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tanjak

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Friend was DX
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ca
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san diego
I've been reading these boards for awhile now, and am finally writing for some advice/input.

I have a very close family friend with bulbar ALS--I call her my second mom. She was diagnosed about 2 1/2 years ago, and has rapidly progressed over the past couple months. Within two months, she's had pneumonia twice (hospitalized once), fallen more times than I can count (cracking her head and needing stitches once). She can barely walk (hence the falling), has a PEG, lost her ability to talk a year ago, and barely has use of her hands.

Her son and new daughter-in-law moved in with her over the summer, I help as much as I can (travel a lot for work), my mother, who is elderly, helps her feed everyday. She lives in a tri-level home and is relegated to her bedroom b/c she can't make it up/downstairs without assistance, and even then with much difficulty. It's taking a big toll on everyone, especially my mother, who has medical problems of her own. The problem--my friend won't submit to professional care, either in a facility or at home. When anyone brings it up, she completely ignores it. She seems to have become more and more stubborn recently and we are at a loss. She needs round-the-clock supervision at this point but all of us work (except my mom) and aren't capable of 24/7 care. My mom has been wearing herself down and ended up in the hospital herself recently and I'm at the point where I'm getting angry because I feel like my friend is putting my mom at risk because of her stubbornness. I don't know what to do, so I was just looking for others who might be dealing with something similar. Thanks and God Bless.
 

brooksea

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tanjak,

It seems quite a few cALS go through this situation where the pALS refuses for anyone to care for them but their family or close friends.

The son and DIL should, at the very least, look into respite care or seriously look into hospice. Perhaps have the social worker at the ALS Clinic intervene (or ALS Association).

Sometimes the pALS has to be "forced" to face reality. Once that happens, relationships can be rekindled - the son can be the son once more and friends can remain friends.

I care for my mother during the week days and sometimes it is hard to handle the responsibilities of caring/cleaning/errands/appointments and still carry off the mother/daughter thing.

I know this must be very difficult for you, since it involves your mother and her health as well.

Others that have been through this type of thing may offer better solutions.
 

BethU

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Joined
May 11, 2008
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PALS
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05/2008
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Tanjak ... what a sad situation.

Is there any question of dementia in your "second mom's" condition? Denial and anger sometimes get all mixed up, and I understand that about 20% of PALS do have some dementia. Perhaps there is a social worker connected to a local care facility or hospital that your friend could talk to, or your "second mom" needs some medication for depression. Sounds like you all need to get a professional involved somehow.

Good luck
 

tanjak

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Friend was DX
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ca
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Thanks for both your responses. We've talked to her about hospice, about assisted living, about nursing care in the home. She just completely ignores it. Her son and DIL talked to her about visiting an assisted living facility close by where we can feel comfortable that she's being looked after 24/7 and the rest of us can get on a schedule to see her every day. Her DIL told me she initially agreed to go, but when they actually had a day in mind to visit, she ignored it again. My mom spoke with a social worker and the social worker came out for an evaluation, but my mom said she was useless--she didn't seem to have knowledge of ALS.

BethU--I don't believe she's experiencing dementia. Her mind seems pretty solid. I know she's on lithium and I believe another anti-depressant. I kind of feel like she's thinking if she gives in to getting professional medical assistance, she feels like that's it, it's over.

Her DIL said she and her husband went to dinner this week and told her she needed to stay put, but when they came home they found her face down on the ground, which seems to be happening more and more often.

I just want her to be able to die with dignity and not have it be because she was so stubborn and fell and cracked her head open while no one was around. She doesn't deserve that, and her son doesn't deserve to find her like that. Right now she's stuck in her bedroom all day, mostly alone. I understand leaving your home is difficult, but she'll be close to the ocean (which she loves), she'll have people around her, the people who have been avoiding visiting her b/c they are afraid of her falling, choking, etc. in their presence can feel more comfortable knowing their are professionals around to help, she'll give everyone peace of mind, etc.

It just sucks. I've had multiple family members afflicted with cancer. Some passed away, some beat it. And while it's a miserable disease to see someone go through, at least you can make an attempt to fight it; people know what it's about. With ALS, there's absolutely nothing you can do but stand by and watch it destroy someone you love. And on top of that, most people are clueless about what it is, even in the healthcare industry, so it's very isolating.

Anyways, just venting again.
 

Jeannie

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Joined
Dec 19, 2007
Messages
222
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Loved one DX
Diagnosis
01/2008
Country
US
State
NJ
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Vernon
Dear Tanjak,
I am so sorry that you are all going through this.
ALS is so devestating and you are right that most people don't understand it.
We are in the same situation with my MIL and with the bulbar onset and her inibility to speak make thinks so difficult. We are struggling to find answers to proper healthcare without bankrupting ourselves, but making sure at the same time she has the care she needs. Sometimes she can be difficult to care for. She too has falled, cracked her head open, broke her nose, and has been hospitalized for pneumonia.
Does your friend have adaquete insurance or funds to cover a nursing home facility? Maybe Hospice could come in and eveluate her and possibly she could feel more comfortable being able to stay in her own home. Most hospice agancies are very good,
I hope this works out for you all
You are in my thoughts and prayers no one deserves this
In friendship
Jeannie
 

lola64

Member
Joined
Oct 10, 2007
Messages
20
Diagnosis
06/2007
Country
CA
State
Newfoundland
City
St. John's
refusing to accept help, and unreasonable expectations!

hi there,
i just wanted to let you know you're not alone.. honestly through dealing with Dad's limb-onset 'ALS' (both parents somewhat in denial), though the illness and everything that goes with it has been brutal to deal with, it's truly my parents inability to accept the situation and the professional help it demands that has made this even 100x harder than it should be to go through.

I'm the youngest of 3. My two older brothers have distanced themselves so that they basically never have to deal with my parents and this situation (they had enough of them and their exceptional demands soon after the diagnosis). I understand, but do not agree with, how they've chosen to do this. However, it's left with my mother and I as Dad's primary caregivers, and my Mom is burning herself out, and I'm left to balance my own full time job and life (and a recently broken down relationship due to the stress of all of this), and do all the duties that nobody short of a trained professional should be doing. Talking to them about accepting hospice into their home, (let alone moving to an accessible living space, proper medical attention or living facility) has been completely impossible. I have even gone to their social worker, tried to speak with their doctors and medical team, but have hit wall after wall of people that just do not seem interested or capable or educated enough in this disease to truly understand the level of care and individual attention that it demands. Let alone the mind games that it can play on an over-stressed family member that's doubling grief with around the clock caregiving.

What concerns and angers me about these situations, is that family members are doing just that: they are burning the candle at both ends trying to take care of everything that the PALS need (God bless them)), trying to deal with their own emotions and grief with watching each (seemingly) daily progression, and then, trying to maintain 'normalcy' in their own everyday lives (balancing their own kids, jobs, relationships). How do people do this?! I am helping with everything from sleeping over and helping move him every hour of the night to helping him into the bathroom and positioning over the toilet! The hardest part is accepting help...at the same time when it is presented to them they're expectations and demands on people are way too high; but how do you get someone to accept the help that is offered for what it is? And at the same time, to go and seek the PROPER professional help that you really require? I know to a point I am enabling them to go without help by continuing to help them (go figure), but my own personal morals and love for my father really hold me to this. At the same time, I feel selfish because I am at the point in my life (28) where I just want to start my own life already, get married, have children, and I feel like I'm being cheated! I know they need to step up to the plate and make some decisions, and take control of this, but how can I get through to them to really just do it already? Two years and counting... and a trail of conflict, suffering, and pain...
what i am most concerned with currently is that my mother is truly burnt out.. she is overtired and stressed and has been raising her voice to my father (she's always been a controlling person), and I'm afraid that when I am not around, it might (if it hasn't already), lead to some kind of godawful circumstance, when he cannot defend himself. What do you do in this case? Call in a social worker?!
so no, you're not alone. I think we all go through this to a point. Good luck and all the best..
 

CindyM

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I feel bad when the situation becomes overwhelming for all concerned. One thing I read on another site is that a caregiver who balks at getting extra help may sometimes do so for the sake of the PAL, and ditto for a PAL who hates outside help- they sometimes agree for the sake of the CAL.

Different things work for different families. Fortunately we have lots of different experiences around here so maybe somebody will have an idea that you can try.
 

brooksea

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Billy-

We don't need your SPAM on this site. We've been through enough already.
 

Al

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Joined
May 25, 2004
Messages
7,960
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PALS
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10/2003
Country
CA
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On
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NW of Toronto
Billy. We don't allow advertising here. Secondly, we don't condone false hope and unproven remedies. We've seen Cayce's stuff before so there is no need for further discussion.

AL.
 
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