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elaine1962 Posted February 2020

I have another update on my mom

Mom is back in the hospital. I talked to her for awhile. She is still in the ER with the same symptoms. I told her that I have to go to work tonight because we are really busy. She said that’s ok. I left a message for her primary doctor to call me back.

elaine1962 Mar 2020
Thank you disgustedtoo, I really don’t know how anybody can be legal guardian over my mother. She has her mind. It is so sharp. She said to me today isn’t it Jackie’s birthday today? Jackie is my niece through marriage. I never told her all year long it was Jackie’s birthday. Well it’s something for me to think about but hopefully I won’t have to make the decision on guardianship.

disgustedtoo Mar 2020
It really would come down to what you can handle and/or how you feel about having no say in where she lives and what becomes of any of her property. Being a guardian means a lot of responsibility. Not being guardian means the courts/guardian will take over ownership of everything - her income and all her assets/property.

I haven't done guardianship, but it can get expensive plus there are many hoops and hurdles to navigate after being appointed (reporting to the courts, etc.) So far I only have to report at year end to SS (fed pension can ask, but so far they have not), and wouldn't you know, they sent a letter questioning what I reported her pittance was used for! All SS and All the pension funds go to the cost of the facility, and these total less than half the cost)! Oh my, most people have other needs, vacations, shopping... Sure they do, but this is a 96 yo woman with dementia, almost no hearing, macular degeneration, she no longer walks on her own and has very few "needs" beyond what the facility covers! It's not like she's going to be going to Hawaii or Taiwan! That little SS wouldn't even cover rental for an appt!!!

Anyway, do take care of yourself, write your mom's number down for hubby, and wait for the "powers that be" to make the decision... Not much else you can do at this point.

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elaine1962 Mar 2020
Ok, I have one more question on this that I was hoping you all could help me with. The walls are closing in on my mother. She’s not taking anyone’s phone calls and she called my house and told my son to tell me not to stop over today. So I didn’t. But she isn’t taking anyone’s phone calls. I told her my cousin was trying to call her and she won’t pick up the phone. If they finally after all this deem her incompetent, should I be her legal guardian or have the state step in and be her legal guardian? She isn’t going anywhere unless she is deemed incompetent or court ordered. Just wanted your thoughts on guardianship if it comes down to it with my mother.

elaine1962 Mar 2020
Barbbrooklyn, yes, I chewed out my husband yesterday. I said don’t wake me up before 1pm. It can wait!!! He said she wanted your mothers phone number and he said he couldn’t remember it. When was the last time I called your mother?? He said a long time ago. I said that’s no excuse!!!!!! Don’t wake me up!!!! He promised me he wouldn’t. I reminded him of when he worked the overnight shift and he would take 2 naps before going to work!!!! He would sleep 4 hours in the morning and then another 4 hours after dinner!! He promised he wouldn’t wake me up again. Yeah, I was upset when he woke me up.

elaine1962 Mar 2020
Thank you lealonnie!! Thank you for your support. I value your opinion!! Thank you!!!

BarbBrooklyn Mar 2020
Elaine, one more thing. You need to consider your sleep sacred.

When you are asleep, your husband must tell anyone who calls that he will be handling all questions and requests as you are doing shift work and are sleeping.

There is no reason that the doc's questions couldn't have been answered by him.

Start putting YOUR health in first place.

lealonnie1 Mar 2020
Just reading the updates here Elaine..............'nice' how your mother is 'not supposed' to call 911 anymore, and should know that, since she's so very Competent. Wonder what's going to happen when she KEEPS calling 911 over & over & over again every week and going back & forth to the hospital for no good reason? Wonder if they will still consider her so very Competent after this behavior goes on for, oh, let's say another 3 months and another 12-16 visits to the ER? Great idea about getting someone to talk through all of this with you. It's all just too much.

elaine1962 Mar 2020
Thank you Needhelpwithmom and Barbbrooklyn!! It means a lot to have your support!! I value both of your opinions. I know you are both right.

NeedHelpWithMom Mar 2020
Elaine,

I am so sorry. Do go see a therapist as you plan. It definitely helps. I go. A therapist can help us see what we need to see through objective eyes.

I know you feel like crap. None of this is your fault. You know that. You have done everything humanly possible to help your mom. Hang tight.

Sending you a bazillion hugs 💗.

BarbBrooklyn Mar 2020
Elaine, NO GUILT!!!!!!!!

YOUR MOTHER (the competent one, remember) promised her doc NOT to call 911, but to call the doc.

If your mother can't follow this instruction, it may be clearer to the folks at APS that she is no longer "fine" at home.

Doc is a smart cookie!

Back off. The only way mom is going to get the care she needs is if YOU stay away.

elaine1962 Mar 2020
Thank you Savage.

Savage4147 Mar 2020
That is all u can do live. Be kind to yourself♥️🙏🏾💪🏾

elaine1962 Mar 2020
Thank you polar bear for your support!! It means a lot to me!! My husband had answered the phone when my mothers doctor called Saturday morning at 9:30am. He told her how we called APS and they said nothing can be done. The doctor told my husband and said “oh she’s going!!! She’s going into a facility!!” She asked me what her home phone number was so I gave it to her. My Mother never answered the phone. I called her Saturday afternoon and she said someone called in the morning and she didn’t answer the phone. I’m just out of sorts today because I work the overnight shift and never went to bed till 7am and then got woken up at 9:30am to talk to her doctor. Then I can’t fall back to sleep. It’s a viscous cycle. Thank you for your support and listening.

polarbear Mar 2020
Wow! The hospital sent an elderly home by herself by cab at 3 AM. OMG! They couldn't wait till morning? Or maybe it was her idea to go home at that time?

elaine - your mother's needs are beyond your ability to help. She's beyond (your) help, so you should not feel guilty for not being able to fix what you can't fix. You can only help her if and when she wants to help herself. Until then, you can't. It is sad and difficult to watch, but it's not your fault.

elaine1962 Mar 2020
I have another update on my mother. I went over to my mothers house last Thursday for a brief visit. I told her I couldn’t stay. She was trying to get me to stay. I said I had to go to work and I left. My older son texted me at work at 8pm last Thursday to tell me that when he called her the EMTs were there. I don’t know if she went to the hospital or not because I stayed at work. I didn’t hear from her at all Friday and I went to work Friday night. Her family doctor woke me up at 9:30am on Saturday and said to me “did you know your mother was in the hospital yesterday?” I said no. She wanted her phone number to call her so I gave it to her. When I called my mother Saturday afternoon I said to her “Were you in the hospital Friday?” She said yes. She went on Thursday night and was in the hospital all day Friday and then was sent home by cab at 3:00am. I knew nothing about it. Her doctor was mad because she is not suppose to call the EMTs anymore. She is suppose to call her doctor. Needless to say I am feeling guilty for not staying with my mother on Thursday. I just feel like shit all the way around. I am contacting a therapist on Monday that deals with Adult Children of Hoarders. I know I need help. She can’t be helped. But I know I need help. I have to reach out to a therapist on Monday. We also have EAP at work and have 6 free visits. I will check into that also because I feel like shit.

elaine1962 Feb 2020
Paul, thank you for your kindness and sharing. Yes, it is very hard. But I thank everyone on this aging care forum for all your help so I don’t feel alone.

paulfoel123 Feb 2020
Elaine - WOW you're doing so well putting up with this.......

On a much smaller scale, I've been there. Dad calls ambulance, then wants picking up from hospital. I too have found that hospitals/social will criticise and ASSUME they can come home with you. Nope no way.

Also, I've been the same, spoken to his GP, spoken to hospital about his "fake emeergency calls" etc. No-ones interested. Basically, he can do what he sees fit unless hes declared incompetent.

Someone mentioned reading side effects. WOW every time! He reads the leaflet 10 times then phones me, asks me if I should take, then he phones and bothers the doctor too. Convinced hes going to have the "coma" that 1 person in the world had ever taking this drug....

Im in the UK. No charge for ambulances, hospitals, doctors or anything. I sometimes wish there was. Dad is the cheapest, tightest person you could ever meet. If it cost £10 to call an ambulance he'd rather drop dead. Sometimes I wish there was a charge so he wouldnt do it.

It sucks the life out of you, yeh, Elaine....

NeedHelpWithMom Feb 2020
Elaine,

That is a great idea. Many assisted living facilities are wonderful. If you aren’t satisfied with that one, keep looking. You will find one that is suitable.

I think it is best not to tell her. Keep it between you and your brother.

elaine1962 Feb 2020
Thank you everyone for sharing your stories. My brother is coming in town this weekend and we are going for a tour at the assisted living that is 15,minutes from my house. No, she hasn’t agreed to it. I haven’t even told her my brother was going to be in town.We can’t tell her anything ahead of time. She would just obsess over it, ruminate over it, and not sleep at all over it. I don’t think she will leave her house on Saturday anyway because it’s only going to be 20 degrees outside. I told my brother to go inside and visit her and tell her the junk doesn’t bother you so she will welcome you in her house. My brother and I are going on Sunday to the assisted living WITHOUT my mother.

NeedHelpWithMom Feb 2020
Lealonnie,

Miracles do happen and I too believe in asking for the intercession of others when needed! I have done it many times and always will. I have seen miracles in my lifetime too.

lealonnie1 Feb 2020
Yes, it was by the grace of God b/c dad was catheterized at the time and NONE of the ALFs deal with that! All I kept hearing was No, Sorry, we can't help you. I came home one day & just broke down crying at my desk in front of the computer. Then I heard a DING, an email popped up in my window. It was from the ALF down the street 1 mile away...........they had an opening. True story. I called the intake coordinator immediately on the phone. I told her I was certain she wouldn't take dad b/c of his catheter, but she said they would take him SIGHT UNSEEN b/c my aunt & uncle had lived and died there previously, so he was considered 'family'! I thought my heart was going to leap out of my chest and I shouted a great big THANK you to all the deceased relatives I'd been praying to for help!!!

NeedHelpWithMom Feb 2020
Lealonnie,

Yes, any of the treatment. Rehab and home health. That’s what the head nurse told me. It’s sad.

Indeed it was by the ‘grace of God’ that you got help for your dad. That is so sad. Clearly, he needed help! I don’t get how these things operate. It certainly gets complicated and confusing.

disgustedtoo Feb 2020
Expected APS wouldn't be able to help.

"I said what about if she has her mind and is bedridden or wheelchair bound? Can I get her into a facility? Technically, no."

As I've noted, even WITH dementia, EC atty told us we CAN'T force mom to move (actually he said we can't "drag her out of the house", but I get the intent.)

We had all the paperwork (will, trust, POAs, etc, none of which give us the "right" to dictate what she does with her life), but in the end it is a person's RIGHTS that override (I have read that even guardianship can be limited - the courts want to ensure the person as much autonomy as they deem is possible!)

If something bad happens with your mom, they can't come back on you - she's considered "competent." Hopefully nothing bad will happen. If something were to happen to our mother, when she was living alone and we were aware of her cognitive issues, I am sure some person, APS or other, would be up our butts with a scope wanting to know why we didn't 'intervene'. Maybe because all this BS about "rights" is so out of control that we can't make a single move!

I'm not saying it should be a cake-walk, it shouldn't, but it is ridiculous when someone doesn't have enough sense to seek help or even tell us when they injure their leg, an injury which would have been life-threatening, and they say I have no right to determine where she lives? Thankfully we were able to fudge the move (facility said no to guardianship and told me just get her there, they'd do the rest.) YB was able to fool her with a fake letter from 'Elder Services'. We should NOT have to do this.

In your case, elaine, your hands are way more tied than ours were. But, she's been out and about, no calls to 911 (sign of relief from the EMTs?), sounds like she was pleasant enough.... Take the good times when you can!

NeedHelpWithMom Feb 2020
Elaine,

Some of these old people should do ‘energizer bunny’ commercials! LOL

lealonnie1 Feb 2020
NHWM: are you talking about rehab & insurance not paying for treatment if they don't improve? My father wasn't making the 'progress' that Medicare requires, so they kicked him out of rehab after about 10 days. Rehab has to send a report every couple of days to Medicare to chart the patient's progress with PT & OT, that's the rule. So the rehab wanted to KEEP my dad in their SNF section b/c he was not fit to be sent back to independent living! But hey, what about my MOTHER??? A problem, as always.......the story of my life, right?
Anyway, I managed *by the grace of God* to get both of them into an ALF nearby so they could remain together, in spite of my mother not liking him very much, HE adored HER, for some unknown reason.

I will never forget him waiting in the hallway for her in his wheelchair the day she moved into the ALF. The look on his face was like he had won the lottery. Makes me want to cry. And to this day, she won't even SPEAK of him; it's like he never existed after 68 yrs of marriage.

elaine1962 Feb 2020
Thank you everyone for listening to me. I went to take out her trash today and she was very chatty. She took call a bus to the grocery store, (I saw all the food) and she took the wegmans motorized scooter down the parking lot to the liquor store( I saw the bag of booze bottles) and then back to wegmans to catch call a bus. There is no stopping her or slowing her down! She hasn’t had to call 911 since last Saturday.

NeedHelpWithMom Feb 2020
Elaine,

You are so right. Even with all of the facts, they make crazy decisions only to be told by the ‘so called’ professionals that they are competent!

NeedHelpWithMom Feb 2020
Lealonnie,

It’s kind of a catch 22 system. A nurse told me that if they aren’t able to report improvement then insurance won’t pay for the treatment. So, this leaves people between a rock and a hard place. Very sad.

lealonnie1 Feb 2020
Elaine, I remember when my mother got a bridge with a few teeth for her mouth from the dentist back in 2011. I bought her some Polident and a denture bath thingy so she could soak the appliance and clean it every night. Well, she (of course) had to read every word on the POLIDENT pamphlet and say that it could POISON her so she wasn't going to use it. In business since 1958, but she was going to be the first and only case of a person being POISONED to death from a denture cleaning product.

Anyway, I am sorry to read your update today. :( It's absolutely infuriating what's going on and I feel like screaming FOR you. I don't have any brilliant advice for you, either, because let's face it, there IS no brilliant advice! The powers that be have made their decision here and that's that. Sigh.

I have a good friend who lives in NJ. Her mother lives alone, is legally blind, can't walk, is 90% deaf and refuses hearing aids, and is now in rehab after having minor surgery. Her mother is mentally competent as well........so she's praying to God they won't release her back to her own home after rehab b/c that illusion of 'independence' is just a big fat joke. Her children are breaking their backs cleaning up all of her messes at home, including fecal incontinence, so I was talking to her today about the phrase 'unsafe discharge'. Hopefully she won't run into the same nonsense you have run into. Her mother is physically falling apart, however, unlike yours.

Something is definitely broken in our system, isn't it?

disgustedtoo Feb 2020
"When they get the call they all must say “you go to her house, no I’m not going you go to her house!! They must toss a coin or pick straws."

All those who want to volunteer, take one step forward (everyone but the newest and/or clueless one takes one step back....) :-P

I had to laugh when I read your comment. I could just picture them all arguing about it, no No, I went last time, it's your turn!

My daughter works dispatch in a small town. They do get 911 calls from people who aren't all "there", been kidnapped, etc, but have to go check it out. I'm sure there are attempts at coin toss, drawing straws, etc, or if she puts the call out, how many are "busy" and don't respond back, mainly for the repeat calls...

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