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mndireland

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May 17, 2008
Messages
123
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Loved one DX
Diagnosis
10/2007
Country
IE
State
Ireland
City
Dublin
My mam was diagnosed oct'07, she has progressed fast, her hands are really weak and not much use, but the main difficulty is on the breathing. She uses the bi-pap during the day and sleeps with it on during the day, she will not use it at night as she thinks she may suffocate or die somehow on it, and with me being in the room next door will not hear her and she may die alone, this is a fear, and nowadays I dont try to convince her anymore. We just use it when shes comfortable during the day which is fine.

The problem now is that I work 18hours a week, 6hrs 3 days a week and I enjoy the time away, I am here all the rest of the week, apart from the odd weekend. My 2 sisters live locally, one comes over twice a week and the other once a week. But now they say that ive left her too much (the one weekend a month when i visit my 3yr boyfriend in the uk, he's here every other weekend)

We are stuck 1 day a week for 6hours when I go to work, her friends usually come down but its not reliable, anyway now my sisters have decided that they would rather pay for a new full time carer that will be here all the time. Obviously that does not include evenings and weekends, so that would still be up to me! But my mam doesnt want a stranger and has insisted this since day one, the thing is Im happy with me being carer and so is my mam. They spent two bad days with her while I was in the Uk and this is the outcome! Im so frustrated by this. I have decided to ignore what they want this time, and I will continue to care for my mam as this is what we both want, its not about the money, she only has a matter of months left and I dont want to be working 5 days a week when I can be here, bringing her out to the shops etc.

Just really needed to vent a little, and am looking at other threads where there are sisters helping, and working together, but my family seems to be ripping apart. I never feel like i can tell them when im down or stressed or need more help as they just say I told you so, and we need someone else! Its soo annoying..... I would rather give up my few hours work than do something which my mam really doesnt want! Why cant they think the same?
 

joelc

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Joined
Jul 15, 2006
Messages
2,786
Reason
PALS
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09/2005
Country
CA
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BC
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Abbotsford
I really feel for you and the situation you find yourself in.

You have the right attitude and are doing the right thing!

Trust your heart.

God Bless!
 

brooksea

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sounds to me like they are the ones that don't want to be bothered with the time they have to spend caring for your Mam!

Stick to your guns. Perhaps if they want to pay for the someone when you are away, then that would be a compromise. But if you and your Mam are happy the way things are, then I would ignore the sisters...IMHO
 

hopingforthebest

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Joined
Feb 20, 2007
Messages
355
Diagnosis
02/2007
Country
US
State
NJ
City
Mays Landing
I guess people's true colors show when things get tough. Your siblings are thinking of themselves, not of your mother. I too leave my husband 3 full days a week to work and other days are with him 24 hrs. a day. I only have sons so they visit often, help when I need "man fixing things" done. Hospice has been wonderful for my husband's personal care issues and my husband has adjusted wonderfully to them. He sees that it gives me time to tend to other needs, cooking, cleaning, etc.

Don't know what services are provided to you but certainly get some help in any area that gives you, as caregiver, a break. Try to talk with your siblings and if that doesn't work, forget it, and you and your mother decide on a plan. Sounds like the two of you have a great relationship and are a good team.

Patty:-D
 

Peg B

Distinguished member
Joined
Nov 5, 2006
Messages
414
Reason
PALS
Diagnosis
10/2006
Country
US
State
Michigan
City
Flint
Dear mndireland,

I wish you the best with this. It would be easier for your sisters, but NOT for you to have a full time person. So do what is best for you. They need to decide what is best for them, NOT for you.

I remember my sister did not like my mom's Dr. so we set out to find a new Dr. We got to the new doc's place which was a good 1/2 hour by car further than her old Doc. It occurred to me he would need all the information and my mom would have to be checked by a stranger. She had Parkinson Disease which caused severe dementia and she also had cancer. We were trying to please my sister by finding a new doc. She was the oldest sister and my mom wanted to please her too. But it dawned on me we were doing it for my sister, not me or my mom and the effort only involved us. I cancelled the appointment and we left and I called my sister and told her. My mom and I laughed at the dumb idea of trying to please her for no apparent reason and we went home and kept her doc. My sister was fine with it.

I think we were following old patterns of behavior. Even though I was well into my 40's, I was the third oldest sister and pretty much did as I was told. So even though I saw my mom the most, 4 nights a week and took care of all the doctor stuff, I was still under the old ways of my sister knowing best. It was me more than her that kept that going.

I also wanted my mom to move in with me, but my sisters didn't. They wanted to keep her independent as possible or they, I think, felt guilty they did not want to take her in even though the two oldest both had big houses and lots of room but it really would not have worked for them and their families. But it would have been OK for my family. In fact it would have been easier. I finally made a compromise for my mom to move in to our two bedroom apartment with my husband and our two daughters on the weekends. Two days after we got the hospital bed from hospice in our apartment, my mom got out of her bed at her retirement place and her leg broke from the cancer. She moved in with me full time on Nov 10 and died on Nov 30. We never got to do the weekend plan. I wish sometimes we would have moved her in sooner.

Do what you need to do to take care of her and you. Let your sisters take care of themselves. Speak to your mom about part time care and see if Hospice can help you. Best Wishes and God bless you all. Sincerely, Peg B
 

CindyM

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Joined
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3,543
Reason
Learn about ALS
Country
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State
New England
City
Anytown
Peg and Patty and CJ are right. It is all about your Mam right now. Her wishes rule.
 

mndireland

Distinguished member
Joined
May 17, 2008
Messages
123
Reason
Loved one DX
Diagnosis
10/2007
Country
IE
State
Ireland
City
Dublin
Well we had a doctors appointment today and we all went, (first time they've ever gone) I think whats happening is they are trying to be seen to be doing something now these days, as everybody is telling them that my mum doesnt look well or seem well and is she ok and they are feeling it so in this sense by going to the appointments, and getting extra help its helping them feel better, like they are helping.
Anyway my mam told them straight out today that no more strangers were coming into her home, the homehelp that we get, just 3 hours a week is enough, and she doesnt want anyone else.
When we went into see the doctor however (the neurologist) she said my mam didnt look well today and she was worried about her, I told her some days she doesnt want to eat at all and its a struggle eating for her most of the time, so they are taking her into hospital tommorow, she wants to put a camera down as she thinks there may be a blockage, or problems with her stomach. The doctor wouldnt listen to my sister when she was asking for more care, more concerned about getting her in to take a proper look.
In a way im glad, it keeps them quiet for a while, and for some strange reason I always feel more relaxed when she goes in, after just a few days she looks and feels better and always comes home with a new device that helps (bi pap etc)

So in a way today was ok, not the horror day I was anticipating. Hopefully they will know why she can never eat and feels sick a lot.....
By the way she said her fvc is 33%, Is this bad, on looking over the web it doesnt look good?
 
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