Assisted Living in Northern Virginia

[alligatorswamp]

Hi Everyone,

My mom was diagnosed with ALS on September 29, 2014. It's moving very fast - she now (very slowly) uses a walker, needs help dressing, toileting, bathing and eating (cutting up food). We just got her a wheelchair for outings that require us to walk more than a half a block or cross the street. Her speech is extremely labored and strangers have an incredibly difficult time understanding her and understanding that she's fine in the mind. She's 65, by the way.

My sister and I can understand her just fine most of the time because we know her. She's always been very particular about her wants and needs but my sister and I can handle this because, yet again, we know her so well and can predict what she's going to say.

Problem is, I am 24 (25 in April) and my sister is 26. I have a full time job, but I can work from home, and my sister will be starting a part time job in January. Mom, my sister and I have decided it's not a good idea for the two of us to take care of her, because we need to have our own lives and can't emotionally handle the full time caregiver roles. She also wants to someone else to take the caregiver role so the time we spend with her is more special.

We have looked at a few assisted living places in Northern Virginia and are not having much luck.

Here are a few requirements:
- Mom can bring her own bed
- Feeding tube is ok (she will need one in a few months)
- My sister and I can stay overnight sometimes
- Easy transition to a nursing home, preferably connected to the assisted living facility
- 1 bedroom

Essentially, we want an accessible apartment with a community and 24/7 service. Does this exist? Does anyone have any suggestions for assisted living facilities in Northern Virginia?

Thank you so much for your help! These forums are incredibly helpful already!

 

[gooseberry]

I would contact a.realtor or.google.assisted living and your town.

 

[Nikki J]

I suspect feeding tube disqualifies her from assisted living unless the facility does not need to take any responsibility for it. At least in my area in the Northeast the assisted living people would not accept that. Call a couple randomly and check in case it is different there

 

[lgelb]

Gator,
I don't want to be a downer, but I will be.

If she has fast progression, there is really no point in moving into AL. That level of care will soon dwarf what she needs, what with Hoyer lift transfers on the horizon and help with all ADLs (toileting, bathing, dressing, feeding, etc.). 24/7 service is a catchword for, someone will show up if she calls in extremis, but as you know, AL doesn't have the staff to help on an hour-by-hour basis. As for moving into a SNF, I think some CALS here will affirm that many SNF staff are not quadriplegic, let alone ALS-savvy. And in an understaffed setting, it's often about protocols and time targets, not going the extra mile, unless you are talking really high-end.

May I ask if you considered hiring a full-time live-in caregiver to be with her in her or someone else's home? That would be much less expensive and likely more comfortable for her.

 

[krnNdug]

I would also contact the local ALSA for advice. They probably know the local resources better then most.

 

[affected]

I'm afraid I have to agree. If she is rapid progression you are going to be racing to keep up and she will very soon be high care. I also agree that nursing homes usually just do not understand ALS to give high quality care.

So many hard decisions, I do know as I've been there. My Chris was gone 11 months after diagnosis and had very high care needs.

Sorry to welcome you here, but we will do our best to support you in whatever hard decisions you have to make.

 

[skipper66]

My dad is in a assistant living facility in Dallas. But, we don't feel he will be able to stay there much longer. He will be needed 24/7 care. Right now he just rings a buzzer when he needs them. But, when he needs them when he gets worse. He's not going to be able to wait. He's going to need someone with him at all times. A emegency medical alert that they where is a good thing to get for them as well.

 

[alligatorswamp]

Thank you all for such quick and thorough responses!

The feeling I have pretty much been getting from these assisted living facilities is that they don't truly know what kind of care my mom needs. We don't want her in some clinical nursing home setting just because Virginia law says you can't be in assisted living with a feeding tube (I did some calling around and research on that one).

I want someone with her or easily on call 24/7. So, based on all of your comments, my sister and I are now going to explore home care instead. We just have a very tricky home situation. Long story short, the house we have does not have any main floor bathrooms or bedrooms. My parents have been wanting a divorce for the past 12 years while coexisting together in that same home. Needless to say, my mom wants to get out of there. I am thinking I'll look for a rental apartment or one story home where I can sweet talk the owner into letting us install some bathroom rails and such and then sign an agreement that I'll return everything back to normal when the lease is up.

 

[MaxEidswick]

ask alsa/mda for advice ...

 

[affected]

Alligator, I do feel you are maybe not looking far enough ahead. You have already said that she is having rapid progression.

Bathroom rails are not always a very good option for PALS. Without good hand/arm strength they are more dangerous.

What you need is a bathroom that will accommodate using a roll in shower chair, and a toilet that will accommodate this also. A floor area that will allow a pwc to navigate through it, ramps, and plenty of room for hospital bed and electric hoist.

She may not be at this point yet, but things can change suddenly with ALS and you don't want to find yourselves in crisis because suddenly there are needs and you have just moved her into a place that can't accommodate those needs.

Can she come to live with one of you and you have home help come to her there?

 

[alligatorswamp]

Thanks so much for the information, everyone. It's tough, but these are answers we needed to hear.

I wish she could move in with my sister or me but I live in a tiny NYC apartment and my sister still lives at home in the house with stairs. We have decided to rent a three bedroom ground floor apartment. My sister will move in with her and we will get a live-in caregiver. Luckily, we have long term care insurance, Medicare (which for some reason Part B hasn't come through yet), and supplemental insurance. Hopefully all of these will mostly cover the live-in person plus someone to come part-time when the live-in person is off. This thing is stupid expensive.

I got in touch with someone at the DC/MD/VA ALSA chapter and hopefully she'll call me back tomorrow to chat. The apartment building is going to see if they can make any small modifications for accessibility. If not, I'll just make them and then return the apartment back to the way we found it when we move out.

Her rapid progression has become even more rapid since I first posted. She's now mostly in the wheelchair, needs food very soft if not pureed and needs help getting out of bed. My mom's friend suggested we get in touch with hospice as they will be able to help us look ahead as well.

 

[affected]

It sure is tough and that's why we have to answer honestly.

Your solution sounds like it could work well. You are quite right, neither of you have a home that sounds properly suitable, so you are working to a better solution that will work for you all.

Rapid progression is distressing as you feel like you are running all the time and still a step behind

 

[Nikki J]

Sounds like a good plan. Just so you know medicare does Not cover home care as such. I expect long term care will. Our experience with John Hancock is they will only pay for care delivered through an agency. ( we had a family member who had a valid certification as an aide but could not get her pay through the insurance unless she joined the agency )
If you end up with a feeding tube the aides would almost certainly be forbidden from doing anything with it but if your sister is living there she could do feedings when she was home
Long term care insurance can be a real blessing
Make strict rules for the aide. If they are live in then of course they need downtime ( it will be spelled out by the agency) food and use of laundry for themselves and perhaps an occasional visitor in their downtime think about what is ok and what is not. Easier to set expectations in advance than address something after the fact. A common problem seems to be they also do laundry for their extended family and friends. Part time people do not need laundry privileges. Is it ever ok to leave the apartment? My mother's caregivers were not supposed to unless taking her for a wheelchair ride of course unless one of us was there then we encouraged them to take a nap or a walk if they wanted
Talk to the agency about what happens with coverage if the aide is sick. Consider a nannycam. Seriously. My family has 12 years of experience with paid caregivers. Most were fine some were great. A few borderline, at least one criminal, several crazy a some just lazy...