Assisted living doesn’t actually free family members

Quilting brings calm

I’ve had multiple people  tell me ‘ your parents are  in assisted living so you are free to travel and live your life’.   I don’t know about the rest of you, but it’s not working out that way here.  Yes, sometimes. I can get away for a couple of nights, but I have had  to cancel afternoon plans multiple times without notice.  I still never know what my day is going to be when I get up.  During the pandemic, I was my parents link to the outside world for groceries, supplies, etc.  Now on a good day, they can get to the grocery store or to a restaurant on their own.  But they aren’t capable of understanding things  at a doctor visit, etc. it’s a half hour from my house to the assisted living center. There’s a lot of doctor visits.

The last 17 days: 

May 7/ stepdad urgent care, then ER, the  hospital until May 9. I’m the transport in addition the support person in hospital.  Slow heart rate. 30 day heart monitor. 

May 17- Monday follow up visit to their long term doctor 45 miles from ASL where they used to live. I’m the support person and transport. ASL wouldn’t transport that far and wouldn’t be in the exam room even if they did. 

May 19- minor surgery for Mom at local podiatrist. Dad didn’t feel well, so it falls to me to be support person and transport.

May 21 -Friday  ASL calls at 8:30am dad has low grade fever and chills.  Might ( repeat might) want to go to urgent care. I get there thinking no big deal.  The man is incoherent in the bathroom on the toilet. Call ambulance.  All day in ER then admitted.  Pneumonia and sepsis.  Did you remember that I just had him at the doctor Monday afternoon? 

I spend Friday until 10pm and most of Saturday daytime at hospital.  I go to assisted living twice Saturday  twice between hospital visits  to get stuff for dad and to check in Mom. She of course is having meltdowns because she can’t remember he is in the hospital.  She says she re-bandaged her toes and put the antibiotic ointment required due to her surgery since Dad was gone. Dad is doing well,

Sunday I go to ASL to re-bandage  Moms’ toes and to check on her.  Then up to hospital.  I don’t spend as long because Dad is continuing to do well.  I don’t get to sleep until 2:30am Monday ( occasional insomnia). 

May 24 Monday-  yesterday.  7:40 wake up call. ASL nurse(not there on weekends) thinks Moms’  toe is infected and needs to be seen.  So I call doctor as soon as they open and get a work in appointment at noon.  Dad calls and thinks he will get to go home. So I  go get her, take her, drop off prescription , get her  home with needed supplies and her requested water and juice, go to hospital to get him.  Swing back by the pharmacy and I drop off his release prescriptions,  get him to ASL.  Go back to pharmacy to pick up both their prescriptions, back to ASL with them. 

Today I make the daily  call to check on them,  mom thinks they need bread and milk.  They get three meals, deserts and snacks provided there.  They just think they need full cabinets of food too. I explain to her that I can’t get there today, maybe tomorrow - it’s the end of the world.  They will probably go to the small grocery store down the street tomorrow- Dad still drives. He does not have dementia.  Supposedly. 

I don’t see any traveling in my future.  I had to retire in December because I never knew if  I was going to be able  to work on any given day.  And it’s still early in my Moms’  dementia. They are in their 80s. 

 My husband  is on disability and is losing his eyesight 

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Quilting brings calm

Victoria - they do get medication management at the ASL.  So for normal medications, it’s called into an area pharmacy which delivers it to the ASL in pill packs.   However, they needed these antibiotics same day so I needed to drop the scripts off and pick them up. Staff will get the pills out of a locked cabinet at appropriate times and make sure the meds are taken. 

My husband and I are doing what you suggest in terms of getting ready for his upcoming issues.  

Like it often happens, I had very little time to search for an ASL after we realized they needed one.  We moved them halfway across the country and put mom in the hospital due to a medical crisis.  I needed a place almost  immediately.  This was where they wanted to go and was less expensive than a larger place.  

 I agree I need to start looking into further care options for these two.  Part of the problem is that Dad spent all last year and some of this year telling mom they didn’t need assisted living - that they could rent a house and live independently. I’m not sure I  can even get them to accept an errand person.  We tried a caregiver right before we moved them and they wouldn’t accept the people in their house.   He is in denial of both their issues.  If I try to move them to MC too soon ( which is usually a  locked building), he will not stay there and I will be forced to deal with the fall out afterwards.  They have been married 57 years, since I was 5 so I am very familiar with his stubbornness.  There’s the fact that they have less than $90,000 in savings and although they only need about a $1000 - $1500 of that monthly currently ( along with their monthly income), that will be gone in two or three years of memory care. . 

Is an MC really freeing the family  up -don’t the residents need supplies, doctor visits, etc? 

 Can’t imagine any scenario where we could leave for the winter no matter where I place them.and that is exactly what people seem to think I can do because they don’t live in my home.  

dayn2nite2

They should both be in places where doctors come to them.  And not having surgery on feet.  And severing relationships with physicians unless they come to facility.

If they are taken anywhere it’s to a true emergency room, not urgent care.  Their living arrangement sounds like independent living with meds tossed in. 

Klgm326

Hi there!

MC will definitely free you ups as all of their medical care is in-house (even her AL was the same). If she needed a podiatrist, he came to the residence. I only ever had to take her to the dentist. I wouldn’t leave for the winter either... we are on a 5-day getaway about 3 hours away. I have my phone with me as we speak. But I understand cost is an issue—especially with two parents. I wish you the best as you venture into these difficult moments. 

Quilting brings calm

Podiatrist does come to the residence, every few weeks,  but not to remove toenails. 

I don’t know of any ASL in our area- nearest city of 100, 000, surrounded by farmlands for miles-  that has MDs come to the residence.  That’s not how things are done here.  We aren’t in a Chicago or New York.   Possibly MCs might, not familiar with those.   Some nursing homes do.  All the ASLs pretty much advertise the same amenities. 

ASLs here have a nurse on duty during the weekdays, cafeteria staff, activity director,Maintenance staff, housekeeping prescheduled transport to doctors, and a small number of resident assistants who are there 24/7band who do laundry at night. Possibly some assistance  with shower, dressing etc.   and A beautician is there one day a week. Physical therapists from various agencies   come  to the facility to see specific patients. As opposed to am independent living, which has no nurse and no staff on site evenings and weekends except one person.  Big facilities  of either category might own a small bus to take residents on outings. ( pre pandemic)

This ASL has 57 residents and a staff  of 18, in a small town of 10,000 - 5 miles from that city I mentioned. 

M1

Quilting not to add to your worries, but did the cardiologist okay your step dad to drive? Heart rate in the thirties is worrisome....

Quilting brings calm

M1-  yes he  went home with no restrictions except for diet. .  Because he said dad wasn’t having  any of the concerning symptoms of a slow heart rate( dizziness, chest pain. Etc).  The ER portion of  each hospital visit had the irregular heart rates, where it would bounce down in the 30s or 40s but then immediately went back up.  Day 2  was in the 50s and up. Cardiologist said it was age related and doesn’t even  think a pacemaker is  needed because the echocardiogram was normal.  Dad goes back  to see him in July.  

The first hospital visit happened because I took him to urgent care for diarrhea.  Vitals  brought a concern for an ekg and the rest of the day went on from there. 

The second hospital visit Dad was dehydrated (he got three saline IV bags).  I think that the PCP, the doctors at the hospital and the cardiologist are all leaning toward dehydration causing the slow heart rate both times 

Both hospital admissions  were on Fridays and his PCP doesn’t see patients on Fridays  so that’s why he wasn’t seen by him that first time.,

In my opinion, I think my Dad has reached the Round Robin hospital stay portion of his life.  He has COPD, thyroid cancer nodules in his lungs, an additional as yet undiagnosed  mass in his right lung,  and a stent from about 10 years ago.  My thoughts are that he’s got a year or two.  Mom will need to go to memory care when he dies  because she  can’t function emotionally without him.  I’m sure she will have progressed  into another stage of dementia by then too.  She is technically still in stage 4 now 

Rescue mom

The ALFs and MCs where I had family all had doctors lined up who came regularly, and would make special trips to see patients  if called by staff. This wasn’t in big towns at all. There were  nurses on staff that could handle many things in between. 

Podiatrists and dermatologists also made regular visits. The facility handled all medicine needs.

I would also use a delivery service if there was unexpected needs for bread, milk, snacks etc. but plenty of food and snacks, as well,as,daily shopping runs, were provided by facility. If they ran out of something for a couple of days, as said, it’s not the end of the world, the facility provides plenty.

Anyway, this does not sound like any ALF I’ve dealt with. OTOH, if hospital visits are needed, then the facility indeed does not deal with that.

My mother was totally resistant to a caregiver in her space, even locked a couple out. I kept trying until I found one who “clicked”—and did not tell her it was a caregiver just for her. She had the idea (encouraged by me and others) it was a regular staff person who was just there a little more.

Maybe your dad would not object so much to an MC if you did not call it that, just say you are moving to another facility.....as for cost, have you looked into Medicaid? With a lawyer who’s familiar with your state laws. They may be easier to qualify than you think.

May flowers

Your MC sounds similar to ours, all medical and podiatry needs are handled onsite. There is even a hair salon onsite and a visiting hairdresser once a week. This is in a fairly rural/suburb area, an hour from the nearest big city.

harshedbuzz

QBC-

I hear you. My dad with dementia has passed, but my cognitively intact and "independent" mother has become something of a fulltime job. 

She is medically complex; she has over a dozen doctors in her medical team. She managed to have 3 surgeries during the pandemic. It is literally always something. When it isn't an emergent issue, it's new glasses, a hearing aid adjustment of dental implants Sometime in the next week, we'll be headed to court as she's being sued for damages in a car accident 2 years ago that ended her driving career. I'm an only and she moved back here when dad was diagnosed, so I am pretty much her social outlet as well. And this on top of a bad fall my husband took where he cracked his sternum and left him disabled for several weeks. 

I have nothing to offer but commiseration. 

HB

MN Chickadee

I live in a town of less than 100,000 in the midwest. My mother is in MC about 20 miles away in a very small town. They still have doctors come to the facility. If the doctor orders PT, OT, Podiatry they come to the facility. So perhaps at some point in the future you can find a place that has more services. We do bring her incontinence supplies, shampoo etc but I stock up and can leave extras if I know I am not going to get back there for a while. I also order online and have stuff delivered directly to the facility. I get that you can't move dad too soon, if he does not have a diagnosis and you do not have POA you can't force him to stay in a place. You may have to wait for a crisis, or for something to change. If caring for him gets to be too much as your mom's needs progress perhaps he will be more agreeable to moving together to a higher level of care. 

I understand what you are saying. I could not get away for weeks let alone months even with a really good facility. But I think there are things you could do to get away for 7-10 days and spend time with your spouse while he still has some vision. There may be a pharmacy that will deliver. Our place works with a small town pharmacy, and they will deliver something like antibiotics spur of the moment. Ask the facility what can be done in the event you can't get meds. Do you have a relative or friend you could put in charge in case of emergency for a week? You can have a form notarized  giving someone temporary power of attorney. Obviously if something was horribly wrong you would be on the red eye flight home from a trip, but some stuff our LOs end up going in for really isn't serious and mostly they need someone there to hear the follow up orders and drive them home. But yeah I hear you. I'm to the point where just planning a quick weekend camping trip stresses me out because who know's what stuff will hit the fan. Being a caregiver, no matter where your LO lives, is a way of life and not something we can easily set aside for a vacation.  My non PWD parent was recently hospitalized, and it took so much out of me. It's exhausting, so I can see why you are feeling so down about everything right now. Maybe you will catch a break and things will be quiet for a while. See if you can get creative to spend some relaxing time with your husband. As for your friends who think you should be able to get away now - chalk it up to they just don't get it. Unless you have lived this journey you just don't get it. 

Worried about mom

QBC - I totally understand.  I have a mom in assisted living and I brace myself everyday for what will happen as something seems to "happen" EVERY day.  Mom was just sent to ER for hallucinations and not going back in her room.  It ended up being a 6 day stay.  I have to be there daily as she can't hear, see and doesn't realize where she is. I am sole caregiver even with brothers.  After hospital, I had to stay at ASL for over a week since she couldn't fend for herself, and they don't "have time" to spend extra time for her.  We are experimenting with meds, but every day brings a new challenge and constant phone calls from her or the facility (she's agitated, hallucinating, trying to leave thinking children are looking for her, depression).  

Her primary care sees her in the faciity, but unless I am there, I don't know the result or if she is seen on a particular day.  Mom is unable to understand he is the doctor and can't tell him her symptons (again if I'm not there).  I have lost my life and live daily putting out fires, constant worry and anxiety and stress.  I can't go out of town.....I do nothing but worry if we go out to a restaurant.  And now can I enjoy when my phone rings off the hook.  I know I'm where I need to be, but I'm not young either and my life is flashing away l  It is heartbreaking.

Quilting brings calm

Thank you HB and MN and Worried

The commiseration is exactly what I needed to have right now. 

As you have suspected, I don’t have the full POA for my step-dad, just the medical one. He’s too stubborn to admit he can’t handle adulting, even though I handle all their bills and have their checkbooks( they have the debit and credit cards, so they can function). . He’s never done more than sign his name  on an already written check ever. He’s the one that moved a bunch of money from their joint account to a new one in his name when Mom was so bad 19 months ago ( misdiagnosed UTI).  I have possession of that checkbook too. 

A couple of my step siblings  have re-entered  the picture in the last couple months.  However this will probably not last  as he spent over 5  decades of minimal  or no contact.  Mostly due to him ignoring them most of their childhood and the backlash in return.  Mom has 3, he has 3-   All of us under the age of 6 when they got married.   I could try to ‘tag’ one of them but they may or may not show up on any given day.  He certainly hasn’t asked them to run even a simple errand for him such as the bread and milk yesterday.  My two full siblings are on the coasts and I am in the Midwest. 

Edited to add worried since I saw that post after I typed this one. 

Worried - your life sounds even more hectic than mine. I don’t know that I could spend a week in an ASL( although I did spend 9 days at my parents independent living apartment  before an emergency  move back  here when this mess started). I hope your life calms soon.  

abc123

Dear QBC, I remember how stubborn your stepdad was and the unnecessary grief he caused. I’m so sorry for you and your husband. Worried About Mom, I’m sad for you also. I wish I had good advice/suggestions to share but I don’t. I’m wandering down this path alone. The only thing I know with 100% certainty is that outsiders will NEVER understand what we deal with. I think of everyone here daily and lift us all up in prayer.

Deanna_M

I can totally relate. When my mother was in MC, it was more like a glorified AL facility. So I spent a lot of time managing my mother's care, medical needs, personal needs and finances. And, of course, the calls in the middle of the night when she fell and needed to go to the ER.

I did not realize how much time I spent on all of that until my mother moved into a nursing home. Now everything is handled onsite, fully. I rest easier now knowing the level of care matches her needs. I have so much more time and mental space to just visit her and not be worried about all the stuff I had to attend to while she was in MC.

It's odd, but I am strangely relieved that she is now in a nursing home. She thrived, for sure, in the memory care facility for several years and I am grateful that she had that time.

Hang in there QBC. We never stop being caregivers, regardless of where our LOs live!

Suzzin

Me too. I'm constantly on call for my parents--I see them every day for several hours, make all their dinners (and shop for the rest of the food), chop up the veggies for a veggie tray which they won't even take out of the fridge unless I'm there to sit with them. Pay the bills, do the medical appointments and shuttling, answer the phone about what channel is the golf on and why is there a red light on that thing, you know, that thing over there. Change the sheets, do the laundry, I've given up trying to make them shower or change clothes. And still, every minute of the day, the phone is next to me and I worry that there will be a fall or some other crisis.

I'm okay in the morning until about 9 am and then I tremble with nerves and anxiety all day until I see them, not knowing what I'm walking in to. I calm down a bit at night (thank you, pinot grigio) but any phone call shocks me in to overdrive.

John2.0.1

Assisted loving does what it does. And things that it doesn't do, would anyone want them to for your LO??

They:

Serve 3 meals a day

Help to toilet and shower

Help those in walkers and wheelchairs to get around

Administer meds per the schedule

Do the laundry

Clean the room

Make the bed

Wash the bedding

Provide entertainment

Go shopping (pandemic permitting)

Go "out" for ice cream or such sometimes.

They don't and I would not want them to:

Pay the bills

Work with the MDs on prescriptions

Take mom to Dr and Dentist.

They are not DPOAs or Health Care Proxy and I wouldn't want them to be.

Quilting brings calm

John - you are absolutely correct. I don’t expect the assisted living center to do more  .... I want people to get educated about what an assisted living center does and quit telling me that the assisted living center is doing everything so I’m free to  just go back to before my parents needed help.    My own cousin thinks that he can put his Mom ( probably in stage 5 at this point)  in an assisted living center and then move a thousand miles away.  He thinks his brother that doesn’t do anything now will be able to handle his mom’s needs if she is in assisted living.  That’s the one that really got me started on my rant.  My cousins been living with or next to his Mom for two years now and should know better by now. 

Truthfully I do not know how people are managing to keep their loved ones at home because what I am doing is exhausting as it is. 

John2.0.1

If these people are really on your back, suppose you keep a log for a month on all the stuff you need to do. If you are DPOA you could even put a price on it. Not that you'd charge your parents but if your parents had no family there are people who DPOA for a living.

Just thinking of all the stuff I still do for my mom who is MC, I:

Fill the pill boxes

Do the bills

Do the telehealth calls for her meds

Meet with the financial advisor on her trusts

Shop for the basic supplies that are not provided like TP, PT, tooth paste, evening snacks

Check on her house that's still not sold but will sell some day

Call once a day at least to "check in"

Fix/glue the eyeglasses that she sat on.

Order new eyeglasses

Take her to Urgent care when she falls for a Xray

Take her to her PCP

Go see her at least once a week to find all of the stuff she has hidden in her room and thinks people have stolen because she forgot she hid them

Coordinate her care with the facility

Run over there when she is really upset about some real-to-her delusion she's living.

I'm sure I'm forgetting some things

I have not attempted to add it all up. But if I did and put a price on it, I expect it would add up to a part time job. And most of that happens when I am supposed to be doing my own job. I work from home, even prior to the pandemic, but a lot of that can't be done on weekends or after hours. It's not just time consuming but disruptive of my own work and much is unpredictable.

This isn't a complaint. It's just reality and the stuff I, and you, still have to do is stuff that can't just be handed over to "Staff" and you or I wouldn't want to if we could.

windyshores

People don't understand what assisted living is, and how little "assistance' is actually provided. Also residents are tenants, not patients, and can refuse assistance.(Therefore my stubborn mother with dementia gets almost no hope because she says no- after 6 years at the AL).

I send my brothers emails with all the details, which resemble the ones others have described. My brothers don't do anything but I insist on involving them. I am also paid a small amount, which helps with resentment.

COVID, sad as it has been, has shown me that the AL is capable of doing more. I am resisting jumping in for some things. I had to take my mother to the skin doc two days ago for a skin cancer and I am expecting the AL to care for the wound.  Normally they have me do it. What if I lived far away?

I am trying to keep my visits down to two a week since my mother got used to that during COVID.  I used to go 5-6 days/week.

The AL now changes her hearing aid batteries. I am not volunteering. Not sure if and when they will put that back on me.

Finding a doctor/NP and podiatrist to go to the facility is something to pursue for sure. The facility does not provide?  PT and OT as well.

My mother has been on hospice a couple of times (you could try that as well since hospice provides a lot of services; you don't have to be imminently dying as many think). They taught me to really think about MD visits and hospital ER trips.  I had my mother make out a MOLST form that prohibits transport to the hospital.

In cases where the ER is really needed, they have to call me.If it is a nosebleed I tell the AL to try harder! I left BloodStop for them to address those. If she falls and hits her head she does not need to go to the ER: even if the CT shows a brain bleed, are we going to do surgery? No! Etc.

My mother has afib, congestive heart failure, a valve issue and enlarged heart but we no longer go to cardiologist.  We don't go to kidney doc either. She has kidney failure and diuretics for heart make the kidneys worse but what is the doc going to do about it?

I have two support groups, one on Zoom and one in person that hasn't met. But the main message is that YOU are important. Within whatever financial and legal constraints there are, make yourself a priority too.

Maybe look at tasks and see what can be delegated. Or done differently. Can you send them to the doctor after writing the doctor about what the problem is, and have the AL drive them? What are you doing that someone else can do, or what can be left out entirely.

I am absolutely living in your shoes and have only started thinking this way. I just turned 70 myself and have been doing this for 6-7 years.  I am not healthy at this point and my kids need me. My mother was often abusive growing up and is at times now, especially with her dementia.  

I fully recognize how hard it is to get proper assistance for our parents, but I have also learned, despite my protestations in the past, that the more I do, the less the facility (and others) do and the more my mother expects.

Your health and happiness is important. Many of us see a therapist to deal with these stresses and I am about to do that.  Maybe that would help. But the therapist needs to understand the pressures we are under. Sympathies!

Amymv

Hello,

I can relate to your experience with the AL facility.  So many times I felt staff could have done more. I am very sorry for all you are going through.  It is easier said than done, but you must take care of yourself.  It was good to hear you say that your parents will be okay without milk or bread for a couple of days.  That is a good thing to keep reminding yourself of! Yes, they get their meals there!  I think you mentioned you have cut down to visiting twice a week?  In my humble opinion, I hope you can keep it that way.  Someone else here also mentioned hospice.  We got them involved with my mom shortly before covid hit. It might be worth checking into (like you have time for that, I know).  You might find hope there or maybe the SW can help set other help up. I understand though, my mom often times rejected help. I am so sorry.

I got frustrated because visits with my mom always seemed to involve doctor appointments, hospital visits, tidying her room, washing her clothes.  My mom would often times refuse to let staff help her. I felt they could have been more creative in getting those things done.  I tried to find time to make my visits fun. We'd stop at the drive-thru for a coffee after an appointment, get our haircut together, or I would take her for a drive to see where she lived growing up. I would tell myself to allow some time each visit to play Scrabble or visit, or take a walk with her to return books to the library at the facility. I guess what I am trying to say is to try to do one little fun thing each time you visit.  I am not trying to lecture here, but I found it made me have a less stressful time. You may already be doing this, but I think as a caregiver all the fun stuff can easily end up on the back burner. 

My mom passed away last June during covid.  I miss her terribly. You are doing your very best and more!  We don't live in a perfect world and you cannot do it all.  You have others to care for as well as yourself.  Ironically, my mom used to tell me I am a very important person and a lot of people count on me, she being one of them. YOU are a very important person and a lot of people count on YOU!!

I truly hope you can get away for even a long weekend to de-stress or grab some moments for yourself! Hang in there, and don't be hard on yourself!

JayEl

I really feel this. I go through the same thing with my mom. Sounds like maybe a memory care facility might help... tho I’ll be honest, I still have to get my mom special foods (she doesn’t like the facility’s food...). I also worry about being able to get away. Is there a relative who could take over for you for a week? Could you hire Visiting Angels for a week? I guess I can’t really add anything helpful, but I just wanted you to know that I see you and I feel you and it’s really hard and it sucks.