Old 01-03-2013, 11:03 PM #1 (permalink)
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Default Desperate for direction...

My mother in law was diagnosed a little over a yr ago. It started with numbness in her hands and feet. She began tripping and falling. She wore leg braces until that no longer worked. She's now in a powerchair full time. I just don't even know where to start with all the questions and problems we are having. She's on disability from a previous diagnosis of fybromyalgia. So that part was already out of the way. She doesn't qualify for Medicaid, which has SERIOUSLY limited her access to help. That makes no sense to me at all. She has home health available for 1 hour twice a week. Which is basically no help. We are all exhausted overwhelmed and confused. I'm in southeast Arkansas and our healthcare providers here just aren't helping. It's almost like they all treat her as a lost cause. Well she is alive and very much loved right now! Now I'm rambling...
Our current major issue is with a catheter. It keeps stopping up causing a lot of problems. Just today a urologist said he didn't see patients in wheelchairs. Really?! She was given medication for bladder spasms but she's not having spasms, she's leaking because its stopped up. Her family dr gave her medication that we were later told als patients should never take. It dried her mouth out so bad I thought her als had progressed so fast she was already having trouble swallowing which was devastating. Only to find out it was a side affect to this medication. Anyone's thoughts, advice, or suggestions would be GREATLY appreciated. My husband and I live next door to his parents and I'm a stay at home mom, this allows me to keep a close eye on her and be close by when it's time for her to potty. I'm just to the point of total confusion.
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Old 01-04-2013, 06:31 PM #2 (permalink)
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Default Re: Desperate for direction...

Call your local MDA office and see if she can be seen by one of their ALS Clinics.

Why doesn't she qualify for Medicare? Any chance she's a veteran? If so, call the VA.

Wish I knew more to help..
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Old 01-04-2013, 06:46 PM #3 (permalink)
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Default Re: Desperate for direction...

So sorry about your MIL's difficulties.

Does she have a urethral catheter or a suprapubic? Does it leak all the time? Do you have nursing support through your homecare agency? I've had my agency nurse come out a few times to irrigate my Foley catheter which has relieved the problem (except for sometimes when I bear down to have a BM). Is she having the catheter changed every 4 weeks? Is someone doing regular urine tests to check for infection?

I sure hope you can find some assistance for this issue as it can become very uncomfortable.
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Old 01-07-2013, 07:48 AM #4 (permalink)
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Default Re: Desperate for direction...

She's on Medicare, but not Medicaid. Everyone always says, oh if you had medicaid that would be paid for. Very frustrating!
He has a foley (urethra) cath. We have been flushing it daily, sometimes twice to keep it cleared. One dr told her she was having bladder spasms and she's on her third medication for that. There is a white chalky substance in her urine and it seems like that would be an infection...I don't know? No one ever does urine tests. They do change the cath every 4 weeks if it doesn't become blocked and have to be removed.
Home health comes twice a week for one hour each time. They may help her with lotion or fold a load of clothes but that's about all. It's now been awhile she's had a shower. She can no longer sit up. It breaks my heart. We are however shopping for an inflatable tub that goes in the bed. Is this the way to go? Or is there a better option?
Now about pain meds...what does anyone take? I'll do more research on this also but she has severe pain in her legs. The strongest medication she has is Ultram. Which doesn't do much if you ask me.
Thank you all for your help!
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Old 01-07-2013, 03:45 PM #5 (permalink)
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Default Re: Desperate for direction...

My UTI was asymptomatic except for heavy sediment in the urine. Have her doc give the home health nurse an order to get a urine specimen for C&S when the catheter is changed. Is she receiving daily or twice daily catheter care? It's essential because of the catheters's proximity to the anus (Also after each BM.)

If she does require a course of antibiotics, please monitor her for yeast infection and get it treated right away. They are extremely uncomfortable and itchy. I have a stubborn spot in my right armpit since my ROM is very limited and I had to add Di flucan orally in addition to the topical Keta con ozole cream.

I miss showering so very much since I broke my ankle! My aide comes twice a week for a bed bath. Sometimes we do the top half, feet and lower legs while I'm in my PWC then my daughter transfers me back to bed to finish up. My daughter also does a grand job of bathing my bottom when I'm seated on the bedside commode (it has wheels so we can even roll into the bathroom next to the sink for convenience.)

do you know why she's having pain in her legs? My legs are more comfortable with daily passive ROM and stretching. Right now ibuprofen PRN takes care of any joint discomfort I get.

Bio tene makes a whole line of products for dry mouth. I like a chewing gum made by Camellix that's made with green tea and xylitol.
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Old 01-07-2013, 03:51 PM #6 (permalink)
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Default Re: Desperate for direction...

Post went to moderation, look for it later.

There are shower/commode chairs available that have the tilt in space and recline features that make it safe to continue showering even with trunk weakness. They Even have seat belts and high backs for head support.
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Old 01-08-2013, 10:11 PM #7 (permalink)
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Default Re: Desperate for direction...

Deb, you are awesome! Thank you for all you feedback and info you've provided. Teri has said her leg pain is aching mostly. She uses bengay and mainly hurts in the bed. So she spends most of her time in her PWC. She takes baclofen and ibuprofen but still seems to have a good bit of discomfort. We are currently looking for a primary dr to take things more seriously, then maybe orders can be given to home health to do routine uranalysis. I've contacted Arkansas' ALS Asso and will see what information they can give me. I sometimes feel so overwhelmed that I don't even know what questions to ask first...I don't even know where to start because we are so busy keeping up with the daily challenges. My goal is to find a way to get her properly bathed or showered and the cath situation resolved. I really appreciate your response. So how did you break your ankle? When we move Teri I can see where it could easily happen. My husband can lift her but I have to use a lift.
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Old 01-08-2013, 10:30 PM #8 (permalink)
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Default Re: Desperate for direction...

It might be that some of her leg pain may be due to less muscle mass, which cushions the bones... soft pillows or rolled up towels may help, as well as range of motion exercises for her legs. The caregivers would do that daily. Some of us like massages, especially using coconut oil, which is said to have some good benefits.
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Old 01-09-2013, 12:29 AM #9 (permalink)
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Default Re: Desperate for direction...

Ah, the ankle! We got a new manual Hoyer lift delivered that Monday and had, planned to start using it the next day when KK finished her classes. I was doing a stand (more like a dead lift for KK) and 180 turn in our very narrow toilet space. I had made the turn and had my arms locked on the armrests of the PWC ( which KK was sitting in so she could pull down my slacks). My arms gave out and down I went, twisting my L foot between the PWC and the wall. There was an awful crunch as the tendons and ligaments were stretched. It actually pulled a piece of bone from the inner ankle. I also had some soft tissue damage to the R ankle and re-injured soft tissue in my R arm. I just had to go one more time before she went back to campus for her noon class. Dumb, dumb, dumb! Use the lift and any other equipment that will make your life simpler and safer.

We used a transfer board and gait belt for bed to PWC transfers for a long while. We began using the Hoyer full time this month. I can actually get seated better in the PWC with the lift.

I had my cath changed this morning, but had a blockage before the nurse arrived and became very uncomfortable. We called the agency and she came out early. She got an order from my PCP for regular and PRN irrigations. They had supplies delivered so that we have what we need on site.

I use a fully electric hospital bed with an alternating pressure mattress. Although I can no longer turn myself, I can still use the controller to change the foot and head elevation on my own during the night. Positioning is key for comfort. We use lots of pillows to make sure my joints are supported and to control the external rotation of my legs. My feet are best with the heels off the bed and the ankles/feet in a neutral position.

Her Clinic PT should be able to give you some positioning tips and maybe arrange for an in-home visit. Our local Angency PT has been invaluable. She and our OT have done in-home assessments, made suggestions for changes and equipment, and have taught my daughters how to use it, and given them lessons in passive ROM.

I hope you'll be able to find some good local support .

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Old 01-09-2013, 07:54 AM #10 (permalink)
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Default Re: Desperate for direction...

Deb has given very good information across the board. I would emphasize her comments pertaining to equipment to accommodate your PALS progressive functional losses. The home-healthcare workers won't be able to perform functions for which the necessary patient handling equipment isn't available. The circumstances leading to Deb's ankle injury (Oh, Deb it hurt just reading your description - so sorry!) show the importance of getting mechanical lifting equipment.

A hoyer type lift is very versatile. I would advise getting "leg slings" with it in lieu of the several other types of slings available. The layout of her house is important regarding getting access to things like the lavatory sink, toilet, and shower with a lift. The hoyer can be used to lift her out of bed or wheelchair and placed on the toilet or in a shower chair.

Deb mentioned tilt-in-space shower chairs. They are great if you have a shower big enough to accommodate them. One of the first things I did was add a roll-in wheelchair accessible shower. This allowed me to place my wife in her shower chair then wheel her into the shower. I would then get in the shower with her and give her a really thorough shower using a hand-wand shower head. We were able to do this until the last few weeks of her life. It's much better than a bed bath. That arrangement will greatly improve the ability to keep the catheter area clean and minimize the chance of infection, as well as just make you MIL more comfortable by getting a really good shower.

If you don't have the option of a roll-in shower then another option is a ceiling mounted lift in the bathroom. A track rail can be mounted on the ceiling so that the patient can be lifted out of a wheelchair then the lift moved on the track to position her over the tub and lowered into a shower chair in the tub.

The progressive aspect of ALS is one of the frustrating differences between it and other chronic diseases causing functional disabilities. I always felt like I was chasing a moving target. So I think it's best to plan for what disabilities one can likely expect. Getting patient-handling equipment and making house modifications is a really important part of that. I did all the house modifications myself so I don't have specific recommendations on getting financial assistance with that, but I do know that some organizations do provide some funding assistance. Perhaps someone else here can give some advice on that.
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Old 01-09-2013, 09:02 PM #11 (permalink)
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Default Re: Desperate for direction...

You guys are incredible..I'm so glad I found this forum. I've got kids to bathe and get to bed...I want to respond to several comments but will later. My father in law and husband can life Teri but I can't, I can't even get my short arms around her. So I use the lift for everything. One quick question I do have is I wonder why the dr at university of arkansas and the family dr don't have her doing any kind of physical therapy. I know the muscles will continue to deteriorate but stretches and such do seem like it would help with the pain. The only outside help is a nurses aide that will wash few dishes. Just today I had to throw a fit to have a nurse come change her cath. It was totally blocked and she was experiencing pain. We live in a very small town in south arkansas and the healthcare providers basically stink if you ask me. What dr would give us a PT or OT? She has a "family dr" but he knows nothing about als and will admit that. The dr's in little rock seem to only monitor the progression of the disease. But do nothing. When I get a quiet moment I want to put a few more things out there and see what you guys think. Deb-your ankle sounds SO very painful! That breaks my heart. Phil-my father in law is quite the handy man. He and my husband built our beautiful home. So I know he can do any modifications. I just know he feels like he does something and she progresses and whatever it is can't be used anymore. I like the idea of wheeling her into the shower but the stand up shower they have isn't quite big enough.
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Old 01-09-2013, 09:12 PM #12 (permalink)
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Default Re: Desperate for direction...

And on a funny note. I tried to flush the cath this morning only to find out it was just too blocked. But I was pushing on the syringe and it slipped off. I shot water all over that bedroom! Haha In my MIL face all over the bed...even across the room and it hit the wall. Needless to say we had a much needed laugh in a not so fun situation! ��
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Old 01-10-2013, 10:09 PM #13 (permalink)
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Default Re: Desperate for direction...

HI

Wow, you all have just been left to your own devices with little to no help or anything! It's criminal.

Some practical tips for interim care:

1. call the GP and ask for an order for a urinalysis to check for infection. Sediment or discolored urine is a sign of infection, and a rather mild infection can become septic if not treated properly. The doctors office can give either you or the nurse the container to use to save the urine in--and it can be delivered to a lab for a culture. Urine should be clear and light yellow--ALWAYS. Other colors have reasons from dehydration to infection.

2. Sounds like you have a lift--why is the Nurse Aide not using it for a shower when they come twice a week? Most CNAs are trained in their safe operation. Or is there not room to get her into a shower or tub? They make a shower chair that can be used -- even if she needs to be supported in it with gait belts.

3. The ALS association and the MDA both normally have loaner closets for supplies if there are things you need that are not available. They may even have things like shower chairs.

4. If she's having pain--DEMAND it be treated--better yet, she can demand it be treated. Ultram works fine for some--but not for many over time, it seems to stop working. If pain is largely from muscle spasms, things like diazapam may help or other muscle relaxers.

5. If she's able to transfer to a normal toilet, you can also look into a bidet to help with toileting and to keep her feeling fresh and comfortable.

6. If she's not mobile (and even if she is) range of motion exercises should be done on a daily basis. These are simple exercises to learn--anyone in your family can be taught the proper way to do them. Think of them as simply moving the joints in all the normal ways a joint moves. When a CNA does them, they are called passive range of motion. Be sure the CNA stops at the first sign of discomfort or pain. ALL CNAs are taught passive range of motion exercises. While you can not rebuild muscle lost to ALS, you can certainly do things to help keep the joints as mobile and thus, pain free, as possible.

7. If she's in bed for long periods of time--she should be turned every two hours to prevent discomfort and bed sores. Again, bed sores are to be avoided at all costs. Mattress overlays with air are one means to help prevent them. They are relatively inexpensive and a doctor can write a RX for them (if she doesn't have one already)

8. They also make a shampoo you can use to keep her hair clean that doesn't require water. (Sometimes people that spend a lot of time in bed have problems with very oily hair)

9. As Phil mentioned already, you do need a transfer board if you don't have one. They come in various styles--wood are the least expensive. They are good for helping to move from a chair to a bed and help minimize the risk of falls. Also a gait belt (that is wrapped around her waist) should be used when she's transferred. It will also help prevent falls. If you don't have one, they can both be found online--even on Ebay.

10. The skin needs to be checked daily for any signs of break down that are precursors to potential bed sores. The first sign of a bedsore is simply red skin. They can happen very fast--within hours.

The ALS association here in Fl will send someone out to the house to help assess what is or might be needed. Please contact your chapter and see if they provide a similar service!

I'm not sure why the nurse aid is washing dishes instead of doing patient care--but I'd try to insist they are doing what they are needed to do~! Any child can come in and do dishes...but it takes training to do proper patient care.

Last edited by notme : 01-10-2013 at 10:26 PM
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