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mrstadpole

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Sep 12, 2007
Messages
26
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Loved one DX
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US
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California
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Cathderal City
Hi everyone!

My dad was diagnosed last October and has progressed very quickly. He is now using a walker all the time, has a brace for his right leg, cannot speak and is losing the use of his left arm. He chokes constantly and is getting closer to finally scheduling the surgery for a feeding tube. Anyway.. I just received a very disturbing email from him explaining that he is going to talk to his Case Manager (for MDA) about being moved to a "home" rather than staying in the house he currently lives in with the woman who is getting paid $1600 a month from the government to take care of him (she's a "professional/certified caregiver). I learned that the reason he wants to do this is because she is only bathing him once a week, doesn't take him to his regular doctor (she has decided that he can see someone closer to home), doesn't help him run any of his arrands or help to get him out of the house.. only on Sunday.. to go to church. He said she makes his dinner for him a week at a time so he can heat it up in the microwave (if he can manage to make it across the house), so he doesn't eat half the time because it's too much effort. Which means he is losing too much weight and the doctors are even more worried about him. On top of all of this.. She works a full time job and isn't even home Monday - Friday, 9am -5pm AND she charges my dad $400 a month rent.. he only gets $900 from SDI. Did I miss something or does this just seem like someone taking advantage of him?

I am seriously considering rearranging my life so he can come live with my family. Am I crazy for thinking this? I don't know if I can handle it.. I mean, the emotional challange is what I am afraid of. I know I would have to learn to do so many things to take care of him.. but I can't accept the fact that this woman.. who, mind you, he has been friends with since before his diagnosed, is doing this to him. There are no other family members to take care of him. Our family's story isn't a pretty one.. but there really is just my family left to make sure the last days that he has are the best he's ever had.. what do I do? Please.. am I nuts? Can I do it? Do I need to be certified? I would still have to work full time to support my family.. but if I was receiving funds for now being his caregiver, couldn't I hire a nurse to come into my home a few hours a day to help?

I'm sorry for all the questions and the rambling.. my wheels are spinning and I didn't know where else to go. Remember Star Wars? Yeah, well... "help me, Obi Wan Kanobie.. you're my only hope!"

Thanks, much!

Kari
 

brooksea

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Sep 27, 2006
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Yes Kari, it does sound like this woman may be taking advantage of your Father. I'm so very sorry.

If we knew where your father was located, perhaps more members could help you out with a suggestion.

It amazes me that people can stoop so low.........!
 

mrstadpole

Member
Joined
Sep 12, 2007
Messages
26
Reason
Loved one DX
Country
US
State
California
City
Cathderal City
Hi CJ:

Thanks. My dad is currently in Victorville, CA and I am in Palm Springs, CA. Having him closer would be wonderful.. but, if he has to stay out there, that is ok, too.. just as long as he is being taken care of.
 

CindyM

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Hi Kari- I'm frustrated for you that you have the worry of your Dad's MND and on top of it, this family "friend" is adding to you concerns, not doing her job of caring for your Dad!

People usually would rather stay home under any conditions than go to a home, so if dad is asking for a home he really needs relief! I know California is a big state and you might be far away, but if at all possible I'd drop in unexpectedly as soon as possible. Just go and don't tell Dad, so you can see for yourself how he lives and how he is cared for.

I hope your worst faars are not confirmed. If they are, you have a lot of decisions to make but we will be here every step of the way, I assure you! good luck. Cindy
 

PamB

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Medina
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991 Bayberry Dr
I am sorry to hear about your dad

I went to take care of my sister for six months out of the last year. I left my family and went a 1000 miles away. I don't regret it but I got so burt out and got ill, and I became no help to her. So we had to hire someone to live with her. It has worked out well in our case. There are many different agencies to help you. I would suggest that you call hospice or Home visiting Nurse Assc. near where your dad lives and see if they have a list that you can work from. I would also, check and ask if they are bonded. two twelve hour shifts works best because of burn out and you have two people checking on each other. You have to also make sure friends can drop in often just to check on the emotional temp of your dad. We have had many people just drop by so we can get candid time checks, even late into the evening. I would also see if Hospice can help. You do not have to be in the last stages to have them help. We have had 4 hours of help 7 days a week for several months. There policy is that the disease has to be progressing forward. Most people in the USA only use them on average of 14 days, in other countrys they use them months even years. We have had their help for at least 11 months. Even when my sister went to California to visit her daughter and back to Conn, so it is even possible to transfer services. There is alot of help. I am back home right now and will be going back to care for her at the end very soon. I would advise, to see what kind of help you can get, it is terribly frustrating to be far away and only phone calls that ask what can be done with this or that, or you hear from others what should be done, and you want to help and fix everything. My advice is take care of yourself, take a deep breath, and really consider what you are going to do. It is very hard to leave your family, my children were in college and on their own, but leaving your husband, I was lucky if I could talk to him 10 min a day because I was so busy or just so tired. Good luck with your decision. You are a good and caring daughter, I am sure your dad is very proud and knows how much you love him. God Bless
 

califsand

Distinguished member
Joined
Sep 21, 2007
Messages
237
Diagnosis
01/2004
Country
US
State
ca
City
sant barbara
There is a lot to think about and there ARE lots of resources in CA. I live in CA as well and ended up moving my father in with me. I have hard times with it, especially lately because he showed improvement and Hospice released him. However, the money that the state provides is regular and can provide you with enough money to hire a caregiver or be home with him yourself. Nurses are VERY expensive and the best way to get that type of help is from Hospice. They do not charge and they will send a bath nurse by every other day or even every day if needed. If you DO need to hire someone you can advertise for a caregiver, there are a lot of good people out there who have experience but are not licensed nurses, so they do not charge nurse rates. I found someone wonderful who had cared for her terminally ill husband and has TONS of experience.

Calling your local Hospice office would be a great start in determining how you should proceed.
 

mrstadpole

Member
Joined
Sep 12, 2007
Messages
26
Reason
Loved one DX
Country
US
State
California
City
Cathderal City
Califsand:

Sorry it has taken me so long to reply... it's been crazy for us out here. Thank you for your helpful nudge in the right direction. We are still trying to work out all the issues that my dad is having. I am waiting for a call or email from his Case Manager so she can explain to me a little better what our options are. I am uncertain as to how the state funding works. I know that his current caregiver receives $1600 a month.. but would I? I am not licensed or anything.. but it sure would help because I have already looked into having someone come to our home a few times a week. My dad now has what I call "short timers syndrom".. LOL.. he is SOOOO ready to get the heck out of where he is that he can't stand it anymore.. kind of like when you give your 2 weeks notice at your job. LOL! Anyhoo.. thanks, again.. and I'll keep you posted.. hopefully we'll have some resolution before the holidays!
 

CindyM

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Best of luck mrstadpole. We might be able to help with some on-line research. Just give a shout if you need us! Cindy
 

mrstadpole

Member
Joined
Sep 12, 2007
Messages
26
Reason
Loved one DX
Country
US
State
California
City
Cathderal City
On-line help

Cindy:

I would greatly appreciate any and all info you might have. Thanks a bunch!
 

califsand

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

Sorry it has taken me so long to reply... it's been crazy for us out here. Thank you for your helpful nudge in the right direction. We are still trying to work out all the issues that my dad is having. I am waiting for a call or email from his Case Manager so she can explain to me a little better what our options are. I am uncertain as to how the state funding works. I know that his current caregiver receives $1600 a month.. but would I? I am not licensed or anything.. but it sure would help because I have already looked into having someone come to our home a few times a week. My dad now has what I call "short timers syndrom".. LOL.. he is SOOOO ready to get the heck out of where he is that he can't stand it anymore.. kind of like when you give your 2 weeks notice at your job. LOL! Anyhoo.. thanks, again.. and I'll keep you posted.. hopefully we'll have some resolution before the holidays!

Me again... the money comes from a state run program and I think it is a division of medi-care/cal. They pay $10 an hour, to you or a caregiver, regardless of experience. They sent out a social worker to evaluate your fathers needs and then allot a certain amount of hours per day that they will pay for. The max is like 7.8 hours per day. Then they multiply those hours by every day in the month (yes, 7 days per week) and give you a monthly total. You can use those hours to pay yourself or to pay a caregiver, or divide them between yourself and a caregiver, whatever you want. They pay you those hours each month. It DOES help and if he gets the max it is about $2300 per month before taxes. These are resources that should all be granted VERY quickly, especially since your father has ALS. Because of the unpredictability of the disease, he should also be able to get disability money each month where the regular waiting period of 2 years is waived. If you are having ANY trouble getting these resources, contact either your local MDA office or an ALS rep, they will advocate for you and make it happen really fast.

This is all info based on my own personal experiences with my father over the past 3-4 years. There really is a lot of help available and it's easier to get than it seems.

Take care,

Sandy
 

mrstadpole

Member
Joined
Sep 12, 2007
Messages
26
Reason
Loved one DX
Country
US
State
California
City
Cathderal City
Hello Sandy:

What you just explained is what my dad has been telling me. Only he said that the woman who is taking care of him is receiving $1600 form the State. I am waiting for a call from his ALS Case Manager, so we can go over everything. Hopefully, she calls me today.. I'm going nuts! I have never spoken to her before and have no idea what I am in for. I just want to get him where he needs to be.. at this point, I don't care if it's with me or in a good facility... he just needs a change. I just learned that my dad's legs gave out on him the other day and he spent over 30 minutes trying to pull himself on to the bed... things seem to have progressed really fast in this past year... I personally feel he needs someone with him all day to make sure things like this don't happen.. So, I guess it's really up to his Case Manager to make the decision, right? He is receiving Social Security because he already ran out of his disability money.. he was out of work long before they finally diagnosed him.. his timeline shows that he's had the disease for at least 2 years now.
 

califsand

Distinguished member
Joined
Sep 21, 2007
Messages
237
Diagnosis
01/2004
Country
US
State
ca
City
sant barbara
Hi, that's where we were with my dad. He was falling and taking 10 minutes to an hour to get himself up. We got him a life alert necklace and if he fell, they could call the fire dept to go pick him up. It's pretty cheap to get that but if he needs 24 hour care it's time to make that happen. The money that the state gives is pretty reliable, and that caregiver may get 1600 depending on how many dependents she claims. I think that this is a state program, not city, so if you get the max hours it should be consistent with what I get for my father being here.

You can contact the case manager for advise but it's up to you and your father what to do. If your Dad doesn't have a living will or an agent for his last wishes, this would be a good time to discuss it. If he names you as his agent, you will be responsible for making decisions for his care. This is especially important for later on when he isn't able to communicate well, you will want to know what he wants to have done, in all circumstances.

There is a ton of support and if your father is cooperative with moving in with you and allowing that extra help, it may be a great option. I think that attitude of the ALS patient may be the most important factor in making that choice. My father is often very difficult to deal with, he gets really mad and has tantrums... not many people can handle him and that is why he lives with me right now.

Good luck, stay strong and be assertive with these guys okay? THey truly are there to help!
 
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