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I cared for mom in my home for 3 years. Her incontinence and her resistance to allowing us to toilet and bathe her made it very difficult to care for her. We moved her to a wonderful memory care. However now they are eating alone in their rooms due to the lockdown. I’m worried she will get depressed from being alone so many hours in the day. I’m worried she will decline or get infected. We have been FaceTimeing and window visiting but 2 days a week they are short staffed so those 2 days I sit home and worry! They can’t accommodate those options on those days. I have children so I do need to care for them and I don’t want anyone getting sick. Is anyone considering this? I got a 3 week respite but I’m concerned it will be too much when I bring her home. However, I’m home from work so at least we could be together.
signed,
worried

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It seems no one is advising she bring her parent back home, yet that is what the experts are recommending for the elderly persons safety. I feel my Mother is potentially exposed to much less in my home than her large independent living facility.
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igloo572 Apr 2020
Poppy, here’s the thing imo..... you can not compare IL to NH. If your mom is in IL, she’s independent living. So - in theory - totally good on her ADLs, she can do for herself. She doesn’t need daily or multiple times daily medication management or skilled nursing care or regular gait training or total help to dress /potty /transition. If my mom was in a large IL or IL / AL, yeah, I’d probably move her into my home if there was a separate bedroom & bath for her use if she was still competent and cognitive enough to be socially aware and do what’s required for social distancing.
I understand folks concern on the “NH Covid outbreaks”. But there’s lots of details missing in media reporting on this, the biggest is that folks lump elder living into being just 1 category. The 2 big outbreaks in my area (New Orleans) have been tied to IL/AL or AL/NH facilities; lots of AL residents still competent and cognitive, they have cars and drive so they until just recently could come & go. Loads of socializing both within & outside.

But for MC or NH/SNF, thats a whole other solar system of residents & things needed & required to be available by state & federal regulations. Equipment, medications, staff capabilities are totally different for NH & MC. Residents in MC are locked ward as they wander and at risk to themselves; SNF residents require skilled care. It’s gonna be hard or impossible for families to do these levels of care at home on their own 24/7. They need to be in MC or NH to have the 24/7 oversight needed. If your mom aspirated, can you intubate her? If she became suddenly SOB (short of breath), do you have a portaO2 with head gear at the ready to mask her up with? If she gets up in the middle of the nite and wanders, do you have your home & yard wired to alert this? It’s stuff like this is why folks have their elder in MC or SNF and can’t just bring them back “home”.

my mom was in IL for a couple of years then went into a NH and then on hospice at the NH. Hospice for 18 l....o....n....g months. In my experience, you cannot compare IL to MC, AL to NH, etc.
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Laurie, just a quick update on my friends dad, he was not able to get a telemed visit done this week. The post surgery day followup was with his cardiac care team. Telemed can’t work for what he would have had done as needed to be hands on. Instead labs are getting pulled and then shared with cardiac team & the MD / medical director of the facility, then those 2 convo with facility medical director doing new orders or RXs if needed. There is a plan with the facility MD as chief decision maker on care. They use Quest, do the pull in-house but labs taking 2+ weeks now as Covid is priority. The facilities staff is good and most been there forever. They have decreased # of residents overall, 2 regular deaths, a handful pulled thier parent out. No new admits at all. If you leave, you do not get back in for April, with May tbd. She has been reassured that should her dad need to move up into skilled it will be done. The goal seems to be to just get thru April & May and then look for normal in June.

I bet this is the path of what mixed level (AL, NH, MC) facilities will take if at all possible. Less residents = Having flexibility to move residents up in care or become a single room isolated if they get Covid symptoms. Most run on tight profit margins, I bet they can decrease by 10-15% & still be ok to make payroll and have # of staff required for state & Medicare regs.

if your mom is still pretty competent and cognitive, see if staff can FaceTime or Skype with you all. My mom was in a NH & on hospice her last 18 months and I live out of state. Her 2 Nd hospice group was picked to a big degree as they could & did Skype btw her & me. Perhaps that can happen?

For anyone reading this, if you’re on the new normal of “window visit”, please please remember to take something for staff that is safe to share. Right now stores have individual mini Easter candy & snacks. Those would work & inexpensive! Grocery stores & the Dollar Trees usually have a section for individually wrapped kids birthday party swag bag size of candy or snacks too. Mini packs of carrots or apple slices if u have a way to get them there cold. Your remembering staff now will mean they remember mom & dad later.
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laurie123 Apr 2020
Thanks yes, i do get to facetime and window visit. I am bringing little treats and today I will get one of those echo's with screens
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This is not advise or wisdom. It is the announcement of an experiment. On Monday I brought my 90 yo blind frail confused Mom to my home, from an AL that had successfully locked down 3/13, and which has no active cases still. My partner and I completed 2 wk self isolation in our home together. Then brought Mom and now we’ll watch her and ourselves carefully, for another two weeks. After that, we intend to keep social distancing, sanitizing, monitoring temps, practice extreme hygiene...until there is a vaccine or adequate treatment.

The AL isolation was very hard on Mom. She experienced lockdown as if in prison. The parallels are real. She never recognized the regular carers she had, never learned even one name. Now, here in my home...still very isolated. She doesn’t remember my partner’s name. Isn’t sure they have met. (after 30 years) So while the hands-on falls more to me, my partner is handling the logistics and behind scene support...with just enough friendly, orienting contact to prevent Mom thinking partner is just hired help, since hired help should be fired, in her book.

still...We saw an opportunity to try this arrangement...which, without the Virus, we probably would not have engineered. The Virus made us do it! It has an uncertain end...but it will end. Seemed to us that however many weeks or months in isolated AL - those weeks/months were going to waste. Stagnant. No progress or refinement of care was going to happen in these circumstances. All the while losing touch with the real family she still has. Bringing her home may represent less waste of time, less frustrated angst.

so, Day 4 is done. i am tired, but hopeful. Job getting short shrift in short term. Anything can happen. We could lose jobs. Someone could get sick. There could be recurring scares and heightened risk for months to come, during which Mom will inevitably decline. We decided to do it anyway, knowing that it might mean Mom never leaving my home again.

i’ll report back.
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laurie123 Apr 2020
Thanks so much. It is such a hard decision. My mom has incontinence and won't let me change or shower her so they do that more effectively in the MC however I keep deciding whether I need to suck it up and just do it myself to keep her safe. I have teens (young teens) at home so I wanted to keep my focus on them. I am going to buy the echo dot today to see if I can keep her more engaged and I don't have to fit the schedule of the nurses. If that doesn't help my worrying all night, then I'll bring her home.
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Hi Laurie,
I don’t have an answer but I do feel your pain. I am in the same predicament. My mom has one more week to go in nursing home rehab. My mom is 85 as has stage 5 chronic kidney disease so I do understand.
A representative from the nursing home called me yesterday just to reassure me about her care and to let me know, no coronavirus there yet. My mom says that they sit at the door of their room and play bingo. They can also sit at their door and socialize. My mom actually said she loved the fact that she was getting good baths from their nursing staff.
My mom is proud as well, she will not allow me to help her bath.
I hope this gives you a little peace of mind. Hopefully this will be over soon, prayers going up for you and your family.
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laurie123 Apr 2020
Thanks so much for your response. That is wonderful they are doing that. My mom is also isolated in her room and she was already one of the higher functioning in memory care. I'm going to try the video screen where I can drop in and just have her with us while I'm cooking, etc so I don't have to use the nurse schedule. I'll see if that helps. They also fortunately do not have cases and locked down early. I only hope the staff is being really safe when they leave every day.
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I don't think at this time, There is much that can be done to Release MOM. It is the Virus, many are notr even on Staff athe Homes to Help. Leave her there for now and when the Virus is Ovwer, You can Take Over...
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Yes. Bring her home. No one can give her better care than you can. There are many resources to assist you in helping her in the home setting. You can have nurses and therapists and aides assist you. There is help to pay for medicines. You can control who comes into your home. Make sure they use appropriate protective equipment. You cannot control who they let in that facility. Good Luck.
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laurie123 Apr 2020
Thanks Lynn for your response. I just didn't want people in my home because of my children. I am still debating. What you stated is what I'm worried about.
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Imho, I cannot advise you to bring her home or leave her in the facility. I would not want to be that person if it went the wrong way. You must be the one to make the decision. Prayers sent to you.
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laurie123 Apr 2020
Thank you. Yes, I know. Everyone makes such good points. Maybe by the time I make up my mind this will all be over :)
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I almost did bring my sister home. horribly frustrated and tired from looking for new place for sis during the last 5.5 months- about 15 total facilities. before we got a call. I had started looking for bath tub grip bars, baby gates for the stairs, shower chair, and I don't know what else telling myself I can do this-care for sis 24/7.

I had told my husband I have to stop looking and getting turned down by all these places at least sis will like it here at our house at least for a while.......although I knew it would be really hard on all of us.... the next day after I bought some home gear-the light bulb finally went off in my head I cant go through with bringing sis home glad I had not made any promises to sis that I would bring her here.

I called a couple more facilities and a few weeks later we got in one. Probably best in the end-due to corona, and my family still out in the working world could have caught and or passed the virus to sis would have been very very bad. I am okay with not bringing sis here it is tough enough not going out except for necessities-way more staff in the facility able to provide more kinds of care for sis when ever she needs it-. after all the looking I did it became obvious that no one place is going to be perfect all the time-nearly every place I visited had family or worker complaints about poor level of care or low staff available at holiday time etc. is not what you want but does happen. The places with no worker or family complaints are impossible to get into unless you have a very large bag of cash.
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Laurie, I would really bring her home if you can, the sooner the better.
Nursing homes are a very, very dangerous place right now. I don't want to scare you or worry you more than you are, but the number of fatalities we are experiencing in Italy in homes are mindblowing. Even if you isolate her for 2/3 weeks in a room at your place she'll know you are near, it will be different. Find the safest protocol for isolation, even if you have to leave food out of the door.
Just my opinion of course. Sending you a hug.
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laurie123 Apr 2020
Yes, however I can not keep her clean. She fights me to change her dirty diaper and refuses to shower or use the restroom. If not for that, she would be home already. I am also caring for children and husband and stepdad. But yes, I still might bring her home. Thank you so much for your response. I hope you are safe in Italy. My mom's home locked down very early and they have been very strict, however I know if they get a case it will be bad.
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Yes, it’s on the news this evening. It’s safer to have anyone in assisted living at home now. Less exposure to virus. Assisted care facilities do not have proper protective equipment and are short staffed. I can understand your concern as well.
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laurie123 Apr 2020
Thanks for telling me. I had not heard that on the news here but some doctor friends did say that.
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She needs to stay there. It's the best thing for both of you.
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This is a very tough one. She is at risk in memory care. She would be at risk in your home. I think this is an individual decision only you can make knowing your mom, your Mom's current reaction to her life as it is being lived, the numbers of times you go out of your home, hence risking your own safety, and the possibility of bringing it back home with you, the numbers of people in your home, and etc. There is NO good and certain answer to Covid and until we have vaccine, for we elders and their children there will be no safe zone for more than a year. So I would say do the best you can. We are all worried and we all should be worried.
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Duggan, I fully support what Worried has written, and she's absolutely right.   There is NOT adequate equipment for all those in the medical profession trying to grapple with this pandemic.

And don't forget that first responders need proper equipment as well.   Police and fireman are already becoming infected.   

My niece is a front line ER Nurse who's now making her own facial and hair masks, and for others with whom she works, BECAUSE of the shortage of equipment.  

I'm curious, where did you get the information that CNAs would be properly outfitted?    It's definitely wrong.   Watch MSNBC or CNN and listen to what the medical people are saying:  they NEED proper equipment, and they need it NOW!
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Probably best to leave her there and hope for the best. As others noted, if you bring her home, she could bring the virus in or one of you could give it to her if you happen to get it. Either way, there is a chance any one of you or she might get it. The stress of bringing her home might do more harm. Also, as others noted, if you become sick, then what?

As for keeping her in her room, I find that odd. The place my mother is at has IL/AL/MC. IL and AL must stay in their rooms and have meals delivered or prepare their own. I think they can go outside the bldg, just not off the premises or they don't come back in!

However, the weekly or more often notice via email specified that the MC residents will continue to eat meals together and have freedom of movement in the MC section only - no forays outside the section! They felt it was in their best interest, as you can't explain the issue to many of them.

If you have options for maintaining contact, use them. Our mother doesn't have a phone of any kind (between dementia and hearing it wouldn't be of use.) She never learned to use a computer, so all those apps are of no use. Window visiting isn't possible as her windows face a garden area circled by the building itself. About the only thing we might be able to do is deliver goodies and/or cards/letters to the main door.
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Jspylock Apr 2020
My mother has a cell phone which she cannot use because of both her motor skills and Macular Degeneration; however, it's an android and I bought the google dot which she can say; "Hey Google, call daughter". It automatically calls me. Worked great up until recently when her motor skills worsened. She can still do it; some days. Try the google dot or Alexa which downloads the cell phone book.
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No, she will be exposed to less infection on the inside since all the nurses and CNAs will be properly outfitted with gloves and masks and all. Much safer on the inside--- at home, too many possible infectors and less control. Your kids will be the greatest possible infection carrier to Grandma. Do not bring her home. Wait til the Government says it is ok to go visit-- until then, call her once a day before lunch.
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worriedinCali Apr 2020
OMG you couldn’t be more wrong! Are you living under a rock? Or are you trolling us? Seriously? There is a nationwide shortage of protective gear! Health care workers are being forced to wear used gear or go without. It is NOT a given that the staff will be properly outfitted. I’m not at all saying the OP should take her mom home, I am saying it is ignorant to believe there’s a lower risk of catching COVID if you are in AL or LTC. Do you realize that everyone working IN the facility LEAVES at the end of the day and are probably exposed to their own family members who may be going to work themselves? And they may be going out in public after work to buy groceries?do you see what I am saying? OPs mother is exposed to more people in the Al then she would be at home. AL & LTC facilities are definitely NOT SAFER!
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Coincidently, just read an article about this as I read this Agingcare thread.

This seems to look at the whole issue from both sides.

https://www.startribune.com/should-you-bring-mom-or-dad-home-from-assisted-living-during-pandemic/569284382/
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So glad someone posted this! I’m in same mind battle myself! Moms in AL and has been sick really sick but us coming out of it, allergies congestion etc. The testing I’ve not heard back from communication is impossible but I realize they’re swamped! I wish I felt better for her but I am worried her immune system could recover then we’d give her something worse! These are terrible times, we did window visits she just wasn’t interested.
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laurie123 Apr 2020
Thank you for your thoughtful response. Yes somedays she seems tired on the facetime and the window visits are confusing for her since she doesn't know why we aren't coming in. It is just awful either way.
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What great answers from so many people. Virus protocols make already difficult situations even more difficult. Make as few changes as possible and prioritize safety.
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Right now you say you are worried about her becoming lonely or declining, but you didn't say this has actually happened while she has been there. I completely understand your concern. On one hand you could see how this plays out over the next few weeks and see how she does. She is confined to her room, so exposure is being dealt with (although, again, I understand your concern).

The longer she is there, the bigger the chance for exposure. So it's kind of a do it now before there's an outbreak at the facility or see how it plays out. Either way there is a risk when you bring her home because she has been around people that you and your family have not.

Tough decision for you, but I think if you are serious about trying at home again, do it now before a case shows up in the facility and before the decline in memory is worse.
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laurie123 Apr 2020
I totally agree that we have to do it now or wait it out. My stepdad, her husband is here with me and it is too hard for him to care for her so it would be on me and I don't want caregivers coming in because of my kids. Anyway, thank you for your thoughtful response.
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My mom is also in a facility for physical rehabilitation. She has no memory deficiencies and is fully alert and oriented to what is going on. I sympathize with you because I was very stressed with trying to take care of her before she ended up in the hospital. She wouldn't walk and wouldn't shower and didnt want to go to ANY doctors appointments. It was getting harder and harder to care for her daily. She was on blood thinners that ended up building up in her system but I didnt know that because she wouldn't go get labs done. She ended up with severe internal bleeding.
Please leave your mom there. There are underlying issues she may develop and you might not even become aware that's it's happening at home. Doctors appointments are being discouraged these days for the elderly and at least at the facility they have doctors on site. If for some reason she ends up getting infected, that is the best place to help her. They have oxygen and access to testing and all of the medications she would need. We all may become infected and not know it just by going out to get groceries. We do not have PPE in our homes to keep our loved ones safe. These are my worries as well. Of course at some point my mom will have to come home and I'm worried when that time comes.
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laurie123 Apr 2020
Thank you. That's true, there are nurses there caring for her and I may not be able to get her appropriate health. I definitely don't want to infect her. It is just so sad to see her confused why we aren't visiting or coming in through the window.
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Leave her there, that's her new residence. Don't add to her confusion. You can see her later when the Corona Virus scare has subsided.
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She IS where she needs to be, for you and her. Have the kids make cards for her and mail them.
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You unfortunately can not control all facets of taking care of everyone during this pandemic. I personally,having been an RN for 30 years,now retired,do not think it wise to bring your mother back home.You have been very,very thoughtful, but you have to care for YOU first,because your children need you. In times before this Virus, you might have been able to visit daily.Since I am currently the main contact for my 93 year old mother, I discovered that neither you nor I want our parent to be depressed or lonely or get sick, or even die. WE have to let go ! It's painful.My thoughts and prayers are with you.If you are a nervous wreck,consider an anxiolytic, more exercise,prayer or whatever decreases your worry. 🙏 💗 You have done a wonderful job, and you have a big heart .
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laurie123 Apr 2020
Thank you for your thoughtful response. It is hard because we are all just sitting around the house and we could be sitting watching tv together or playing games or something but I don't want to bring in any infection if I go to the grocery store. With no crystal ball it is hard to determine which will have been the right decision. I just love her so much and I'm glad she doesn't understand what is going on.
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Hi Laurie
My mom is in independent living but really should be in the memory unit at this point. They allow her to stay there because I have 24/7 aides with her. She never goes out of the apartment, hasn't gone out in years except to be rolled around the property in the wheel chair. Not anymore - they are in lock-down, only the aides and the staff go in and out.

So far, one man on mom's floor died from Covid 19, and one of the chefs died from it. There are currently 6 residents in her building that tested positive. I am terrified.

I too have been thinking about bringing her here, with an aide.

I am leaning against it - it would be very upsetting for her to make the move and be in a new place. She doesn't know my house, I just moved here a year ago. She's been here once but she was already deep in dementia and would not remember. Also if she or the aide have the virus, they would bring into my house.

We Skyped last night but she could not figure out what she was looking at. We'll try again tonight.
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RedVanAnnie Apr 2020
I would discourage you from bringing your mother home. It would be infusing for her and overwhelming for your household.
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Hi Laurie
Do you mind telling me your State? Just curious as we live in Upstate NY (4 hrs N of NYC) The Rehab/LTC NH where Mom is a Rehab patient for a fractured ankle won't allow window visiting much to my dismay. It seems like the whole country is doing thru the glass visits but here they are telling me it's too much of a risk....the area is fenced in...it will disturb other residents...pretty much any lame excuse that I might accept!

I even called Senator Sewards office to no avail and now I see he and his wife have mild cases of C19.

Face Time reduced her to tears as she is deaf. Consequently I am campaigning to get her discharged to home possibly this wk end, Unlike your Mother she is in Rehab destined to come home eventually anyhow. And she is paying out of pocket..another story!

So as others have said be grateful for your window visits and phone calls and Face Time. With or without C19 this would be a difficult adjustment period for both of you. Stay strong...you worked hard to get here there....I know you miss her and that has overshadowed the difficulties of caring for her at home right now. Just think how difficult it will be when you go back to work.

Give it more time ...you will both adjust to the new normal. Te best to you both.
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laurie123 Apr 2020
I am in Tennessee and yes I am so thankful that they have provided us with FaceTime opportunities and the window visits. I am trying to work from home and probably the reality of her being here would be a lot more difficult than I'm imagining. I hope you are all safe in NY. I have family in the city and I am very worried about them as well.
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Each of us must do what we feel is right given our circumstances. I almost pulled my dad from MC for same reasons, but opted to leave him there instead. He’s in a routine, sees more caregivers than if at our house, and they have shifts and come in cheerful and rested. I get burned out. Also, my dad’s had a couple moves in last two years and each pushed him further into dementia land so to speak. We call and go outside too, which he appreciates. It’s a really tough decision I wish none of us had to make. Good luck
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laurie123 Apr 2020
Thanks for your response. These are really difficult times. It is just so sad.
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I also just put my mom in a MC because of incontinence and sitting in the depends because she wouldn’t let me shower her or change her for days at a time. When I would finally get her into the shower she was off balance and didn’t know how to really clean herself. Her clothes, bed, and furniture were soaked in urine It was more than I ever wanted to be as a daughter but I did it because I adore my mom. Then she fell and wouldn’t get out of bed for days. Was admitted to the hospital a few weeks back and they determined she was no longer safe at home. It was a weight lifted from me and my dad, but I am devastated at the same time. She’s kind of a loner so she won’t leave her room and only talks with the girls who come and help her. It’s the most loving thing we can do for our mothers and ourselves. We’re still adjusting to this. I cry all the time! But I know it’s for the best because it’s just going to get worse with the infections from not being clean, the falls, the paranoia, wandering, danger to herself, etc. She had also started drinking rubbing alcohol unbeknownst to me and brushing her teeth with face cream. What’s next? I didn’t want to find out! I think you should leave your mom where she’s at least safe.
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laurie123 Apr 2020
Thanks so much for your response.
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Seems you are still adjusting to your mom being in memory care. You placed her because her care was too much for you at home. She will be getting the care she needs, even with social distancing and increased cleaning protocols. Call her when you can. Visit when you can. Then, remind yourself that she is in the best place to stay safe and healthy.
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She will be fine. Most of us have to give up caretaking sooner or later for one reason or another. I always remind myself that I want my daughter to have a life so when it’s my time to go to a facility I want her to know I desire her to have freedom.
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laurie123 Apr 2020
Yes, I know my mom never would have wanted me to have her at home with my family but I did love having her here these past 3 years. Thanks for your response.
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I understand exactly how you feel. My mother has been in MC for 6 months and I am her full time caregiver in MC. They were allowing me in as an independent contractors until Monday when they shut down to only their employees. My mother is a fall risk cause of a Parkinson’s and has fallen twice since Monday. Once she hit her head , which usual protocol is to call an ambulance and get a CT. We decided since she wasn’t bleeding and could move, no ER. It’s killing me sitting here for the past 2 days and not being able to care for her. I have been caring for her full time at home and 9 hours a day in the facility for 3 years. All facilities are short handed, Where my mom is there are full to capacity. I know they can’t care for her the way she deserves to be cared for. I spoke to her on the phone yesterday and she was more out of it than usual. I agree not to use FaceTime or Skype. I know in my mothers case it confuses her and she doesn’t want to sit still. The only reason I don’t bring her home is because I don’t want her any more exposed than she already is. We live in MD near the facility in Carroll Co. with the 77 cases so this is hitting us hard. Fortunately,no cases in my moms facility yet. This is a tough time for all of us. What a horrible way for our parents to have to live at the end of their lives. I know my mom doesn’t understand . We all need to pray that the few who are caring for our loved ones are patient with them.
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laurie123 Apr 2020
Yes the people at my mom's are so sweet to her and my family. I'm so sorry that you can't go in and care for her anymore. I thought, maybe I could get be some kind of caregiver for her but I know with my own kids that would be unrealistic. Stay safe and thank you for your response.
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