Has anyone else been through the nightmares of placing a parent?


I am starting to wonder if I have been cursed. I wonder if it is common or if anyone else has gone through paperwork h*ll before and after placing your parent in a Memory Care Facility. I felt very lucky when I contacted A Place for Mom and got a wonderful gentleman who was incredibly helpful finding an appropriate facility for Mom given her mental/physical issues and budget.

Now, after making my choice, I was given a packet of paperwork to fill out as well as the Healthcare Provider/Doctor papers to fill out. I did as I was told and got those papers to HCP/Doc and received some papers back from them telling me this section I was to fill out. They did not send me back the whole packet and I foolishly thought they sent those to the facility. They didn’t. I had to chase them and when I got papers, certain ones were missing, wrong, the RX list was not updated, had old meds still on there and neither one told me that EVERYTHING down to a Tums and a cough drop had to be on that list in a very specific fashion, meaning......Halls menthol triple action (exact kind) and how many they are allowed to have per day. Who even thinks about this crap when your dealing with the stress of having to move your parent? So, I finally get the list and have to have them fix it not once but twice!

Next, finally get her in, late because I could not admit her without her HCP filling out ALL the papers correctly and that was h*ll. She has mid to severe dementia after a fall that she did not recover from and the other nightmarish condition of chronic lymphedema in one leg. I have been caring for it for many years and one of the first things I asked the facilities I was inquiring with, if they knew how to care for this condition. I was told they would be happy to learn from me how to do this. Now I am told her HCP covers people to come and do this. Wonderful! I go to meet this person yesterday and she asks me how I care for her leg and as I explained my schedule of how I care for it, she tells me that she has been approved for only 4 visits! I was aghast. This is a chronic condition, it can be managed but it never goes away. So, now I get to fight to just get my Mom the care she needs all the while, we are paying a good chunk every month for me to still go and care for her leg until I get this worked out.

It seems never ending down to scheduling a new person to wash and set her hair at the facility. Is this common? Don’t they offer assistance to the children who have no experience placing a parent, who are stressed out already, to make this process easier? Maybe assign a person to help navigate through this whole process and deal with getting paperwork and care ready to go PRIOR to the move in? I cannot believe I am the only one on the planet who has gone through this and would love to know I am not alone.

I find it also interesting that the facility had no problem getting me to cut a check to “reserve her space” even though they did not have all the required paperwork from the HCP/Dr. to allow her to move in. The important stuff like her leg care and her hygiene were not important to get set up before she moved in. I don’t get it.

I feel that so much of this could have been avoided if the facility just provided help to those of us who have never done this and needed guidance and assistance instead of tossing papers at me to get filled out with no specific instructions.

A huge amount of added stress and TIME making calls, e-mails, meeting people, etc. and I still am not done. A HORRIBLE EXPERIENCE.

Sorry for the long rant but that is actually the condensed version if you can believe.

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It sounds like you put her in AL when she requires chronic wound care which means she should have been placed in a SNF. Please locate from your state how they define the two types of care so that you understand. When you met with the AL marketing, did you ask those specific questions about her legs? In my mom's state, AL nursing can only have LPNs who have a scope of practice which is different than the neighboring state. They cannot give injections or order meds. Family has to take her to doctors, provide diapers, fill meds, clip nails and provide enough bed protectors to last till laundry days. In the past, we had to pay extra for daily nursing when chronic issues occured, which dressing and wound care exceeds the policies if many ALs. If you cannot be there daily for her but wish to avoid increased costs for leg care, then ask the marketing director for referrals that their clients use. Medicare services as you found out are limited.
The paperwork is required and it certainly is frustrating to novice caregivers. I guarantee that after you go through it once, it will be easier for future care. So is keeping all financial statements related to her care which I hope you are doing before she needs Medicaid.
I realize it takes extra time out of your life but I recommend that you join some Alzheimer support group in your area to gain more insight on what the future holds. Even if memory is not really her issue, the group's of people who you meet, can offer much insight. Your mom's AL may have one.
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Reply to MACinCT
Rainey69 Aug 1, 2018
She is in Memory Care, not AL. They sent their own staff nurse out to assess her prior to the admission. She saw her leg and questioned Mom to see how her memory was. So, they felt she was fine for memory care. Her leg does not need constant daily care. When she is in full compression, she stays in that for a week to a week and a half. That shrinks it back down to almost normal. I like to give her a break after that and use velcro wraps so she can shower and such. After 4 days of that, her leg has slowly started to blow back up because the velcro only slows down the process of the fluid building back up, the compression wrap is what shrinks her back down again.

Mom does not need to be in a SNF. She is fully capable of washing, dressing, feeding and getting around on her own. Mom worked in SNF’s all her life as an RN and was Director of Nurses at one of those facilities so I actually know quite a bit about them. She would always drag me into those godforsaken places as a child. I also became a caregiver when I had Mom move in with me so I knew how to handle her progressing dementia. I know all about dementia and what stages are coming. She is in between moderate to severe now. I put her in memory care because she is at the stage of needing eyes on her constantly and I can no longer do that. She is prone to falling which after the last fall in late March, she really went downhill quickly.

The problem is finding people who actually KNOW lymphedema well and how properly care for it. I find most people are pretty clueless when it comes to this condition. Everytime she got sick with a cellulitis infection, it was ME telling the ER docs what was wrong with her and what the proper course of treatment was. Then I had to go visit everyday to make sure they were keeping her leg elevated as you cannot have any compression on when you get an infection.

I have been very hands on from the very beginning of her dementia since my brothers proved absolutely worthless. They would not even help express concern about her driving when she had gotten into 3 fender benders and could not recall how it happened. So, it has been me all the way through. Dementia does get to a point where it becomes too much for one person to endure and after all this time, (roughly 8 years) I am beyond burnt out. Memory Care is the right place for her as her rapidly decling memory is the biggest challenge of all.
my experience over the past 2 1/2 years of memory care has been disappointing on many levels

memory care in our state is considered assisted living

despite what hat you may have been told, if the facility cannot handle your mom's leg wrap, and I know that my mom's facility would not be able to handle it, then start looking for a Plan B, especially if there was a large upfront payment and you can get any part of it refunded
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Reply to MsMadge
Rainey69 Aug 1, 2018
Thankfully the upfront payment wasn’t too bad, certainly less than others I spoke with. I am going to hope that things start smoothing out in a month or so, I guess if they know I am coming regularly and I will be checking on everything, maybe they will be more conscientious.
I finally got an appt. with a doctor close by for her to see. That will help. Now, I am going to search for a local lymphedema therapist because I am not impressed with the HHC folks. Sadly, the HHC is covered by her insurance, if I find someone outside of that, it will cost. The HHC gals said Mom’s leg was the best looking lymphedema case they ever saw. Though it is flattering they are impressed with how well I cared for her leg, it is also troubling that the people they DO care for have weeping and other issues, makes me wonder if they really know what the heck they are doing! I am not a certified specialist and I managed to completely transform her leg from a huge balloon to looking almost normal. I just watched her therapist at the Hospital and learned what her process was. I added my own bits here and there and came up with the best system for the best results. I know more than the so called therapists they are sending her way. YIKES!
I am going to keep a close eye on the facility and if I do not see a marked improvement with her regular care I will have a talk with the administrator. If he won’t comply, then I will be forced to make a decision. I do not want to bounce her around in her mental condition from place to place only to find they are all dissapointing in one way or another. I saw horrible care even in the most posh, expensive places when I worked as a caregiver. This is one area where “you get what you pay for” does not apply.
AL for my mom, they do laundry once a week. honestly I don't pay close attention (I forget). I think sometimes they may go over a day, if short staffed (?)
**I would definitely ask whats going on with the laundry. 

and probably better if you have manicure tools. just put together a 'care' bag with supplies you don't want left in the room. 

I always did my dads fingernails. I cant remember if they were supposed to (?) I did his nails and he would just sit there sleeping. I always signed up for the podiatrist when ever offered and had to write a separate check for that. Not to be mean against my dad, but he got so old and crusty. when I visited I usually looked him over. washed his face. cleaned under fingernails etc. When he got really bad, someone would come and use his shaver on his face. That was another thing. my dad shaved at the beginning of AL, but he wasn't CLEANING his shaver. UG. gross. so I added 'clean razor' to my to-do list .It just seems I would go visit and end up WORKING. ok so not as much work as a 24/7 caregiver. don't get me wrong.

my mom tries to do her own fingernails. and fusses if I try to do it. I was able to trim her toe nails. I probably need to make a note and do it tomorrow.  It makes me feel SO SAD? I don't know how I feel.

as far as her lymphedema could you put in ~writing~ a STEP by STEP instruction with a calendar Mon - Sunday? for the Home Care.? maybe purchase a large poster board (thin type)and use a black marker.

Im sorry you are having so much ~fun~ :/
I hope eventually you get things running more smoothly. For the most part, ive had good luck. I know I can get upset when things don't go right. I can get depressed over the smallest thing. so hang in there.

ive been getting anxiety lately stressing over the fact my mom is getting worse. and im scared at whats to come. edit I guess I never had a nightmare with AL. mostly I feel the nightmare was just seeing my parents brain corrosion
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Reply to wally003
Rainey69 Jul 31, 2018
Sounds like incompetency is status quo in many of these places. I am mostly dissapointed with the lack of communication on all fronts. I am always very forthcoming with all info and do not like when one person tells me one thing and another flatly contradicts what I was told. I guess I will end up being the “ball breaking daughter” to make sure Mom gets the care we were promised she would have.
I very much dislike being put in that position. I am a very nice person but I lose that niceness when I feel people are playing games with me or shirking basic care duties back on to my plate. Mom can do many things herself so she is not a high maitenence person except for her leg which cannot be ignored. I know there are many folks in there that require much more care than Mom does ( for the time being ) and I wonder how they will handle her advancing deficits when the dementia gets worse.
I get depressed too. Usually when I feel overwhelmed with dealing with idiots and I was driving home with tears in my eyes after my visit today. I also have anxiety which has been off the charts for months now. I feel like my heart is pounding out of my chest at times. Yes, it is a nightmare watching your parent’s mind corrode in front of you and you are helpless to stop it.
I am struggling with all this because I am a person with strong integrity and if I tell someone I am going to do something, you better believe I will do it and will do it to the best of my ability. I am finding that I am the rare breed these days and that is very sad coming to terms with that reality.
I am sorry you are going through watching your parents too, it is very painful to see them slowly dissapear, I dread the day when she no longer recognizes me and I pray she doesn’t make it all the way to the end of this godawful disease.
I saw a lady today who was perfectly able physically but so far into the dementia, she could not talk anymore. 😢
I have to add to this again. I went today to meet with the Home Health Care that is supposed to be caring for her leg. Another wasted day. Same gal came out as before, I have told her how I care for Mom’s leg and the schedule I keep between compression wrapping and when I give her a break with the velcro wraps. She brought in a helper, and the were both an hour and a half late. I had unwrapped Mom out of the compression wraps I did last Monday when the gal was there and she did nothing that time either except tell me she was only approved for 4 visits. Later I was called by the head of the Home Health Care service and the woman asked how my experience was. I asked her why only 4 visits for a chronic condition. She told me not to worry as they always start out with 4 and keep renewing the amount per what is needed every month. I was relieved to hear that but once again, the same gal reitterated the same crap she said last time. I tried correcting her and she basically shrugged and said she would look into it.
Soooo.......then she brought new materials to compression wrap her and I told her I had just taken her out of the compression wraps and it was time for her to have a break and use the velcro.
They were happy to watch me do this but said they don’t come everyday to take off ( let her shower ) and put back on. I wasn’t terribly shocked to hear that and figured this part was easy enough for the staff to do. Takes no more than 15 to 20 minutes.
When I spoke to the head of the Memory Care Area, she said they don’t do that.
I was so deflated once again as this was one of the first things I addressed with the facility over the phone when I was first inquiring, and I was told they would be happy to help with this if I showed them how. Now, they are telling me they don’t.
Next, she has been in there since the 11th. I noticed today that her laundry had never been touched. Her fingernails were getting long but they made me take her nail kit home when I moved her in because it was not considered “safe” for her to have those tools and they would take care of her nails.
Nothing has been done. I am beginning to feel they ARE nothing more than an over glorified adult sitting service.
If I have to keep going up there to care for her leg, ask them to do her laundry, ask them to give her a manicure, ask them to make sure she is getting her hair done, what the heck are we paying for?
They all claim they really take care of all your loved ones needs but so far, I have to stay on them for what I would consider basic needs. They tell me they will handle things like calling a new doctor close by the facility and make the switch, then they ask me if I have made that call. I did actually call and left a VM which was never returned.
I feel like I am fighting an uphill battle with all of them. This is criminal to put people through this. I feel like they told me whatever I wanted to hear to get me to move Mom in and all the important stuff has been forgotten. I have also had issues with the billing since day one and everytime I call, trying to get this straightened out, the next bill comes showing I did not pay when I had, followed by a stern letter saying I am past due.
I feel like a sucker and worse, when I get irritated, I know they think “I” am the problem. I hope things get straightened out soon or I feel I will have to look for another place for her that actually DOES what they claim they do. I am so frustated with all of this, I could scream. Why do I have to feel like a pain in the _____ when I question what is or mostly what ISN’T being done for Mom and get contradicting answers? I feel like I traded one stressful situation for a different one.
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Reply to Rainey69

YES YES and yes....no I don't think you are cursed.(or maybe we all are) I placed my mom and dad in  2011, so I don't remember everything. but I took off 5 weeks family emergency to get it done. and I think I lost 15 lbs. from non stop to-do's

there was a lot of financial banking/lawyer/dr etc to do also. I thought id lose my mind.
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Reply to wally003
Rainey69 Jul 25, 2018
Thanks Wally,
Yes, losing my mind steadily over these last 5 years only to go through this horrendous experience is just wrong. Not one thing has gone right or smoothly and yes, I have been losing my cool at times, and then, when you finally do lose it, they think you are the “problem” for vocalizing your frustrations. I have been made to feel like everyone has to “tip toe” around me because I got upset by the overwhelming incompetence I have experienced in abundance.
Another unwanted thing when you notice them avoiding you because you had the nerve to get upset.
My father and I placed my mother in AL (not MC) and it actually went much better than I was expecting. The way things fell into place so easily that it reconfirmed to me that we were doing the right thing. Mom has moderate dementia (Alzheimer I believe), severe mobility problems, severe arthritis, CHF and is a fall risk. It was more than dad could handle so AL seemed a good solution.

Her ALF is out in the country, is small and homey and she’s well taken care of. Only 20 patients. They had one room empty and mom got it. They do her hair, she’s bathed and fed well and she has very lucid periods in the day.

Anyway, mom’s AL is private and perhaps that is why we didn’t have endless paperwork although we had some. My dad pays out of pocket and he signed what papers there were.

It sounds like a big corporate facility you have your mom in and the bigger the company that owns these places, the more red tape.

I hope things smooth out for you and your mom. Could Medicare send a nurse to do wound care? It wouldn’t hurt to inquire.
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Reply to HolidayEnd
Rainey69 Jul 25, 2018
Hi HolidayEnd,
With “Lymphedema” there are specialized techniques to keep it in check so sending someone who is unfamiliar with the condition is a complete waste of time. I learned from her Physical Therapist who specialized in lymphedema care. It is also something that takes practice to get right. I do not feel comfortable when I ask someone if they know how to do “manual lymphatic drainage” and they say no. That tells me they were never trained to deal with this condition.
Every time Mom got a cellulitis infection, (which is not uncommon when you have this condition and neglect it for as long as Mom did ) to have reoccurring infections and I would have to get her to the ER immediately and have her admitted. I am stunned at how little anybody i the ER knew about this condition and it was me telling them what was wrong with her and what the proper course of treatment was. They always tried to kick her out of the hospital too before the infection had cleared up.
So, I am not surprised this has blown up in my face at the facility as well. I just feel so helpless and I won’t be surprised if I end up having to find and pay for a Lymphedema Specialist to go in and take care of it properly. People tell you what you want to hear to get your business, when the pedal hits the medal, they shrug and give you second rate service. They have your money now.
I had to fill out reams of paper for my mother as well. The health, the financial, the medical...it went on and on. She was admitted from the hospital, so they got most of their records from there. Luckily, my mother always kept meticulous financial records, and when she was admitted, she was still cognizant enough to sign POA papers I got from Legal Zoom. My mom was very smart and made sure I’d have no issues with her finances, even putting me on her checking account.

This will all all die down in a few weeks, but you’ll have to keep an eye on her paperwork if they have a history of screw-ups. Keep a close eye on the medications list they send you and don’t be afraid to question it. My MIL once got charged for 4 bottles of Colace stool softener in one month!
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Reply to Ahmijoy

Unfortunately, my family had a similar experience placing an elderly aunt (who had no family) into a MC facility. Same thing with lost and incomplete paperwork, miscommunication by facility, dropping of the ball by parties who were involved, etc. The MC charged almost as much as a SNF but provided a fraction of the care. You have my sympathy.
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Reply to XenaJada
Rainey69 Jul 25, 2018
Thank you for letting me know I am not the only person this has happened to. These are things you have no idea about until you are faced with the fact that you are no longer capable of caring for them to that magnitude and they NEED professional care. I think facilities should assign “case workers’ to each new resident family member (whomever has DPOA & POA) and help them get all the needed paperwork and ask all the right questions to assure that these things go smoothly. Don’t they recognize that many of us faced with this unpleasant endeavor are already on major caregiver burnout and don’t need the extra stress added to their pile?
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This has been a horrible experience. I can’t believe they haven’t dealt with the care of her leg better. That’s a condition that has to be dealt with appropriately. I hope this situation improves.
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Reply to anonymous439773
Rainey69 Jul 25, 2018
I know it. I find it amazing that them getting a “cough drop” down on the RX list was far more important than having all her ongoing care worked out prior to her moving in. They just made sure their butts were covered legally and the rest was an after thought. This should never occur.
I tell ya this whole experience, caregiving, dealing with the dysfunctional family dynamics, then after you are burnt out, faced with the realization they need 24/7 care, to go through all this? I bet the whole experience has shaved 10 to 15 years off my life from all the stress. I wish I had been strong and told my Mom I was leaving the State as my husband and I had planned, and let my middle brother deal with the nightmare. It is sad to regret, especially when you thought you were doing your parent a kindness knowing nobody else in the family would.