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burnett2112

New member
Joined
Aug 17, 2008
Messages
2
Reason
CALS
Diagnosis
07/2008
Country
US
State
PA
City
Lancaster
How odd to find myself on this website, yet here I am, getting ready to pour it out.
Last August, my husband and I lost our 5 month old baby, Ryan to Sudden Infant death Syndrome. What are the odds?
Two calender months later, a wire sparked a massive house fire and demolished our house. We had no insurance. What are the odds?
Two weeks ago, my father (who lives with us) was diagnosed with ALS.
What are the odds?

HE has lost the use of his right arm, starting to cramp in his left, leg cramps at night, and his skin is popping all over both arms, upper chest and down to his legs. He has stumbled a few times, but has not fallen. He still drives, although I know he shouldn't. A car accident would just be such a better ending then what we are facing ahead of us. He independantly eats, though it takes him an hour and a half to complete a meal.

I have 4 other (surviving) children and am pregnant again. (on purpose). Being a primary caregiver is an honor, although I am scared to death at what lies ahead.
I really wish the doctors at Hershey Medical Center could give us a time frame on my dads life.

SO my questionis:
What happens next?
ANd furthermore, how in the world, after our series of unfortunate events, can we afford an ALS patient in our home while we are still trying to replace all we lost from our housefire? I am scared, uncertain and confused.

Any ideas?
 

hopingforthebest

Distinguished member
Joined
Feb 20, 2007
Messages
355
Diagnosis
02/2007
Country
US
State
NJ
City
Mays Landing
Dear Burnett

I am so sorry for the loss of your sweet baby. There is nothing, speaking as a mother, as bad in life as burying your child. Please know that your grief is unable to comprehend.

My husband now has no use of his arms/hands at all. My children are grown men and I care for my grand children when I can and they give us such joy beyond words. But I could not care for them on a regular basis and care for my husband at the same time. You will need help for your Dad. ALS, in my opinion, is the worst disease because we have no cure or treatment. Each time I enter a store and they are collecting for ALS I am proud to donate but want to shout to everyone that we live with ALS! I cry alot when by myself and of course cry with my husband when he cries.

Reach out to the ALS association in your area, to your Dad's ALS clinic. Let the mental health coordinator/nurse know what is going on with "your" life. They have help for you.

Tonight you will be in my prayers for strength and courage. In my opinion, you have both already. God is getting you through day by day with all that has already happened in your life.

Bless you, your family and your Dad,

Patty
 

califsand

Distinguished member
Joined
Sep 21, 2007
Messages
237
Diagnosis
01/2004
Country
US
State
ca
City
sant barbara
So much tragedy in such a short amount of time! It is hard to cope with just one of these situations and you have taken on a lot with the upcoming baby and your father's diagnosis. I'm very sorry and hope that you will find strength in this support group for the upcoming trials.

ALS is unpredictable and if you do some browsing you will see that some PALS progress very quickly while others, like my father, progress more slowly. Being the primary caregiver IS a priveledge but at the same time, it is a huge undertaking as the illness progresses. It is physically, emotionally and mentally challenging while also becoming more and more time consuming. Being pregnant brings different challenges than many of us have gone through. I could not have been the caregiver for my father if I had been pregnant because of how hands on I had to be with his care. Unfortunately he would fall and I had to pick him up or try to catch him or let him lean on me. I had a constant backache for two years. This type of physical help could endanger a pregnancy.

There are tons of resources for people with ALS, especially for those that do not have insurance. Having an ALS diagnosis will make it so your father is automatically eligible for disability and state medical insurance as long as he qualifies otherwise. I would not delay in getting those set up. He also would be eligible for free in home care through Visiting Nurses and through Hospice as well, as the need arises. There are other resources through the ALSA and MDA, all easily found online. The best thing I could suggest is to line up resources now. There are also state funded programs, usually called C.A.R.E. that provide income for family members who provide care... money that can be used to pay for someone to come in and help as well. If you want help researching local agencies, please let me know and I will work on it.

Take care!

Sandy
 

burnett2112

New member
Joined
Aug 17, 2008
Messages
2
Reason
CALS
Diagnosis
07/2008
Country
US
State
PA
City
Lancaster
Hi Sandy,
I would love to know how and where to find help in the income area. I cannot work with my dad being sick. If he falls,. there would be noone to help him up. He cannot cook either. So its kind of the same as cooking for the other 4 kids that I already have, yet a little different.
We have just been socked with so very much financial devestation, and I am concerned as to whether or not I can actually do this myself.
Thanks for your response.
Patty
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Hello Burnett- welcome to the forum. I really don't know what else to say except that we can help with the ALS issues. Folks around here are very supportive and quite knowledgeable. I wish you well...Cindy
 

califsand

Distinguished member
Joined
Sep 21, 2007
Messages
237
Diagnosis
01/2004
Country
US
State
ca
City
sant barbara
Good morning Patty,

The first thing that I would look into is seeing if your Dad is eligible for disability. If so, he should apply immediately and contact the ALSA to help smooth and speed up the process. They can actually call on your behalf & help facilitate things. Here is a link that discusses eligibility in your state:

http://www.dli.state.pa.us/landi/cwp/view.asp?a=148&Q=52076

I live in California and the resources vary from state to state. For me to get paid to provide care to my father we had to be referred by Hospice to a state funded program called C.A.R.E. and because my father was on disability and medical, he was eligible. When they came in Dad could still walk with a walker but had a feeding tube and needed help with toileting and was having falls. The worker assessed that he required someone with him at all times and gave me their maximum benefit, which was approximately 86 hours per week of pay. It looks like your state may do things differently so eligibility could be very different as well. Is your Dad using home Hospice care? If he is open to someone coming in so you could take a break (to leave, shower or nap) it could be a good time to start using them to reduce your stress level.

Don't laugh but have you thought about applying for the Extreme Makeover Home Edition? Your story is the kind that they lean towards and your father's illness being so unpredictable could get their quick attention. One of the great things about the show is how they garner local attention to the situation that a homeowner is in and they have easy access to countless resources that help solve long term problems.

A couple of valuable links where you can find help with supplies and support:

http://www.als-mda.org/

http://www.alsa.org/ - If you look on here under the caregivers section there is a link to resources that may be valuable.

Good luck with everything, please keep us posted. If I spot anything else that is helpful I will let you know.

Sandy
 
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Icanmanz

Senior member
Joined
Jul 14, 2007
Messages
947
Reason
PALS
Country
Uni
State
Texas
City
Tomball
Hi Burnett! Sorry.........I meant to reply to your post the other night, but I have been on this Roller Coaster ride again! I am so sorry to hear about all the tragedies in your family. May God bless each one of you, and may your loved ones rest in peace. You and your family are in my prayers!

Irma
 
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