mother, my husband and I. My siblings haven’t been involved thus far and I agree with your sentiments. It’s best that I only focus on what is best for mom, my husband and myself.

You have always given me great advice. Thanks so much.

Hugs go back to you.
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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 2019
Thanks for telling me your experience with Brookdale. I appreciate the feedback.
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Apply for VA Aid & Attendance benefit if you haven't already. It takes around 6 mths, or less. Many Assisted Living facilities/nursing home will take your mom with a pending application. They may even file the application for you so they can get their money.
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NeedHelpWithMom Feb 2019
Good to know. Thanks.
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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 2019
Great idea! I’ll check. Thanks.
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My father was a resident at a facility operated by the first company. Anything extra there is a charge for and it can add up quickly. The aids were very good just not enough of them and this facility wasn't full. Went through 4 directors in the three years the was there and it took forever to get a final bill after his last hospitalization(out of wheelchair as stuck getting out of elevator), He wouldn't have been able to go back as at that point after hospital, he needed rehab and than NH, than went on hospice and died two days later. Be sure to check online reviews and really read the contracts.
He was private pay and was able to get VA aid and attendance with help attorney It really didn't take all that long as he was over 90 and they try to get those done fast.
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NeedHelpWithMom Feb 2019
It’s a shame when there is a shortage of help. Heard that lots of times.

Even recruiting volunteers can be an issue. I know when I volunteered at my kids schools every week, same people volunteered over and over. Teachers couldn’t get new people to pitch in.
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Medicare does not cover LTC. Medicaid pays for longterm care when the person fits their income requirement. Which means, they have no money except SS and maybe a pension. There is a cap of how much income you are allowed. I am just giving the basic info here. There's alot more to Medicaid.

Have you filed for VA help? If so, was it Aid and Attendance? It takes a while to get this, so don't rely on it till its in Moms account. My Mom was turned down even though what money she had was going to her care in an AL. I may have been able to appeal but she was entering LTC with Medicaid and you cannot have Medicaid and A and A too.

Medicare continues when Medicaid is involved. Medicaid becomes the secondary. Medicare pays 80% of what they consider reasonable and Medicaid picks up the rest. Medicaid pays for dental and eye exams and glasses.
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NeedHelpWithMom Feb 2019
JoAnn,

Yes, Aid and Assistance through Patriot Angels. Are there other veteran programs to look into?
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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 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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Medicare will pay for respite when a person is on Hospice it does not normally cover respite.
As far as to what is considered "extra" get the list as to what they typically do and EVERYTHING not on that list is extra. Laundry, medication, would probably be extra if mom is incontinent that is extra in many cases. And as she declines the costs will increase. While one place may look more expensive to begin with if they do not charge for every little thing that may be less expensive in the long run.
Are there more than 2 places you can tour?
And is your Mom going to have any say in this? If so bring her on a tour as well after you have done your tours and get her input.
You might even want to ask both places if you can place your Mom there for a week respite. This will give you a break for a week and will give your Mom an idea if she "fits in". Do this at both places a few weeks or a month apart and see how it goes. (Oh and the week will not be free but I bet it will be worth it)
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NeedHelpWithMom Feb 2019
Eventually I would like mom to see facilities of those that are suitable but she isn’t up for going out a lot and I don’t want to unnecessarily exhaust her. She tires so easily.

I do like the suggestion of trying a place out for a week. Thanks.
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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 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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You can't get veterans bennies and Medicaid both. I have read that veterans bennies take a very long time to actually get, and are best used for in home care.

You want a price list for additional services. They can add up.

You want to know what happens in an emergency, I.e. power goes off, a tornado,etc.

Others will chime in.
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worriedinCali Feb 2019
Yes it’s better to get on Medicaid because the VA won’t fully cover LTC for a spouse. Unless mom can afford to pay $2k or more per month, she needs to get on Medicaid instead of getting VA benefits.
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