Mom fell recently and recovered after an ER visit. She looks better but is now depressed. My mental and physical health is at stake if I continue to be a 'caretaker'. Her medical follow up is a routine blood lab at this point. She is refusing routine medical care she says. This is where I draw the line. So I just sent a message of 'notice' to family members regarding my mother and her future care. I told family in the message that if she were to fall in the future and require rehab, that if she needed further 24/7 care at home I would no longer be able to provide that level of care and she would more likely have to be placed in long term care or assisted living. For the past seven years, I've been a family care-er, for a sister who fell ill, long distance for an aunt, and at home for my mother, all while having a teenager whom I feel has been deprived of my attention and resources. I've tried to manage caregivers, recruit family and friends in tasks and sometimes it's been successful but mostly the colossal load of grunt work has fallen on me.
Just in the past year, I can feel my own aches and pains and have neglected routine medical appointments. I've paid to have help come in, but each have moved on, and the process of finding someone begins again. Family and friends visit when they want but on their terms and never to formally relieve me which bugs me - I've been clear I needed time. It turns out for family members visiting I have to present as well to entertain or facilitate the visit. It gets tiring or I find myself annoyed at gratuitous offers of advice. When I have listen to what other's feel is needed in the current circumstance, I find myself cutting the conversation short and probably come off as rude. Everyone has their comfort level and capacity limits and I am learning to be more accepting, I've been fortunate that my own support system: a caregiver group, reading this forum, friends that regularly walk with me, and a long distance sort of relationship have been a lifeline.
I think I have to draw the line to save myself if there is to be a me and draw the limit of obligation. My sister and my aunt were acute cases where there was no time to process their situation fully and instinctively I cleared everything to be available, whereas my mother has declined with age and I've been here over the past five years increasingly full-time. I know mom's wish is to remain at home until her death. If there were support, maybe would be possible, maybe not. I just know now I need my home and my peace of mind and to pay attention to my son.
Decide what you think is best for the future. Then send out an email (better still, posted letters) saying that this is your proposal. If they can think of a better alternative that doesn’t involve you, it would be great. If they have good suggestions, they will need to take responsibility for them, because your health is failing. You would like them to write back to you with their suggestions, as conversations are very tiring for you and you have already set out what you think is best. Include a list of everyone the letter goes to, and say that it would be helpful if all the people on the list could discuss it between themselves. Give them a fortnight to reply, then just do it!
You have enough problems on your shoulders without having to be head of family United Nations. Sympathy and best wishes, Margaret
An update: a few days ago I got the cold/flu and could barely move from the couch. I asked a friend to bring cold medicine and at my doorstep my friend not only left cold meds but soup and fruit as well. I couldn't have been more thankful. This allowed me to function and at least heat up food I prepared earlier for the week for my mother and supervise her routines. Mom too developed a high fever which is a concern warranting her doctor's office recommendation to go to ER. (The last ER visit spanned 12 hours, with a 96 yr old ). The home health nurse was scheduled the next day, so I thought she would be able to take vitals and assess urgency. Well, the nurse cancelled. In the middle of the night, I woke thinking that I would find a substitute home health company. The rescheduling of a visit when I needed and without a substitute wasn't acceptable. I had to prepare myself to take mom into ER again. Alas first thing in the morning, I got a call of a substitute nurse able to visit. Again, I couldn't have been more thankful. This nurse was so kind and patient, it was the best medicine for my mother. Her fever broke and she visibly looked better with the nurse's visit. I too felt better. As the nurse was leaving, mom's long time church friend and gardener dropped by to visit with her children. Lovely family. I happen to mention that I was looking for more supervision for mom, and mom's friend said she could be available now that her kids are older. I couldn't have been again more thankful at taking her up on this opportunity even for the short-term.
Earlier, I sent a message to family members about mom's fever and possible ER visit again. I got responses of "please update us". I thought I'd push it and further asked if anyone was willing to do a load of laundry and take out the garbage. I said nothing of how I was sick earlier in the week. I got responses that they had their own laundry and garbage to take out and take care of their own. There it is. The unwilling.
You can't change them or their minds, you can only change how you react and/or deal with what needs to be done. They've not responded, so rather than wasting energy on trying to get them on board, or being angry with them, focus that energy on making a plan and making it work. You have to now do what's best for both of you.
While this 'plan' may involve moving your mom to AL, it sounds like she might not be interested or, worse, be totally against the idea. Our mom wanted nothing to do with moving, but with the dementia my brothers came up with a ruse to get her to move - still angry but she went. This will present some hurdles for you.
Even with dementia, you can't force her to move (or allow people in to help her.) If she doesn't have dementia, all the more important to understand this, because unless she is deemed incompetent, you likely won't be able to get guardianship (even with that, it is often geared towards maintaining as much independence for the person as possible, so you might not get capability/authority to move her!) Your rock|hard place is even worse than ours was!
So, writing off family and planning for if/when she falls again, telling hospital staff she has no care at home, refuses care and refuses to move to AL, AND stressing you can't do the amount of care she needs, hopefully they can find a place for her, but it might not be what either of you want or can afford. It might be good to check out some places, esp if you can find some of those home-like places that seem to be becoming popular. If you check them out, go back at random times to look around and observe, perhaps you could take her to them, to let her see they are NOT the same as NHs, and no where near to being like the NH of yore!
IL is for those who are still in relatively good health and mobile. Many people don't want to care for a home/property, even if it is a condo or the like. It allows them a place to live, but be independent. It generally is within a facility that allows one to age in place, often providing AL and MC.
AL is for those who are still in somewhat good health, but perhaps less mobile. They may need assistance with various ADLs, such as getting around, meal prep, laundry, bathing, etc., hence "assisted". It is NOT an alternative for a NH or MC.
MC is for those who are no longer competent to be living alone. It should be a safe locked down facility (someone mentioned a LO having a wrist band to notify them if she wanders - really?) Often the same people can have other ADL needs, such as walkers, wheelchairs, etc.
NH is for people who require specialized nursing care. Just having dementia or being confined to a wheelchair doesn't make one a candidate for this. There are many walkers and several wheelchairs in mom's MC place.
There are also smaller home-like places that cater to AL/MC, sometimes both, sometimes one or the other. These are sometimes less expensive and perhaps a little more care-oriented, but not as common (yet.)
Often you might have an elder who is beyond the capability of AL (needs too much assistance - you pay extra over a certain amount of assistance, but at some point it is too much), is not cognitively impaired and not a candidate for a NH. The smaller home-like place might work for them, but they don't seem to be as widespread as the AL/MCs are. You also wouldn't really want to place a person with full mental acuity in with MC residents, so that would limit options.
There really needs to be another level of care in the system, one for people who are still competent, but due to age and/or some infirmities require a lot more assistance than AL or LOs can provide. In care home can be more expensive than a facility, and help is often unreliable or even incompetent, but what choices do we have beyond the above ones? It isn't clear if OP's mom has dementia. If not, it sounds like she would fall into this category - too much for AL, not enough for NH, doesn't need MC, so what do you do with them? They can also refuse and we can't force them! Yet authorities will be quick to point fingers if something bad happens!
The biggest giant flaming pink elephant in the room is the fact that many people cannot afford ANY facility or home aides and a good number of them, although income limited, have incomes over the limit for Medicaid, so they are refused assistance!
The various issues need some kind of resolution. It is taking too much of a toll on people, robbing resources and taking people out of the working world (which will negatively impact them later in their own retirement as well as reduce the workforce!), destroying families in some cases, ruining our health at a time that we cannot afford to do that! It is such a difficult situation we are in.
Some say it is due to medical intervention/living too long, but there are some in mom's place who are only early 60s and healthy - dementia is taking them way before their time! If it keeps increasing like this, we will have more in facilities or home-care than in the work force!
I expect them to behave the same when mom passes, with the (modest) estate.
I can't believe they're doing this, but it's true and they are : (
I ranted, and I always feel guilty afterward; but at the same time, it needs to be expressed.
Side note, many seniors develop depression. Talk to her doctor about the symptoms you have noticed. He/She can get a psych consult or may be able to prescribe medications to help with her symptoms.
Remember, mom's wish to remain at home is, in many ways, an abstract wish and it relies upon you giving up what you wish for. That's not fair.
No one can prevent someone from having depression. It’s individual to everyone as well. What causes one person to be depressed will not necessarily cause someone else to be.
My feeling is if they are so smart, they can take her home with them when their annual visit is done. Or, just leave them there with her! Of course they would probably just leave her there alone, they are just so smart.
Best to just ignore them and do what is best. If all they can do is make stupid suggestions and offer no help, then it isn't in their rights to contribute to any decisions.
(FWIW: while I feel for the staff when mom lives - their job isn't easy, most of us know this and I often commend them for what they do - I had to listen to the guilt trip because mom was having leg pain and this person insisted she should go to the ER. We'd already been down this path several times, including a 4.5 hour agonizing (for me) ER stint. Unless bleeding, broken bones, something clearly obvious, ER isn't going to help. When I told her this, she actually suggested I try a different ER! After the other ER torment (note at in-take she denied having any pain and walked to the scale, etc unaided, yet for most of the 4.5 hours she moaned, wailed, groaned, you'd think she was dying!), I did take her to PCP a few days later, where she also denied pain, and even later to an Ortho (PCP not on board) - Ortho took xrays and said if she were 20 years younger, we'd talk surgery. Her knees are bone-on-bone. She had many times in the past said she needed to get her knees "done" but never did it. Now, at 96 with dementia, there will be no surgery. Visit the day after the call, nurse told me she was okay. I still made appt with pain specialist, to see if trying another injection to potentially ward off any near future "episodes" might be worth a try (ortho did that on our visit.) There's always someone who thinks they know better than you (and rubs it in, implying SHE is more concerned about mom's pain than you are.)
I have 2 brothers who do nothing and they love locally. 1 hasn't seen her in 2 years 1 stayed with her for a week but has pain management issues and was
homeless and a dangerous situation.
I plan on moving out of state for retirement so I can enjoy some time. And feel so guilty that I'll have to put my mom in an ALF. But what about me and my husband. No one visits her. So how do we do this? I also promised my mom no alf. But there not all like the old nursing homes. I too am stressed and have kids, grandkids and great grandchildren.
Mom needs totally care. One day her mind is there the next day she's talking to herself all night. Has nightmares. Hallucinates, its amusing sometimes. Sometimes she won't eat. She can go to the bathroom and she'll ask but she can not do it own her own
So let me know how you handle your situation and I see there are many of us in the same boat. I know I didn't answer your question but I hope my thoughts have helped!
Since your siblings aren't responding, make the decision, and get her in AL as soon as possible. Let them know your decision, and where you choose. Ask the AL people about affording it and any financial help available for her. Pick an AL close to other family members so they, too, can assist and visit her. After you've visited some ALs, take mom to see your best choice/s so she's involved in it. Emphasize to mom that it'll be her own new place where she can make friends her own age with activities and meals she likes and the 24/7 help she needs for safety. Be kind but firm that this is the next step for her and her safety and happiness (and yours!).
Good luck.
As far as the hospital not being able to send someone home, is that across the board everywhere?
I know here they will send people home in a cab if no one comes to pick them up. I wonder if the patient could ask for a cab or the hospital decides on their own that a patient would be okay at home if that would happen even if a parent asks that the patient doesn’t go home.
I guess what I am asking you is does a patient have rights if a family member doesn’t have medical power of attorney?
It can become such a nightmare for people sorting through caring for someone.
You put in writing that you will not be able to provide proper or safe care and if the hospital insists on sending her home without a safe plan for care in place then they will be responsible for the outcome. Give a copy to everyone that is involved with the decision to send them home. I would also ensure that the director of the hospital gets a copy.
Your moms are free to make those choices, you are free to say that you won't participate in the bad choices in any way, shape or form. I would not help them get home, i might stop visiting and answering calls. It is not in their best interest to go home without rehab and it is killing both of you to prop them up. Stop doing it for your own sake as well as the sake of your children and spouses.
It will be hard to say no, but it gets easier after the 1st time.
Take care of you and let the professionals handle your moms. There truly comes a time when they need a village.
Strength to both of you to learn to say, NO! It is a complete sentence. No explanation or excuse required. No. No. NO! NO!
Evaluate her finances, her insurance and no more than 3 long term facilities. Involve your family members and make appropriate plans. You and others will be able to visit your Mom. She will be safe from injury and well cared for.
You both will be able to enjoy what is left of your lives and your son can have more quality time with Mom and Grandma.
Get moms needs assessed (ask her doctor to order a needs assessment and if she says "oh no, she does so well with you" either find another doctor or tell her that this is killing you) and the find a facility that can provide it.
Much as you might wish it, other family members are not going to volunteer to take mom on. Most families have neither the time nor the will to provide nursing- home level care to an elder; they understand how difficult it's going to be and opt for a good facility.
Is your mother's depression being treated?
Your son is your first priority. Can mom budget for the fees at a local Assisted Living facility?
Don’t feel guilty about wanting to be there for your son. It destroyed me taking care of my mom and not being a part of my daughter’s lives as much as I wanted to.
Follow your instincts. Your son comes first.
I agree with other posters. They gave wise advice.
Hugs!