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Maryl08

Active member
Joined
Jan 16, 2016
Messages
45
Reason
Lost a loved one
Diagnosis
12/2015
Country
US
State
WA
City
Seattle
My sister and I have been caring for my mom with ALS since November. To give some context, we are 24 and 26. Our dad passed away 5 years ago so it's just us. We have no other family to help.

We had gotten into a good routine but just recently it seems like things have gotten worse. My mom has recently stopped being able to get out of bed or off the toilet on her own. She can take a few steps but that's it. She's having trouble with incontinence and has had 3 accidents in the last week alone.

We're also looking for a carer to help as I work full time (twice a week from home) and my sister stays home with her during the week. We are just overwhelmed with the change and need to adjust. I desperately need some advice:

1. I've read that some people's insurance helps cover a carer. What do I ask the insurance? I've called before and they said the plan does not cover anything custodial. It does cover skilled nursing, but will that even be of much help? Also any tips on finding a carer? I've looked on care.com but I am so afraid to leave my mom in someone else's hands..

2. When is the right time to start hospice? According to her respiratory results, she qualifies for hospice now.

3. How have others dealt with incontinence? Should we get her a catheter or is it too early? I'm not sure if it's a good or bad thing.

Really appreciate any advice. We are so tired and feeling completely overwhelmed by all of this.
 
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Nothing is ever too early. If they can still do the catheter surgery, go for it. If your mom qualifies for hospice get it. Things will only get more challenging. You may have copays for hospice or skilled care. Look to see if you have nursing programs in your area. If you do, post on their job board. Have them help with bathing and personal care.

If you cant do the catheter, I would get depends or something similar. Look for ways to make life easy...amazon prime, grocery delivery services...anything that cuts into your time.


When you call for hospice/skilled caee you will have to find out if they can work with your mom. Trilogy machines and peg tubes are not accepted by all hospice or home health groups.
 
Mary, I PM'd you. I can help you recruit a caregiver/discuss hospice options.

Best,
Laurie
 
No advice on finding a good care giver. We got lucky and had a fabulous woman come into our life at the right time.

My mother also dealt with incontinence. On of my regrets is that we didn't go with some sort of catheter. I always felt like it was giving into the disease. Foolishly, we were working with a urologist to find ways to "fix" the incontinence. How stupid!!

One thing we did was double-brief. We would put two Depends on, but cut a whole (about an inch) in the one that was closer to the skin. This would allow the urine to flow and be absorbed into both briefs, thus holding more urine. It was an imperfect solution, but better than nothing.
 
Hi sorry you're going thru this. Everyone's experience is different because each PALS progression is different. So in my journey with this unwanted intruder is medicare in our state suck and my PALS in his healthy state before we met set up his medical insurance for basic so it does not cover skilled care.

So we are in the process of applying for Medicaid but we have found out that our state dropped Medicaid spend down cuz we didn't use it last year and they have this new program that was just implemented August 1st. Hardly anyone at JFS knows how this new program works. So my PALS have been in hospice as an impatient for 3 weeks now.

He is caught in the middle because they say he's over the income limit to get Medicaid. We have a nursing home waiting to take him but no way to pay to stay.

From what i get is the new program has him putting the amount of money he's iver the limit with in an account where the government is the payee. I'll get more info later today.
 
For my PALS and me hospice was a God send they helped me so much with so many services even to where we are now. They took alot of the burden of caring for my PALS off me. They came every day if needed any hour of the night. My PALS has a catheter which can be a really good thing. There can be the UTI issues but it out weighs the real purpose and ease of having one.

Depending on what someone's finances are having a full time caregiver is great. We just could not afford one. COA can help with that too. Counseling On Aging if where you are offers this.

So this is my experience so far hope it was a little informational and hope things work out under the circumstances.
 
I read the title to your thread, and had to post because I am in about the same spot with my husband, PALS. (There is not incontinence, though.) My heart goes out to you.

I am the only caregiver here. Both of our families live in other states, many miles away. Thank God we have our adult son living here temporarily (he just graduated college). He has been wonderful. I know it is overwhelming and may not feel like it, but you two are lucky that you have each other.

I'll keep an eye on this thread for advice.

I do want to add that I hesitate to get hospice involved because I feel it is too early. I'm afraid it would have a negative psychological effect on my husband. It is something I had always planned on getting at the very end.

Good luck.
 
Don't see hospice as meaning end of life, that is such a misconception.
Starting early with hospice or palliative care is highly recommended.
 
depending on your hospice in your area, it may not be the answer you are looking for. for us, it was only a bath a couple days a week and that was it. caredotcom is a good resource for help. you don't need skilled nursing care (again not covered full time) we hired one CNA and had her for 2 years and then just a home health aide for the next 2 years. both ladies were amazing and loving. it is a big expense but even if they are just there part time it will give you girls the break you need. I had my care givers do all the bathing and feeding during the week which relieved me as I worked full time outside the home.

However, don't wait for hospice--they are invaluable for your team.
 
Thanks, good to know about hospice.

Right now I need to start figuring out how I'm going to line up some help. At this point we have nobody coming in at all. Even a person to clean the house would save me a lot of energy.
 
From what I understand, here, hospice will only come in if you are not using any kind of life saving medicine or machine. Also, I've been told that the patient has to have only have six months to live. That's why I think end of life.
 
Some hospices require no life saving machine. Others will allow it if it is already in place. Hospice is not only for end of life anymore. It can be used and ended and started again. If a person lasts more than 6 months, it can be extended. I would check around if your area has more than one?! They aren't all the same.
 
The six months doesn't apply to ALS - they will do another application after six months.

Yes they will have rules on machinery that varies.

I guess it's understanding that palliative care is about comfort care, not an attempt to save or prolong life.

Interviewing each hospice in your area now and finding out what rules they have and how you feel about them would be wise. You don't want to suddenly 'need' hospice if there is a sudden change in your PALS and be finding one under stress and time pressures.
 
I also heard from the ALS clinic that once you apply for hospice, Medicare will no longer cover the cost of power wheelchairs or communications devices. Get them first, if you don't have them already!
 
Thanks for your replies everyone. We truly appreciate this community. Our family is pretty small and we don't have anyone else to turn to for helpful advice (and often people just don't know). I'm planning to interview a few hospices in the area this week. I also posted for help on care.com. There's not been a lot of quality candidates so far but we have hope.. the thought of leaving my mom with a stranger is pretty terrifying. My mom has been having some pain so hospice would be very helpful in terms of pain management. We decided to go with the depends option to manage my mom's incontinence for the moment since she is still able to move around on her own. She just needs some help getting out of bed. We also got a raised toilet seat with side handles which helps her get off the toilet on her own. I think she's happy to maintain that bit of independence for a little while. I'll update everyone once we have some info from the hospices.
 
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