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Firefly

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Hi everyone,

I had the contractor come out to give me a bid on remodeling my bathroom to make it wheelchair accessible. Not surprisingly, it is very costly.

I live alone and am processing all my options. I've lived in my house for 21 years and would really like to stay here. Right now, I'm fine, still mostly bulbar issues and some right hand weakness. My concern is down the road I will need assistance. I have a great support group but they can only help me with so much. I've been independent my entire life. (I don't even want to ask them for any help). But if down the road I need a higher level of care I cannot ask my friends who really are not qualified.

I would look into home care however, I have a feeling that is going to be very expensive. Unfortunately, I don't have a long term care policy, I will be on Medicare and SSDI next month.

I always said I would NEVER go into an assisted living/nursing home, but I think it would be wise to weigh all my options.

Now for the frustrating news. After I decided to keep an open mind and at least check out some care facilities, I've yet to find a care facility in my city, (which is quite large), who will even accept an AlS patient!

I contacted our ALS director, her response was.....

As far as assisted living facilities or nursing homes go- We tend not to keep a list per se as if we have not personally visited so many of the facilities. https://www.caring.com/ may have information to begin with as well as https://adrcoforegon.org/consite/index.php - here you can search by zip code for facilities.

I was taken aback by this. Not everyone has a spouse or relative who can commit to being a caregiver nor who have the funds for an in home 24 hour care giver.

I feel like I was given this god awful dx and just left out in the cold. In addition, it's very hard to make all these phone calls when you sound like your three sheets to the wind!

Any suggestions or experiences would be GREATLY appreciated.

Thank you all so much!

P.S. how the heck do PM someone? I can't seem to maneuver around this forum very well. :?
 

Atsugi

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Hi, Firefly. I'll answer your question. The system only allows users to PM once the user has achieved a certain number of posts. I think it may be 25 or 50 posts. Weird system, but I suppose there's an excellent reason for that.

In the meantime, you can message people using the Visitor Message system. You just click on that person's (blue) name, and that will take you to their profile page. Leave them a Visitor Message. They'll be notified when they log in that they have a message.
 

KimT

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Dear Firefly,

I live alone, too. I live in a condo that I remodeled a few years ago.....wish I had kept the money. My best friend in the world has stepped up to the plate to help care for me, when the time comes. We both know I will need other home health care people. It isn't a one-person job, although some CALS go it pretty much alone.

Are you a veteran? They have better benefits. Can your doctor Rx an occupational therapist who specializes in ALS. That person might have better information regarding care facilities. You need to reach out to other people (friends, family, church, etc) and take any help that is offered. Your current support team WILL BE BLESSED if they help you. They probably know much less than you do about ALS. Help them learn, take their help. Have a group meeting at your place and brainstorm solutions. I know they want to help but you have to accept their help, let them decide how they can help, and make a plan. If finances are the main problem, hold fundraisers. Your friends can organize them.
 

lgelb

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Firefly, I have a somewhat different take on this than some others. It boils down to, people do what they can and want to do. It does not take health care professionals to do most, if not all, of what you will need, which is for the most part 24/7 assistance with "activities of daily living" and BiPAP adjustments. And every health plan in the US offers access (though you have to ask a doc to write for it; they can't read your mind) to physical and occupational therapists who can come to your home and help whoever's going to take care of you get things underway, suggest/train on equipment, etc.
You might even have an RT who knows something about BiPAP.

Now is the time to talk with your friends about what's next. You want to stay in your home. Who wouldn't? But there is not much point to remodeling if you're not going to stay there. If your friends can't commit to 24/7 coverage (and you do have the right to bring this up in a non-binding way), do you have the money for help for the hours when no friend will be around? If you have the money for a SNF, it's no more on an annual basis, and possibly considerably less, to pay privately for FT coverage by aides. You might also trade out in part for housing and board.

The key is not being wedded to this archaic idea of "home health." That's agencies, big money and less control. Some CALS are leveraging it successfully, but on a long-term basis, if you're concerned about funds, it's not the most economical way to go. As you've discovered, Medicare doesn't pay for "custodial care," though it will pay for a sort of support system via a home health agency and hospice if you go that route.

If you really want to find a SNF, it is probably possible. The ALSA and that lot often knows the least of anyone in the region, so I wouldn't stop there. Talk to the social workers and discharge planners at the TBI/SCI/VA clinics nearby. Do some Googling. Sometimes, as here, AIDS-focused facilities will accept ALS as well. But, as you can tell, I have a strong bias toward death at home and I believe that most people can have it. So I would start with that premise and see how far it takes you.

Best,
Laurie
 

Jeanau

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I feel stupid Laurie...but what is SNF? thanks,
Audrey
 

Buckhorn

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Firefly, you bring up very real concerns, and I can imagine it is daunting. That said, you seem determined and at the same time realistic. I say this because you seem to want to look at all options, and I think that is wise. I also think you should only do the home renovations if you are absolutely certain you are going to stay there until the end. With a support network of very good friends who are willing to learn as they go along and are not timid about what ALS entails, this could be done. But, as Laurie has stated, you need to find out if your friends are up for that challenge. You could appoint a best friend or close family member to be your durable power of attorney (and have an advanced directive in place). That way, when this appointed person believes that you need to be on home hospice that can be arranged. I think (but am not certain) that once you are on hospice you become qualified for more in home services. And, many people think that hospice is just for "the very end". It is not.

Have you been to (and are you going) to a ALC clinic day? Again, as Laurie mentions, the doctor will very willingly write an order for a PT &/or OT to come assess your home and accessibility needs, and provide family training (or friend training) on body mechanics, back protection techniques for your caregiver(s), use of equipment, etc.

My husband was just diagnosed this past December. He has spent 31 years planting our gardens and tending to a large parcel of land, but he LOVES it! I originally thought there was NO WAY we could stay in our home (lots of steps, uneven terrain outside, long, steep driveway, etc.) and I panicked. Now, having months to consider this and offers of help from my neighbors, I think we can make it work here. Plus, I just can't bear the idea of tearing my sweetie away from the home he has loved for so long. Eventhough I am a PTA with many years experience, I am having an OT come in to assess our house. Our bathroom may need to be remodeled, and my neighbor is going to build several ramps for us. As time passes and we find it's just too hard to continue to live here, we'll figure it out.

There are less expensive care giver agencies out there. They vary with your locale, but basically they provide someone to help with your ADL's, maybe make a meal, do a load of laundry, get your pills out, etc. They also have some that just stay overnight with you. These individuals are not nurses or even CNA's (certified nursing asst.). But they go thru training. My older sister started doing this about 2 years ago at age 64, and she never had any medical training in her life. She is unable to lift heavy, but she has a kind heart and is very reliable, so her patients love her. I think you could find someone like that too.

Mike, if you're reading, I have something like 72 posts now and I still can't PM. I can't edit or use attachments either. I looked under the user CP on the upper left and went thru the whole list. Maybe I just don't know where to find the PM button?!
 

Buckhorn

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Just incase it takes Laurie a while to respond, SNF is an acronym for "skilled nursing facility". And no reason to feel stupid Jeanu; I'm sure there are others out there who are glad you asked that question!
 

Buckhorn

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Just found these Firefly, and since I can't PM, I'll paste the links and we will see if that is deemed inappropriate. If the links are removed, then look for care giver action (.org) and National Association for Home Care and Hospice (.org). I did not spend a great deal of time looking at either, but they look promising during a cursory glimpse.


Caregiver Action Network

National Association for Home Care & Hospice Agency Locator
 

lgelb

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Yes, thanks Audrey & Buckhorn for clarifying. I do not think working with an agency is necessary; we never did; but we worked with students individually, e.g. posting on campus portals, for part-time assistance. But in some areas, agencies may be a better option.

Most of our helpers were CNAs but not all. It is just a 6-week course and nothing magical that cannot be learned on the job. As BT points out, it's the heart that comes first. We were not looking for housework help but for ROM exercise, massage, showering, transfers, feeding. Those obviously are some of the things that you would need help with if living alone.
 

Firefly

Active member
Joined
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Messages
47
Reason
PALS
Diagnosis
12/2015
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Or
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Portland
Thank you so much for all the answers, insights and wisdom. I don't know what I would do without this forum.

This dx has thrown me for a loop. Every day I wake up thinking it was just a bad dream, but no such luck.

Anxiety levels appear to be escalating. I know my doctor would prescribe some kind of benzodiazapem but I just don't want to go down that route yet. So I continue to white knuckle it. The Zoloft helps but I'm afraid this anxiety is larger than the diagnosis.

Thank you again for responding to my post. I really appreciate it.
 

Firefly

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Joined
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Messages
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PALS
Diagnosis
12/2015
Country
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Or
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Hi Kim,
Thank you so much for your response.
It gives me hope to know living alone with this is doable.
Did you have to remodel your bathroom? What did you mean when you said you wished you had kept the money?
I really liked your suggestion about the group meeting.
That's really a great idea! Plus a good excuse to have a little party! :)

Thank you again.
Take good care
 

Mlock

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Joined
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Messages
64
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PALS
Diagnosis
12/2015
Country
US
State
AL
City
huntsville
Dear Firefly: I live alone and just had my bath remodeled and a lift put in to help me in and out of the house. Right now, I am glad I did as it gives me more independence. I had a fall in my old bathroom which scared me. I am mostly in wheelchair and I do value what independence I have. Wendy
 

KimT

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I remodeled before i was diagnosed. Simple remodel only I did it up fancy with all new appliances, new cabinets, two new bathrooms. My shower in the master is big (5 x 4) but none of it is accessible because of small doorways. Now I'm faced with remodeling again, moving to a friend's house and remodeling that or going into an assisted living facility.
 
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