Thanks in advance to everyone. I am at my wits end dealing with my 71 year old mom’s problems.
Mom and my two brothers live in northern Illinois. I live in Florida. Mom lives independently with her husband who has moderate dementia. She is his primary caregiver. She has diabetes, high blood pressure, etc., managed with a lot of medication.
Last summer mom fell and broke her ankle. She eventually had surgery on it, after which I flew in from FL and stayed to care for and husband for a week. My younger bro stayed with them the following week. Things seemed ok.
Crisis! Mom then became quite ill but refused to call the doc. Things got so bad that she had to go to ER. Severe kidney infection. I worked and worked to set up home health for her. She hated it. I coordinated it all because she refused to answer the phone. It got so bad that she told us she thought she was dying. I was able to get a tech to come to the house and do blood work. Tests came back clear. Likely a reaction to antibiotics. I was exhausted from dealing with all of the scheduling and being her go between, but I wanted to help.
Crisis. Mom goes for a follow up for the ankle. It isn’t healing properly. Sees specialist who had to redo the surgery. There is a possibility of needing to fuse the ankle or even amputate. surgery goes pretty well. mom wants to go home where she has no support, we somehow convince her to go to a rehab facility. This all happens over Christmas and New Year,
Crisis. Mom hates rehab. Falls at rehab (she denies falling—says she tripped because they had a bunch of stuff in her room). Since it’s the holiday, we can’t get her released until the first week of the year.
Crisis. No one can pick her up—I convince her to talk to my uncle (her brother) and get him to take her home. Meanwhile, her husband has been taken to stay w another daughter out of state. Mom comes home to an empty house, but actually does ok. Goes to follow up for the ankle and things look great. This was last weekend. I stupidly feel optimistic.
Crisis. She now has extreme chest and back pain. Back to the ER. Admitted. Days of tests. As of today they think it’s a compression fracture in a vertebrae, likely from a previous fall. throughout all of this I am talking to the home health company, care coordinators at the hospital and nurses, keeping the family up to date. Difficult because I also have a job and demands of my own life, but since I cannot physically be there, I figure I should take on the responsibility.
Tonight, I am talking with my bro’s about what we can do when mom is released. She likely will have a procedure to help stabilize the fracture and assuming they get her pain under control, send her home. It’s likely she will need someone to stay with her. Older bro says his work schedule is too unpredictable and he cannot stay with her. He lives about 20 minutes away, but even stopping by at the end of the day to check on her is a challenge for him. Younger bro lives two hours away, but he is a pet sitter and if he is away from his area for long, he essentially cannot make money.
Which leaves me. Again.
I understand that everyone has lives and issues, but I am quickly seeing a pattern that I am the default to deal with things. I am really trying, but nothing I do seems to help, and I don’t know how much more I can give. I am worried about traveling in the height of a pandemic. This is causing stress in my relationship. The week I spent at their home in Nov left me feeling drained. I thought I could work remotely from their home, but neither parent would leave me alone long enough to do any work or take a call.
I feel trapped. I feel like with each crisis, more is being pushed on me, and it’s like a hole I cannot get out of. I have built a life that I love here in FL. I do not want to give it up. I am trying to help, but it never seems to be enough. I don’t know what to do and I hate living like this.
Take going to IL off the table...at least until the pandemic is over. And next time you do visit it is only for a week or two and you stay with your brother.
The first person that needs to change is you. Stop riding in on your white horse.
I used this line all the time about my father. The more I helped him, the more helpless he acted/became. Think about it.
hug! :)
you wrote:
“The more I helped him, the more helpless he acted/became. Think about it.”
actually i noticed a similar thing. i suppose it’s simply handy to give the work to your adult child.
i’m now taking a step back.
let’s start 2021 well!
with good solutions/ways forward.
:)
bundleofjoy
When it's time for her discharge be very certain that the doctors know that there will be no one with her or providing assistance or care. This must be made very clear to them because if they ask your mother she will tell them that her family will take care of her and they will believe her. I know this because it happened to me when I was sitting there saying "No, I can't be there all the time" and my dad said "My daughter will take care of things." and guess who they believed? And they went ahead with the discharge like I was invisible and I was expected to do everything.
You can help by working on finances, organizing paperwork, and saying "no, I can't do that" frequently and clearly. Personally, I think it sounds like an independent living/assisted living apartment would be perfect for her. She could continue to live independently, including her own cooking, etc. but there would be staff around and as she needed more assistance it would be readily available.
How about this when mom asks again.
Mom: "Tree, can you come out and stay with me for awhile after I come home from the hospital?"
Tree: "Mom, I COULD come out and stay a SHORT while to help you (a week, two weeks?), then I had to go back. But mom, you will still need help after I am gone. So, that's not a good long term solution, mom."
Mom: (protests) "But I will blah blah blah....And you can work here. Blah blah blah..."
Tree: (stay firm) "Mom, I can't work there. I couldn't work there last time I stayed. The best help I can do for you is to ASSIST you in arranging for outside services to help with whatever you need. The hospital social worker can arrange for home health nurse/aide, PT, OT, etc. I can get you in touch with him/her and s/he can tell you all the services available."
And just keep staying on the path of getting her outside help.
Goodluck. Your life is worth fighting for.
Mom: Can you come out and stay with me after I come home from hospital?
Tree: No, I can't. You'll need to set up short-term services until you're properly back on your feet. Ask the hospital's discharge team about it.
seriously, that comment has made me laugh more than once this week and I appreciate it. 😊
"Sunrise to Sunset*
I take care of myself
I live on my own
Except when I can't
So be by the phone
I eat my meals
I sleep in my bed
Just do my shopping & keep me fed
Do my shopping & cleaning & gardening & bills
Take me out when I'm bored
Stay here when I'm ill
I just need a little help, now & then
From sunrise to sunset then sunrise again
One day there will be the call,
I'm afraid she's had a bad fall,
She took quite a trip,
Has broken her hip,
Need a nursing home after all.
It is hard, yes; so try this equally hard-nosed way of looking at it.
You are IN HER WAY.
Take the home care thing. Her calling you to cancel an appointment, you calling them to reschedule and reorganise... it's ridiculous! If your mother can call you, she can call the agency. She can schedule her own visits. And to prove that she is perfectly well on top of her diary, she knew when she called you that they were due to visit her, did she not? So don't give me the fuzzy with pain pills shtick - it was just easier to get you to do the job - she didn't have to look up the number or have an awkward conversation.
Now think on: if she'd had to call the agency herself, she wouldn't have wanted to (too much trouble, too embarrassing) and she probably wouldn't have called, and the result would be that the visit from the aides would have gone ahead, and if the aides are worth their salt she'd have got some stuff done around the house and she'd have had her mind taken off how unwell she was feeling.
It's very easy to smother somebody when all you want to do is help them. There you have the best reason possible to back off.
:)
hug!! i so agree with the way you present it:
in my case, you describe it very well.
and indeed i’ll back off.
i’ll copy/paste your answer in my notebook, where i try to learn from good advice.
indeed, i wanted to be kind, help out, make things easier for the person.
what i’m getting is at times “thanks”, mixed daily with screaming, false accusations, lies, demands/orders for more help (not “can you please...”). it’s done on purpose, trying to get me to be upset.
i actually want to help. i love/care. the person orders me around. when i stand up for myself, the person screams. when i don’t speak in a cheerful voice (of course not, because i’ve just been abused), the person criticizes my tone of voice (i speak normally by the way, just not with a big smile after being abused) (i always speak calmly, nicely).
in my case, if i physically walk away, the trouble for me, is that this means also being less in contact with someone else, and i don’t want that. but i’ve explained to the other person, that i can’t be abused like this. that person agrees, and finds it horrible how i’m being treated. that person says, i should get away.
i’m helping both people by the way. the other person is always nice.
dear country,
you’re right:
it’s easier for the person, if you do the job (they don’t need to do the troubling work, or embarrassing phone call). i didn’t see, that’s what’s going on. yesterday i saw it. i gave the email of someone, so they can contact the person directly for a question they had. suddenly they weren’t interested in asking the question.
long ago, the person i’m helping said, they don’t want to exploit their children.
i’m the daughter.
the person doesn’t mind at all how badly they treat me.
i’ll be backing off.
i must focus on me now. i must heal again (it happens every time i help out: yelled at, etc.). it takes me weeks to heal. also i start eating badly (chocolate, to make me feel better). my body suffers every time, i help out.
i’ve prepared all numbers, so the person can contact people, and so i stop doing it for the person.
i’ve helped so the person can get up to a certain level. now i can back off a bit. the person has reached a good level: i got rid of many problems for the person.
i’m not backing off totally.
but i’ll be backing off.
hug!!
As for the surgery, rehab it is-once they release her, your Care Manager may have all the pieces in place for you. Medicare will pay for an aide few a few weeks a couple of hours a day and some home physical therapy.
You can only take it one piece at a time - or it will overwhelm and overtake you.
Don't take it all on your shoulders, please. I wish you luck.
Love you.
The end.
These are your mother's crises, not yours. You feel responsible for her, but you aren't. She is responsible for herself. You are there to offer her love and support, but not to care for her physically....thats not possible given your job and responsibilities in Florida. Would that I could, mom. But I cannot.
Good luck, my friend.
You are not trapped. Nothing is being or can be pushed on you. You are not in any sort of hole. Stop volunteering! These are your mother's crises and your mother's responsibilities (e.g. your stepfather's care) and it is for your consenting adult mother to find her own solutions to them.
She will likely need someone to stay with her when she is discharged from rehab? Very probable. So before that happens, she needs to take advice from rehab about where she can find these services. But SHE needs to, not you.
It's like this. You scurry around from pillar to post desperately trying to make things work in some way that will make her happy and grateful. But she isn't *going* to be happy and grateful. She is going to grouse and whine, because her body hurts and she's tired and fed up, and she would much rather not need to have someone in her house getting in her way and telling her what to do. Wouldn't we all? Wouldn't you?
Suppose you stop. Suppose you give her a list of services and contact numbers and your very best wishes and let her get on with it. You're afraid, are you, that she will do nothing and go home hoping for the best and have another fall? Mm-hm, possibly so - and whose fault will that be? Not yours. Not your brothers'. That leaves her.
If she were fifteen years older or demented or dim, it might be different. But she barely counts as elderly. Let her handle this.
i really appreciate your answer. although it’s directed at treecrout, i’m learning a lot from your answer. hug!!
bundle of joy
It's hardly the ideal scenario, but his excuse of concern for not being around to take care of dogs when he won't take care of a human is pathetic.
If this was my mom, I would be telling her that I won't be propping her up any longer and she needs to decide if she is going to an assisted living with or without her husband, because she is going.
You are not a plan so she doesn't have to do what she doesn't want to. PERIOD!
She needs to go to rehab and do everything she can to get as strong as possible and while she is doing this she needs to think about what her future looks like. Her husband needs more care then she can provide, her children are not responsible for propping this situation up. Talk to his children and find out if they have any idea what he wants and how they can help accomplish this for their dad.
Tree, you will lose everything you have worked for if you don't step back and make your mom deal with her life. You don't have to abandon her to accomplish this, you just have to decide what you are willing to do and stick to it.
Caregiving for a spouse with dementia is difficult and she is going to be a statistic if something doesn't change and I am not talking about you now caring for both of them. If she isn't mentally able to cope with decisions then she needs to give you DPOA and do what you deem is best, like what facility will best meet her and her husband's needs.
Failure to plan on her part does not constitute an emergency on yours. Sometimes we have to step away for them to look at their situation, please do that, for all of you.
"Failure to plan on her part does not constitute an emergency on yours".
THIS.
"Sometimes we have to step away for them to look at their situation, please do that, for all of you".
Absolutely yes.
Only you can make this tough choice and it can't be done without feelings of inadequacy because you aren't a Saint, and cannot fix what cannot be fixed. It will have you feeling great grief. But you will still have your own life.
And if you and hubby were to move? Give up your home, your lives? Move into hers, and it all goes where it is going anyway, then aren't you homeless and jobless living where you don't want to live.
As I said, only you can make this choice. Your continuing to go there and take care of things is enabling your Mom and Dad to not recognize the truth.
She is fragile for early 70s. I wonder if you can tell me if there is some other problems underlying, such as diabetes?
I am so sorry. There's no good answer to this one.
today my brothers and I called her via conference call, and she said “I wish I could change places with you, Tree.” Not “I wish I could change places with you guys.” She chose me specifically. She would prefer to have my life and have me in the hospital, I am processing that.
This really tells me that she sees me as her solution, and expects less of her sons. My brothers do not agree and tell me that this is not how things are going to go, but I am so exhausted from thinking about this. Right now I just want to get her stable enough for me to say, “Look. I am not your answer for everything.”
I know this is something I need to deal with, but honestly I am so sick of this push for me to be the one doing it all that I could scream.
thank God for this Forum and people that can relate. I appreciate you all.
hug!! your worry, stress, trying to help, being the default person, sounds similar to me.
courage!!
indeed, i think it’s hard to find balance — being able to help, and still be able to do your own things.
if more funds are available, then more carers can be hired for homecare. less work for you.
i hope your siblings help out more.
in my situation:
i simply - must - take care of my problems. otherwise i’ll drown, helping (but not helping me).
dear treecrout, i think you must make sure you can live, and care for your own problems. we love and care — and must also do what we must do, for our own lives. loving parents don’t want our lives to be, in any way, destroyed.
I think it’s time for mom to be in a good assisted living facility. She is young but it looks like there’s no end to her health problems.
I did the long distance care thing for years all by myself for two parents. It just about killed me. Finally got them in assisted living in their hometown.
Here’s the thing about assited living. I still was on the phone a lot dealing with issues but they were clothed, fed, and looked after. I still made lots of long drives to check on them but I had No falling down house to worry about, or mom falling and not being found, dad with dementia couldn’t tell if she was sleeping or in a diabetic coma and driving around getting lost. The staff and the medical folks who came by took care of all meds and medical treatment. No more trying to get them to 6 different doctors. ER trips were managed by the staff.
Maybe for you mom she would get healthy at some point and could go home with some in home care. This is big money. I have no idea what her finances are.
As for step dad, I would politely let his family know that he’s their responsibility now.
Examine your own reasons for your reactions to mom. She is aging before she should. It is obvious that she will never be able to care for dad again. What will happen when brother says no more?
You are dealing with plenty right now. Do you have POA's for both? Have those important documents been prepared?
The situation needs to be brought under control. You cannot do it alone. Until the folks have a plan in place, many times adult children will have to wait for an emergency. Mom obviously cannot care for herself, much less dad too.
Time to tell mom "I can't do this anymore. Your lack of flexibility and planning do not make this MY emergrncy".
I had the "I can't do this anymore" convo with my mom when she was 88. She understood, because while she had the beginnings of cognitive impairment, she trusted us and knew we would do the right thing by her.
Mom needs a Geriatric Care Manager, someone who can be boots on the ground to manage this increasingly complex situation. It is STEPFATHER who is the elephant in the room.
It is likely HIS difficulty with having in home caregivers and commotion that is driving her intransigence
Is it time for a “Come To Jesus” conversation with one of her many specialists? Sounds like it might be.
If SHE can’t or won’t involve herself in her future, her children CANNOT plan it FOR HER. The three of you have each done YOUR BEST, but has MOM DONE HERS?
See if you can get one of the therapists to navigate a family conference, and have mom clarify what she wants and how SHE will work towards achieving what she needs.
You really can’t fairly expect yourself to do more if Mom isn’t doing much herself.
And ask yourself- why are you willing to pull more than your fair share of the load?
First, I want to point out something. Could your feeling of being trapped come from your thinking that YOU have to be responsible for fixing whatever is wrong with your mom and her health?
Reading your post, I don't get the sense that your brothers feel the same responsibility you're feeling. One brother decides that his work schedule is more important than helping his mom. The other brother decides that his livelihood is more important than helping his mom. So, why is it that you have to decide your work/life/relationship is not important enough?
And most importantly, what is mom doing to help herself?
I think you have to be HONEST with mom and brothers and tell them plainly and clearly that you can't help anymore. There has to be other plans that don't require you giving up your life. Your brothers say no, and it's their right. You should do the same. Then, from this point, mom has to accept some other plan.
I'm trying to fathom if Mom CAN'T make her own plans for her future or WON'T. What do you think?
Is it denial, actual lack of insight or does she already have her plan (that YOU will ride in on your white horse to save her day? ie move in with her).
I suspect my folks still believe in this white horse fantasy 🦄🦄🦄. Maybe I'll write book for seniors titled 'My Daughter will do it all & other Magical Myths'.