My parents are 88 & 89 and currently living in their own home. My Dad (89) had a heart attack and was diagnosed with congestive heart failure. I live 2 hours away, so I hired Home Instead care 2 days a week and meal delivery. I go once a week for Dr appts, grocery, etc and stay 24-48 hours. I have toured 4 assisted living facilities and narrowed it down to 2. Both are 5 min from me. I drove them here to tour them this weekend. Their chat today is how 1. They don’t need to pay for care at all since they feel they are independent. (Which they definitely are not!) 2. Want to stop home instead care and meal delivery since I come once a week.
Now a bit about me… have rheumatoid arthritis and have to have back surgery in Sept for a synovial cyst on my spine. I’ve been told my recovery time will be about one month. Therefore, my true caregiving is limited.
They refuse to see what’s best for them, and all of us. I might also add, they have a lot of money and continue to bring every discussion about their care back to dollars. Makes me so mad! I’m feeling a bit defeated, and don’t know where to turn for sound advice/help.
They made me stop the home health care and meal delivery. I’m taking them back home today and am worried sick about leaving them. How do I do what needs to be done and let them still have a voice? This is so difficult!
Thanks for any advice 🥰
Take care of yourself and give yourself as much time as you need to recover. You have the caregivers setup for your parents so probably will be pretty easy to turn it back on if needed.
My mother lived in her own home alone until the age of 94. She drove until she announced that she thought it was time for her to stop. She had no signs of dementia or frailty until she was about 95 when my brother moved in with her. Her husband, my father, died when she was 77. She always had a trusted housekeeper that not only cleaned every week but also had a decades long close bond with her and she checked on my mother regularly. As they both grew older, they became more like pals who watched soap operas together than employer and employee. All of us five kids also called my mother constantly. If your parents are still able to function as a team, your worries may be more about your own fears than real concerns about their safety. I have known many couples who lived safely together until they were in their late 90s.
Their irrational preoccupation with money is probably just a smokescreen that they are using to ward off your insistence that they give up their home and their independence. They are not ready to do that. Wait for some sort of crisis, hopefully not too big of a one, and they will realize when they need more care. In the meantime, be sure to let him know that you have to take care of your own needs and if they choose not to have any care in the home, you cannot make up for that lack of service. Have a pretty frank discussion with them about what you can and cannot do in both the short and long-term. In the meantime, do you have any brothers and sisters who can help out by maintaining regular, sustained and frequent contact with them?
They may live alone.. but..??
This is an excellent question.
They can *independently* buy a burger - but this is not "cooking meals".
They could receive a meal delivery service you ordered - but could they independently arrange one? Store the food safely, look at use by dates, reheat?
This is the start of the slide...
PS Being *stubborn* about their level of independence is common.
Could be Denial - the cure is letting the consequences prevail eg cheeseburgers on rotation until they get sick of this, give in & accept an alternative.
But can also be Cognitive Decline, learning from consequences much less/absent.
Time will tell.
As to your other comments; the hardest part of handling this delicate balance is watching them eat 'old food' because they refuse to throw it out; can't order meal delivery, so they must drive to get anything they don't fix themselves. Then driving may be an issue etc.
It is denial - at that age; they don't want to move, don't want to admit their need for outside help and we kinda have to sit back and watch and pray they take our council. You may just have to keep gently prodding them to get help or move; but don't make the mistake of becoming their 'go-to' unless you want to ultimately become their caregiver. Slippery slope.....
They are living “independently “ for now. Though when I talked to Mom yesterday, she said she’s been so worried about Dad that she forgot to take her own meds for 2 days. Then she accidentally took his 🤦🏻♀️ Is this independent living? They clearly need help. I’m so stuck about what to do.
They need to live their lives, even if it means a downward trajectory 😔
heart and head are not in sync
However, you can use that to your advantage. If you were to add ALL the costs it takes for them to live in their house (food, electricity, heating, water, sewer, lawn service, car, property taxes, etc.---make sure you account for all of your time at either caregiver's wages or how much you get paid at work, especially commuting costs), does it cost more than what an assisted living center costs? If you are providing food, make sure you consider your time and cost in getting the food, preparing it, and delivering it and include the gas or electricity cost for the cooking the food and cleaning up after cooking the meals. If you are only going there once a week, add more in for refrigerator cost. Does he have repairs coming up on the house? Could you rent their house? If so, subtract rent out of the cost for the assisted living center.
Sometimes seeing it in black and white is the only way to open the conversation so that you can convince them. Change is hard. Moving is hard. To them, your time is free, therefore, they don't consider it in the equation. You need to make them aware of the cost of your time. See what the numbers show....hopefully, the numbers point to moving to the Assisted Living Center as the lowest cost alternative.
You've put them in touch with the services they need. Add in reliable cab companies, and if they like they can give you a weekly shopping list which you order online for delivery.
Establish the new routine now and save your time and energy in preparing for your surgery. Best of luck, hugs.
Your parents at this point should help you, offer support.
There is no dilemma, frugal is one thing, taking care of their needs and paying is what responsible adults do.
Just start saying that you can’t come this time. Don’t turn up. When they phone, say that you aren’t feeling well and can’t come. Repeat, repeat. Perhaps every time, perhaps once to experiment, then build up to make it frequent. No arguments, just actions – they speak louder than words, can be much less painful, and much more effective.
If this seems a bit irresponsible for you, tell them the visit before that you have not been feeling well and may not be able to come so regularly. Leave them with a list of people they could contact for jobs. Don’t offer to organise it yourself.
This was the only way I got my LO to start understanding.. it is ongoing.
Then notify them that you will not be available for between two and six months depending on your doctor’s advice due to your surgery.
They will have to sink or swim without your help. They were able to do it when they were fully functioning but not now. They will have to experience their current situation on their own to understand what they are unable to complete.
My in-laws gradually were unable to do things and their home fell apart around them because they didn’t want to ask for help. It would have required too much of a change. The only way things changed was when my FIL, a sweet man, passed and my wicked MIL was frightened to remain in the house alone. She made a mess by calling the police all the time and we were told she would be taken for evaluation if something wasn’t done. She ended up in assisted living as an angry person taking it out on her family who refused to take her in because of bad behavior. She has doctors come to her, gets to keep a nasty little dog, and gets the care she needs. She repeats that this is not what she and FIL agreed upon but she couldn’t stay in the house where she was frightened and refused services.
livingintx - made some valid observations that I had seen when our mother initially moved to AL before she needed to move to NH. Our experience was certainly not as bad as her mom's experience. However, it was very clear the facility was for profit and not up to caring for elderly residents as their care needs increased. Also, a resident could be discharged for whatever reason on short notice and many AL will only allow a minimal number of Medicaid residents as required by your state laws.
I certainly am NOT saying all AL facilities are negative places as many residents have very positive experiences. It is excellent that you have several AL choices to compare them. Just go in with eyes open and understand how they operate and what additional fees are charged for added services.
Leave them the numbers for a senior shuttle service (for doctor appts); leave the pamphlets you collected at the AL facilities and make sure they have enough groceries and home supplies to last a few weeks; and kindly but firmly tell them that you will not be back until after you recover from your surgery; or if they want to discuss the options for assisted living.
Explain that you love them enough to want the decision to be theirs; but you can no longer watch them make bad decisions and have to take care of your own health.
We went through this with my in-laws and it was the only way to get them to understand they were in need of more care than we could provide. Our health and marriage was suffering as well; but they dug in their heels until we put a line in the sand. It's generational - not just your parents.
I hope when you spoke to these facilities; they told you if they have a waiting list?
It's not uncommon for them have a 1-2 year wait; so it's imperative they get on one. Some hold a fee; other's just put your name on a list. When they call to say they have an opening; your parents can always decline and go back to the bottom of the list.
As to the money; remind them that this is what they saved their whole lives for - to be able to care for themselves and not depend on others.
It is extremely hard to walk away; but they have become utterly dependent on you, and until you cut off your visits for a few weeks they won't appreciate just how much you do for them and how badly they need to get into assisted living.
Please take this step and do not cave when they call begging for help or yelling at you because if you don't take them to an appt. Have all the phone numbers and contacts ready for them and remind them that you are unable to come; so if they need something they need to contact someone.
Pray for strength and resolve. This won't be easy; but it's necessary to get them the help they need.
To address "livingintx" comments: I wonder if her Mom was in 'independent living' at first. They don't provide the same services as AL. Assisted living typically provide all meals; they don't have stoves; only microwaves); and have a nursing staff 24/7 (not just weekdays 9-5).
Also; as to her other comments regarding care; med management etc:
1) check your state (in Nevada and New Mexico); the AL facilities are all regulated by the state.
2) Unless your parents are declared incompetent; you have no say in hiring/firing of a home health company; unless you pay for it or they live in your home. The elderly are well protected from 'elder abuse' and most facilities will not act solely on your request.
3) AL often charges by tier of care needed; and resident interaction is based on this. If a resident doesn't want monitoring (such as wellness checks every few hours); they will leave them alone to live their life as they choose.
4) They will charge more for additional levels of care; and yes; you would have to talk to the staff to find out what care is included in certain levels; but because they allow the residents as much freedom as they want (until they are declared incompetent); you may have to intercede and ask for help.
Based on my experience; our AL facility is reasonably priced; not over the top snazzy; but well maintained and highly sought after. All meals are included (they will deliver to the apartment if they are sick); they have activities; vans to appts. (if you prefer; they also have doctors/nurses that will come to the facility regularly so they don't have to travel)
When they first moved; they didn't need any extra help; now after a few months; MIL agreed to med mgmt (slight added cost monthly); and they just recently started wellness checks on them every couple of hours (no added cost). PLEASE do not shy away from encouraging them to get into AL. We are not all 'caregivers' at heart and your health is important too!
And when one of them or both gets too much work for the staff, well, they'll kick them out without having to provide any reason, and do it probably the day they are supposed to return from the hospital. OR they will tell you, you need to pay more and the cost you thought was X will be XXX.
I've just gone through this. No, not all ALs are the same. But most are. And you can't judge a book by its cover. They usually are not really overseen by the state, like nursing homes are.
To me, an AL is just a waste of money and a problem waiting to happen and a lot to have to deal with from the caregivers to the director, to the nursing staff, etc.
And that is almost MORE stress than dealing with an elderly parent.
You should re-hire the home health care and meal delivery. Tell them that's required and you're not going to discuss it. Buy them both an Apple watch so if they fall it'll call 911.
Tell them you can no longer care for them. It's not your job or your responsibility.
Everyone thinks an AL will help. Maybe for a few days/weeks/months, maybe years, but it depends on the AL. There are TONS of news articles about how ALs dump people once they become too costly to support. https://www.cnn.com/2018/09/20/health/assisted-living-eviction-partner
If they have a safe place to live now, keep them there and just hire help. If it has to be 24 hours, and they have the money, do that. Find a few caregivers who want to work for them long term.
My mom's in one of the nicest places in town. They keep forcing her to pay another $400 for this and another $400 for that. She's fallen twice and had to go to the hospital. Both times she laid there for hours screaming for help. Their call buttons don't work or the staff don't show up. They tried to give her someone else's medications twice. (I think they were actually trying to drug her.) Her toilet backs up into the shower frequently. They went from saying they'd do her laundry daily to now saying once a week. The food is up and down, but definitely not giving her enough nutrients. Although she's gotten older, she's gotten worse from the stress, the bad food, and the falls. One was probably because the shower doesn't drain and she slipped on the water.
This was the second one she's been in. The first, a brand new place, didn't give her meds for three days. She's on high BP meds. The med techs didn't know how to take BP, and the food was horrible. The staff could never tell me specifically what she was getting in terms of care. So she really never got the care they promised during the sales pitch.
What an elderly person needs is a) a safe place to live with assistant items like wheelchairs, bath chairs, etc. b) someone to oversee daily living activities like bathing, meal prep, etc. c) some stimulation mentally or emotionally.
A home, apartment, can provide a place to stay. The rest is really hired home health care workers.
Best of luck.
When we finally 'stepped away' from most of their care; they were finally convinced that they needed the extra care AL provides. We are extremely happy with the AL facility. They aren't snazzy; certainly affordable; and give my in-laws excellent care.
I must ask if you have relied totally on your mom's words when I read that the call buttons don't work; they give her someone else's meds etc. How did you come about this information? If it's from your Mom; I caution you to tap directly to the staff wherever she is. In the elderly (especially when dementia kicks in); it's not at all uncommon for them to make stuff up to gain attention or sympathy (or convince a family member to take them back home.
Med techs at these facilities are required to lock up individual's meds and log all dispenses; so if your mom is telling you they mixed them up; she's probably mistaken or lying.
In my experience most AL's do not 'charge' for ambulance rides to the hospital; they contract with a transport/ambulance company; give them the resident's information and the resident gets a bill directly (which in turn can be sent through insurance if it hasn't already been)
I really wonder about your assessment that AL's are not state monitored; and if they truly are as bad as you describe; (even if your mom is no longer there) my first phone call would be to the state/medicaid to lodge a formal complaint.
Again, sorry your experience was so bad. I hope you find peace and comfort in finding good care for your Mom. It's not for everyone; and guilting them into feeling like they have an obligation is really not helpful.
We are healthier and happier knowing that we have my in-laws in a facility that we trust and my in-laws have come to accept the extra help with gratitude and look forward to our visits.
Giving them some ownership and an important way to be taking care of you might help them at least embrace the home care again and it may help them see that they need more help than they thought and even if they put it on you (you worry so much and we want to help relieve that) maybe they will decide more help or moving is wise after your recovery.
Good luck on your surgery, there is only so much you can do to care for and protect your parents and if they can’t bring themselves to cooperate you need to work at letting go and let the chips fall where they may. It is not easy but this surgery actually provides you the perfect distraction, you can’t protect them without their help unless they are deemed incompetent to make their own decisions and you have DPOA and you have done all you can to set up help, you are not responsible should something happen, should they have problems keeping up with their needs. It is very hard for some elders to accept that they need help, especially when they are fully competent mentally and have learned to compensate for growing needs physically over time and the only way they see the light (sometimes they never see it) is when something big and scary enough happens. In these cases unfortunately we the people that love them have to step back and just pray it isn’t life ending. It’s still their lives, their choice and kind of like watching your teenager make poor choices and just hoping it will be life altering in a positive way rather than a negative one.
Tell them that you can not do this and since they seem to be able to manage you are going to need some time to take care of yourself.
Take a few weeks to get yourself, your household ready for your surgery. And see how they do with 2 weeks of no help from you. They might realize you are right.
If so then they can make a decision as to where they want to move.
Tell them that they are going to HAVE to move to AL for a month or two (I would go for the 2 months) while you recover.
Help them move in a week prior to your surgery no longer so they can adjust to asking AL staff to help them with what they need. Then it is possible that after a month they may realize that they like it.
If they still want to return home you have to tell them that they will have to have Home Health Care and meals delivered because you are still unable to do what you have been doing and tell them it is Doctor's orders. You can use that excuse for at least 6 months! (maybe even up to a year but you can't take that ski trip!)
My mother was did the same thing your parents are now doing. Then one day, her back fractured from osteoporosis - could have been a fall but no one was there and she didn't admit to anything.
That was the final straw and I moved her into my home - she didn't want to, but I had let her wait until both of us had no other choice.
I wish you the best. Your parents are blessed to have you.
I learned this when my husband fell and broke his hip. I had to make an immediate decision what rehab to send him to and it turned out to be the worst place because I could not check around. With all three of you being vulnerable to a health crisis, because you love them you want to be sure they already have a plan in place. You may even want to appeal to your father, if he has another heart attack, what would your mother do by herself trying to arrange all the care they both need if you happen to not be available due to your health.
They need to be reminded how blessed they are to have you. I've tried to approach this very subject with our sons and they totally agree it is important but have not responded to my attempts for deep discussion of how to take over in an emergency. Several years ago my youngest, out of the blue, asked what would they do if something happened to me! At that time I had not given it much thought and simply said I don't know. Since then I have made attempts to discuss it and at least have our documents in order to try and make it easier. Hopefully your parents will become more open to discussions you need to have with them and to a care plan that works for all.
Don't be tactful or dance around the issue. Just "no, not doing this any longer. Your choice what to do next".
Only when they are declared incompetent by a doctor do you have the ability to get 'guardianship'; which does allow you to make those choices.
I realize that there is stuff they cannot do but are you disabling them in other ways? I would make it clear now, that you will not be their hands on caregiver. That by moving to an AL there will be someone to help them 24/7.