Need all my options

[Darklilstar87]

Well my father has Als. My sister has been the current caregiver but she no longer wants to do it. A lot of issues there to be honest. She is now single and wants freedom. Well now I don't know my options. My father lives in Maine he is semi mobile and he mostly afraid of falling. He has very little range of mobility with his arms so soon will need to be fed. I own a house in Maine but live in ct and work full time. I am not sure what options I have. I would prefer he stays in his home as long as possible but my sister is ready to up and leave she now realizes the extent of what will happen and honestly doesn't care. What do I do? What options are available? Does anyone have any help? I don't want him in a nursing home they are extremely expensive.

 

[Nuts]

Your dad is going to need 24 hour care, and there's no way to predict how soon. If he's a fall risk and losing use of his arms he should not be living alone (in my humble opinion). I'm so sorry that your sister is leaving him--is she willing to share the caregiving duties at all?

Is you dad a veteran? The VA offers a LOT of help.

If not, is he in touch with the ALSA or MDA? They will provide advice and assistance.

Nursing homes are expensive, but so is 24-hour care. It's also exhausting.

You might want to spend some time reading current and older threads in this forum to get an idea of what kind of ccare your father will need.

 

[lgelb]

Star87,
Depending on where he lives, you might want to search on some of the threads where we have discussed caregiver recruitment. Universities, nursing schools, CNA programs, the local ALS associations who maintain lists, and the usual civic/neighborhood/city portals/bulletin boards/ newsletters/clubs are all places to look, as are national sites like care.com.

If he's semi-mobile and lives somewhere that people are willing to work in (and maybe even a live-in kind of arrangement, if he has the space), I don't see the point of a nursing home either. If he is in a small town and not too remote, sometimes neighbors can pitch in on a rotating basis as well.

In his current condition, no question that in-home care will be cheaper than a SNF, and that level of care isn't something he needs. And we find that people prefer care at home -- not a shock! Does he want to stay at home? There are other levels of care but sooner or later they will not work. How fast has his progression been -- how was he when he was diagnosed and how long ago was that? Are there financial resources to apply to home care or is he on Medicaid, or...?

 

[Barbie]

sorry to hear about your dad. is it just you and your sister who are possible caregivers? he is going to need help right away as he gets worse. he really can't stay by himself and that is a lot for your to t ake on. he could sell his house, move in with you or into the other house you own and the proceeds of his house sale could pay for full time caregivers. that might work. but organizing caregivers and relying on them exclusively is very difficult. you have a lot of tough decisions to make...but you also have to consider what he wants and is willing to do.

we are here for you, and feel free to talk to us anytime.

 

[poppies]

So sorry to hear about the difficult situation you are in. Nuts and Barbie gave good advice. Do some research on the older threads on this forum and on ALS related caregiving on the internet. Also find out about the organisations in his area and exactly what support they offer. Then speak to your Dad. Find out exactly where he's at financially and what care options he can afford and would prefer. These are difficult conversations. Talking about finances and particularly about the types of care he will need may be very sensitive issues for both of you, but should not be avoided. While it is a shock for you that your sister does not want to continue with your dad's care, try to understand and let it go (I don't say this lightly! Just speaking from experience.). Caring for someone with ALS involves a great deal of sacrifice and is hugely challenging. Not everyone is capable of that. Going forward you are all going to need to be there for each other, try and pull together as a family so you can come up with a plan that suits everyone. Keep in touch and ask questions along the way. You will find a great deal of wisdom and support on this forum.

 

[Darklilstar87]

Its been 3 years since he was diagnosed and at that point he wad just losing his shoulders. He will be in a wheelchair very soon. He lives in a small town and there isnt many resources around about or for als. We would prefer not to sell his house its family property and has been for many years. Neighbors helping out isnt really an option either.They arent able to be there like they would need to be. Financially he is a good possition. I know his finances so i know care in the home is an option. Its been a very tough road for us and we pulled together for everything so far but with my sister wanting to leave and move in with her now new boyfriend its been hard to. She claims she didnt realize we could lose everything if she left him. She is still living there for the time being but she wants to leave come august. I will look through the threads more and see if there is anything near his area that can help. I just dont want him in a nursing home. I know that he wont last long if he goes there. I have offered to trade off every month with my sister to take care of him until he needs someone there 24hours a day. We arent there yet but it is something that is coming soon. I would say he is in the middle stages of it but his progression has gotten a lot faster in the past 2 months. So we are also trying to get ideas and plans for the future. Thank u everyone for the suggestions and ideas. It has been very tough on him and myself. I hope for a cure one day so nobody else has to go through this horrible disease.

 

[lgelb]

From what you describe, I would start Googling for sites and posting for help! Fall is a good time to transition as schools get underway.

By threads here, I meant ideas of where to post jobs and find candidates, if you choose not to work with an agency or there is none near his home. You might find a couple of people who could trade off shifts, things like that. I outlined a lot of posting sites in my earlier post.

You don't need ALS experience so don't worry about that, but just someone willing to learn and help. CNA training is helpful but not necessary. You find someone to start with, your ad orients them, and later they can train others. One thing I didn't mention earlier is if there is a nursing home, hospital or assisted living facility nearby, you may find staff there who want to pick up more hours.

 

[GilWest]

You don't want him in a nursing home at all...

 

[lgelb]

No, not if there is any other option. Most people would rather die at home, and so they should.

Not sure how "your ad orients" got into my post -- but you know what I meant. At first, to feed someone, help clean, toilet, etc. you need a lower level of helper. Later, if someone is dealing w/ the BiPAP, feeding tube, etc. they would have to learn a bit more but they could still be at roughly the same "level."

At that point, though, if you work with an agency, you would be paying much more for people because of archaic distinctions So that's why I don't see the point of an agency for most people in your position, unless your dad has some awesome home health benefit or wealth, and a great agency.

Anyway, esp. for now, if your dad's symptoms are primarily limb onset, you should have a number of care options and should not think that you have to move him. Even if his home is off the beaten path, a lot of people are looking for jobs.

However, since you are out of state, if your sister won't be around, you might want to first identify a local care coordinator of some kind to be your part-time, on-call liaison. It sounds grandiose, but this could be a several different kinds of people. In many states, there are "health advocates," "elder care coordinators" and people like that who could serve this role. Or, a bright local person with no background at all.

 

[Mojoloco]

So sorry to hear about your situation. A lot will depend on your career and living options.
My wife was diagnosed 1/2013 with limb onset and by adapting to her needs I worked another year. At some point safety will become the primary concern. Hers was when she fell in the garage while it was 0 degrees and I was at work. You could try posting an ad at a local community college for help, especially if they offer nursing classes. She got into a county Med Assistance program that gives us a yearly budget and she is my employer and pays me to care for her. It may have income restrictions but could be an option. My heart goes out to you and hope that you find a workable solution.

 

[starente15]

So sorry to hear the struggle you have. I also try to help from a distance because I live in another state, work full time, etc. It can be so challenging not knowing what's going on, how things are progressing, what help is needed, how to get it, etc. Feel free to send me a message if you need to talk. My situation is different in that my brother lives nearby and helps out but he also has trouble dealing with it emotionally. Thankfully he hasn't checked out. It's so hard for everyone involved.

 

[MaxEidswick]

>Is you dad a veteran? The VA offers a LOT of help.

If not, is he in touch with the ALSA or MDA? They will provide advice and assistance.


important ?'s ....

 

[starente15]

Agree with Max, and if he is a vet, start the process immediately. We waited 7 months. It will probably take many additional months before we get compensation and it will be retroactive only up to 1 month before it was applied for.