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Old 07-31-2009, 09:28 PM   #1
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Caregiver Questions

To all of the caregivers, How are you managing?

Mom was dx in June. Symptoms started in April. She has paralysis in her arms, legs soon. Speech is changing, eating ok except for nausea. She requires care to bathe, eat, dress, potty, etc.. I'm her daughter and the only one local that can care for her.

We have 3 doctors notes that state to initiate Hospice care. However, she doesn't meet Hospice criteria. She is considered high functioning. Which I can't believe. She can't care for herself in any capacity. She has fallen twice in the last week. Once someone was with her, once she was alone. It took her one hour to manuever over the floor to get to the phone I left her. She called me for help. I now stay with her 24/7.

Questions
Hospice- Was it hard for you to initiate hospice? How much help has hospice been? Do different agencies provide hospice care?

Have you had to hire help? How costly can it be?

I'm basically blown away that we can't get help without paying an extrodinary amount of money that we don't have. My mom has assets that prevent state assistance. Medicare only covers hospice which we can't start yet. What can we do to get some help?

 
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Old 08-03-2009, 09:29 PM   #2
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Re: Caregiver Questions

Hi Anxiousme,

I don't have the answers to any of your questions. But maybe together and with others help on her we can find the answers.

My SIL has ALS and her dr just called in Hospice care today. She was dx in Dec 08. She has gone down hill fast. She can't walk or pull herself up any more. Her speech is just about gone. When I talked to the dr today she said that her gas/air test ( not sure what it is called) was down to 20 ( should be 120) in June. It was down from 26 just 2 months before. She is on the bipap machine. She had a feeding tube put in in April, but can eat soft food and uses ensure 5 times a day. Losing weight fast.

1. Has your mother been seen at a ALS clinic? Not sure if they have one in CA, but I hope they do. Give them a call and just ask. The Duke ALS Clinic has been the best thing that we have done. After 6 other drs. They do everything to help us. They have set everything up for us. Gotten us all the help we need.

2. Have you looked into grants from the ALS Clinic and the MDA. Call them both. This has helped us with the cost of things.

3. Can you talk to your mother's dr and find out if they can help getting her on hospice? Or how bad it need to get before hospice comes in.

When I find out what all they do I will post to let you know.

I will pray for you and your mother. Your mother is so lucky to have you to care for her.

 
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Old 08-11-2009, 10:29 AM   #3
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Re: Caregiver Questions

Hospice Care is usually requested and provided once a patient is diagnosed at having 6 months at best to live.

if they're in a hospice facility, there's people in and out of the room all day long BUT if you get hospice care at home, they only come in usually for 2-3 hours at best.

At home nursing care depends on the state. In NJ Bayaya Nursing cost us $20.00/hr. With it being higher if they come in during the nighttime or if they come in on the weekends. We only needed someone to come in for 2 -3 hour respite once a week for my sister, so she can do errands.

Sorry about the illness for you guys. My Mom died in Feb of Dementia related failures. It was a long, long battle. I had a wonderful (man) cousin who was sweet, sensitive and caring and died of ALS while in his late 30's.

You would have to use your mother's money (you say you don't have any but yet she has enough not to quality for assistance?) -- Hospice wanted us to pay up-front 30-days worth of care for our mother - $8,000.00.

We couldn't do this because we wouldn't have money for my sister to pay bills with if they took this money and we didn't understand their anger when we were willing to sign over Mom's social Security check to them.

My sister lost her job because of my mother's demanding needs, she was a wonderful caregiver to my mother for 8 years living with Mom and only on Mom's social security and my rent. But when Mom died, all we had left was a nominal amount of money and the burden of a house with all the bills, taxes, etc associated with it.

My sister has not worked for 9 years, she's 9 years older than she was when it all started. She's totally out of touch with technology as it is used in the workplace now. Computer software applications are different, etc. She's not old enough to collect on her own social security and what the amount would be would be small considering the fact that she hasn't worked for 9 years.

She has no medical insurance now either. Taking care of my mother took a toll on her own health.

When my mother got sick, we should've looked at putting her in a NH right away and then my sister probably could've gotten another job. Who knew?

CaringSister54

 
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Old 08-11-2009, 05:57 PM   #4
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Re: Caregiver Questions

We have a younger Brother (52 now) who has had the disease since 2004. While we have not had to use Hospice yet, I understand just like CaringSister54 stated, that you have to have a very small amount of time to live.....which with ALS is very hard to guess when that could be. I would recommend contacting an ALS Chapter or MDA office in your area. They helped us quite a bit in the beginning with everything. While they don't provide caregivers or assistance with care, they are full of resources and can guide you perhaps with help of some kind. My Bother had family (we all live out of state or town from where our Brother is) who took care of him in the beginning; then we all stepped in taking turns to help out. After our Brother expended every nickle he had and lost his home and any possessions, Medicaid kicked in......it was very humbling and hard for our Borther. After awhile it became clear that he really belonged in a Nursing Home (he made that decision and we supported him through that phase as it was difficult for us all, including him). The attention he needed became a 24/7 necessity and no one outside of medical people could provide him the safety he needed with eating, medications, ventilation and cleaning. He is still alive, completely paralyzed, can no longer talk (we have a machine loaned to us by MDA) which "talks" for him, he no longer eats but is nourished by a feeding tube.Everything has to be done for him. One of us visits him weekly; relatives in the area visit him daily because at this point this is what he really looks forward too. There is no way to predict when he will pass on, and while that sounds morbid, it is reality.....I say this to you. You want to spend quality time with your Mother not wearing yourself out nor making yourself ill tyring take care of her, so seek help right away. Take everything one step at a time so you don't become overwhelmed, but seek out the ALS Chapter near you for help. I wish there something on the horizon to take of this nasty disease - but so far nothing - it doesn't get the attention it deserves, no matter the population with the disease at any one time.....they are still human beings......wished they would remember that. Anyway, I too am sorry I can't offer you anymore but will keep you and your Mother in my thoughts and prayers and will pass along anything I find or hear about.

 
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Old 08-12-2009, 01:29 PM   #5
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Re: Caregiver Questions

Thank you all for your replies!

Update, my mom's status remains about the same. arm paralysis with some minimal use of her legs. Her balance is pretty off. Her speech has changed a little, though she can still talk and swallow. She is considered high functioning by hospice standards. While I can believe this, I know how horrible the final stages of ALS are. She is not there. I just can't take care of her. It is already effecting my health. I have multiple sclerosis and I'm going into an exacerbation due to the stress, emotion, and draining care. I'm absolutely going downhill myself.

Question- My mom doesn't want a ventilator to prolong her life. Will this shorten her battle with the disease? Will she get to a point where she will change her mind about a ventilator? I know it's hard to make those decisions until your faced with not breathing. I will continue to hope and pray for a merciful end. This is a brutal disease to face. So mentally challenging for all. Prayers to all that are touched by it.

 
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Old 08-13-2009, 09:48 AM   #6
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Re: Caregiver Questions

You'll probably need to get full-time nursing care for your mother either in her home or a facility because of your illness its understandable that you would not be able to do this on your own.

The ventilator will definitely prolong her life if she gets put on it. It will do her breathing for her, forcing air into her lungs. Without it, she will just suffocate to death. I guarantee when she is no longer able to breath well, she'll probably first feel panic and she may reach out in the 11th hour so to speak and ask for a ventilator. She should have had a living will/medical directive done so she can have all this down. If she doesn't want a ventilator at all and its in her written wishes, notarized, etc., then they'll just make her comfortable as she slowly stops breathing or goes into cardiac arrest from the stress on the heart during this time.


Its horrible and I am sending you my prayers.

 
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Old 08-13-2009, 08:21 PM   #7
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Re: Caregiver Questions

Thanks, she does have a trust with a medical directive which states she does not want a ventilator, etc. I just know that when you can't breathe, she may change her mind. You never know until your faced with the situation. I continue to pray for her, and me! I just hate watching a loved one suffer and no power to help. Thanks for the well wishes and reply!

 
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Old 09-30-2009, 09:15 AM   #8
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Re: Caregiver Questions

my dad dies from als in january of 2008. anyone diagonsed with ALS is entitled to federal disabilty insurance with NO waitng period. ALS is one of the few diseases that you automatically qualify for disablity. you still have to apply but dont have to go through the waiting period. good luck.

 
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Old 11-05-2009, 04:29 AM   #9
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Re: Caregiver Questions

maybe change the assets to your name..

 
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Old 11-10-2009, 12:21 PM   #10
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Re: Caregiver Questions

Is your mother over 65? We found out that if you are caring for someone over the age of 65 you might qualify for caregiver pay from a government agency. I will have to ask my wife if she remembers which agency it was. I was diagnosed in spring of 2002, and in 2005 we signed up for hospice. They sent in an aide two or three times a week to help. We were with them for 6 months, until I had pneumonia. I went in to the hospital. My weight was down to 110 lbs. It was then that I decided to get a feeding tube, and I made up my mind to fight back and survive. I began to improve and hospice dropped me. the doctor who put in the feeding tube put us in contact with a different hospice that took me for a year and a half, until medicare found out that I had improved (my weight was back up to 250, and I got dropped again. In March of 06 I was put on a ventilator when I almost suffocated from a mucous build-up. I have been stable at around 175 lbs. and I have regained the ability to swallow solid food and some water and pills. I attribute my improvement to also having been diagnosed with severe Lyme disease. I credit God with guiding us to Lyme savvy doctors. I take enzymes and natural supplements. Nutritional and de-toxifying supplements help, too. This summer I had three lung collapses, but I have bounced back from those. I am in the seventh or eighth year from my diagnosis and able to speak even though I am on the vent. I don't expect to be dying any time soon. I credit God for leading us to the information about all of this that has helped us. I recommend you take a closer look at the Lyme discussion board and find a Lyme-knowledgeable doctor close to you. It is my opinion that Lyme disease and it's co-infections that cause Lou Gehrig's disease. Lou Gehrig himself was from Connecticut, from the area which Lyme was named for. This is being typed by a volunteer who comes from my dad and mom's church to help with my email and other communications. We try to check in with the health boards every week or so. We just finished on catching up on all the email from when I was in the hospital with the lung collapses. This is the first time we have been able to get to the health boards for a while.

 
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Old 11-10-2009, 12:39 PM   #11
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Re: Caregiver Questions

To find some information on pay for giving care to your mother, google "can I get paid to provide care for my elderly parent?" Evidently this may vary state by state. Also, I wanted to say that if I had it to do over, I would have had the feeding tube and vent put in a lot sooner.

 
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Old 10-11-2011, 04:32 PM   #12
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Re: Caregiver Questions

My wife has als and I am the main caregiver. It's tough, but I told her the best thing is for her to do as much for herself as possible. It's hard for me, too. 24/7 and all that. But she pushes herself and I believe it helps us both for her to do all that she can by herself.

 
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Old 03-28-2012, 10:43 AM   #13
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Re: Caregiver Questions

My mother was diagnosed about 3 weeks ago after 6 months of her symptoms progressively getting worse. At first we thought it was a stroke but her MD wanted a neurologist to check into it further. Looking back we can see some symptoms started about 2 years ago with speech slurring and some issues with a few tumbles that at the time were explainable. My mom had a pronounced tickle in her throat starting Spring of 2011 and it increasingly got worse. A visit to an ENT showed nothing but each week she was more difficult to understand and a few friends mentioned that they thought she had a stroke. Her weight started going down Summer of 2011 and since June she has lost approx 35 pounds and is now at 68 pounds. She is a small women to start with at 4'9 but her weight loss is shocking. My mom has decided to not to any measures such as a feeding tube, breathing machine etc and was accepted into hospice. A nurse comes once a week but said it would increase if my mom gets worse. An aid comes two times a week for about 1.5 hours. I have moved into her home but do work full time and it's exhausting. My brother is taking family leave and we are taking each day as it comes. Hospice cannot give us any idea on how long we will have her with us but due to her low weight, breathing issues and decreasing desire for food I don't suspect it will be more than a few months.

The stress is incredible and at times I just break down and cry. I pray that God take my mom sooner than later and feel guilty about it but she has no quality of life, sleeps a great deal and has made a hermit out of herself as she does not want friends/neighbors to see her in this state. I worry that I won't be there when she goes and that makes me sad to think she might die alone. I almost feel paranoid about getting the disease myself.

 
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