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Gelthling

Distinguished member
Joined
Apr 7, 2009
Messages
109
Reason
Loved one DX
Diagnosis
0/2009
Country
AUS
State
NSW
City
Sydney
I am in a bit of a pickle at the moment. On going to mum's speech path last week,they were talking to her about a PEG. Everytime they do, mum gets SOO! upset that they just say it has to be discussed, just think about it, then mum goes on her way and doesn't even acknowledge it was brought up. I believe mum is doing alot of " if we dont talk about it, it's not happening". Whilst in with the Speech Path and because mum was so upset, they asked if mum had someone to talk to, I told them she doesn't discuss anything really with any of us, just gets us to do everything for her. Mum wrote down she wanted to see a councellor on suggestion.

The councellor was going to her home today, and an hour before the lady was due to arrive, mum text me to cancel the appointment, as she no longer wants councelling, has had it before and it did squat (Years ago!). Mum seems to do this with any services we get to help her, she says yes, then before an appointment or the service starts she text's me she no longer wants it.

After today, even mum's case manager is at a loss as they are trying to put a Care package in for mum, but if she keeps refusing, everything will fall onto my shoulders. I had a discussion with mum on Monday about getting more services in as I am not coping with the three Kids and mums care, and now I'm worried that everything she agreed to on Monday, she will now turn around tomorrow and say no.

How do you ensure your loved one is safe and looked after properly if they don't want the help or is in that much denial they are not prepared to change their ways to improve their living - Mum is now in a walker and slowing down every day, have to use wheelchair when we go out as her foot movement in the left is nearly non existent - her swallowing is getting significantly worse so the speech path tells me, and she is still living at home on her own and has three falls in three weeks with the walker!

At a loss :-( - sorry to vent.
 
So sorry about your mom. It sounds as if she is definitely in denial. Saying what people want to hear until its time to make good.

First of all, you cant force anything on them. Outside help may be easier for her to start with , as it becomes impersonal . Sometimes easier to talk to a stranger.

My opinion is that the next time she agrees to see someone , do not cancel the appointment for her. And tell her so if she asks.

Ask her what she plans to do when she hurts herself and cant get up and you are not around to help her up. She "is" going to have to trust someone else going forward, and it sounds like that time in coming soon. I am walker bound myself right now, and have already been caught on the ground by myself. What a horrible feeling.

As for the venting, that is what this place is all about - communication. Keep it coming.

OK , I have wanted to ask you this for a while now. What does your nickname mean ? Is it from a movie? a Jim Henson movie ?

Glen
 
Hi Glen,

Yes, it's from the dark crystal - I used to be called this at school as I was always little - being only just over 5 ft now!

I did tell mum she would have to tell the lady herself when she got there, hoping mum would at least talk to the councellor, but mum met her at the door with a written note saying she did not want councelling. The lady said she would just come in and have a coffee and a chat - no councelling and mum refused her.

Mum has an emergency button around her neck, which last time she pushed at 1am, but my brother was in the city, and so the buttons call came through to both me and my uncle. I'm half hour away so if my uncle hadn't of gone I was going to call an ambulance.

Waiting to see what happens tomorrow as she is having an assessment done, and see what she says about all I asked. Whenever I do ask her what we are going to do if she doesnt want some services to help- she just shrugs her shoulders at me. I sometimes get the impression she thinks I will make decisions, or just organise things for her!
 
Gelthling... I totally feel for you! My PALS is my husband, but your mum and my mother sound like twins separated at birth! She has other "issues"... asthma and a bit too much of a taste for bourbon, and she was falling. My brother made arrangements for in home care.. housekeeping, physical therapy, grocery shopping... and yes... she fired every one of them before they ever set foot in her house. We ended up moving her to a very nice assisted living facility, for her own sake and ours! You do what you can for them.. but in the end, both our moms are adults, and they're gonna do what they're gonna do! Do your best.. but don't beat yourself up!
 
Very sorry you are having such difficulty with your mum. Like the others have said, she is an adult.

I've had the difficult task in the past of being quite frank with my mom about living in an assisted living facility. She was against it and fought my brother and I all the way. We had to get downright stern with her. We gave her scenarios that could truly possibly happen to her while in the shape she was in. Basically we scared her into the place and made her feel guilty. I'm glad we did, although she was extremely resentful. She got over it!

My mom doesn't have ALS, so you are in a different situation, but sometimes you have to try manipulation to keep someone safe.

Good luck dear lady! You are wonderful to be so caring!
 
Wow, That takes me back to a year ago. My Mom would do the same thing. Have me cancel apts at the last minute. I would drive all the way to her house to pick her up for physical therapy and she would still be in her pajamas. She refused everything for awhile. Even her hospital bed a few months ago. I finally just ordered it and took her old bed away and put the hospital one in. I had to get real firm with her. I would just say "This is what we are doing...." and then walk away. She is good about everthing now but it took some time. Hang in there. She will start to realize that you are working to help her. It must be an awful feeling to have to give up your independence. God Bless.
Laura
 
Just wanted to say I feel for you in this difficult "pickle" that you are in. Hopefully if you are repeatedly firm with her like you have been she will start working with you more. Unfortunatley it seems some individuals are more likely to learn from a bad fall or a near miss before they realize the magnitutde of the situation that they are in and what needs to happen next - and I can only imagine how scary that is for you. You are doing all the right things, just keep doing what you are doing.

Dana
 
role reversal always comes and to be truthfull neither of us like it and many times i felt guilty(my mom had stroke ) but i can now laugh at some things she use to do when help came, tell them i am sick was one , another one was to be pretending to be asleep i eventually caught on thou.lol i always love my mom
 
Thanks guys - I do love my mum, I just struggle more with whats happening than any one else - everyone is just continuing with their own lives and sees her once a week,where I go over quite often, and she send me the texts she sends to other people just so I know! My dad councelled me over the phone this morning and brought home a few home truths that yes I am doing all I can, but my high expectation are my expectations, and no one else is expecting me to drop everything and run to mum whenever she calls. I think dad is getting worried that I'll end up in a "rubber room" myself! I just have to learn that if mum says no to something - fine but then she has to look at the consequences - not me worrying about what could happen - I think Dana is right it may take a bad fall for her to realise why we are so worried about her safety. My case manager wants me to get Guardianship over mum and make all her decisions as the ones she is making is detrimental to her health, though my uncle says she is in denial. If it means we loose all her care services if I don't do Guardianship - then I will have to do it!
Thanks again everyone!
 
Hi' Gelthling
Sorry to here your Mums not working with you. My husband makes me feel the same way sometimes. He was sick too weeks ago so I put all his meds together for the week for him. Now he tosses his pill holder at me. I said what now its my job. I love him but it seems like little by little it is all up to me.
I guess its preparing us for the inevitable. If your Mum has fallen so many times, then I would let her Dr know you belive she is making very bad choices right in front of her. Ask the Dr to make a reconmendation about her living situation. If you have already looked into nursing home or other possiblities you might get back up from the doctor.
Changing roles with a parent is a hard thing to do. They will make you feel like crap about yourself but it is somthing we end up having to do. Some how they become the spoiled child that doen't what to hear it and acts out when you try to make decisions for them. They what to be treated like an adult but are acting like a spoiled child. Most Dr. that deal with the eldely know how people get as they age and will do what they can to help the families.
At times like these it makes a person wonder if they will ever get their life back. I have been a cargiver for the last 30 yr for one person after another but I had the support of my husband now I have become his caregiver.
 
Hi' Gelthling
Sorry to here your Mums not working with you. My husband makes me feel the same way sometimes. He was sick too weeks ago so I put all his meds together for the week for him. Now he tosses his pill holder at me. I said what now its my job. I love him but it seems like little by little it is all up to me.
I guess its preparing us for the inevitable. If your Mum has fallen so many times, then I would let her Dr know you belive she is making very bad choices right in front of her. Ask the Dr to make a reconmendation about her living situation. If you have already looked into nursing home or other possiblities you might get back up from the doctor.
Changing roles with a parent is a hard thing to do. They will make you feel like crap about yourself but it is somthing we end up having to do. Some how they become the spoiled child that doen't what to hear it and acts out when you try to make decisions for them. They what to be treated like an adult but are acting like a spoiled child. Most Dr. that deal with the eldely know how people get as they age and will do what they can to help the families.
At times like these it makes a person wonder if they will ever get their life back. I have been a cargiver for the last 30 yr for one person after another but I had the support of my husband now I have become his caregiver.
The sun is shining and the Wendy's Frosty I just ate was SOOOOOOOOO GOOD.
We can do this,
Rhonda
 
Hi Rhonda,

Mum is only 54, and was going out partying every weekend until about 8-9 months ago when she had trouble going up stairs at different venues. The dr says once she is unable to be in her home safely during the evenings then he would consider putting her into a home, my case manager says they are trying to keep her at home till near the end. If she stays in her home near the end, my brother and I would have to provide care during the nights - but my eldest will be starting school next year so early mornings will be vital at home, and my brother works 12 hours shifts so we are both a bit worried, but will not worry too much until that time gets nearer. As family say,she is still cooking for herself (I wonder if she is doing this safely though), hasn't lost any weight (she is only 49 kilos or 107.8 pounds!) so I just need to chill out and not worry about things until she actually needs help - though the case manager wants to start putting different things into place because if we wait till we actually needs things, it could take time to organise - time we may not have.

Anyway, thanks everyone for hearing/ reading me out!
 
Gelthling, My husband is just 53 and this is so hard on both of us. I understand you venting. His FVC breathing test is down to 22%. He just had a PEG put in Thursday. The surgrey about killed him. They had to keep him all night and now that he is home he's still sick and doing nothing for himself. He taps on things to get my atention then he makes weak gestures to tell me what he wants. I have to make him write it down. I have to laugh, he made a circle with two fingers then he gestured tipping his hand forward. He did this in slow motion several times. I figured he wanted something to drink but a circle how knew. I know I had an aditude when I said, "I don't know could you write it down." Go figure, milk and oreos. He can't take his pills so I'm now putting them in his peg tube but he can eat ------ Oreos. God help us I don't know how much more I can take. I mention Hospice and it is NO. I think he is seriously considering a trac. I have to work or no Ins all extra money is his very small Hardwood Flooring Buss that I am keeping afloat. We have know children and family is only around to visit. I feel so mean when we talk about a trac and I remind him he would have to go in a nusing home if he gets a trac. A person needs 24 hour care with a trac. I do understand how this Disease is not only hurting the person with ALS but the people that love them. Friends and Family don't want to here it or they would just jump in to help. Instead they call each other to see if anyone has heard anything new. We are in this alone I guess. I will look for you venting. At least we can blow off some of our frustrations here on this fourm. God be with Us. Rhonda
 
I understand you venting if I was in your position I probably would also.Thank you for sharing I hope it will remind me when I become completly dependant, at this point in time I don't want a trach because it would be to hard on my family, but who knows what I might think at a later date. Look after yourselves. Peace be with you,
 
Blackpool,
That is what my mother thought too. But I had to tell her that whe had no choice and that I was going to take care of her. Just don't dismiss a trach without hearing from your family. My Mom is not a burded on me and although at times it is difficult, I would not have it any other way. I understand that everyone canot do this but at least give them a chance.
Laura
 
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